Peggy Lou Morgan

Single Moms

2011-03-29T14:10:00.000-07:00

As single moms we think that we want someone to comfort us and help with our child and it is so easy to get into relationships that don't work for you, your child or both. I had been in that type of relationship for a long time but stayed in it because it did work for Billy Ray until recently and because I adored his grandkids and loved the family as a whole. I was thinking that I wish I had some perils of to advise young single moms who might be in this type of situation. Telling you to keep your eyes widen open doesn't work if the view is different than it will be in a year. When Billy Ray's Dad died he was determined to have a new Dad. There were some really embarrassing moments. I remember being in our little neighborhood restaurant shortly after Raymond died. We knew most of the people in there and everyone loved Billy Ray's charm. This night was no exception - the minute he opened his mouth the place grew quiet. He said "Mommy, Daddy died and I want a new Daddy." I told him that it doesn't happen that fast and told him the story about how Raymond and I had prayed for a long time to for a child before we were able to adopt him. I told him that he would have to be patient. A couple of nights later we were in the same restaurant and he loudly announced "Mommy you say be patient for a new Daddy. I waited two weeks and I want a new Daddy tomorrow." The whole place just roared it was all I could do not to laugh. My secretary put an ad in the singles column shortly thereafter. We didn't meet Larry until about a year later. It seemed good for all three of us and his extended family. It wasn't long until he stopped working and so on the story goes. The best that I can advise is get to know the person for yourself before too much interaction with your child. I do think there needs to be some introduction early on because if he or she can't handle being around your child you will be brokenhearted if you introduce your child after you are attached. Hard as it might be to understand this it is a lot better to be alone than with the wrong person. I didn't announce the divorce on any of my sites because of the internet stalker that has appeared every now and then. I wasn't sure that I wanted to advertise BR and I being alone. However, I have always shared with you, my readers, openly in an attempt to make available anything that will help in your journey with your child. If any of you have stories to share with others you can put them in the comments section. Until next time, Peggy Lou Morgan www.peggyloumorgan.com (for a list of my other sites)

What We Don't Know - Can it Hurt Our Children

2009-10-31T17:40:00.000-07:00

I have been haunted lately by the reality of what we don’t know that might make a real difference in the lives of our children and adult children.

As most of my regular readers know, Billy Ray has chronic pancreatitis, which comes with severe pain and other issues such as pancreatic insufficiency, which has similarities to diabetes. When he was originally diagnosed, I was told that it was caused by Depakote, which he had taken for a number of years for his bipolar. Early last summer he was referred to the chronic pain management clinic at OHSU. There I learned that they see many patients with Down syndrome and pancreatitis.

During research for my first book I spoke to several doctors and medical schools about how much training medical providers are actually given regarding children and adults with special needs. The phrase “touched on lightly” seemed to come up in many conversations as an example of how little actual training in special needs was provided to medical students.

According to the National Association for the Dually Diagnosed (an association for people with both developmental disabilities and mental illness diagnoses), a survey of doctors in the state of Illinois found that, out of 312 respondents (a 24 percent response rate), 95 percent acknowledged that they treat patients with developmental disabilities and 70 percent acknowledged that they had no formal training in the area.

In the foreword to Parenting Your Complex Child, genetic counselor Kate Crowe alluded to the problem as well:

“Medical researchers don't study many complex children. As health care providers, we depend on the published research to inform us so we may provide advice and guidance to families. If a patient is "complex", and doesn't fit the description of a single condition described in the research literature, we are left with little to share. Teaching parents to observe and problem-solve empowers them to fill in the information gaps for themselves.”

In Billy Ray’s case the enlarged pancreas, which may have been the beginning of the pancreatitis was not found easily. He had been sick for a couple of months and nothing definite enough to be causing his rapid deterioration could be found. I have written about that experience here.

As shared in the post linked above, when I took Billy Ray to the emergency room in July 2005 the emergency room doctor wanted to send him home on increased pysch meds. The cause of his severe pain was only dealt with after I advocated strongly (read that blew up) and further testing was done.

The more we know about his medical needs the more we are able to deal with his behavior issues. It has certainly made a difference in his life. I can’t help but wonder with doctors not being given enough information about things that might be common in certain disabilities and parents having no way of knowing, how many behavior problems are being treated with pysch meds (which don't really work anyway) when they are really medical issues.

Until next time,

Peggy Lou Morgan

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Websites:
Peggy Lou Morgan.com
Parenting Your Complex Child
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Blogs:
Parenting A Complex Special Needs Child
Parenting An Adult with Complex Special Needs
Peggy Lou Morgan
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Wellsphere
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Autisable

Marriage Planning for Adults with Disabilities

2009-10-31T15:32:00.000-07:00

Adults who experience disabilities have many of the same dreams that adults without disabilities have. Marriage is one of those dreams. Unfortunately, the same dream can bring complexities that might not occur for those without disabilities.

Based on contacts from parents since Parenting an Adult with Disabilities or Special Needs was published I wish I had dealt with the issue in more detail.

Finding that perfect mate brings up many issues by itself. Love, acceptance, and tolerance can be a challenge in any marriage; however, where one spouse must be able to tolerate or take on more than the average spouse it can become even more complicated. It is very awkward. Many people who don’t experience disabilities have made poor choices in spouses. Maybe things that were not obvious at marriage show up in later life and are not tolerable to one spouse. That can certainly be true for disabled adults too.

There is also the possibility of potential spouses who want to marry someone who experiences a disability for the wrong reason. We have all heard the horror stories about people who marry someone with special needs to take advantage of them financially. Others may genuinely want to take care of the person but once married it is not what they expected. Both situations can be devastating to the person with disabilities.

As parents, we want to protect our children and the tendency is to go to all extremes in that pursuit. Our objectivity in evaluating a proposed spouse might be compromised by our knowledge of our child’s needs. It might be harder to see the value of such a relationship to our adult children.

It is further complicated by laws both state and federal that impact a marriage. The Social Security Administration policies do affect marriage for a person classified as “Disabled Adult Child” for their purposes (usually drawing on a disabled or deceased parent’s claim). The adult child may lose all benefits including Medicare unless he marries another “Disabled Adult Child”. Even SSI recipients who are not classified as disabled adult children may lose a substantial part of their benefits if they marry.

I have heard of cases where a minister actually conducted a wedding and the bride and groom considered themselves “married” in the eyes of God but they were not legally married so they wouldn’t lose their benefits. I can only imagine the complications in those cases. Others have decided to marry anyway and lose benefits. The extreme poverty it brings further complicates their disabilities.

I have often thought that if Congress would only realize that Social Security
policies actually end up costing taxpayers more, maybe they would look at adding some flexibility. For example, if two people receiving disability benefits marry, they will lose part or all of their benefits. Suppose both were receiving funding for in-home support staff because it would not be safe to be alone but one support staff would be adequate for both. It also might be that they could help each other more and require less paid help.

Most states have their own laws about whether guardians can refuse a disabled person the right to marry even if it is not in their best interest. Thus, it is important to get legal advice from an attorney or advocacy center in your own area to determine how to adequately deal with the situation if it arises or, in the best-case scenario, to be prepared before it actually arises.

Until next time,
Peggy Lou Morgan

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Websites:
Peggy Lou Morgan.com
Parenting Your Complex Child
Lighthouse Parents

Blogs:
Peggy Lou Morgan
Parenting A Complex Special Needs Child
Parenting an Adult with Complex Special Needs
Amazon Blog

Other Sites:
Wellsphere
Tangle (formerly GodTube)
Autisable

Technical Glitches

2009-10-31T12:17:00.000-07:00

I have been trying to follow the publicist assistant’s advice to combine the blogs for both of my books into one blog. However, I have been having great difficulty figuring out how to get the feeds to various places switched. For example, Wellsphere feeds one blog to their Autism community and the other to the Down syndrome community and they can’t feed the combined blog to both communities. I thought I had it fixed for Amazon Kindle readers but apparently not.

For now I am going to write posts of the two blogs and post both of them on the combined blog as well. Hopefully, I will get things switched at one point be down to one blog.

Thanks for your patience with me.

Peggy Lou

Billy Ray and Tonka Begin Their Life Together

2009-09-10T13:44:00.001-07:00

As stated previously here and here we are starting with a new service dog puppy. We met Tonka at 8 weeks old and the plan was for the breeder to give him basic obedience training and keep him until he was about six months old.

After conversation with our veterinarian, it was decided that it would be safer for the puppy to take it at six months old because Billy Ray can play rough with his dog and an older puppy could deal with that better. Additionally, training his first two dogs to adapt to him, both of whom were 6 months when we started, had worked well.

Tonka seemed the perfect choice at 8 weeks old when we met him. However, you know what they say about the best laid plans. The breeder was very ill and unable to work with Tonka so he came to us at six months old somewhat unsocialized and afraid of everything and everyone. He had apparently been growing rapidly and was very thin as well.

Dr. Pickering had me interview trainers to help socialize him and put him on a great puppy growth formula food (he gained 16 lbs. in three weeks). The trainer I selected Diann Hecht of Happy Tails has been coming to the house weekly for the last four weeks. Diann says that he is without a doubt one of the most difficult puppies she has worked with in her 15 years of experience but we are making steady progress.

He was resistent to being inside with the family and his crate (to sleep in) and hid outside every chance he got. He would take treats from our hands but not get close enough to be petted or caught in the beginning. In order for his return visit to Dr. Pickering he had to have medication to partially sedate him and we still had great difficulty getting him there. He refused to walk on the leash - just flopping on the ground and digging in. The medication to calm him and the vacinnations apparently worked together to relax him the day of that visit. We put him on the couch on his return from Dr. Pickering and were finally able to snap some picks and allow Billy Ray to enjoy him more than he had been able to since arriving on August 8. Here are a couple of pictures (if you are reading this on Amazon or aren't able to get the pictures go to :

He is still fighting the leash but we are working on it. However, he will now fetch for Billy Ray and for me and continues to take treats.

Today I am happy even though he chewed up my lawn swing because it is a sign he is overcoming some of his fear. He was afraid if it moved even in the wind or if we were sitting on it. However, I looked out this morning and he was sitting on it. There is no way he could have gotten into it without it moving so he must have overcome his fear of that. There first time I saw it I grabbed for the camera but he was down. I calmly told him "no chew" so as not to add to his fear. Later he was back and here is what I saw because I had the camera in hand this time:

Who knows how successful Tonka will be as a service dog but Billy Ray already loves him and we still have Penny Lane for the present time. Billy Ray has been experiencing increasing difficulty with his pancreatitis and Tonka already brightens his days so maybe that is enough for today. We will keep working on it and keep you posted.

I will update you on Billy Ray soon. He had an MRI today and I will know more soon. His "Dr. Brice" has returned to the clinic from his leave of absence so Billy Ray is returning to him next week. They are truly buddies and I think that will make Billy Ray more comfortable dealing with his health situation.

Until next time,

Peggy Lou Morgan

for a complete list of my sites see www.peggyloumorgan.com

Welcome to My New Blog

2009-06-08T13:32:00.001-07:00

Welcome:

I had sort of built myself into a dilemna of which blog to post what topic. Several of the items I want to cover relative to my newest book Parenting an Adult with Disabilities or Special Needs really need to be covered for parents of younger children who experience special needs too because we get new readers all the time. Thus I am combined both of my parenting blogs into this one.

Basically, I am planning to go over the documentation from Parenting Your Complex Child especially as it relates to preparing notebooks to be available for your adult child. I hope to do some of it in video blog format posted here.

For those of you following my blogs on Amazon (where I had all my blogs feed) please be aware that they have changed the way they will post author blogs. The blogs will no longer be on the book detail page or Author Connect blogs. They have started a new program called Author Central and you can find my blog on my page here. Presently this blog and my Lighthouse Parents Blog are being fed into that page.

Hopefully it will be easier for you to get information from my blogs with these changes.

Until Next time,
Peggy Lou Morgan
Websites: Parenting Your Complex Child , Lighthouse Parents, and Peggy Lou Morgan
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Lighthouse Parents Blog
Tangle Video Blog for Lighthouse Parents
Wellsphere Page
Yahoo Group

Building Relationships that Bring Joy and Protection for Your Child

2009-05-28T17:00:00.001-07:00

I have been posting stories of abuse and literal torture on my other blog here and here. While this post goes along with the idea of protecting children and adults from that kind of abuse I decided to put it on this blog where more parents of young children would see it.

I believe the best protection for children and adults from abuse is to have relationships with people who will stay involved and aware of what is going on in the life of your adult child. As stated in those posts some have said they do not have time to establish those relationships. It does take time but adds immeasurable value.

Billy Ray’s best friends, Donna and Max, are an important part of his life. I know that if something happened to me they would be calling him, visiting him, and checking on him just as they do now. The relationship he has with them is not just for his benefit. I know that he touches their lives too. In fact while they are on vacations, etc. they send him cards that say how much better their lives are because he is in it and gifts that have so much thought in them that I know he is always on their minds.

Donna makes the high fiber cookies that Billy Ray needs for regularity. They are the same recipe that I make (off the oatmeal box) but he will eat them better if Donna makes them.

These pictures of Billy Ray blowing out the candles on their birthday cakes show the affection they have for him.

They are always on his mind too. He has a picture of Donna and himself on the refrigerator. He looks at it several times a day and talks about her each time (see picture below).

Recently I was having a conversation with another friend about Billy Ray’s relationship with Donna and Max. She commented that Donna and Max see Billy Ray as a person not just a “special kid” as others might. This is the kind of relationship you want for your child.

Thinking back over the developing friendship there seems to be some key aspects that have made it work:

Donna and Max do care about Billy Ray. They are also willing to deal with a bit of discomfort at times. (For example, when they were here for dinner once and I started his bath before they left. He started removing his shower wrap in front of Donna which was something she wasn’t prepared for.)

It seemed important for Billy Ray to be understood for who he is so as I do things with him and for him in their presence I would explain why he needs things a certain way.

As they began to know him better, Donna felt comfortable asking questions that helped her to understand him even better.

This relationship impacts Billy Ray and provides a sort of protection; however, it also contributes a lot to community acceptance. People are always telling me that Donna talks about Billy Ray constantly. Billy Ray, as seen through his friend’s eyes, is even more accepted as a person. Others are willing to take the time to get to know him because of the stories she tells of fun things he has said or done.

While there is not time to form a lot of relationships for your child is good to have more than one. Donna and Max are closer to my age than to Billy Ray’s age. I know that they will always be there for him if they can but someone closer to his age would be a great back up.

Until next time,
Peggy Lou Morgan

Blogs: Parenting A Complex Special Needs Adult and Lighthouse Parents

Amazon Author Blog

Websites:
Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com

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Parenting Your Complex Child Yahoo Group

The Horror Continues

2009-05-20T13:53:00.000-07:00

It seems the horror of abuse and even torture of children and adults who experience disabilities will never end. Just last week I blogged about the "Fight Club" Everyday there seems to be new stories. Yesterday my husband gave me a link about abuse in the public schools and Kev Leitch posted Autistic man tortured

I don’t think that we will totally eliminate abuse against people with disabilities anymore than we will totally stop the abuse and murder of vulnerable children or others who don’t experience a disability. However, there are things that will help protect our children.

I have often written about awareness versus what I see as true acceptance that will make a difference in the life of an individual. See Awareness that Brings Acceptance, The Awareness Controversy , and Community Bulding and Awareness.

I initially started what I came to call “creating a community” for Billy Ray because of difficulty we had in his acceptance in public environments such as stores and restaurants. I laughingly refer to it as creating your own Little House on the Prairie even in large metropolitan areas. You will have only so many stores, restaurants, recreational establishments, etc. that you go to with your child or adult child. That way your child and the people in those environments get to know each other better than if you go to new environments each time.

It takes times to establish those relationships (outlined in Chapter 14, Parenting Your Complex Child) but they bring comfort and security to both your child and those in his community. Thinking about this post while we were having lunch at Billy Ray’s favorite restaurant today, I looked over at the cook and imagined if Billy Ray and a friend were having lunch there and someone harassed him. I could picture him coming out of the kitchen to intervene for Billy Ray in a heartbeat because of the affection he demonstrates for my son. The same with the clerks in our local grocery store and BiMart because he is someone they know and look out for.

A recent interview question was about how parents can find the time to build relationships for their kids. It certainly can take time but it is vital to your child’s happiness and protection. Some of the effort can be done while you are doing things you would normally do such as grocery shopping. Building relationships with the neighbors is not only friendship for your child but they will be more likely to watch out for him.

The more people involved in his or her life the more likely that his community of friends will be there to protect him when you can’t be.

Until next time,
Peggy Lou Morgan
Blogs: Parenting A Complex Special Needs Child , Amazon Author Connect and Lighthouse Parents

Websites:
Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com

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Parenting Your Complex Child Yahoo Group

A Horrible Reminder to Plan for Protection of Your Adult Child

2009-05-13T15:24:00.000-07:00

In Parenting An Adult with Disabilities, I talked about assuring that support would be there for your adult child when you can’t be. It doesn’t matter what level of functioning your son or daughter is. If they are living independently in their own home or some facility, they could be abused in some way and terrified to report it.

I walked through the living room in the middle of a piece on a Fox News program and then searched for the story on the web about the “Fight Club” at Corpus Christi (TX) State School for the Mentally Disabled. One of the commentators called it “human dog fighting”.

Disabled residents were forced fight each other by night staff at the facility and it was filmed on cell phones. One of the alleged ringleaders apparently left his cell phone at a hospital and it was turned over to police to find the owner. Police found video of the Fight Club on the cell phone. That is how this terror was discovered. I wonder how long this whole terror for the residents had been going on and would have gone on if the phone had not been forgotten.

According to the ABC News story “One resident is seen on the video trying to run away from his attacker and a large group of employees and residents tracking him through the halls. When cornered, he wails and moans and tells the employees, "I will behave."

This story is horrifying but is an important reminder of why it is so important to plan someone (or multiple friends) who can be trusted to stay involved and check on your adult child regularly when you can’t . Someone visiting the residents regularly would surely have seen bruises, etc.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect Blog, Parenting A Complex Special Needs Child and Lighthouse Parents
Websites:
Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com
Follow me on Twitter
My Wellsphere Page
Lighthouse Parents on Tangle
Parenting Your Complex Child Yahoo Group

Billy Ray Meets Tonka (future service dog)

2009-05-08T21:07:00.001-07:00

We stopped on to meet Tonka on the way to a Mother's Day weekend trip. I couldn't wait to share some pictures with all of you.

The sun was bright and it made it hard for Larry to see the pictures he was shooting. He shot over 50 shots. There were smiles and expressions that he couldn't catch with even that many tries. Billy Ray was elated.

More to come when Tonka gets old enough to come home to Billy Ray.

Until next time,

Peggy Lou Morgan

http://www.peggyloumorgan.com/ for a complete list of my websites and blogs

Parenting an Adult with Disabilities or Special Needs Receives Award

2009-05-07T16:22:00.000-07:00

I am so honored that Radical Parenting found my book to be one of the 50 best parenting books.

Until next time,

Peggy Lou Morgan
for a complete list of my sites www.peggyloumorgan.com

Big Shoes (Paws) to Fill - New Service Dog

2009-05-04T14:38:00.001-07:00

It is not clear to me what the various feeds pick up. I know that my Amazon blog is not picking up the video but I'm not sure about these pictures. If you can't see the pictures just click on the link to the blog it's from and it will take you to where you can see the pictures.

This is Tonka (yellow lab, named because he is the biggest and most fun of the litter), who is 9 weeks old. He is going to become Billy Ray's service dog when he is about six months old. We are going to visit him this weekend.

This time we are going to do things a little different because of Billy Ray's health and my schedule. The breeder (whose name and contact information I will reveal when she is ready for that) is going to do more of the basic training before I start working with Billy Ray and Tonka at about six months old. As I have been taking notes and talking to the breeder about what is important in terms of training, I have been thinking about what Billy Ray (and all of us) has gained from his dogs and what we have learned.

Dogs have been important to Billy Ray. His first experience with a dog was in foster care before we adopted him at 15 months old. He was a little much for my older poodle on placement so the veterinarian selected five month old Katie for him.

Together Katie and Billy Ray, then about 4 years old, went through basic dog obedience training and he learned how to handle her pretty well. He had her from the time she was 5 months old until about 14 years old. She was a pet not a service dog but she made a real difference in his life.

As Katie was aging, I began to look at a replacement. I looked into the idea of a service dog but couldn't find appropriate trainers. Somehow I found Dana PawsAbilities in northern Washington state. Her organization is primarily obedience training not a service dog trainer but she took time on the phone to give me tips for making it work. I remember the first thing she advised me to figure out was what jobs the dog would be expected to do for Billy Ray. I don't know why Dana didn't get impatient with me given it wouldn't benefit her business but she was always helpful.

Thanks to Dana's help and Carolyn Jones, 4-H leader and friend, who found us what was to become the perfect service dog for Billy Ray, we had several good years with Sheba. We took Sheba almost everywhere with Billy Ray. His support staff took her with him to his school program and other activities. The picture below is my favorite - he is shredding papers at Silver Falls School District Office and she is right there comforting him.

Unfortunately, Sheba, while perfect for Billy Ray had one flaw, she loved to chase cars along our fence when they drove onto the neighbors property. She injured her leg. We treated it for a long time and it was felt that surgery wouldn't help. Eventually she couldn't work with Billy Ray but remained a pet until there was nothing else that could be done to keep her comfortable and we put her down.

Enter Penny Lane who was in foster care with Heartland Weim Rescue and we heard about her through our friends Cliff and Shela Nielsen . Through a chain of events and the fact we had a friend's son coming home from college in Olathe, KS and could transport her Penny Lane came to be Billy Ray's next service dog. She was the dog no one wanted and was at risk of being put down because she had problems with her ears and was partially deaf. I had provided similar care to Katie when she had problems with her ears so was not frightened away from Penny Lane. However, what I didn't realize was that Katie was well trained before her ears became and issue and we needed to provide more extensive training to Penny Lane because she was a service dog whereas Katie had been a pet. Training for Penny Lane has not been very successful and she has become much more of a pet than a service dog.

However, Penny Lane has contributed to Billy Ray and to me in ways I could have never trained her to do. We got her about a year before Billy Ray had the health crisis and ventilator episode shared previously. When he began go through breathing changes which have never been thoroughly diagnosed but he appears to literally stop breathing and Penny Lane somehow senses it and comes to get me. I can sleep because I trust her to monitor it. I wrote about it here .

Below is a picture that shows the relationship between the two. He doesn't really want her to sleep on the bed because she lays on the covers and he can turn over as well. However, this one morning he was dressed and went back to bed and crawled up beside him on his other pillow. He covered her up and fortunately this was one of those Kodak momemts I didn't miss.

As a rescue dog her exact age was a guess. It was suggested that she might be 2 years old but our vets have suggested she was probably 4-5 years old when we got her nearly 5 years ago. She has had multiple health issues the entire time but she has been manageable. Her weight has been a constant struggle and it was just believed that Billy Ray gave her too many bites (which he does) but it was finally discovered that she has a thyroid problem and we have been treating that. However, recent tests performed show that she has liver issues as well. She is being treated for both and is on a special diet for the liver issues. Her vet advised that we would probably be able to maintain her another year but two years was stretching it.

Thus, it seemed time to consider a new service dog. There are now service dog agencies that we could work with but because it is used a specific way for Billy Ray and I want to work with it myself, we are going through a breeder we know. I hope to share on pictures and video blogging when we get started training.

Until next time,

Peggy Lou Morgan

for a complete list of my blogs and sites see http://www.peggyloumorgan.com/

Preserving the Parents' Expertise

2009-04-23T21:09:00.000-07:00

Part of a question from an interview I did recently has haunted me. It suggested that some might feel transition planning was letting go in the sense of giving up on an adult. I decided to chat with you in a video blog today about that. I am pasting the video below. Depending on what feed you are reading this post on it may not come through. If not, go to my video blog page here .

Until next time,

Peggy Lou Morgan
For a complete list of my sites see www.peggyloumorgan.com

Our Latest News 4/6/09

2009-04-06T12:53:00.001-07:00

Hi Everyone:

There is a lot going on right now and I have wanted to touch bases with you for a while.

First, Billy Ray is somewhat the same as when I last posted. He still fights chronic pancreatitis but we are learning to anticipate pain and catch it as early as possible so he doesn't need the stronger medications for pain. The surgery (Nissan) done in September 2006 which sort of fixed his high degree of acid reflex was checked last week and still in place but he is getting reflux again and it is the cause of periodic choking episodes.

He has good news and bad on the service dog front. The present service dog is experiencing health problems of her own and will have to be replaced within the next year. I have ordered a Yellow Lab puppy which he will get at the end of summer and we will start training her to work with him.

Parenting an Adult with Disabilities or Special Needs seems to be getting pretty good reviews already. I am truly pleased by them. Here are two: Autism Learning Felt and Specialchildrenabout.com .

Thanks to Amazon, I am able to combine the feeds for my blogs in one. If you'd like to read all the recent posts for this blog and Parenting a Complex Adult you can go to the Amazon blog and get them in one location.

Until next time,
Peggy Lou Morgan
http://www.peggyloumorgan.com/ for a complete list of sites

Joe Steffy, a Success Story

2009-04-06T11:36:00.000-07:00

The story of Joe Steffy, who experiences the combination diagnosis of Down syndrome and Autism, is small business owner (Poppin Joe's Kettle Korn). See the full story here .

It is the classic example of what parents working with their adult child can accomplish. The parents did not believe the school district's assessment that Joe would never be able to be independent. Together they ascertained a future that would work for him, set about writing a business plan and getting a small grant.

I was anxious to share these links with my readers because it will encourage us all relative to what is possible for our own children and adult children.

By the way, I have just added the feed for this blog and Parenting a Complex Special Needs Child to my Amazon Blog so that you can read both at the same there.

Until Next Time,

Peggy Lou Morgan

For list of sites see http://www.peggyloumorgan.com/

Your Adult Child's Pursuit of Happiness - Who Will Design

2009-04-05T19:43:00.000-07:00

Everyone seems to have an opinion about what will make your son or daughter happy in adult life. Unfortunately, some of it is based on what is most prudent for programs not on person centered planning.

Whether he is high functioning and can learn to self advocate or needs a more involved advocate he has a right to be totally involved in choosing a future that will make him happiest. You can help him on the journey to pursue what will be a happy life but he needs to be as involved in those choices as possible.

If at all possible start taking your younger child to I.E.P.'s so she starts to learn advocating from you and to have as much understanding of oppportunities for the future as possible.

In Parenting an Adult with Disabilities or Special Needs, I have included some exercises you could try together to help him demonstrate interest in specific plans. Hopefully, it will be helpful in jumpstarting the conversations between you.

Until next time,
Peggy Lou Morgan
for a list of my sites see www.peggyloumorgan.com

Communication by Behavior (Reading the Signs) Revisited

2009-03-18T17:09:00.001-07:00

This post is revisiting a topic I have covered several times in different ways since the beginning of this blog in 2005. It seems important to touch on it again because several parents have emailed about their frustration relative to their child’s behavior. A common line is “we are held captive to his behavior” or “it is impossible to plan anything because we never know she will respond”. Many want to know what medications Billy Ray takes or what medications will treat behavior problems with their child.

I am not anti medication but we use the very minimum necessary. I have found over the past 24 years of being Billy Ray’s Mom (he was adopted at 15 months old) that medication is a last resort for behavior issues. What works for us is reading the signs relative to his behavior. Two posts on this topic are Change is Coming – Reading Your Child’s Behavior and Reading Signs in my Complex Son. There are many others under the label Communication by Behavior.

When you allow your child to show you what he needs to feel safe and comfortable and adapt his environment, schedule, etc., etc. as close as possible to his comfort level life becomes much more comfortable for him and for the whole family.

Some have written that it is not fair for one member of the family to have things his way. I do understand that feeling. For me, it came to a point that I learned what Billy Ray can and cannot incorporate or understands. His logics are not mine. If he is confused by an aspect of the routine or environment we can get stuck and ruin a day or even longer periods of time. By doing things the way that he can understand or accept, it changes the flow of whatever we are doing. If that means we have to do things differently than another member of the family wishes but we will not get stuck it might well be worth it, depending on the situation.

Others have written that they don’t have time for the documentation, etc. suggested in Parenting Your Complex Child. My response is that being stuck with meltdowns or behavior issues takes more time than we realize. When we learn to read the signs, adapt to the child’s needs and communicate the child as he or she is to the professionals involved, it changes family life as well as the child’s. It takes time and initially a lot more energy than we might think we can muster but in the end it saves time, energy and frustration. It is really a choice of how you will spend your energy and that of your child and how much frustration you can cope with.

As aside, I am not keeping the blogs up the way I want, slower to answer email and moderate comments because I am getting more email and comments these days. I have decided that is partly my fault because many of the things I would respond is already on the blogs but hard to find because it has been archived by date. I changed the blog template today and am in the process of labeling every old post by categories. If you have any suggestions or comments please let me know.

Until next time,

Peggy Lou Morgan
For a list of my blogs and websites see http://www.peggyloumorgan.com/

If Only I Could Be More Like My Son

2009-02-05T15:07:00.000-08:00

Looking at Billy Ray, now 26 years old, this morning I was thinking if only I could be more like him. He is full of life and dressed in slacks, white western shirt, and blue sport coat wanting me to help him with his belt and tie. That’s been his favorite attire since this little picture at 3 years old. On the other hand, my attire this morning consisted of a warm bathrobe, slippers.

Everyday is an adventure from the time he arises in the morning until his eyes finally close at night. While I am trying to get my acid reflux meds down and survive until I can have coffee to get my eyes working to do his blood sugar test and read my email, Billy Ray is raring to begin his day. If only I was more like my son.

I love the piece by Dr. Dennis McGuire of the Adult Down Syndrome Center in Park Ridge, Illinois, called If People with Down ’s syndrome Ruled the World. Things would surely be different if that were the case. Take a look at it here – hopefully it will give you a chuckle and a better understanding of people who experience Down’s.

Until next time,

Peggy Lou Morgan
For a complete list of my sites http://www.peggyloumorgan.com/

Don't Worry, Be Happy

2009-01-05T15:24:00.000-08:00

I was struggling with what to title this post. Technically, I had written some of what this post covers in a prior post; however, there have been lots of news about program cuts, etc. and I felt like I needed to post again. The title I might of used sounded like the prior post. This title kept coming to mind. Can't remember if it was a song or a commercial but I remember it was a slogan from a few years ago.

In his recent program Geraldo Rivera called “The Waiting List”, Geraldo at least twice mentioned that he has been hearing folks talk about returning to institutionalizing people with disabilities. In a video on his Fox News website Geraldo talks about why he made this program and he also provides clips from his famous expose` on the Willowbrook. You can view that video by clicking here.

I know that news and talk about budget cuts is scary. The anxiety of “the nagging question” of what happens to our children when we are gone is why I wrote Parenting an Adult with Disabilities or Special Needs. With the concerns expressed by Geraldo and others we need to be proactive in terms of having people who will understand your adult child’s needs and be strong advocates when your voice is less available to your adult child.

There are things you can do in the meantime to protect your adult child. Instead of being stuck in anxiety over what might happen to your child, expend that energy on planning for him.

Some adults with disabilities are high enough functioning they could live independently but still need someone to check in occasionally. Generally, that service is provided by semi-independent living programs. If funding for those services were cut you could easily have a backup from your church or circle of friends. Instead of worrying about what might happen, think about who could provide a piece of what your child needs. It is amazing how much relief comes from being proactive rather than worrying.

Until next time,
Peggy Lou Morgan
Author of Parenting Your Complex Child (AMACOM Books 2006) and
Parenting an Adult with Disabilities or Special Needs (AMACOM Books January 2009)
http://www.peggyloumorgan.com/ for a complete list of websites and blogs

Great Article re Siblings of Children with Special Needs

2009-01-05T12:20:00.001-08:00

The New York Times Well blogs had a piece on a report done by National Public Radio on Marissa Skillings, a 15 year old whose 11 year old brother, Andrew, has Asperger’s syndrome.

It is great to see stories like this one that bring out the struggle Marissa (and many others) experience as siblings yet clearly show that she loves her brother as he is. It is not easy to live with his noise and meltdowns but as she says if he was different he wouldn’t be the Andrew she knows and loves.

Since so many people with disabilities were housed in big institutions for decades society really doesn’t have much understanding about what life is like for the person or her family. As we share with the media or just friends what we experience, including the joy, it so enhances awareness and acceptance by the community.

Until next time,
Peggy Lou Morgan
Author of Parenting Your Complex Child (AMACOM Books 2006) and
Parenting an Adult with Disabilities or Special Needs (AMACOM Books January 2009)http://www.peggyloumorgan.com/ (for a complete list of websites and blogs)

Interview with Billy Ray on AM NW

2008-12-30T14:26:00.000-08:00

I was looking through some things this morning and found the video of an interview I did on KATU's AMNW program in September 2007. This interview is the only one that Billy Ray has participated with me and I thought you might like to see it. We couldn't get it to upload on the blog but put it on youtube here if you want to watch it.

As some of you experience with your children, sometimes you just never know how he feels about things. KATU is the station we used to watch when we lived in the Portland area so he was familiar with most of the news anchors. One of the hosts for AM NW used to be the anchor of the early morning news and he called her "Red" because of her red hair. He was so spellbound that he didn't say a word in the interview and wouldn't talk to anyone else the whole time we were waiting.

He called my first book that "damn book" I guess because when I was working on it I couldn't do everything he wanted me to do. One day we were in the bank drive up window and he wanted to know where we were going I told him what he was going to do with Dad and that I was going to go work on my new book. He said "tv" so I asked if he wanted to be on tv again. His response was "tv- go puter, work" and he repeated it daily until the new book was finished. Apparently he liked it.

Until next time,

Peggy Lou Morgan

http://www.peggyloumorgan.com/

Planning for and Protecting Your Child or Adult Child Who Experiences Disabilities or Special Needs

2008-12-03T11:02:00.000-08:00

I have been thinking about planning for and protecting my son, Billy Ray, even more lately because of my recent health problems while I was writing my second book. The stress of the present economic situation adds to the concern. Budget cuts are threatened in many areas. That adds another dimension to “that nagging question” (what will happen to my child when I can’t be there for him). Funding for programs that are working for him may be cut, facilities and homes may close due to economic constraints. Even a more independent adult child may have difficulty getting the things he needs in bad economic times. I find myself wondering what if this economic downturn happened after I can’t change planning.

We are not the same close knit society portrayed in programs like Little House on the Prairie and other television programs or movies. Neighbors were there for neighbors and could be counted on to care for children if something happened to their parents. Families are more mobile and lead busier lives so they are not always close. We have learned to depend on the government rather than each other. As we explore what the government will really be able to do it gets scary.

Sometimes there is great resentment on the part of some taxpayers about spending money for special education and other programs for people with disabilities even when times were not as difficult as they are presently. I believe that is because so many of our children are never really known as individuals with strengths and weaknesses like everyone. The more community awareness is improved the more accepting society is of the need for programs and other assistance.

Community awareness that actually brings change is that which helps our children to actually be known and understood to become a part of the community and have others involved in their lives and vice versa. As our children are known and understood protests about their need for programs and other adaptations are reduced. Sometimes it is the community needs who needs training as I wrote here.

It would be easy to become paralyzed with fear for our children. There is peace in knowing that you have done everything you can do to assure a happy and secure life for him or her. In my new book, Parenting an Adult with Disabilities or Special Needs and in future blog posts and video blog, we can share the journey together to protect our children or adult children. There are so many things that we can do such as:

· Assuring that he or she has friends who will stay involved.
· If appropriate, training her to be a self advocate.
· Having various people involved in her life who will maintain different roles.
· Maintaining her “story” so that she can share her memories and history with new people and old friends.
· Appropriate estate planning documents.

That is only a few ideas but it sounds like it will take a lot of energy. Worrying about your child’s future takes a lot of energy too but the peace that comes from planning for and protecting your child is revitalizing and reassuring.

Until next time,
Peggy Lou Morgan
For a complete list of my websites and blogs see www.peggyloumorgan.com

Wellsphere - a Valuable Resource on the Net

2008-12-01T13:51:00.001-08:00

I am so pleased to invited to participate in the Wellsphere internet community. There is so much for everyone on this site. I urge you to take the time to review the various communities and resources available there. Resources include blogs on many different topics as well as communities on more topics than imaginable.

This blog will now be carried on the Autism Spectrum community. There also communities for Down syndrome, Adhd, bipolar and many more.

Many types of experts are available for you to inquire from depending on your particular interest. You can set goals for you or for your child and they will send you tips and encouraging reminders if you wish.

Wellsphere has a new Health Maven program where you can ask questions re your various interests for you or your child. They describe Health Mavens as: “Health Maven is the term we use to describe the carefully-selected, knowledgeable, health and healthy living experts who volunteer their time to help support community members by answering their health questions and concerns. Health Mavens include doctors, nurses, psychologists, personal trainers and nutritionists, as well as patient experts and opinion leaders. Health Mavens are wonderful, caring people who are committed to helping others live healthier, happier lives.” I was very pleased to be asked to be a Health Maven for the Autism – Autism Spectrum Community. You can read more about this program here .

I'm so humbled by Wellsphere's award to me of the Top Health Blogger Badge (displayed on the sidebar).

Take a look at their site for yourself - there is truly something for everyone there.

Until next time,
Peggy Lou Morgan
For a complete list of my sites go to peggyloumorgan.com

We're Still Here - 12/1/08

2008-12-01T13:24:00.001-08:00

Hi All:

I feel a bit out of touch with a lot of you. It has been hetic. For those of you who have written I'm recovering pretty well and back in the groove more and more. We are learning to deal with Billy Ray's chronic pancreatitis and doing better at managing his pain so that he is able to enjoy life so more.

Hard to imagine that Parenting An Adult with Disabilities or Special Needs: Everything You Need to Know to Plan for and Protect Your Child’s Future (AMACOM Books) is finally coming out in January. It seemed as if it was never going to happen and now it is next month. I am even more excited because several of the ideas are even more important than I knew when writing it because of all the budget cuts and economic things going on everywhere.

I have wanted to start video blog conversations with you for a long time. In the process of figuring out how it would work we had a computer crash and had to replace a computer and now Larry is trying to figure out how to get the video editing software to work on Vista - the new computer. I'm bugging him because I am anxious to talk to you.

While the new book has much to do with adults and transition planning there are many things that you can start soon. For example, I wished I had started the form of Chronological History that I talked about in Parenting Your Complex Child (AMACOM Books 2006) much younger. The same applies to many of the skills I am teaching Billy Ray now to have his own home (as soon as we can get him more medically stable). I hope to video blog him learning new things when we get the video working.

Finally, I have gotten opportunities to communicate with lots more people through other communities on the internet which is thrilling. I am going to do posts introducing those to you within the next couple of days.

Until next time,
Peggy Lou Morgan
for a complete list of blogs and websites check out my primary website

Who Needs Training Children or Adults with Special Needs or the Community

2008-08-13T11:48:00.001-07:00

Most parents who have children with special needs understand all too well what happens when there is confusion over “what we doing” or “where are we going”. Many of us spend hours preparing schedules or visuals to help prepare our kids for understanding what is expected. Changes can create such confusion for our child that he or can have a meltdown, sometimes in a public place, or in refusal to go or to do what is necessary. Some parents have said it feels like being held captive to our child’s reaction.

It seems there is a misunderstanding between everyone involved at times. A child may seem to be unreasonable about his need for consistency. To the outside world a minor change in schedule is a part of life. Flexibility to go with the flow of life is a good trait to survive in this hurried up world but it is not something that is natural to many of our children. A pediatric neurologist once explained to me that when you change the routine of a small child they will get hyper but if you change Billy Ray’s routine it is like taking him to a foreign country where he doesn’t understand the language. The confusion is overwhelming to him so he might flop on the floor unsure what to do next. He can literally get stuck.

Inconsistency from all parties involved impacts the situation greatly. If parents don’t adapt the plan to what will work for our child as an individual and prepare them for an event or task, it is less likely to work. I have been more aware of the fact that Billy Ray lives in a world of people who are less regimented than he needs to be and have their own lives full of demands and details. If he is waiting 30 minutes because someone is late they may have little concept of how confusing that is to him.

I wrote about the temperamental mismatch that Billy Ray and I experienced relative to organization here. Having worked through that with him substantially it has become obvious that he has somewhat of a mismatch with other significant people in his life and the community as a whole.

Maybe it is just me but it seems that the lack of understanding and actual intolerance is growing rather than the community awareness we advocate for. We have a Catholic Church getting a restraining order to keep a 13 year old boy with Autism away from their services. I have written about that on my other blog here. If even churches fail to adapt to the needs of members who have special needs how can we expect family, friends and the community to.

To compound it we have radio talk show host, Michael Savage describing Autism as "A fraud, a racket. ... In 99 percent of the cases, it's a brat who hasn't been told to cut the act out". See here for more details on his comments.

Thus, the question of the post title who needs the training, the child or adult who experiences special needs or those who don’t experience special needs. The sad thing to me is that it is sometimes easier to adapt and teach people with special needs than to teach tolerance and acceptance to some who don’t have that experience.

Until next time,

Peggy Lou Morgan
http://www.peggyloumorgan.com/
http://www.lighthouseparents.com/
http://www.parentingyourcomplexchild.com/

and blogs at:
http://parentingacomplexchild.blogspot.com/
http://parentingacomplexadult.blogspot.com/

Fireworks and Autism

2008-07-04T21:55:00.001-07:00

Hi Everyone:

Happy 4th.

I was thinking that probably many of us have loved fireworks and had to forego the tradition if our child experiences Autism.

As a child, it was great fun to go to my Grandma's in Weiser, ID because we could sit outside in her yard and watch the fireworks. It was a family tradition both for me and for Billy Ray's Dad. However, after we adopted Billy Ray we found he couldn't tolerate them at all. We thought it scared him. Since he didn't get the Autism label until later in his childhood than most we didn't understand that the noise is intolerable for many who experience Autism.

One year Billy Ray and I went to spend the day with my secretary and her family who were camping on the Oregon coast. They begged us to stay and see the fireworks from a ship on the ocean. I said that Billy Ray couldn't handle it. They told me that the noise was muffled by the water so I decided to try. We loved it. If you ever get a chance to try it for your child who can't handle the noise, it's worth the effort.

Until Next Time,
Peggy Lou Morgan
http://www.peggyloumorgan.com/

Comments - So Embarrassing

2008-07-04T21:50:00.001-07:00

I just came on Blogger to write a post on fireworks and found I had 14 unapproved comments. I don't know why I haven't received notices on on them and some of them are really old. I am so sorry about that. I have been recovering from my little episode on New Year's Eve (see past posts) and finishing my book so I have gotten behind on blogging but normally Blogger sends me a notice when I have comments to approve.

When I was checking them off I came as approved and came to one I wanted to reject and when I clicked to reject just one it apparently rejected the ones checked. They have changed the system on me. If I rejected your comment accidentially I am sooooo sorry please comment again and I will watch Blogger better.

Until next time,
Peggy Lou Morgan
http://www.peggyloumorgan.com/

Frightening Realities

2008-05-01T09:41:00.000-07:00

As shared previously I experienced a minor heart attack on New Years Eve. I am recovering slowly but the biggest issue has been getting and keeping my blood pressure stable.

There is nothing like a wake up call like I experienced to make you rethink everything about planning for a child or adult child with special needs. I will share more about that in my upcoming book Parenting An Adult with Disabilities or Special Needs which will be out in January 2008. I did want to share what happened yesterday.

As stated I am getting better everyday but somehow I am still a little nervous about being alone with Billy Ray for extended periods of time. I based that on the fact that I was feeling fine, watching the New Year celebration in New York on television when my husband when to bed at 11 p.m. Then at midnight the episode came out of the blue and I headed to the hospital in an ambulance. Thus, I feel pressure to have plenty of backup planning.

My husband is going to his daughter's graduation from college soon. It is about 3 hours away and he will will gone for two days. Friends of ours are going to be on call incase we need some help. They are true friends for Billy Ray but don't feel comfortable taking care of him for long periods of time.

Yesterday, I called the case manager to ask if I could give our friends his cell phone number the weekend my husband was going to be gone so that in the event of an emergency they could call him. It was my assumption that if something happened there would be "crisis beds" where Billy Ray could be placed temporarily in adult foster care until Larry got home or I was able to take care of Billy Ray again. He informed me that it would do no good to give the cell phone number to our friends. If something happened on the weekend or at night the police are to be called. They would pick Billy Ray up and put him in an adult nursing home.

That would be devastating to Billy Ray on multiple levels. First of all he freaks if a uniformed officer comes to the house. Once we had a "malicious child abuse complaint". An officer in uniform and a protective services worker came to the house. While the complaint was determined unfounded it still did damage to Billy Ray for a long tme. He thought that he was a "bad boy" and was going to jail. For years he and his deceased Dad had watched the television show Cops because it started out in our then city. The theme song "Bad Boys" has stuck in his head. Thus he believed he was going to jail and didn't understand the risk of being removed from me. He was frightened by that prospect for months afterward.

Secondly, a nursing home would not work for him even for a very short period because he requires one to one attention and would wander around. Additionally, his noise when he is confusion would like impact other residents.

That potential is very frightening. It means hastenng consideration of transition planning even if we can't get the most ideal situation for him. At least he would not have the risk of the above.

Until next time,
Peggy Lou Morgan
For a complete list of links to my other blogs and websites go to www.peggyloumorgan.com

World Autism Day

2008-04-02T10:37:00.001-07:00

This morning I turned CNN on and discovered a program in process titled We Have Autism. We do have a tivo but I was not able to rewind to the beginning. Additionally, our satelite feed for CNN was not working well so I missed a lot with the fuzz. However, I loved what I saw and it struck me that it was very positive in terms of showing treatment and hope. There were none of the desperate feelings expressed in video such as Autism Speaks. This presentation gave real hope for meaningful lives for children and adults who experiene Autism.

A comment made by one of the mothers that once you become the parent of a child who experiences Autism you become a parent of all children who experience Autism really struck a chord with me. That has been my experience to a substantial degree. Once I became Billy Ray's Mom I found a deep concern for the acceptance and oppportunities for all children who experience special needs. We become one in so many ways.

I am thrilled that we have a World Autism Day. I hope that somehow we can spread that not just to Autism but to all who experience disabilities.

I am sorry I have been so delinquent in writing. I am physically improving from my New Year's Eve episode and getting stronger. My blood pressure is responding to medications. I am getting anxious to get out there speaking and meeting all of you again.

I will do an update on Billy Ray in the next day or so. Also on my writing and my new book.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com
Parenting Your Complex Child Yahoo Group

That Nagging Question Reappears

2008-01-07T08:31:00.000-08:00

I have been working on my new book about transition planning. One of the chapters is titled That Nagging Question (what happens to my adult child after I'm gone?)

On New's Year Eve I started having breathing problems and had a horrifying ambulance ride. Needless to say no matter how prepared I thought I was that nagging question haunted me all night. They think I had a small heart attack and may have some blockage. As a result, I have been thinking more things through and making notes which I will share with you here as I can and in my new book.

At noon today I have a stress test and another test tomorrow. I will try to post how we are doing on my Lighthouse Parents Blog. If I end up having surgery my pastor is going to post on that blog to keep folks updated on how we are doing.

Until next time,
Peggy Lou Morgan
For a complete list of my sites go to www.peggyloumorgan.com

We're Still Here 11/09/07

2007-11-09T10:20:00.000-08:00

While it may not seem obvious, because I haven't posted for a while, I am working on support for parents of adults with special needs. AMACOM Books has given me the go-ahead on a new book, tentatively titled The Never Empty Nest, which deals with adults. More to come on that later.

In my last post I talked about the importance of having someone to "hold the story". I mentioned one of my step-granddaughters who seems to have a close relationship to Billy Ray. Again, I want to say that he has good relationships with others in the family but this one just seems a natural. Elora is also older.

Elora was here for a long weekend so I got a chance to talk with her about my thinking that she would hold Billy Ray's story and what that would mean. She loved the idea and I thought showed great understanding of it. I noted that she involved Billy Ray in activities even more than usual. He is very responsive to her and it works well. Above are two pictures of them making ice cream punch together.

I am working on an article about teaching younger kids and adults to simplify housekeeping tasks using products like Swiffer. I will post a link here when it is on my website.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Child and Lighthouse Parents
Websites: Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Jean Baton Swindells Resource Center

2007-09-28T12:25:00.001-07:00

Several months ago I got an email from the Swindells Center in Portland, Oregon asking me if I would consider speaking at one of their educational series events. What was followed was an exciting sense of finding a kindred spirit in this organization. We share a desire to enable the parent(s) to become the leader of their child's team not them into systems that may not work for their child as an individual.

Swindells Center was created because of a gift from Bill and Ann Swindells, whose daughter Jean experienced Downs syndrome. They supported the creation of the Center because they didn't wish other parents to experience the difficulty in finding resources that they had experienced. When I heard that I could so identify with that purpose because that's why I wrote Parenting Your Complex Child - not wanting other parents to go through the struggle we have.

Swindells' Director, Anne Saraceno, is bubbly and obviously full of energy. During dinner before my presentation last Tuesday, I could hear her total understanding of what parents experience and commitment to supporting a better life for the whole family who experiences special needs. I saw the same commitment and understanding in Mary Halvorson, Education Co-ordinator.

Swindells Center is housed in Providence Child Care Center which is a part of Providence Hospital . They also have centers in Medford, Oregon and Hood River, Oregon. To my delight, I learned that they will be opening a new center in Bend, Oregon near me sometime before the end of this year. I will post more details for those in this area as I learn opening date, etc.

One very helpful thing Swindells offer is a Life Care Notebook and Organizer free to Oregon parents and available to out of state parents for $20.

The loose leaf notebook contains a place to list your child's care needs, medical history, etc. It comes with dividers and a place for business cards. It is easy to modify according to what works for your child's information. If your child is older or has more intensive medical history it would be easy to insert a document similar to the Abbreviated Chronological History I do.

Mary shared with me that a Mom had been in training and completed the care notebook for her child. On the way home from the training she became very ill and had to be rushed to the hospital. She was able to hand the notebook to her husband, who had to work, so it could be used to care for her child. Without the notebook the child would probably have had to go to a medical foster home during the mother's hospitalization. With her care listed he or she was abled to be cared for at home with much less stress.

If you'd like to order this valuable tool you can call Swindells at 503-215-2429 or email Swindells@providence.org . You can also download it by clicking here for free. The advantage of ordering from Swindells rather than downloading is that they will send it in a wonderful binder/organizer and will be able to help you individualize pages to your needs. Additionally, they will register you to receive updated pages when available.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com
Club Mom Articles
Parenting Your Complex Child Yahoo Group

News from Our Homefront

2007-08-05T09:41:00.001-07:00

Most important news is that Billy Ray seems to be doing better physically. His gastric surgeon started him on some medication that seems to be helping his intestinal issues a lot. Additionally, his primary has been treating his sinus and yeast infections with a variety of things and we finally seem to have turned the corner there.

AMACOM Books has just agreed to publish my second book. They do not like my title so I will not mention it until the Title Committee gets to play with it for a while. The book is about adults with special needs. It will include transition planning, creating an adult life that works for the individual, and some on estate planning. More news to follow, as we know it.

My stepson once said of his now deceased Dad and me “it’s 1992 and my parents just got a VCR”. I have been behind the times with computers and other technology forever.

Fortunately, I seem to be surrounded by people who know more than I do and are patient teachers. My husband, Larry, is a bit self taught as I am but seems to get this technical stuff so much better than I do. Both of his sons have helped in many ways. Michael has helped me to figure out Power Point and Mark helped to use my favorite planner (Franklin Planner) with a Palm Pilot. My literary agent and even my pastor have lots of computer, internet knowledge and are great helpers. That being the case one has to wonder why I go into the computer age kicking and screaming as I do (smile).

We have been looking at uploading video to my websites for a long time but it was complicated because the website host didn’t store it. You had to have separate entities involved. Recently I noticed an upgrade from my website host that makes uploading of video to my websites as easy as uploading pictures which I have finally mastered. Thus we have been doing some practice video blogs and have created a page on my newest website to put them on. On that page there will be links to video posted on other sites as I do them.

In the meantime, Pastor Richard, has been playing with video on his own blog and uploaded last Sunday’s message this week. Following his lead, I practiced on my Lighthouse Parents Blog with some footage we had shot of Billy Ray’s enthusiastic greeting of folks during Friendship and Worship time at church. You can see it here. Thus, we will be able to do video blogs right on my regular blogs. I hope to begin doing that this week.

One of my colleague blogger/authors took some flack for having things unrelated to special needs on her blog. I understood her desire to be known as she is and also the frustration someone might feel if they were searching for help on special needs and found personal things about the writer. Thus, I have decided to do a personal video blog on my new website, which will include some things that are not directly related to Billy Ray or special needs. No video has been posted there but will be very soon. I am excited to be able to just turn on the camcorder and chat with all of you.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com

Club Mom Articles
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Billy Ray and His "Girls"

2007-07-14T15:10:00.001-07:00

I hear from other parents about their sons noticing girls but it hasn't been much of a factor with Billy Ray until recently. He did have a little girlfriend (we'll call her Debbie) in kindergarten until 7 th grade when we moved away but I think that was more her thing and her parents' thing than Billy Ray's.

The school program that they were in was a three year program. Debbie was a year older so she would move on a year before the end of each section. He didn't really talk about her during the years they were apart unless someone asked him if he had a girlfriend. He called her his "girl" but didn't seem to have any concept of what that meant . By the time he got to sixth grade, she was ready to get married and talked about it a lot. He didn't seem to understand and I let it slide.

After his Dad died I did take Billy Ray and Debbie for outings such as movies or the beach on the weekends.

I realized that she might be getting some encouragement when her parents dropped her off for his birthday party and wanted to tour the house. Debbie's mother asked if they would get to keep the house when they were married. My jaw dropped. Billy Ray was not even 12 yet.

He has always liked ladies but generally paid more attention to plus sized ones like his mom. He gets very attached like a child would to a favorite aunt or grandmother. However, I have noticed lately that he is noticing young girls closer to his age (24 years). He is smiling and looking.

He used to get a kick out of hugging Michelle, wife of his primary care provider, Brice Stanley. Then he would giggle when Brice would tease him about hugging his wife.

Yesterday, we were walking out of Brice's office and I heard Brice say "do you want to say goodbye to her?" I wasn't paying attention, I had his elbow and we were walking out. I looked around and he was grinning at a pretty young assistant behind the nurse's station. I told Brice I had noticed him noticing pretty girls lately. Brice reminded me that he is a 24 year old man. Dah! I get so busy taking care of all his needs I sometimes forget he is a young man after all.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Differently Abled

2007-07-10T18:40:00.001-07:00

Today is one of those reflective days where I am mostly contemplating random thoughts while trying to catch up on household things that have been neglected while finishing some other projects.

My friend sent me the link to Monica Moshenko’s radio program Disability News Radio. During a break from cleaning I listened to some of Monica’s interviews. I loved how she started the program with a discussion of the word disability. She said that we should focus on abilities not disabilities.

Going back to my work I remembered my November 2005 post The R Word – Retardation. In that post, I shared how we told Billy Ray that retarded just means slowed and we are all retarded in some ways. My friend countered that post with showing me a picture of her client pushing her stalled car with his electric wheelchair, which I put in Who's Tarded.

Since writing those posts I heard (or read) someone say “differently able”. Sorry, I don’t remember where that came from but I love it and totally agree with it. We all have abilities and disabilities.

In a building where Billy Ray and I went to see his doctor, we frequently rode the elevator with a man in an electric wheelchair. Attached to the back of his wheelchair was what looked like a cooler and contained bags with coffee or sweet roles labeled with the customer’s name. He didn’t talk but appeared to understand well. It appeared that his only movement was his right hand which could run his electric wheelchair and use a baton to push the open door or elevator buttons.

Apparently a coffee shop near several buildings had a service where clients could call in and this man would deliver the coffee. Customers would reach into the cooler to get their order. You would see some of his customers meet him at the elevator or holding open the doors to their offices so he could come in. He would squeal with a joyful greeting with each one and the customers seemed to thoroughly enjoy seeing him. Many times in the winter his plastic raincoat would be dripping from our Oregon rain. It never seemed to dampen his joyful mood. Clearly he loved his job.

Unless someone saw this man actually doing this job they might assume he had no abilities and they would be very wrong.

Today I am reminded that we all have more ability in some things than others. New technology is not our thing around here. If software or equipment works, I have no desire to upgrade and learn all over again. Case in point, probably a year ago Larry’s cell phone and the one we keep for Billy Ray’s support person to use when they take him out had to be replaced. My cell phone was more than four years old but it was comfortable and still working. In April it stopped holding a charge and had to be replaced. The new one came with an ability to shoot videos and photos. No desire to learn to use that when I could stay with digital camera I know how to use. That is until yesterday!!

Yesterday, Billy Ray bented his new eye glasses and so we made an unexpected trip to Bend to get them fixed. We were in Bend at lunch time and he needed to eat so he could take his pills.

We took him to Red Robin. There is a Red Robin in Clackamas near the Kaiser Permanente where he often went for lab tests or medical appointments. He loves their hamburgers, onion rings and cheese sticks. However, he developed both pancreatitis and diabetes soon after our move to LaPine and we were supposed to keep him low fat. We never told him that there is a Red Robin in Bend for that reason. His pancreatitis is stable at the moment and blood sugar good for the past several weeks. His wonderful primary care provider has given me permission to give him a treat once in a while so we did Red Robin yesterday.

He looks so cute in his new glasses (Dr. Carl Ryan managed to make them smaller, though a stronger prescription, than before) and I also wanted to share his excitement at being at Red Robin after not being to one in nearly three years. No problem we have a camera on this gadget or so I thought. It took quite a while to figure out the camera even though my husband had just figured it out on his phone but, of course, they are all different. Then today I could not figure out how to email them to myself. My husband finally managed to email them from my phone to my computer so I am posting here.

As if to support my feeling of inadequacy technically, Blogger will not let me enter a title to this post no matter what I do and I forgot to upload the pictures before publishing this so had to do it again. At least I discovered that Blogger was having the problem with the title line not me and I was able to add it after a lot of frustration.

If we could all look at a person’s abilities instead of disabilities we might realize how much we ALL have to bring to the world we live in.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Adapting and Re-Adapting

2007-06-27T13:29:00.001-07:00

In my book, I talked about my struggle to communicate with Billy Ray. I was doing everything recommended by the various professionals and nothing was working. Here is a brief excerpt from that chapter:

“I was taking pictures of each step in an activity and writing text about each step. Some activities took more than one page. The consultant assisting us at the time would say, “You will lose his interest if they are too long.” So I shortened them and tried to “do it right,” but discovered he only responded to my detailed visuals that contained real pictures. Again, you must adapt to your child’s needs and responses, not someone else’s ideas.

“Eventually we got a scanner and Larry scanned everything, even old Polaroid pictures. We wrote stories about various events in Billy Ray's life such as the story of his adoption. These were called Billy Ray’s Stories. He loved having his stories read to him and seeing pictures of himself doing the activities. You have to do what works for your child, period.” Excerpt from Chapter 9, Two Essential Words: Communicate and Adapt, used by permission of the publisher from "Parenting Your Complex Child" by Peggy Lou Morgan © 2006 Peggy Lou Morgan, published by AMACOM, division of American Management Association, New York, New York. http://www.amacombooks.org/

Billy Ray may be more complicated than some of your children because he experiences medical issues combined with multiple special needs issues. However, I think the principle of today’s post applies to most children and adults who experience special needs. We, as parents, generally don’t have the luxury of continuing to do things for our children because it is the way we have always done things or because of some established program.

It has been necessary to write addendums to the Long Term Vision and Care Plan through our county case manager for the coming year’s funding for in-home supports. As I wrote it, it occurred to me that I am the one changing more than Billy Ray here. Adapting is not a once and for all times thing, at least for my son. Here is a cut and paste to the addendum for the care plan:

“If his mother, and primary caregiver, remains very aware of potential pain, intestinal issues (bowel regularity), changes in blood sugar, assuring that conditions in his environment are not such as to agitate him, etc., etc. Billy Ray is able to function with less of the extreme agitation (physical aggression and property damage) that he was experiencing in the last writing (11/6/06). However, it should be noted that his tolerance for pain, routine and environmental concerns has actually decreased. Mom must be on guard at ALL times to assure that these matters are addressed BEFORE they go into severe agitation or a meltdown. This balancing act requires constant vigilance on the part of the family.

“Community activities are more of a challenge presently. On the one hand, Billy Ray wants to go. On the other hand, he is experiencing a substantial reduction in energy level so major flexibility must be allowed so that he can go out when he is able. This makes scheduling regular activities much more difficult. The only vocational activity he continues to participate in is his Meals on Wheels delivery. He is able to maintain that route which he loves because his stepfather does it alone when Billy Ray is not able to participate. Billy Ray still participates probably 3 out of 4 weeks but it exhausts him sometimes for several days. He continues to do restaurant meals and trips in the car as he is able because these can be done without as much scheduling.”

Whether it is because of physical changes, development or other issues a child is experiencing the need to adapt and readapt is a sure thing.

We are adapting in another way too. We have frequently talked about Billy Ray’s skin issues. (See here on this blog and here on my website for more details on our skin care regime. ) Until recently they were not on his face. He has a heavy beard and shaving is at times a struggle. We talked with the pediatricians years ago about whether growing a beard might be a good answer. That recommendation was that we not do that for sanitary reasons. However, Billy Ray is now getting lesions on his chin and while he doesn’t get lesions under his chin, his neck is gets irritated very easily from the shaving. After discussion with his present PCP, Brice Stanley, we decided to grow a beard because shaving may be causing more problems than it cures.

However, following the advice of our then pediatrician we taught started shaving pretty early. She suggested that we make it fun by having family who would normally give Christmas and birthday presents (his birthday is near Christmas) give him various types of after-shave and supplies for shaving. That way we could find his preference. It worked. He loves Brut and uses it for after-shave and deordorant. Shaving is a part of his bath routine. Thus, we are doing a gotee and he is fine with that as long as he gets to shave and wear Brut. Here is a picture of our start:

I will post another one when he has grown it longer.

Keep Adapting and Re-adapting,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents

Websites: Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com (under construction)

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Here We Go Again - Update on Billy Ray

2007-06-07T12:37:00.001-07:00

I haven’t posted for a while because my readers know me so well and take some of my worries about Billy Ray too seriously for their own kids. I like to be sure about my facts before sharing our struggles. Apparently, I am not going to have that luxury. We are in a struggle to verify Billy Ray’s situation in order to get him appropriate medical care.

Some kids seem to get every potentially bad reaction from medications or their genes. If there is even a .2 percent chance that you will get one condition if you have another one, you might as well plan for it with some children and adults. My son is apparently one of those. Trying to be positive about my infertility, I remember thinking that at least my adopted child would not have to inherit genes from our families that included epilepsy, diabetes, high blood pressure, migraines, and even mental illness. Apparently that was a misplaced hope given all the genetic things we are finding about Billy Ray.

As stated here sometimes Moms (and Dads) just know that there is something wrong even before it is confirmed. I have email to medical providers going back a long time where I said he is better but I still fear there is something we have not found yet. We have dealt with pancreatitis, diabetes that didn’t seem to be effected by diet one way or the other, repeated sinus and ear infections, etc., etc.

In September, he had surgery (the Nissen procedure) for severe acid reflex and seemed to be getting his strength back pretty well. The choking and the breathing issues seemed to improve right after surgery. He started gaining weight, which, at first, seemed like a good thing.

Then all winter it was one sinus infection after another and major bowel issues. Somewhere along the line, I realized he had more thick mucus in his nose and throat even when he didn’t have an infection. He would walk around the room and gag or cough similar to how he did with acid reflex while he was eating but this time no eating or drinking was involved.

I noticed that he was starting to sweat a little, which he had never done even though he tends to wear far too many clothes in hot weather. His energy level dropped rapidly at times. Whereas he used to never stop unless he was extremely ill, he seems to have sprints of energy on occasion but lots of times he seems to have no energy.

We truly have the most thorough and caring medical provider you could hope for but I think he was as baffled by this change as I was.

One day, I called Kate Crowe, genetic counselor, who wrote the foreword to Parenting Your Complex Child. I had called only to tell her that my book was finalist in the 2007 Nautilus Book Awards. She is such a busy lady I usually expect to leave a message. She was there and had a couple of minutes between patients. At the end of our conversation, she asked about Billy Ray and I shared a bit of what was happening. All of a sudden, she told me to hold on and she looked on Kaiser’s computer (Billy Ray had been seen at Kaiser since adoptive placement at 14 months old until we moved here when he was 22 years old). When she came on the phone she said that they had never been screened him for Cystic Fibrosis. Many of the symptoms he is now experiencing didn’t occur until after our move so didn’t trigger Kaiser to screen.

There is more being learned about a possible connection with Down syndrome and Cystic Fibrosis than in the past. I had never heard of that connection before but when I did a Google search for Down syndrome and CF it came back with over a million results. There was an article documenting the connection in the sixties. I don’t think it is that common but apparently it is not new.

So here we go again. His energy level has changed so we have to redo his schedule for things are flexible in terms of time frame and in terms of energy requirement. The one exception is he still goes for his Meals on Wheels delivery most weeks. He is exhausted afterwards but it is important to him to do it.

I will try to keep up more with this blog as we kind of get caught up with his schedule.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com (underconstruction)

Club Mom Articles
Parenting Your Complex Child Yahoo Group

Another Development Regarding the Pillow Angel

2007-05-08T23:11:00.001-07:00

There were several visitors who had searched using the term pillow angel and came to my post about it. Apparently, there is renewed controversary because the procedures broke Washington law see CNN's article here .

Billy Ray and His Clothes Hangers

2007-05-07T08:59:00.001-07:00

Billy Ray loves hangers. They seem to have taken on a whole new facet for him in the last few years.

When he was little his Dad used to buy him toy guns. It was not my preference but I felt Raymond should be able to make decisions regarding our son too and it wasn't a big deal at the time.

After Raymond's death and meeting Larry, Billy Ray began watching Larry's John Wayne movie collection. I became increasingly concerned about how realistically he played with guns. He didn't have toys that could be mistaken for real guns but living in a hunting and farming area, I was afraid he would come upon a real gun sometime and not understand it was not a toy. Larry and I talked to him about it and eventually traded him something (I can't remember what now) for his toy gun collection.

Billy Ray was amazingly accepting of giving up his guns but soon thereafter he started playing the "action scenes" from John Wayne movies using plastic clothes hangers as substitute guns. He began taking over the heavier hangers I kept for Larry's jeans if they were left in the laundry room. Soon we had to color code them in order to have any for Larry and my clothes. Billy Ray's were the white ones and we bought him the heavier ones.

Hangers not only serve as toy guns, they are a blaton that he conducts music with when he watches Mr. Holland's Opus and many other activities. They are with him much of the day. Fortunately he accepts that he can't take them out of the house but he wants to lay the one he is carrying by the front door as he leaves the house. As you can see they have a way of sneakng into family pictures such as the above taken last Thanksgiving with four of his "neecees and nefews" (nieces and nephews).

If all of our blogger friends ever got together, I'll bet we could laugh at the various treasures our kids enjoy.

Sorry I have been so delinquent in posting. A lot going on. It seems we have been sick all winter and dealing with my parents' situation. There may be some more medical news for Billy Ray but I will wait to confirm that until we know for sure.

There is some other news about Parenting Your Complex Child. My publisher, AMACOM Books, entered it in the 2007 Nautilus Book Awards Contest and we have made it to finalist. The winners will be announced at the Book Expo America in early June. I am very honored to even be a finalist.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com
Parenting Your Complex Child Yahoo Group

The Sandwich Generation with a Special Needs Child

2007-04-09T06:02:00.001-07:00

I have heard a lot in the past few years about “the sandwich generation” where parents are caring for their children and their own parents. Only recently, have I begun hearing about sandwich generation parents where one or more of the children experiences special needs. Maybe I am just paying closer attention to it because that is where we are right now.

When my brother and I talked about my parents needing to be with one of us it was a major consideration for me. There were many things for me to look at in deciding whether we could handle incorporating my parents into our home.

The folks need a single story house which we have but the only bedroom for them was next door to Billy Ray’s room and his noise would keep them awake and stirred up. Additionally, Billy Ray has been in and out of the hospital 5 (or is it 6 – I have lost count) during the past two years. I am not able to leave the hospital when he is there. We have actually rented a motel room a mile from the hospital a couple of times and I have not even been able to get there except maybe long enough to shower. During those times, it would be impossible to care for my folks.

I also had to look at how well my mother and I would get along. I am not going to go into it fully herein but suffice it to say my relationship with Mom has been a challenge my whole life. We are very different people. I am more like my maternal grandma (a people person and a messie) and my mom is a cleanie. Mom is not the animal person that I am. I feared she wouldn’t accept Billy Ray’s service dog (although she has accepted my brother’s dog well).

My brother and I decided that he would bring my parents to his house. One of those chair elevators was put in his stairwell but Dad’s health deteriorated quickly and now he is in a hospital bed in my brother and sister-in-law’s living room until arrangements can be made for a nursing home for him.

We visited my brother’s home in a neighboring state last month. I see how it has taken over the lives of my brother and sister-in-law. I see how exhausted my brother seems. I feel badly that I can’t help more than we are able to do.

As you can see by Billy Ray gently leaning over to hug Papa with Grandma’s assistance in the picture above, he handled the visit as well or better than we could expect. However, when we tried to stay with the folks for a few hours so my brother and his wife could get it, the conflict between the care of my son and my parents became clear. Mom and I did work together on feeding Dad and Billy Ray but it was a struggle that probably would have worsened with time. It was difficult to watch Billy Ray and attend to Dad. I feared he would somehow ruin my sister-in-law’s beautiful décor or be too rough with their little dog (as you can see in this picture with my sister-in-law and "Coda" he loved him but Coda is not as sturdy as the service dog at home).

Billy Ray requires one on one care at home. We have to constant monitor. It didn’t take long to see that it wouldn’t have worked here on a day to day basis.

I finally came to realize that being stuck in the guilt I was experiencing was impacting our lives including Billy Ray’s. Sometimes you just have to get back into the idea of the Serenity Prayer again. Change the things you can and accept what you can’t change. There are just some things we can’t do but it is hard to accept that in times like these.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Our Adoption Anniversary

2007-03-29T07:36:00.001-07:00

Today is the 23rd anniversary of becoming a family. I read that you should tell the story of a child's adoption just as any other bedtime story and frequently told him the story rocking him to sleep at night. Eventually I just started telling him the every year on his adoption day. When I started doing visuals I created one for his story. It's on my website here.

Another suggestion from my reading about adoption was to have an adoption birthday just as any other birthday. We have always done that but now we call it our adoption anniversary because it gets confusing as a birthday and because it was really a special day for me too. Throughout the day each year I tell him what I was doing or we were doing at various times of the day. For example, Raymond (my late husband) couldn't get the day off to pick him up so my mother went with me to the adoption agency. We call my mom every year at approximately the time (10:30 a.m.) that we picked him up. That way we sort of share the anniversary with her. They both love it.

Today my thoughts seem to be running to how far we have come and how many expected turns we have taken. Also how much different I am because I have had the joy of being Billy Ray's Mom. Hopefully we have made a difference in his life too.

Earl, my stepson, told me at the time of Raymond's death that Billy Ray was the best thing had ever happened to his Dad. It did change him a lot.

When Billy Ray was little saying "Earl" would come out "girl" so Earl taught him to call him "Bubba" for brother. When we went to California to meet Larry's family, Billy Ray immediately started calling Michael "Bubba". It was like he just recognized him as a brother from the start. Michael is Billy Ray's champion. He talks about him everyday many times a day. The above picture was taken with Michael and his wife, Rebecca, at Thanksgiving.

There is so much more that I could say about our life together but Billy Ray is ready to have his story read to him and we have an adoption anniversary to celebrate today.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan (under construction)
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Establishing Relationships That Last for Your Adult Child When You Can't Be There

2007-03-26T11:03:00.000-07:00

You may have noticed I haven’t written much since starting this blog. To be honest, I am struggling a bit trying to decide what to put on this blog and what to put on Parenting a Complex Special Needs Child. My big thing has always been preparing for adulthood and I have written about it extensively. However, sometimes you have to start where you are. Thus, today’s blog.

As parents we expect to around to be a support when our adult children go into an apartment or program. We may not be able to do that. I have a whole chapter on estate planning in my book because I often became guardian or trustee after the parent had died or became too ill to advise in the care and planning for their adult child. I created a form for medical and development history, visuals and documents about the routine and care required for my son so they are available to someone in the event I am no longer able to communicate his needs to the appropriate person.

However, last summer I had the privilege of sitting in several of Dr. David Pitonyak’s sessions at a conference where I was speaking. It gave me real pause to take another look at planning. Dr. Pitonyak kindly puts the handouts for his various presentations on his website. You will find them great reading.

One of the things that hit me hardest was Dr. Pitonyak’s statement “Imagine if the only relationships you had were people who were paid to be with you?”

I don’t mean to imply that every family who has a member with disabilities is isolated; however, many are. Some marriages become real teams and others fall apart when confronted with parenting a child with special needs. Long-term friendships are hard to maintain with the responsibilities we carry. Depending on your child’s situation it may seem overwhelming to go out in the community so isolation becomes the norm.

If your adult child is in a group home or some kind of facility it would be easy to say he or she has plenty of friendships among staff or fellow residents. In The Importance of Belonging, Dr. Pitonyak says: “Although paid staff can be friendly and supportive, they frequently change jobs or take on new responsibilities. The resulting instability can be devastating to someone who is fundamentally alone.”

Fellow residents may also be short-term or your adult child may be moved to another placement. These relationships are not necessarily enduring.

Friendships for your child or adult child can be established in much the same way you develop friendships. You meet someone with similar interests or background. If he or she loves to bowl spend time at the bowling alley. Other people there doing what they love get used to see you and your child there. Comfort level usually increases and sometimes relationships ensue. Whatever he likes to do spend time in a regular setting that enables him to do what he loves and to meet others with that same interest.

Some relationships may come from within one’s family. An example for Billy Ray is one of his “neeses” (nieces). He has good relationships with many of his step-nieces and nephews. One is especially close – if I am talking to this step-granddaughter on the phone and she hears Billy Ray in the background she will say “is that Uncle Billy Ray? Let me talk to him, it will help.” It does help calm him to talk to her in person or on the phone. I have noticed that he interacts with her more than with most people. You can tell he makes an effort to do that because she is important to him.

I was reminded of the importance of common ground in relationships recently when we spent a weekend visiting at my brother and sister-in-law’s house. My brother remarried a few years ago but we haven’t had a lot of opportunity to get to know his wife, Meri. She is a social worker so responses to Billy Ray were probably more natural than they might be for some. However, besides being very good with my son, they clearly shared a mutual interest in dogs. The picture shows Meri sharing her dog with Billy Ray.

Dr. Pitonyak also talks about the importance of having someone who holds a person’s “story”. I plan to write on that in another post. However, I wanted to say that having relationships that endure after parent(s) are no longer available, especially if that person understands what life was with parents and really knows a person is vital to their security and happiness.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting A Complex Special Needs Child and Lighthouse Parents
Websites: Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Comment Moderation and Word Verification

2007-03-07T20:09:00.001-08:00

When I first started this blog somehow spammers were able to get a ping or notice of some kind whenever I posted. Almost immediately I would get comments that appeared computer posted on everything from male enhancement to general spam products. I finally activated word verification because it was supposed to stop the computer generated spam comments. A live person would have to type in the word to post a comment.

That worked for the most part for quite a while. In the past few months it is not stopping almost daily inappropriate comments. For example, someone (appears to be the same person but with multiple addresses) has been leaving a comment on my October 2005 post on behavior medication. This comment was trying to sell pain and other meds of the type you would need a prescription for. I have deleted it over and over again.

Tonight the computer is beeping me with new mail for a comment on several posts. I logged into Blogger and had just deleted one when my email software beeped me for the same comment on a different post.

I am not a big fan of comment verification mostly because I am afraid I won't get to them quick enough to approve them. However, it is time to take that step. I hope my readers will bear with me.

Until next time,
Peggy Lou Morgan

Awareness That Brings Acceptance of the Individual

2007-03-05T09:21:00.001-08:00

As we near Autism Awareness in April, I have been thinking about the conflict I wrote about in Acceptance – Not a One-Sided Issue on my Amazon Blog last year. The comments made by Cal Montgomery in her review of Autism is a World and partially quoted in the referenced post have continued to haunt me. I was bothered by the following comments made by Ms. Montgomery:

“Once they're aware of the sorts of people we are they have basically two options: they can react to us in some special way (special ed, special workshops, special segregation, etc.) that takes our fundamental difference from them into account, or they can lose interest altogether and wander off to do other things. ***”

“I tend not to cooperate in awareness efforts. I am tired of being what Jim Sinclair calls “ a self-narrating zoo exhibit”, tired of being told by the neurotypical parents and teachers and professionals who deal with autistic people that my only value is as a sort of reference work they can use to help ensure that a couple of generations from now there is nobody like me on the planet.”

I thought about it again after watching CNN’s interview with Amanda Baggs and reading Dr. Gupta’s blog about the interview.

The problem with awareness may be that it is too much geared to stereotypes and the idea of a cure and not enough on an individual. Society tends to forget that Autism is a spectrum and not every person will experience it the same way. As Bonnie Sayers points out there is a variety of things to be learn about. Not every person experiences the same things.

Billy Ray is Billy Ray. He is not Amanda Baggs or Sue Rubin. He is not just an Autistic adult or an adult who experiences Down syndrome or bipolar. He is unique. He can’t be pushed into systems for the group, he needs systems that work for him individually. When that is done, he is able to enjoy his world and has much to contribute to it. It is probably the same with your child.

It was devastating for me to realize that Billy Ray didn’t really benefit from programs that others swear by. For example, a program that is often used by therapists and frequently praised by fellow bloggers was tried for long periods with Billy Ray on three separate occasions. That doesn’t make it a bad program. It has clearly helped thousands of children and parents.

I told a new therapist that we had tried that program twice and it didn’t work. He actually yelled “what do you want from me”. What I wanted was time to be taken to get to know Billy Ray and find what worked for him. I finally started documenting and trying to know my own son better, adapting his world to what worked for him as an individual and to communicate him as he is to others.

If awareness is to make a real difference it must see the individual not just the group. We are asked to allow for diversify in many types of peoples in our society. It is time to recognize diversity and VALUE in children and adults who experience special needs too. We need to advocate for flexibility in community and in services so that everyone can benefit.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Reasons for Actions

2007-02-25T15:09:00.001-08:00

Billy Ray has been busy lately. As I wrote here he is changing. I am not sure whether it is his improved medical health or maybe the exit from puberty but in some ways we have the Billy Ray we knew before his seizures at 14 years old.

As stated before my son is my best teacher. As I have been working with him more because of his recovery and our lack of support staff, I see even more clearly how focused he is and that almost everything he does has a purpose.

Presently, he has lots of energy and a desire to be busy. He loves to do housekeeping things, probably from doing things together since he was a toddler. His intolerance of clutter these days is actually increasing since I wrote Temperamental Mismatch. Sometimes he can’t even stand to have things in drawers in dressers or the coffee table (except his own I might add). He seems to be taking over the house when we allow it.

We have created a to do list for us to work on together but it includes movie breaks for him. We put a small tv-vcr-dvd combo in my office so that I can work while he is taking a movie break. I have been working on a long overdue project. He can’t stand for me to leave it laying on my work table when we go back to working on projects together. At first, I thought it was the clutter then I realized he had a method to his madness. My worktable is a computer table that also holds the printer-fax and a monitor hooked to his old computer (which I am transferring files from). The screensaver for his old computer is his picture file. The monitor that is hooked up to it is one of those high resolution flat screen ones my husband recently inherited from his stepfather. The other day after he was agitated until I put my project away from that worktable, I looked over and saw that he was pulling the chair up to it and intently watching the pictures on the screensaver. That project would have been in his way because he had elbows on the table.

Another example of his focus or communication was his intolerance of towels placed in the dresser in the guestroom. We don’t have a linen closet in this house and very little drawer space in the bathroom. I was putting towels for the bathroom in the guestroom dresser. That dresser was one I purchased for Billy Ray several years ago because it was supposed to have drawers that he couldn’t pull out. It didn’t work well for him and he had taken to knocking furniture over at that point. I was afraid he would get hurt so we removed it to the guestroom and found some plastic bins two to a rack and bought three racks as a substitute dresser. They adapted well to him for quite a while. However, after multiple rewashing of the towels he pulled out of the now guestroom dresser and either threw on the floor or put in the hamper, we realized he wants that dresser in his bedroom again. Sometimes I think I am the slow learner. He clearly focused on the goal.

Obviously we can’t allow him to take over the house which he clearly would do. We have to set limits such as what’s in the master bedroom belongs to Mom and Dad and he may not go in there or remove anything without our permission. He is a visitor in my office and may not rearrange my papers. However, I have noticed that when my desk top gets more piles all of a sudden my garbage gets fuller. I am inspecting the garbage before it goes out and working on reducing my desktop piles. The irony of it is he’s right. He and I are both less stressed when my desk is clear. Again, he is my teacher.

Apparently Billy Ray is not the only one who has a reason for what he does. I loved the interview on CNN’s Anderson Cooper 360 with Amanda Baggs who experiences Autism. She had reasons for many of the things she does. Dr. Sanjay Gupta wrote of her in his blog:

“She taught me a lot over the day that I spent with her. She told me that looking into someone's eyes felt threatening, which is why she looked at me through the corner of her eye. Amanda also told me that, like many people with autism, she wanted to interact with the entire world around her. While she could read Homer, she also wanted to rub the papers across her face and smell the ink. If she saw a flag blowing in the wind, she might start to wave her hand like a flag. She rides in a wheelchair, she says, because balancing herself while walking takes up too much energy for her to also type and communicate. To an outside observer, the behaviors would seem eccentric, even bizarre. Because Amanda was able to explain them, they all of a sudden made sense. In case you were curious, there is no possible way that I was being fooled. Amanda, herself, was communicating with me through this voice-synthesis technology.”

The key to adapting seems to be finding the reason for the action. It is hard work sometimes to find it but it makes all the difference for all of us in the family environment.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Intolerance Abounds

2007-01-24T09:50:00.001-08:00

The television was on this morning as I walked by to get Billy Ray’s pills. Diane Sawyer, Good Morning America was talking about a story they had done yesterday and the poll they took from viewers.

Apparently, a three year old started crying boarding an airplane. Neither of her parents were able to get her to stop. You can read the article here. Nothing was said about the little girl doing anything but crying or having special needs of any kind. The parents were instructed to make her stop and were eventually kicked off the plane because they couldn’t.

What is more shocking to me than the airlines behavior (deplorable as I find it) was the poll taken by GMA. Of 26,586 votes approximately 62% said they agreed that the family should be kicked off the plane if they couldn’t make the child quit. With this kind of intolerance is it is any wonder people with disabilities have to fight such discrimination and intolerance. What have we become as a community?

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Maybe a Better Question re the Pillow Angel

2007-01-16T12:19:00.001-08:00

Friday night’s Larry King Live discussion centered around a family who had surgical and hormonal treatment for their daughter, Ashley, now 9 years old, to basically keep her as a child. She has been referred to as the “pillow angel”. Basically, if I understand it, she was given hormones to stunt her growth. Her parents will be able to lift her longer because of this procedure. Additionally she was given a hysterectomy so that she will not experience bleeding or painful cramps from menses and had her breasts removed so that they will not grow normally. Apparently, the parents believed that she would be more comfortable without experiencing menstruation and developing breasts.

A search on Google displayed over a million sites that comment on this controversy. Here are two for Times articles: Part 1 and Part 2.

I have read many of them and also had a discussion on our Yahoo group. The more I thought about it, the more I thought maybe instead of taking sides on the controversy we should be asking the question about why parents have to make such difficult decisions.

I do want to be clear that I am not advocating for this radical treatment or necessarily agreeing with it. Joni Eareckson Tada made the comment on the King show that it was alarming that this kind of treatment could set precedents. That alarms me greatly. Our history demonstrates that treatment can be universal. In the past all people with special needs be sterilized to reduce the incidence of mental retardation. Also many people were locked up in large institutions that could have functioned successfully in the community.

We have to ask ourselves if there was adequate resources and support for parents of complex children and adults would the parents have felt they needed this treatment to assure they could keep Ashley in their care for as long as possible.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Share Your Adult Placement Success Stories

2007-01-16T11:29:00.000-08:00

A comment on the last post must have been reading my mind. I have gotten several email from parents who say that their adult child’s group home are very caring and try very hard. I have also gotten email with horror stories. I admit that I can be a little bias on out of home placements. I was just thinking to request your success stories so we were fair and balanced, as they say.

The success of placements seem to have to do with not only the competence of the facility but the ability of the complex adult to tolerate a group type setting. Billy Ray has been in two different settings that didn’t work. I have been wanting to share that experience but don’t want to imply that all placements result in horror stories. So as the commenter on the prior post asks let’s hear about some success stories. You can either email with them and I will post with or without your name (let me know which you wish) or you can leave them as comments to this post.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Child and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Parenting Your Complex Child Yahoo Group

January IEP's Are Here Again

2007-01-05T20:10:00.001-08:00

January-February IEP meetings can be among the hardest for teachers and parents alike. While some IEP meetings are regularly scheduled for January or February, many occur because the program is not working and a parent has requested a special meeting.

Chances are you have experienced what I call the “dumb parent treatment” in dealing with some professional relative to your child. Here’s my description of it:

“The “dumb-parent treatment” is an unspoken attitude that seems to imply parents do not understand their children or that parents’ opinions are unimportant. If the parent sees the child as functioning at a higher level than the school or the physician does, then the parent is not viewing the child objectively. It can be conveyed subtly or not so subtly, but the attitude says you are only a dumb parent who does not know anything. How dare you question the opinions of professionals? It is something most parents will deal with at some point in their children’s lives. It is not necessarily about the parent’s intelligence or sophistication. I have spoken with professionals in various fields who were treated similarly when they attended meetings regarding their own children. Excerpt used by permission of the publisher from "Parenting Your Complex Child" by Peggy Lou Morgan © 2006 Peggy Lou Morgan, published by AMACOM, division of American Management Association, New York, New York. http://www.amacombooks.org/”

The stress of these meetings are has been memorialized on a coffee mug which reads "I survived an IEP". I love it.

I have put a new article on my website called Team Building Advocacy which you might find helpful in preparing for your next IEP.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Humor is Good Medicine

2006-12-30T11:38:00.000-08:00

As stated before, I love the humor of Lori Miller Fox. She has done it again with Toasts with a Twist. Lori also links to 10 Christmas Carols for Parents of Special Needs Children on the specialsneeds.about.com site. Both are great comic relief at a time we probably need it most.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect , Lighthouse Parents and Parenting A Complex Adult
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Billy Ray's Birthday Party

2006-12-20T07:11:00.000-08:00

Our day started out excited and trying to get things ready for Billy Ray's birthday party. By mid morning it was getting more difficult. I don't know if it was the excitement on his part or pain from two folicitis leisons he has in somewhat delicate areas of his body. Nevertheless, we got into a full scale behavior - the kind that exhausts me for days. Thus, the choice was to cancel the party or risk that we could work through the behavior before time for his guests to arrive. I chose the latter because he has not had a birthday party in two years (the first when we moved the day after his birthday and last year when he was too ill). He clearly wanted to do the party. We went forward clearly not able to do everything we had hoped to do especially in terms of housecleaning, etc.

Here are some pictures to share his party with you. Below is Billy Ray manning the door. He loves greeting people.

Hugs abounded. Here he is hugging Denise Lighthill one of his special people.

Below he is making the ice cream punch.

He was more social in terms of interacting with his guests than he has been of late. We were also able to get him to look at the camera and smile. Here (below) Pastor Lighthill was taking the picture and got him smiling for the camera.

His favorite part of his parties (or any one else's party is always blowing out the candles on the cake). Interestingly while he loves blowing out the candles he doesn't really like cake.

In September when we had guests for dinner, a friend brought a birthday cake for his wife (Donna referred to in many posts herein as the cookie lady because she bakes the high fiber cookies for Billy Ray). To our amazement he not only really got into blowing out the candles on Donna's cake but loved the cake. It is a chocolate raspberry that a lady in our area made. I was able to order an identical one for Billy Ray's birthday this year. Here he is blowing out the candles with Sarah looking on.

Below left, he is really getting into opening his presents:

So often we just don't know how Billy Ray will react. It is difficult to decide whether to do events like this especially when the day starts out the way it did yesterday. The alternative is isolation and loneliness. It is worth the struggle to accomplish. I can't ever remember a birthday party where he mingled as well and seemed to enjoy his party as much as he did last night.

It appeared that everyone had a good time especially Billy Ray. The picture on the right doesn't have anything to do with Billy Ray but I can't resist sharing it. This is Billy Ray's service dog Penny Lane and Sarah Henry. Even the dog seemed to enjoy the evening.

Our friend, Dave Peters, brought Billy Ray an assortment of fun things to do including silly straw. He really enjoyed spraying it towards his guests. I regret the pictures of that didn't turn out because he was having so much fun with it.

Denise and Pastor Lighthill brought Billy Ray a large soft textured pillow with sports figures on it. Jeannie also brought him a very plush and soft Koala bear. Billy Ray went to sleep cuddled with both which seemed to be an indication of how the evening went for him. Very rare for him to go to sleep so easy and peacefully.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect , Parenting A Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Feelings of Isolation - Adapting Family Events

2006-12-19T09:44:00.001-08:00

I am hearing from lots of folks who are feeling isolated right now. I so know what that feels like. I am working on an article about coming out of isolation and the need to create a community that works for your child and the whole family based on the procedures in Entertaining with Billy Ray and The Holidays with a Complex Child.

Today is Billy Ray’s birthday so we are trying to get things ready. There is still a part of me that hates the lack of perfection because I am a “perfectionist messie” but it is better to adapt to what works for us than to stay in the isolation of never entertaining. The need for coming out of isolation has superseded the need for perfection in our home.

I will try to get some pictures from Billy Ray’s party and post them tomorrow.

Merry Christmas to all.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Lighthouse Parents and Parenting A Complex Special Needs Adult
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Articles on My Website

2006-12-14T10:49:00.001-08:00

I wanted to let you know that some of the articles I wrote for publicity for my book are being put on Parenting Your Complex Child website. They are not all there yet so check back often. I have several to add.

I also wanted you to know that I am starting a new blog relative to parenting adults with special needs to separate things out a bit. I hope to write on both a couple of times a week at least.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting An Adult with Complex Special Needs and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Parenting Your Complex Child Yahoo Group

What Empty Nest

2006-12-14T07:17:00.000-08:00

It seems only yesterday that Billy Ray came to us as a bouncing, bubbly 15 months old. Next week he will 24 years old. The "nest" as they say is not empty by any means. He still needs as much daily care and advocating as he did as a child. He still can't be left alone.

In my blog, Parenting a Complex Special Needs Child, we talk about children and many issues apply to adults too. However, it seems important to separate them now as we transition in adulthood. You may want to check out that blog as well because there may be helpful things for your situation and you can see how we got to this point.

It is my hope that we as parents of adults with special needs can chat about our experiences and support each other in this exciting and difficult time. Please do comment and share how your experiences differ from Billy Ray's and mine. That is not only interesting to me but may help other parents at this juncture in the journey with their adult child.

Not all adults can function within existing systems for adult support. Some can function great in assisted living programs, others can live independently or in group homes and still others will not tolerate a group living situation. Whatever the situation there are challenges that we as parents must assist with. In addition, there is the giantic question about what happens when we as parents are no longer able to assist our adult child.

Let's share our journeys and be a support to each other along the way.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Child and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Parenting a Complex Child Continues into Adulthood

2006-12-12T07:20:00.001-08:00

My email inbox has brought multiple reminders this past week that our commitment as parents to children who experience special needs does not stop with transition into adulthood. Whether an adult child is in some sort of out of home placement, his or her own living situation or still in the family home, we continue to have a higher degree of involvement in their lives than other parents might.

This time of year, I think a lot about Billy Ray’s future. It is time to update files, etc. that I do near his birthday. He will be 24 next week. My mind wonders how we got here so fast. My baby is now an adult.

On Sunday Pastor Lighthill included, in his sermon, an inspirational story of a father doing the Iron Man Triathlon with his disabled son. Dick Hoyt has some kind of raft that he puts his son on for the swimming part of the triathlon and swims pulling son Rick on the raft, Rick is then put on the bike which his Dad pedals for the second part of the race and is pushed in an adult stroller for the final phase of the race.

According to this story Dick Hoyt, at 66 years old, has decided he needs to change to a less demanding race.

Mr. Hoyt is a great example of many parents who help their children to live out their dreams instead of focusing on their own dreams. As parents our focus and commitment changes from what it might have been. We travel a road different than we might have traveled. Who can say, it might end up being more fulfilling than we imagined.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Parenting Your Complex Child Yahoo Group

We're Still Here..12/8/06

2006-12-03T21:01:00.001-08:00

Sometimes it is hard to be open about what we have been experiencing. We fear others will think we’re crazy. We think we are the only one experiencing it so we don’t share. Maybe we don’t all experience the same things but I hope that by sharing, some of you may not feel so alone if you go through what I have been experiencing.

We all deal with periods of what I call the “funk” at some point and in our own way. Some might call it depression. Some call it grief or disappointment. The funk, as I experience it, is often exhaustion for long periods of sleep deprivation. Everything seems more difficult than it normally does.

It is probably not entirely connected to parenting a special needs child. It could be worse if our kids experience special needs in the same way that everyday things of life seem to feel more overwhelming. It does seem harder to pull yourself out of it because it is more difficult to do some of the things that would help (like time for yourself and extra sleep, etc.)

There are seasons of our lives when change seems to be unavoidable. Fortunately when Billy Ray goes through a period of change it is not usually the same time I do. This time we are both going a time of change. I have been dealing with seemingly overwhelming paperwork that has been let go during Billy Ray’s multiple health crises, still unpacking boxes from moving almost two years ago and facing some physical things of my own, mostly normal aging stuff.

Even things unrelated to our kids can seem more overwhelming than they might be. For example, my elderly parents have reached the point they can no longer take care of themselves. It has been difficult to accept the fact that we couldn’t bring them to live with our family. This is not entirely because of Billy Ray. Fortunately my brother has been able to move them to his home. He is bearing the brunt of the situation but it is still emotionally charged.

At the same time Billy Ray was hospitalized with pancreatitis, my father-in-law passed away (these events were less than two weeks before the publicity was to begin on Parenting Your Complex Child. My mother-in-law is incredible despite low vision. Larry goes to visit and raves about how well she is doing.

Billy Ray’s physical health is better than it has been in a while except for recurrent sinus, ear and skin infections. His surgery in September has made a major impact on his health. It does; however, complicate things because it has so strongly affected his appetite. He wants to eat but can’t eat as much as he used to so we do a lot of small meals. . It seems we are cooking a lot more and sometimes for the garbage disposal. On the other hand, he has more energy and wants to do things again. It is a good thing to regroup for him and generally uplifting. However, if you are going through other things in life it can be more overwhelming.

At some point we have to pull ourselves out of the funk. I know that I am ready to do something about it when I want to do certain things like curl my hair or clean house. While those things may not make the major changes in life that is needed, they energize me to do other things.

When exhausted or stressed it is hard to make yourself do even important things. Sandra Felton founder of Messies Anonymous and author of many books, suggests baby steps and using a timer. I use a timer for projects for me and for Billy Ray. It helps a lot because you can make yourself do something for 15 minutes at a time much easier than trying to deal with a total project at once.

The other things that help a lot are the Serenity Prayer and the lighthouse concept which I have written about here and here.

The funk seems to be on growth and regrouping in ways nothing else can. I hate the funk when it starts but it brings on valuable regrouping and growth.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Adjusting to Seasonal Time Changes

2006-11-03T08:29:00.001-08:00

Time changes to and from daylight savings time is something we deal with every year. It effects Billy Ray and even his service dog, Penny Lane, every time. Both are very routine oriented. Going to bed is the internal time clock not the one on the wall.

If this is an issue for your child, you can try adjusting little things such as dinner time, chores, etc. in tiny increments leading up to the actual time change. It helps to get modification of routine started rather than immediate change.

We got caught offguard this year and didn’t begin modifying his schedule like I normally would. Billy Ray is going through some life changes relative to changes in his chemistry from medications he took for Acid Relfex but doesn’t need since surgery to repair the Acid Reflex, substantially reduced appetite (so we are doing lots of tiny meals) and difference in energy level.

Before our recent time change he was already wanting to go to sleep much earlier than normal. I think that it is because he is eating less since surgery and he runs out of energy earlier in the day. If he does that, he will be up for the day by 2-4 a.m. besides the usual short periods of waking up during his sleep. It takes longer to adjust since we didn’t prepare for it this time.

As in everything the need to anticipate, adapt and communicate applies to time changes.

I don’t remember if I posted this picture before or not. It was snapped about a year ago when Billy Ray had gotten up and dressed, done his daily marching routine and was tired. He crawled back in bed and Penny Lane joined him. He then covered her up for a nap together.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom
Parenting Your Complex Child Yahoo Group

Reflections on Communication by Behavior..10/22/06

2006-10-22T08:11:00.001-07:00

I am writing this in Billy Ray’s room before sunrise Sunday morning. All of a sudden it dawns on me we have the old Billy Ray back – the easier one to figure out. You will note that I didn’t say “easy” to figure out. My groggy mind is flooded with some of the changing phases.

That horrifying and wonderful first day, March 29, 1984, when my mother and I went to the adoption agency to pick Billy Ray up he was smiley and happy until we got into the car and he screamed all the way home. Because he was still on soy formula and baby food at 15 months old we had to stop at the store. My mother tried to comfort him but he screamed the whole time I was in the store.

He ate more for his lunch than his former adoptive parents said he ate in a whole day so we decided he must have been hungry but he continued to cry and scream. I rocked him and sang to him trying to get him down for a nap He continued to scream. Mom took over and tried rocking him and giving him a bottle. He continued to scream. Both Mom and I feel dejected. She said she had always been able to comfort babies and couldn’t figure it out. I felt he just didn’t want me.

Finally we put him down in his crib to cry himself to sleep. Once we took his shoes off he stopped crying. His little feet had been crammed into shoes that were two sizes too small for him. He woke up two hours later the smiling happy baby enjoying his new crib and toys pictured here.

In the past 22 years we have spent together, Billy Ray’s changing behavior has often been his way of communicating something needed adjustment. It could be as simple as he’s got energy he needs to release or the bright lights are bothering him or as complicated as some physical problem he can’t communicate but it generally has means something.

The ever present challenge is to figure out what he is communicating. This morning he woke up before 5 a.m. very noisy and bouncing in his bed. I went through the full gamut, did he need to go to the bathroom, was he is pain, etc., etc. Alas, I realize this is the way our mornings were before the range of physical issues the past couple of years. He is feeling better. Mornings are noisy until he “gets it out” of his system. He is happy and full of energy. It is time to wake up and get on with our day whether the family is ready or not.

Until next time,
Peggy Lou Morgan
My Other Blogs: Amazon Author Connect and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom
Parenting Your Complex Child Yahoo Group

If People with Down Syndrome Ruled The World

2006-10-17T12:46:00.001-07:00

I came across this link in my favorites. I got it from a list I belong to and I don’t believe I have ever shared it here. It is from the National Association for Down Syndrome (NADS) and a presentation called If People with Down Syndrome Ruled the World. I love it! It is too long to quote all of it but the following is one of my favorite quotes from that presentation:

“All people would be encouraged to develop and use their gifts for helping:

In our world, too often people with Down syndrome are “DONE FOR” by others, when in fact they are great givers. If they ran the world, their ability to minister to others would not be wasted.”

I talk a lot more about Autism because it seems to impact Billy Ray much more than Down syndrome. However, he does have the dual-diagnosis. In some ways the sweetness, albeit occasional stubbornness, he experiences with Down syndrome is a reward for dealing with the more complicated things he has to deal with.

The above quote reminds me a great deal of Billy Ray’s desire to serve others. He wants to bring coffee to guests, etc. He is not steady enough to carry a full cup of coffee to someone but I pour a little coffee in a cup and follow him with the coffee pot. After he presents guests with their coffee I add more to the cup. It thrills him to do that.

Until next time,
Peggy Lou Morgan
My Other Blogs: Amazon Author Connect and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom
Parenting Your Complex Child Yahoo Group

Billy Ray and Dr. Mike Masterangelo

2006-10-10T08:56:00.001-07:00

We went to see "Dr. Mike" yesterday for the follow-up after surgery. Billy Ray is doing really well and can even slowly start back on general diet which pleased Billy Ray greatly.

Last night he had a chicken patty and mashed potatoes. He was absolutely delighted and a bit mad at me because I wouldn't let him have more. I was being cautious because he ate too much at lunch and it made him sick. It will take time for his stomach to be able to handle larger quantities.

While the surgery (the Nissen) is not just for Autistic children, Dr. Mike said that is necessary for many and that they do really well afterwards. Billy Ray certainly is recovering very rapidly.

Thanks Dr. Masterangelo!!

Until next time,
Peggy Lou Morgan
My Other Blogs: Amazon Author Connect and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom
Parenting Your Complex Child Yahoo Group

Finding Understanding for Your Child

2006-10-03T20:40:00.001-07:00

After a lot of conversations lately where I needed to explain how Billy Ray perceives things, how he needs to receive information and what he is unlikely to understand or accept, I remembered an article written by Susan M. LoTempio, "Service Station" an Oxymoron for Drivers with Disabilities. The article is written for journalists on the Poynter Institute website.

I have been around people who experience various kinds of disabilities my entire life. My Aunt Bonnie is wheel chair bound and I assisted with her chair as soon as I was old enough to help. However, Aunt Bonnie never drove a car. When I read Sue’s article I was shocked at my own lack of understanding in this process. I never thought about things like not being able to reach the hose or receipt.

The same principal applies in so many ways to the lack of understanding in the community whatever disability our children experience.

In Parenting Your Complex Child, I shared:

“In trying to explain to my friend, who is so skilled at looking nice, I realized there was no way she could possibly understand. Unless you live it, you cannot know what it is like to fight with your child to get him ready for an outing, not sure you were going to make it at all. If your child finally cooperates, you can get him to church in his Sunday best while you have thrown jeans on and brushed your hair wet because there is no time left to dry and curl it. You either have to go that way or stay home.” Excerpted by permission of the publisher from Parenting Your Complex Child © 2006 Peggy Lou Morgan, AMACOM, New York, NY 10019. http://www.amacombooks.org/

That friend had been an airline attendant and was presently a musician and pastor’s wife. Her appearance was a major part of her life. They did not have children for her to draw on. It was really unfair for me to expect her to understand. As you can see by the picture with this friend they developed a very special relationship as she got the chance to know Billy Ray for who he is.

It is tiring trying to explain your child’s needs to everyone. I find myself still getting frustrated in conversations with medical personnel who still don’t get it with Billy Ray. I have had to learn to:

“**decide how important it is for someone to understand and then prioritize the energy I will put into communicating to that person. If you meet a rude person in a store or restaurant, you might decide it is not worth it and ignore that person. If the person is a medical or special-education professional, put all the energy you can into determining the best method of communicating your child to them. That way, suggestions and decisions the professional makes regarding your child’s care will be informed decisions.” Excerpted from Parenting Your Complex Child.

I think you have to ask yourself if it is logical for them to understand your child without education from you and whether it is that important in the grand scheme of life.

If you want to read more on this topic, AMACOM has put the chapter quoted from as the sample chapter on their website.

Until next time,
Peggy Lou Morgan
My Other Blogs: Amazon Author Connect and Lighthouse Parents
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Club Mom

Update on Billy Ray 9/30/06

2006-09-30T20:43:00.001-07:00

Thanks for all your well wishes and inquiries about Billy Ray's recovery.

He is doing better than we dreamed he would do based on all the side effects and complications in the last year. He, of course, is not happy with the restricted diet which means soft foods. He wants hamburgers, popcorn, etc.

He is definitely getting tired of milkshakes. He will eat some baby food but throws his nose up at lasanga and other things in baby food that he loves adult food. I am getting as creative as I can with the food processor. I pureed lasanga for his lunch and he ate that well. Tonight I baked a terriyaki chicken patty then cut it up and put in the food processor with a little extra sauce so it would be smoother and softer. Both worked really well.

He will see Dr. Masterangelo for a followup on Monday and hopefully he will add some things. I know that bread is going to be the last to add and BR will hate that.

He is keeping himself busy mornings until he runs out of energy and then rests. I worried that he might be doing too much so soon after surgery but Dr. Masterangelo said it was good for him to be moving around as much as he can. I have been worried that he would hurt himself throwing himself on the floor like he does sometimes playing but he hasn't been doing that as much. He is playing with Penny Lane a lot this week.

The above picture was in our old house in Scotts Mills. I am running out of pictures that you haven't seen. Time to take some more!!

Until next time,
Peggy Lou Morgan
My Other Blogs: Amazon Author Connect and Lighthouse Parents
Websites: http://www.parentingyourcomplexchild.com/ and http://www.lighthouseparents.com/
Club Mom, Yahoo Group

My Son, My Teacher

2006-09-28T08:55:00.003-07:00

A review of my book said there are books by professionals and books by parents but I tried to do both and proved why they don’t mix. That stung a bit because it missed the whole point of the book. I was thinking about it again in the past few weeks as well meaning comments have come in from various sources about how well we adapt to what Billy Ray needs.

There are many wonderful books by professionals and parents that give recommendations on how to take care of your child based on a variety of special needs. The problem is that most of our kids are unique and don’t fit into the mold of every other child with a specific diagnosis especially in they experience combination diagnoses. The reality is that none of the recommendations from professionals or materials I have read worked 100% for Billy Ray.

Billy Ray is my professor. The biggest success we have had is in learning what he teaches about what works for him. The journal and documentation system I created was a lot like taking notes in a classroom. I couldn’t possibly retain everything when he was tutoring me by his reactions to different things but when I looked back at my notes I did see the recurring reactions and change my approach to make it work for him better.

It took a lot to free myself from the need to do everything that professionals either personally or in writing recommended. In the end he has been the real expert in what he needs.

You probably have a great professor in your house too or you wouldn’t be reading this blog or other of my writing. He or she can teach more than anyone else if you will trust yourself to interpret the teaching.

Until next time,
Peggy Lou Morgan
My Other Blogs: Amazon Author Connect and Lighthouse Parents
Websites: http://www.parentingyourcomplexchild.com/ and http://www.lighthouseparents.com/
Club Mom
Parenting Your Complex Child Yahoo Group

Applying Creating a Community Methods to a Hospital Setting

2006-09-23T10:03:00.001-07:00

I just wanted to let you know that I ended up getting up with Billy Ray at 4:30 a.m. to give him pain meds. I didn't go back to bed because I wanted to be sure he was okay. Since I was up I wrote a blog post on my Amazon blog about adapting and communicating in a hospital setting. I wanted to give you the link in case anyone is interested.

Billy Ray is a bit noisy but seems to have more energy. He is sorting toys and his closet which is his favorite form of play. He has also been marching with his walkman. While he seems to have some pain which is normal following surgery, he also seems to be doing better than I expected.

Until next time,
Peggy Lou Morgan
My other blogs: Amazon Author Connect and Lighthouse Parents
Websites: http://www.parentingyourcomplexchild.com/ and http://www.lighthouseparents.com/
Club Mom
Yahoo Group

Energized Though Exhausted

2006-09-22T22:19:00.001-07:00

I know the subject doesn't make sense but it is where I am tonight. We haven't slept more than 2 or 3 hours at time the past 48 hours so forgive me if this is rambling.

Billy Ray is home from the hospital already thanks to Dr. Masterangelo, Brice Stanley, PA-C, Dr. Raudy and a lot of answered prayers. Dr. Masterangelo was thrilled with how well he did in the surgery. He is having some pain which is to be expected but the whole process went better than we dreamed possible.

Of course, now it is time for me to adapt and communicate to this situation because we have an angry guy who wants popcorn, hamburgers, potatoes, and any kind of bread - all of which are no-nos for a while.

I tried several different things in terms of preparing Billy Ray and me for dealing with the hospital setting. I will share those either here or on my Amazon Blog as soon as I catch up on some sleep. However, I wanted to let my blogger buddies know Billy Ray is home in his own bed breathing just noisily enough that I know he is okay though covered up with his favorite quilt over head but not nearly as uncomfortable as before surgery waiting up with acid reflex and/or snoring loudly.

Until next time,
Peggy Lou Morgan
My Other Blogs Amazon Connect and Lighthouse Parents Blog
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom
Parenting Your Complex Child Yahoo Group

Billy Ray's Upcoming Surgery

2006-09-16T22:02:00.001-07:00

I am not sure whether having advance notice of Billy Ray’s surgery this time is a blessing or a curse (smile). He has been in the hospital three times since July 2005 and all have been basically emergencies. You grab what you can and try to explain to my husband what he needs to bring to the hospital.

This time we have over a month’s notice. I am trying to be really organized about it getting his things ready and getting things done at home that end up being abandoned when we have the short notice things. However, it actually seems almost more stressful having this month to worry about the risks, plan for the post-operative care.

Billy Ray is having the Nissen procedure for his advanced GERD (acid reflex). It sounds so scary to me that they wrap part of his stomach around his esophagus to strength it. There are risks for everyone but Billy Ray’s general issues complicate them. I am probably most concerned about getting him off the ventilator after what happened last time. The risks worry me but we cannot just do nothing either. He aspirates food and chokes even when he isn’t eating because the GERD washes things back up when he is sleeping or just going on with his activities. He has tried multiple meds such as the purple pill (Nexum) and others for over a year and nothing has stopped his pain or choking.

The support in our church community is amazing. For example, Bruce (pictured here with Billy Ray) is taking a day off work to be there for Billy Ray during surgery. I am so touched by that. Also the “cookie lady” (Donna who makes the high fiber cookies for Billy Ray because he will eat them better when someone else makes them) and her husband plan to be there. Person after person has let me know that if there is anything at all we just have to ask. Maybe knowing in advance is a good thing after all. I think it also shows the benefit of becoming a part of a community no matter how difficult it is.

I am making him a new album to take with him with lots of his friends and activities in it. I have been reading him Curious George Goes to the Hospital and writing a personalized picture story to co-orindate with that so he will be clear on what to expect.

I probably will actually have more time to blog when he is in the hospital than I have had lately. I have some things from the conference with Dr. David Pitonyak I have been wanting to share with you but haven’t had a chance. I can access the computer in the family room at the hospital if he is sleeping. I will try to stay in touch.

Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Club Mom
Parenting Your Complex Child Yahoo Group
Lighthouse Parents Blog

Who Says Children with Autism Don't Make Eye Contact

2006-09-05T22:21:00.001-07:00

I am preparing an album for Billy Ray with some of his special people so that he can take it to the hospital with him. He is having surgery on the 21st for his GERD. Here are two of the pictures I took Sunday at church. He isn't feeling well so they aren't the best pictures of him but they clearly show eye contact and I wanted to share.

This first one is with Denise, our pastor's wife. Denise is very special to Billy Ray and very insightful at supporting our family. When Billy Ray was in the hospital a year ago she even brought him a wonderful large stuffed dog knowing he couldn't have his service dog there. It was used mightily to comfort him and even to support his IV's.

This is Billy Ray with Dave who is a great friend and support both to our family and my work. Dave kept telling Billy Ray to look at me while I took the picture but Billy Ray just wanted to look at Dave. By the way we all call him Dave but for some reason BR refuses and insists on calling him David.

Until next time,
Peggy Lou Morgan
Blogs: Amazon and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Yahoo Group

Hanging with Billy Ray

2006-08-23T14:04:00.001-07:00

I have been working on another post but haven't had time to finish it. In the meantime, I want to share a pleasant experience with you.

After Billy Ray's Dad passed away we were alone for a year and a half. We used to have "dates with Mom" where we would just go out for dinner or some place. It was generally fun for us.

The past couple of months Billy Ray started refusing to do some of his activities first with support staff and there has even been some reluctance with us. He had meals on wheels which Larry, his stepfather assisted with today. He was a bit hesitant to go for some reason. I finally asked him if he wanted to have a date with Mom when he came back and he was eager. He quickly decided to change clothes and go with Dad for his meals on wheels. Larry said he hugged several of the older ladies on the route and was quick to show Dad which house to turn to. Larry made a big deal of him needing to show him where to go and BR loved it.

When they came back I gave him his Nexum and stalled so he'd have it 30 minutes before eating and then we went to the Mexican restaurant here in LaPine. They are good to him and he loves the food. I don't know when I have seen him eat so well. He was calm the whole time and you could tell he was really enjoying himself. The old charm was definitely present in him. He even engaged in a bit of lunchtime chit chat which is rare for him.

On the way back, I was remembering something one of my granddaughters said and told Billy Ray this little story. One of our daughters-in-law, Rebecca and granddaughters, Eldora and Alena and I were at the mall shopping and eating. Alena said "I like hanging with your Grandma". I told Billy Ray that our pleasant lunch today made me think of that because I like hanging with him. He got the biggest grin and laughed out loud.

We had so much fun we decided to go to the LaPine Inn tomorrow for lunch. Maybe we will let Dad join us if he is lucky (smile).

Until next time,
Peggy Lou Morgan
My Other Blogs: Amazon Connect and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Yahoo Group

Anticipating Reactions

2006-08-19T21:25:00.001-07:00

I was trying to catch up on some of the blogs I read last night. I can really identify with Tina’s post that everytime someone asks her to go somewhere she has to first think of how K.C. will react. It takes planning for every activity that we have to do with our kids to avoid triggers that cause difficult behavior or meltdowns.

I was thinking about how much I have learned over the years to just anticipate Billy Ray’s reaction to different stimuli and situations. Sometimes it is second nature now and I don’t always think to share it with family and staff.

That’s why we started creating our own little community so others would get to know Billy Ray as a person and understand what he needs to be comfortable. We also became aware rather quickly of the places that we could avoid. As in Tina’s post they had problems in the MacDonald’s drive through. We discovered that there are lots of MacDonald’s and service is not uniform. Sometimes it is better to drive past the closest one if another one has better service – can be easier on everyone’s nerves.

We have learned to adapt in multiple ways. Here is something I shared in Parenting Your Complex Child about grocery store struggles:

“An important part of preparation is your choice of store. For example, if your child is really into a specific item and you know that one store will have that item prominently displayed in so many locations you can’t possibly avoid it, choose a store that has fewer problem areas. A moderate-size store may have fewer problem areas for your child. It might be more expensive, but if your child is less likely to go into a behavior and you are less likely to compromise with him to get him out of the store, it might be cost effective. If your child is small enough, you can pick him up to leave, this might be less of an issue than a teenager who throws himself on the floor because he can’t understand why you won’t buy him everything he wants."

“There may be other arrangements you can make for minimizing problems with shopping. For example, Billy Ray loves to buy fresh french bread that comes in paper bags. Our favorite grocery store has a bakery and will have the bread fresh at 5 P.M. each weekday. A bakery clerk wheels a cart all over the store trying to sell loaves, and there are numerous racks around the store at that time of day. If I take Billy Ray into the store, he is going to grab a loaf off each rack we walk by and from the bakery clerk as well. By the time I try to get it away from him he has handled it too much or it has been damaged so we have to buy it. It does not keep well, and he eats very little of it once it is home. We really do not need five loaves of french bread. Instead of changing stores, I talked to the manager about what time of day the racks are out and modified our shopping times accordingly.” Excerpt used by permission of the publisher from "Parenting Your Complex Child" by Peggy Lou Morgan © 2006 Peggy Lou Morgan, published by AMACOM, division of American Management Association, New York, New York. http://www.amacombooks.org/

Little by little adapting to avoid triggers and stresses in the community does get easier but it takes time.

Until next time,
Peggy Lou Morgan
My Other Blogs: Amazon Connect and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom
Yahoo Group

Our Day..8/16/06

2006-08-16T22:00:00.001-07:00

Billy Ray is gradually get back to normal after his sinus and ear problems and adjustment to his support staff leaving. Today he went with his stepfather and our consultant friend, Keddie Wanless, who trained Larry for the meals on wheels route. They are going to do it together. Dad and Billy Ray both seemed to enjoy it.

Recently Brice Stanley, his PA-C, said that Billy Ray could pretty go back on a general diet with a very low dose of his diabetes medication. I think that must be helping his stomach pain because he is needing less and less pain medication.

Overall, it was a good day. We are adjusting pretty well to working around Billy Ray’s schedule and having him do some of the things we have to do too. We are doing extra laundry, which Billy Ray especially enjoys because I am getting things ready for a garage sale at the church. We have not any episodes of agitation for days so he must be comfortable with the changes.

In looking at his journal tonight, I noticed that even though he hasn’t needed extra medication for agitation, his tolerance is increasing. For example, yesterday the television in the living room acted up and it took Larry a while to figure out the problem and fix it. Billy Ray just went with the flow and no agitation. That probably would have been very different even a few weeks ago.

We seem to be getting smoke from the forest fires here in Oregon even though we are quite a ways from it. Billy Ray and I are both sneezing. Apparently, many people are getting sick from the air.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Blog and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom
Parenting Your Complex Child Yahoo Group

Catching Up..8/15/06

2006-08-15T16:24:00.001-07:00

I feel a bit out of touch with all of you. We haven’t shared much lately nor had a chance to read many of your blogs. It is definitely time to catch up.

As you know our support staff quit almost two weeks ago. Whether it is the end of an extraordinary great relationship for Billy Ray or one that didn’t work well there is always an adjustment period when you lose a staff. You wonder if it is worth going through it again because of the loss for Billy Ray, time involved in training, the inconsistency that always occurs at least at first which adds to BR’s agitation, various employee-employer issues, etc., etc.

In Parenting Your Complex Child, I wrote:

“With all this to consider, you may wonder whether it is worth it. I have been there many times. The reality is that if your child requires one-on-one supervision, sometimes on a twenty-four-hour basis, and her care is exhausting, you need help. You can only live sleep deprived for so long. Your marriage could be damaged by an inability to communicate with each other. If you have other children, you may not be able to meet their needs without help with your complex child. It is difficult to take care of your own medical and dental needs let alone get a haircut occasionally without help. You can work through the difficulty of having in-home staff if you stay on top of the major issues, preventing as many problems as possible before they occur. Be clear about expectations from the initial interview.” (1)

Situations have changed a bit since I wrote that. With the difficulty finding in-home staff, many times you work around their availability. For example, a prior staff had her daughter in a private school and could not start her day here until she transported her daughter. She also needed to be off right on time. It seemed a reasonable request so we accommodated the schedule but it had impact on the Billy Ray’s schedule as well as family appointments, etc.

Many people who do this type of work make very little money so time off is problematic for them. If they are not able to go with you because of their own family needs, it is a financial problem for them if we wanted go to visit family for a few days or we wanted to take Billy Ray to one of my events. We took Billy Ray to one of my conferences early last summer. The then employee was a single mother who struggled to provide a private education for her daughter. She missed a day and a half of work because of it and I felt guilty the whole time we were away.

In my book, I suggested “If your family can endure it, I recommend you work on getting your child more focused and at least started on a comfortable schedule before getting more help. If you bring in outside help who are unfamiliar with your child, they may not maintain the routine you are trying to get your child you used to. That can disrupt the process for a while.” (1)

In a sense, I didn’t follow my own advice. Last summer Billy Ray had just gotten out of the hospital from the crisis summarized here and referenced various other places, still very sick when we hired our last staff. The entire family had come through a very traumatic experience. It has been necessary to make changes in routines and procedures periodically because of Billy Ray’s experience. That is difficult for Billy Ray and for staff as well as family at times.

I still feel Support Staff are a Valuable Resource. However, hindsight is 20-20, it might have been better to regroup with Billy Ray than to start a new staff right away. Thus, we are going to take our time and think things through before starting that.

Additionally, Billy Ray is going to have surgery for his GERD (acid reflex) next month. He is finally physically stable enough that we can go forward with that. This should reduce his abdominal pain considerably.

Once he has recovered from that we can get him on schedule before we decide how much help would work for our family. Sequence is important to Billy Ray as discussed here. It will be easier to get him established in his sequence and then train staff instead of having to retrain them when he is more physically ready to restart his schedule.

(1) Excerpted by permission of the publisher from "Parenting Your Complex Child" by Peggy Lou Morgan © 2006 Peggy Lou Morgan, published by AMACOM, division of American Management Association, New York, New York. www.amacombooks.org

Until next time,
Peggy Lou Morgan
Amazon Blog
Lighthouse Parents Blog
Websites: www.parentingyourcomplexchild.com and www.lighthouseparents.com
Club Mom
Parenting Your Complex Child Yahoo Group

We're Still Here...8/8/06

2006-08-08T17:35:00.001-07:00

It is a little crazy around our house. We no longer have an in-home support person since last Thursday. I'm not going to elaborate except to say there is always an adjustment when there is a change. Actually we are doing pretty well at readjusting.

I put a new visual up today on my main website Going to the Clinic if you are interested. It is the update since we moved from Portland to LaPine. It is just took me a while to get it posted.

I just finished an article for the PTA magazine, not sure when it will come out. Club Mom has more of my articles up. I am doing more articles while I am in with Billy Ray while he goes to sleep at night. That's how I got my book written so I'm used to working around his schedule.

I will try to get more regular with my blog again but I will probably be doing it at night after Billy Ray goes to sleep instead of first thing in the morning when support staff used to arrive.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Connect and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom
Yahoo Group

We're Still Here...8/8/06

2006-08-08T17:35:00.000-07:00

Entertaining with Billy Ray

2006-08-05T16:17:00.001-07:00

I thrive from entertaining. It does not need to be glamorous parties. It can be a couple of friends over for a simple dinner. Billy Ray shares that love of entertaining and we have done it together since he was little. I wrote about it regarding the holidays here but it is the same principal of adapting and communicating.

Last Wednesday night we were honored by having Billy Ray’s primary medical provider Brice Stanley and his wife Michelle, Angie Enos who is the Physician’s Assistant who backs up Brice for Billy Ray when he is away, and a medical student who is thinking of doing a study on Billy Ray for his thesis as our guests. I thought it would be good for all to see Billy Ray in his own environment. BR loved it.

Billy Ray and I made the punch together. When we saw Brice and Michelle pull up I supported Billy Ray in opening the door and saying welcome. He bloomed with joy. Then we cued him to use contact to ask each if they wanted punch. Instead of repeating the cue he said “yes” but they got the idea. Together we filled punch glasses half full so that he could carry them and he delivered each with pride. Billy Ray was proud to show his room to his “Dr. Brice” and clearly enjoyed sitting next to him at the table (I was on the other side, cutting meat, etc.).

I wish that I had taken pictures. The thought occurred to me but I thought that maybe Brice might not want to advertise his visit since he clearly can’t go to every patient’s house. Later he said it was fine to share and that he had enjoyed it a lot too.

There is no time that Billy Ray and I work together as well as when we have the common goal of preparing for company. He has that social bug just as much as I do. During the time between the death of Billy Ray’s Dad and our remarriage to Larry, Billy Ray and I entertained frequently. There is something about it that energizes both of us to go on with our day to day routine.

There is so much that he can do. It is motivating to him to control his habits (such as putting his fingers in his mouth while putting clean dishes on the table). We actually only have to stop and rewash his hands only a few times when cooking and setting the table.

We have not entertained much in the past couple of years because of Billy Ray’s illness, moving, my book, etc., etc. but it was so revitalizing to do it this week, we are motivating to try again soon.

Until next time,
Peggy Lou Morgan
Amazon Blog
Club Mom
Lighthouse Parents Blog
Websites: www.parentingyourcomplexchild.com and www.lighthouseparents.com

Time to Call Murder What It Is

2006-07-31T17:21:00.001-07:00

When I wrote My Outrage, Mother Gets Suspended Sentence, it was possible to see a bit of the mother’s frustration while not condoning her actions. Mrs. Markcrow had taken Patrick, her 36 year old son to the emergency room and tried to get help for his self abuse. The emergency room doctor testified that he had never seen anything like that behavior. Nevertheless, the hospital sent Patrick home for his mother to deal with. Of course, she was wrong to suffocate Patrick and I am outraged still whenever I think about the suspended sentence.

That story and the story of Katie McCarron pictured herein is a different story with the same tragic end. As Christina Chew’s post states in its’ title Katie McCarron was Beautiful, Precious and Happy Katherine McCarron.

It is time that we look at killing children and adult children with disabilities as what it is, murder not hopelessness. Parenting a child who experiences any form of special needs means a life change. We will become someone we never knew that we would be, for the good or the bad.

There is no way we will remain unchanged by parenting a disabled child. We may change into angry and frustrated people fighting the plight of our child and the whole family. That may be a natural place to start. Anger is a part of grief. Staying stuck in that is harmful for the child and parent(s).

Acceptance can be a powerful step. It is not a slam dunk. However, recognizing that there are some things that can be changed and some that must be accepted is absolutely necessary to move on into a more peaceful way of life. Acceptance brings with it a joy in every milestone and in the little things.

The choices we make about the care of our children and acceptance of the impact a disability brings to our lives will make a major difference on whether or not we murder our child. Murder is murder usually for some purpose be it greed, selfishness or thrill seekers. Parents murdering their children is not mercy killing especially in cases like Katie McCarron who was so beautiful and happy.

Have I made foolish mistakes trying to make life better for Billy Ray and me? Absolutely! However, I have want to state straight out the thought of killing him has never ever crossed my mind.

I want to share through some embarrassment that as a teen I experienced a lot of suicidal depression. I have considered it once since becoming Billy Ray’s mother(having nothing to do with him) but it was short-lived because of Billy Ray. He is unequivocally the cure of my suicidal thoughts not the cause of them. He is my symphony with the low and the high notes. It has been a different life than I might have dreamed of but I am so glad we have shared it together.

Until next time,
Peggy Lou Morgan
Amazon Blog
Club Mom
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Lighthouse Parents Blog
Yahoo Group

Trying to Find Cause of Billy Ray's Pain

2006-07-28T07:59:00.001-07:00

Billy Ray came through the colonoscopy fine yesterday. Dr. Bochner said that everything looked normal. Biopsies were done so we will have to wait from the results but he didn't expect them to show anything.

That is, of course, good news. At the same time the frustration on not being able to explain his pain. Dr. Bochner seems to feel it has something to do with diet but none of the tests done to this point have identified anything as the culprit.

My mind is racing over the past year. The doctors said that pain for a few weeks after his appendice and exploratory surgery was normal. It has continued for over a year now. However, we have made significant changes in this diet, etc. because we have dealt with what appeared to be diabetes (but has now stabilized and may have been only because of problems with the pancreas) and the acute episode of pancreatitis.

While some swear by "diet" everything, my personal experience has been that I can't use those products because they make me ill. Of course, Billy Ray does not have my chemistry being adopted but I have been wondering if the change to products like that to deal with his blood sugar and pancreatitis issues could be having some impact on his abdominal pain.

I called Brice Stanley, his primary medical provider, this morning. I wanted to maybe test going back to his regular diet without some of the artificial sweetners. He thought that was worth a try until he sees Dr. Masterangelo (gastric surgeon) again on the 14th. So for at least a couple of weeks BR can enjoy some of his favorite foods and see how it goes.

In the back of our minds has been the Nissen Fundoplication surgery which Dr. Masterangelo has recommended doing if the acid reflex (GERD) didn't improve with medications. However, he wanted BR to be as stable physically as possible before doing it. I haven't not been anxious to do that because idea of wrapping his stomach around the base of his esophagus is scarey. However, we do seem to have come down to few options or answers to his pain. If returning him to a more normal diet (for him) doesn't improve the situation
by the appointment time we will likely look at doing the surgery.

It is my understanding that this procedure has been frequently done of complex children. If any of you have experience with it, I'd love to hear from you.

He got up about 6:15 a.m. and wanted to be rocked for a little while and is back to sleep. I assume he is tired from the events of the last two days including the "cleansing" and the need for sedation for his procedure. At nearly 9 a.m. he is still sleeping.

That's where Billy Ray is today. I will keep you posted.

Until next time,
Peggy Lou Morgan
Club Mom Special Needs Children Expert
Amazon Blog
Websites: www.parentingyourcomplexchild.com and www.lighthouseparents.com
Lighthouse Parents Blog
Yahoo Group

Billy Ray Multi-Tasking

2006-07-26T21:11:00.001-07:00

I could resist snapping this picture of Billy Ray. He doesn't really use the computer except for occasional games but he loves the screensaver. It is made up of family pictures and activity pictures. It is sort of his nightlight as well. Tonight right after his support staff left he went into his room and I went to get something before following him. When I came in this is what I saw. He is doodling, listening to the walkman and watching the screensaver all at the same time.

The interview with a Hobart, Tassamania, Australia radio station yesterday was great fun. I hope to chat with them again at some point.

Billy Ray's day of preparing for his colonoscopy went pretty well all things considered. I probably would have been as grouchy as he was if I had to go through it. We are off bright and early for the procedure and then promised to take him out for breakfast.

Until next time,
Peggy Lou Morgan
Amazon Blog
Lighthouse Parents Blog
Websites: www.parentingyourcomplexchild.com and www.lighthouseparents.com
Yahoo Group

Update on Us 7/25/06

2006-07-25T11:41:00.001-07:00

To give you a quick update on us. This is another busy week.

Billy Ray switched his regular Meals on Wheels route from Wednesday to today. I am really good at making sure we don’t schedule appointments on Wednesdays to interfere with his beloved Meals activity but I didn’t realize we would have to start the bowel cleansing so soon. We decided it might not be a good day for him to do his route. The Senior Center graciously helped him switch days.

I am excited with two interviews that will occur in the next 24 hours. The first is with a radio station in Hobart, Australia. I am not clear if it will be live or taped and what the call letters are. I wrote to the Australian publicist to clarify and if I find out before the interview (4 p.m. my time today – Tuesday and 9 a.m. Wednesday in Hobart) I will add a post right away for my Australian readers.

The second interview is a “pre-interview” at 7 a.m. tomorrow with a Christian radio program that I so much want to do. I will give you more details when I know for sure it will make it to the air and when.

Immediately after that interview we will have to start the wonderful bowel cleansing protocol for Billy Ray. He will need to stay on clear liquid the rest of the day which may be a major challenge. It could be an interesting day.

On Thursday we have to be at the hospital in Bend (27 miles from home) for his colonoscopy. As I wrote before I am pleased with the anesthesiologist that will be handling the sedation so I am not as anxious as before.

I will try to check in tomorrow but it may be Friday before I am able to post again.

Until next time,
Peggy Lou Morgan
Amazon Blog
Lighthouse Parents Blog
http://www.parentingyourcomplexchild.com/
www.lighthouseparents.com
Parenting Your Complex Child Yahoo Group

Being Mom or Dad First

2006-07-24T15:06:00.001-07:00

During the recent conference sessions by David Pitonyak, Ph.D., he talked a lot about difficult behaviors being “messages” and usually about some unmet need. That does fit with what I have been calling “communication by behavior”. I must admit I tend to think of Billy Ray’s communication as being more physical issues because that has often been the case.

On the trip home from the conference, I thought a lot about Billy Ray’s behaviors and if there were needs we might be missing. On Saturday, I downloaded several of Dr. Pitonyak’s handouts from his website. One of them was called a Note to Parents. It was another of those Ah Ha moments.

The point of A Note to Parents is that we should be Mom or Dad before the other multiple roles we must assume in our children’s life. It is so easy to become so involved with doing things for our kids that we lose being the Mom or Dad.

As my regular readers are well aware Billy Ray’s behavior deteriorated shortly after I had submitted the manuscript during some major health issues. We nearly lost him last summer. A year ago tomorrow he had the second surgery in 47 hours and wasn’t able to breathe on his own for nine days. During the past year we have been working with a team of professionals to find out why the pain continues after the known issues have been addressed.

The Ah Ha moment was that I realized I have been so busy trying to work with the team of doctors, train support staff besides my work related to my book. I have been here and caring for Billy Ray but have become more the caregiver and less the Mom.

Dr. Pitonyak told the story of a young boy who into self injurious behavior when he had ear infections. After that had been address the child repeated the behavior. Dr. Pitonyak, the wise storyteller and almost comedian that he is, said that the child had learned that “Mothers are liars” they say they will only be on the phone for 5 minutes and then are gone for 30 minutes, etc. The self injurious behavior had become learned behavior because he learned that if he did that he would get his mother’s attention immediately.

With that illustration in my mind I took time to watch one of Billy Ray’s favorite movies (Sound of Music) with him this weekend. There is a line in there where the children are telling their governess about all the tricks they have pulled on past governesses. She says “you are such nice children, why would you do those things.” They respond “how else am I going to get Father’s attention.” Ah Ha!!

Major parts of his difficult behaviors are probably physical and I am working on additional training for Billy Ray’s support staff but it seems likely that some of his “messages” are about the reduced closeness during all that we have gone through in the past year.

Yesterday, I read him the visual I created about his adoption and we talked about how glad I am that he is my son. We spent time just having fun together.

Until next time,
Peggy Lou Morgan
Amazon Blog
Lighthouse Parents Blog
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Parenting Your Complex Child Yahoo Group

Home from Direct Supports Conference 2006

2006-07-22T08:05:00.001-07:00

We are back from the conference on Direct Supports at Oregon State University. Billy Ray did fine while we were away but seemed really glad to see us and we him. He is very much back to normal (active and a bit noisy) this morning.

The conference was wonderful. I enjoyed it very much and learned a lot. My own presentation was a little disappointing. I got lost with my power point slides and it threw me after that. My audience was gracious and we had some good interchange. I was talking with my pastor about my presentation later that day. He laughed that after all these years of speaking he had the same experience last Sunday in the first service. I expected it to happen when I started speaking a couple of years ago but it has gone well for the most part. It was surprising to sort of freeze up after I’d had some practice. It might be learning to use our Power Point projector. For whatever reason, we just need to get past it because there is still information to share.

I wish that all of you could have been there to hear Dr. David Pitonyak, one of the keynote speakers. I also had the opportunity to attend several of his other sessions during the conference. He is absolutely wonderful. His humor is a powerful tool in making his points. He definitely catches your attention. I got an opportunity to chat with him at the hotel when we were both getting coffee one morning. I asked his permission to share some of the things he said with you. I will be sharing some of it with you here and on my Amazon blog soon. I don’t want to get too much into it on a Saturday blog since I write under the influence of Billy Ray (smile).

The other keynote was Nancy Ward who has been actively involved in People First. Hearing her talk about her experiences and those of several of her friends who experience disabilities was very enlightening. I had the opportunity to chat with her over dinner the first night as well. I enjoyed meeting her very much.

Until next time,
Peggy Lou Morgan
Amazon Blog
Lighthouse Parents Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group

You Get What You Expect from Your Child

2006-07-17T12:10:00.001-07:00

In my Amazon blog post Those Ah-Ha Moments I wrote about the things we hear or read that is sort of like a light bulb flashing in our head helping us to understand why our kids do something. One of those moments came to me reading The Explosive Child by Ross Greene, PhD

Dr. Greene states: "**your interpretation of a child's explosive behavior will be closely linked to how you try to change this behavior. In other words, your explanation guides your intervention."

Dr. Greene says that we must assume an explosive child would do well if he or she could. It is natural to assume that the child is manipulating us or misbehaving. I have been there with Billy Ray and still struggle at times to change my approach. What we say and how we respond does make such a difference in how our child will respond.

In the old days when I was trying to figure out why Billy Ray yelled so much, I thought or even said “would you just shut up”. One time Billy Ray even said “I can’t” and he was right. I needed to learn to change approaches and adapt to him. He couldn’t adapt to us.

I loved Dr. Greene’s comments about the normal approach to talk to a child about why he or she acts the way they do. He says the child is the worse person to ask. I heartily agree. Billy Ray has proved that over and over again. I need to listen to him through his reactions to activities or situations not expect him to be able to put the problem in words.

I am off to Corvallis, Oregon to Oregon State University for the Direct Supports Conference on Wednesday and Thursday. I am really excited because the keynote speaker is Dr. David Pitonyak who I wrote about previously.

Dr. Pitonyak writes: “My practice is based upon a simple idea: difficult behaviors result from unmet needs. In a sense, difficult behaviors are messages which can tell us important things about a person and the quality of his or her life.”

My presentation is the first time slot following the keynote on Wednesday so I am hoping to get to attend lots of other sessions including as many of Dr. Pitonyak’s sessions as I can after that.

Until next time,
Peggy Lou Morgan
Amazon Blog
Lighthouse Parents Blog
Parenting Your Complex Child Yahoo Group
Websites: www.parentingyourcomplexchild.com and www.lighthouseparents.com

Becoming Experts on Experts

2006-07-13T09:46:00.001-07:00

I recently wrote an article for Club Mom about the job of parenting a special needs child. It is not up on their site yet but I will post a link to my articles when they are up. It is definitely true that parenting a complex special needs child is a career in itself.

A post on the Mote Guardian Blog about parents going online to understand their children’s disabilities reminded me of something I shared in in Parenting Your Complex Child. It was taken from an email from Billy Ray’s former doctor who allowed me to use it but without his name.

“*** I would think the strength of your book would lie in it's being honest in presenting how frustrating the struggle has been and how much experts often don't know. You could describe yourself as an expert on experts, I guess!”

“Becoming “an expert on experts” is an undesirable title. The only way a parent becomes this is to have crisis after crisis taking the parent from one professional to another.” Excerpted by permission of the publisher from "Parenting Your Complex Child" by Peggy Lou Morgan © 2006 Peggy Lou Morgan, published by AMACOM, division of American Management Association, New York, New York.

When our children experience various maladies or challenges we have to become experts in areas we were never really aware of. Our education and career seems to center around learning what they need us to learn so that we can care for and advocate for our children.

Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Yahoo Group
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Lighthouse Parents Blog

An Inspiration - Man with Down Syndrome Turned Exercise Coach

2006-07-11T20:47:00.001-07:00

I was surf around on the Net tonight and found this link to a story about a man with Down Syndrome who is a fitness coach to others who experience Down Syndrome and some other disabilities. It is such an inspiration I want to share it with you.

It is so important that we look to what our children can do more than what they can't and try to help them do what they love most.

Until next time,
Peggy Lou Morgan
Amazon Blog
Lighthouse Parents Blog
Parenting Your Complex Child Yahoo Group
www.parentingyourcomplexchild.com
http://www.lighthouseparents.com/

Setting Reasonable Boundaries

2006-07-10T10:25:00.001-07:00

In an earlier post we discussed allowing our complex children and adults to experience life with its’ normal risks (such as a burn on the stove). Besides the risks we all experience in life there are boundaries we have to accept. Adults are not necessarily free to do everything they want to do despite being independent adults. With all that has happened with Billy Ray’s physical problems and other significant changes in his life (finishing his school eligibility, moving to a new community, hiring a new weekday support staff) we are having to think more about what is reasonable to allow Billy Ray to experience and to expect from him.

Billy Ray is testing boundaries long established in his life. There are probably several reasons for that. The structure in his life has been impacted by recurrent health problems and the significant changes noted above. It could also be that he is becoming more and more adult. As shared here, Billy Ray is demonstrating some higher functioning skills that he experienced prior to the seizures that changed his life 12 years ago.

Boundaries have to be looked at it terms of future planning as well as present living situations. There are things that will apply to both. However, if patterns are set at home it may be difficult for him to adjust if he had to be in a group setting, etc.

His present situation is that he lives with his Mom and stepfather with a support staff coming in during the weekdays to give Mom and “Dadgert” some break to do needed things. Dad and Mom alternate being his one to one support the rest of the day weekdays and all weekend. As I state in our staff manual, while this is effectively a residential treatment center for one, it is still a family home to three of us. Billy Ray doesn’t have free rein to go into our bedroom, my office, etc. and get into our things. We have a right to our boundaries too.

If he were to be in a group home or in apartment with a roommate, he would need to respect others’ boundaries too. Lately he has wanted to come out into the living room in nothing but his underwear. Part of this is because his beloved western jeans are not comfortable with his abdominal pain but we have comfortable sweats or even his bath wrap as an alternative for him during those periods. In a group home or other setting he wouldn’t be allowed to run around in his underwear. Additionally, it is inappropriate here because of visits from Larry’s granddaughters, etc. This is an example of thinking about a boundary both presently and in the future.

Present support staff has been with him just less than a year so is a bit unsure of prior boundaries. Billy Ray has been sick all of the time since he has worked here. Additionally, Billy Ray is coming out of the out of control he was demonstrating when staff was hired last August. Billy Ray was very much
The Explosive Child as in the wonderful book I am reading by Ross Greene. I think part of the reason for his explosions has been sudden onset of pain. He has never handled pain in the way many children do (crying for Mom to kiss it and make it better). He interprets pain as something that someone is doing to him and it makes him mad! Staff is understandably a little hesitant to invoke the explosiveness. We need to support staff in understanding how to enforce realistic boundaries.

Billy Ray is smart enough to play Mom v. Dad v. support staff game as I wrote about so he is going to test his limits for all they are worth. In a way, he feels more secure when limits are established because he knows how far he can go and no further. Thus, it becomes important for all parties working with a child to be on the same page and as consistent with the other as possible.

No matter where he lives there needs to be boundaries. Observing realistic ones now will help his future to be more successful.

Until next time,
Peggy Lou Morgan
Other Blogs: Amazon Blog and Lighthouse Parents Blog
Parenting Your Complex Child Yahoo Group
Websites: http://www.parentingyourcomplexchild.com/ and www.lighthouseparents.com

Feeling a Little More Hopeful

2006-07-06T10:42:00.001-07:00

Not a lot to share yet but since I am taking you with me on this journey to find the cause of Billy Ray's pain and seeming deteriorating health, I wanted to share that I am feeling more hopeful today.

Not only am I frustrated but the other members of the medical team are probably frustrated because we have tried so many things and nothing demonstrates why the issues continue. The team called in Dr. Rick Bochner from Bend Memorial Clinic.

Dr. Bochner saw Billy Ray in the hospital and again at his clinic yesterday. We went over the results of lab tests run while BR was in the hospital. I am relieved to find he does not have a sensitivity to glutten because that is something I feared. Billy Ray is a big bread fan and there is so much talk about glutten free diets I have asked to have him tested for it several times over years but it hasn't been done. This time Dr. Bochner honored my request and eased my mind considerably.

The thing I felt best about in the visit with Dr. Bochner, though the glutten thing was a big relief, was that Dr. Bochner said "I want to stay with it and find out what is making Billy hurt and fix it." That commitment is encouraging. That is especially true since the other two members of the team are equally committed and have gone far beyond what many providers might do.

Next on the agenda the wonderful colonoscopy on the 27th. I am so relieved that Dr. Bochner had his assistant work to schedule the colonoscopy when both he and Dr. Raudy will be available.

As shared before it is frightening when we have to call in an anesthesiologist because of his history on not being able to come off the ventilator. We met and immediately respected Dr. Todd Raudy when he sedated Billy Ray for a scope of the upper abdomen in April. I have met with many anaesthesiologist over the years not only for Billy Ray but for prior disabled clients. It is clear they understand their field well but none have communicated so much understanding of the specialized needs of disabled children and adults as Dr. Raudy did.

It is still onward and forward. Billy Ray is up and down but able to participate in his Meals on Wheels yesterday before his visit with Dr. Bockner and is now on his Thursday activities.

Until next time,
Peggy Lou Morgan
Websites: www.parentingyourcomplexchild.com and www.lighthouseparents.com
Blogs: Amazon Blog and Lighthouse Parents Blog

Reading the Signs AGAIN...7/3/06

2006-07-03T08:55:00.001-07:00

The weekend has been a bit up and down. Billy Ray has continued to have pain some of which may be caused by the medication for the yeast in his esophagus. Two of his medical providers have said that it could cause irritation and even stinging.

As in the past he has had severe pain sometimes with communication by behavior. Once the pain is treated with his meds, he is anxious to be busy at least for a short time. This weekend he went for short periods with his stepfather to our storage unit to help organize and remove what we can. It is just around the corner from us so when he is tired he can come home and go back later if he wants to.

The revised picture schedule for the week is now in draft. He seems to have more irritation during the week than on the weekend. At this point, I am trying to easedrop a bit to ascertain if he is having more pain, additional staff training would be helpful or the schedule needs more honing. It is a constant need to Read the Signs.

When there doesn’t seem to be any easy answers I tend to pull away as much as possible and try to seek guidance spiritually. That part of the journey is an important one but not necessarily what you expect to hear about when you come to this blog. I have created another blog that will specifically discuss the spiritual part of our journey. It is Lighthouse Parents Blog if you would care to visit.

Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Lighthouse Parents Blog

Reading the Signs AGAIN...7/3/06

2006-07-03T08:55:00.000-07:00

Keeping on, Keeping On..7/1/06

2006-07-01T16:42:00.001-07:00

Billy Ray was discharged from the hospital about 3:30 p.m. on Thursday. I apologize for not writing that on here sooner because I got some wonderful notes from fellow bloggers worrying. It has been hetic. Billy Ray went into the local clinic Friday morning and the case manager came to the house soon thereafter to do a in-home support budget plan for the new year that had been rescheduled until it couldn’t be rescheduled any longer.

I started to write last night but was at a loss to know what to say. It seems like I complain about my frustration too much and that dispels the joy of being Billy Ray’s Mom that I want to convey because it is real. Do I tell you about a nurse who caused problems? Probably not, since there is only one hospital in our area. We might have to go back someday.

I would like to tell you that all is well and we fixed the problem. That is what you want to hear and what I want to believe. My gut says that’s not true. As shared previously Billy Ray was almost sent home from the emergency room in July 2005 with increased psychiatric medications because the ER doc said there was no medical reason for his pain. If advocacy had not convinced the doctor to order a cat scan he would probably have died because his appendix was already leaking bacteria into his abdomen in addition to other issues the surgeon found. My “gut” says we are in the same situation but it is not as simple this time. Billy Ray has a strong relationship with his primary provider and the surgeon and I know that they are doing everything they can to find whatever it is.

They did find that he has yeast in the esophagus but since that is believed to be caused from recent antibiotic treatments for his sinus infection I don’t think that is the answer to his months of pain

I lost my cool at the hospital. I haven’t done that much since I learned to advocate better but when I am afraid for Billy Ray and frustrated that no one is understanding his needs it is a real struggle. I was embarrassed for myself and others on the team who were probably effected.

I feel bad for the team, especially Brice Stanley, PA-C, who is surely as frustrated as I am at trying to find the answer. He has done everything that he could do and more than many would. I am so thankful that he is our family primary provider. It just seems that all the things going on with Billy Ray makes finding answers harder. One thing masks another.

A routine thing happened when he was admitted. I was asked to do a code status. While there was nothing terminal in his present situation, they had to have information about how to handle such things as his heart stopping. I did feel very good about discussing it with Brice and Dr. Masterangelo who have been involved in the team since the ventilator episode last year and felt that we came up with a reasonable plan for that event if it should occur in the future.

Basically we are going to continue to do everything we can to help Billy Ray to have the most quality life he can: the best medical care we can provide and the best activities and care we can provide at home and in the community. Hopefully helping him to have as many smiles like this as possible. However, we are not going the ventilator route again.

Having made that decision it felt peaceful that we were in agreement. However, that night when I couldn’t sleep at the hospital my mind raced to something I had read in Breakthrough Parenting for Children with Special Needs by Judy Winter. In the foreword to that book, Gail Williamson wrote about Judy Winter’s loss of her son: “I am sure the pain of losing a child is just as strong no matter what the child’s needs are. The difference, I believe, is that the void can be cavernous when a parent loses a child with special needs. All those daily activities immediately cease, and you are left alone with time – and time can become your enemy.”

Thinking about that I realize more fully as I have said so often that he is the music and the notes of my symphony, he is the music of my life. It makes me question whether I fear for him or for both of us. Without doubt, I fear his suffering and that is something I will fight with everyone ounce of strength I have. However, I have to admit since I believe that there are multiple types of healing: becoming well through great medical care or divine healing here on earth or in Heaven, the fear of losing him is more selfish. It terrifies me.

He has had a pain pill which helped and now is enjoying time with his stepfather. He gets relief and then wants to do things. We are going to do what we can to give him quality in each day and pray that somehow what seems to be hidden from the doctors will become clear and be fixable.

It has been a struggle to know how transparent to be with you here but seemed important to do so.

Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Yahoo Group
www.parentingyourcomplexchild.com
www.lighthouseparents.com

The Ramblings of a Sleepless Night - More on Awareness

2006-06-28T23:04:00.001-07:00

We are at St. Charles Medical Center in Bend, again. Billy Ray is continuing to have pain and weird lab results that keep the whole team hopping. "Dr. Brice" had him admitted this morning.

I am writing this in the middle of the night when BR is sleeping but I can't. This time the hospital put us in a slightly bigger room that a rollaway bed will fit (barely) in but I can't seem to relax on in.

Like Sue Rubin wrote "The argument dividing the autism community regarding the need to cure autism as opposed to accepting autism as a natural emission of diversity has been on my mind lately."

I wrote about Awareness my prior posts and also asked for your input relative to why people were somewhat critical of the Autism Everyday, a video by Austim Speaks. The feedback received seems to suggestion that much of "awareness" is really protraying autism as a death sentence leaving no room for joy and satisfaction together with the frustration.

I saw a bumper sticker yesterday. It said "Think Autism, Think Cure". It seems to me there is one main problem with the cure goal, it may take years and probably won't have an impact on some of our kids. Of course, we should fight for a cure but not because so focused on the cure that we lose the good in today, helping our children to be the best THEY can be. It goes back to an article I have loved and quoted for many years, "Don't Mourn for Us" by Jim Sinclair.

Mr. Sinclair recognizes the natural grief a parent experiences when they get the dreaded diagnosis. At the same time he suggests: "But this grief does not stem from the child's autism in itself. It is grief over the child the parents had expercted.*** But this grief over the fantasized normal child needs to be separated from the parents perceptions of the child they do have; the autistic chidl who needs the support of adult caretakers and who can form meaningful relationships with those caretakers given the opportunity."

In a real sense the idea of cure needs to be put in that same perspective. We should give every dime we can spare to places like Autism Reserach Institute and other reputable organizations seeking a cure, advocate for research but make helping our individual child to have the highest quality of life possible.

Thanks for your best wishes through comments, email and my Yahoo list. Billy Ray is actually a little better tonight. I will try to keep you posted.

Please note that the links file is at home on my own computer and I tried to cut and paste the link for my Amazon Blog but the computer in the hospital family room will not left me cut and paste. If you want to see the Amazon Blog scroll down to a prior post to click on it.

Until next time,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group

The Importance of Chosing the Right Medical Provider

2006-06-26T09:30:00.001-07:00

I have talked a lot about Brice Stanley, PA-C, Billy Ray’s primary medical provider in terms of the importance of Doctor-Parent relationships. The relationship with your child's provider is important; however, I want to reinforce the importance of the thoroughness and attitude of the provider. I hold Brice out as an example to all medical providers whatever their degree because of his compassion and because of his thoroughness.

The only doctor I ever fired had Harvard Medical School degrees all over his offices and was a well-respected specialist. He refused to look at the documentation I prepared with Billy Ray’s history, etc.. He would say “just tell me” but then cut me off in the first sentence. Examinations were minimal but he kept writing prescriptions. I could not trust his judgment because he didn’t have a true understanding of Billy Ray.

In an exam a few weeks ago Brice mentioned that one thing he has learned from Billy Ray is to never stop at the “usual” but to look for the “unusual” as well. That is so important. Over the years, I have heard the word “usual” so many times, I have come to hate it. There is nothing usual about Billy Ray.

If our complex special needs children have multiple situations going on, findings and examination can be masked by other things going on. It takes the patience of Job to stay in there looking for answers.
The reality is that not all providers have had adequate preparation to work with a complex child. As Kate Crow, Genetic Counselor, stated in the Foreword to Parenting Your Complex Child (AMACOM Books, April 2006), there are not as many studies done on complex children. This complicates their care for the provider and the parent(s). Thus, the finest medical education may not cover a child just like yours.

Attitude, listening skills and a desire to check every detail for the unusual are probably the most important traits you can look for in your medical provider. I am so thankful we have found that.

Another role of the "primary" that is so important is in effect case manager. The primary must pull together appropriate specialists and maintain communication with them. Many times you don't know the specialists so your trust must be in your primary to interpret data and find an appropriate specialist. Brice is especially good at admitting when he needs another opinion and staying on top of communication with other professionals. I think that is an important part of the job but not always present in all doctors.

This past weekend I realized that if Billy Ray survives all the ever changing medical issues it will be because of the thoroughness of his "Dr. Brice". I take great comfort in knowing that if we lose the battle down the road, we will have done everything that could be done for Billy Ray because of the team headed by Brice Stanley.

Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Quiet is Scary

2006-06-23T08:51:00.001-07:00

As I said before knowing when to worry and when not to is the hardest part for me.

Billy Ray has been struggling with a sinus infection on top of everything else for a few weeks. He started the second course of antibiotics on Tuesday. He has been whiney and having lots of pain but he still was eager to be somewhat busy, albeit less than normal.

While he went to his Thursday vocational activities yesterday, I posted yesterday with pictures from the day before about how he was playing even sick the day before. The post was no more than published to Blogger than Billy Ray and his support staff returned home. He had refused to go to his favorite restaurant following his activity and had been irritable. He remained irritable and complained of pain until 11:30 p.m.

At 5:30 a.m. he woke up very wheezing and congested and quiet. When he is quiet, in the morning, something is up and that is always scary to me because it is hard to read. We don’t get quiet often first thing in the morning.

I talked to his primary medical provider who is going to try to get Billy Ray into an Ear, Nose and Throat specialist today.

Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Yahoo Group
www.parentingyourcomplexchild.com
http://www.lighthouseparents.com/

Billy Ray is STILL Amazing

2006-06-22T09:29:00.003-07:00

As I have said before Billy Ray is amazing!! He can’t feel wonderful with a sinus infection, pancreatitis and constant struggles with acid reflex. He won’t let it keep him down. He can go from sitting in his recliner taking his nebulizer treatment for his breathing, whining and groaning to wanting to go out.

My husband, Larry and I are both sick with summer colds. I am working on a major unrelated project but moaning and groaning about how rotten I feel. Billy Ray who is more seriously ill than we are, went to the playground. Here are some pictures of Billy Ray and his caregiver playing yesterday. They were taken by our consultant friend, Keddie Wanless.

This wonderful playground is courtesy of the First Conservative Baptist Church in here LaPine kindly allows Billy Ray to use it even though it is not our church.

Until next time,
Peggy Lou Morgan
Amazon Blog
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Parenting Your Complex Child Yahoo Group

Billy Ray is STILL Amazing

2006-06-22T09:29:00.002-07:00

As I have said before Billy Ray is amazing!! He can’t feel wonderful with a sinus infection, pancreatitis and constant struggles with acid reflex. He won’t let it keep him down. He can go from sitting in his recliner taking his nebulizer treatment for his congestion, whining and groaning to wanting to go out.

My husband, Larry and I are both sick with summer colds. I was working on a major unrelated project but moaning and groaning about how rotten I feel yesterday. Billy Ray who is more seriously ill than we are, went to the playground. Here are some pictures of Billy Ray and his support staff playing yesterday. They were taken by our consultant friend, Keddie Wanless.

This wonderful playground is courtesy of the First Conservative Baptist Church in here LaPine kindly allows Billy Ray to use it even though it is not our church.

Until next time,
Peggy Lou Morgan
Amazon Blog
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Parenting Your Complex Child Yahoo Group

Reasonable Chores..Training for Transition

2006-06-20T07:42:00.001-07:00

I learned years ago (when I did not have in-home help) that if I don’t involve Billy Ray in housework it isn’t going to get done. Consequently he loves to do it and prefers to it to many activities that other kids might do. He especially likes mopping as you can see by the picture. He used to spill water intentionally so he could mop.

As I wrote in Keep Him Busy or Else we have learned that if we do not have constructive things for Billy Ray to do he will fill the time though not necessarily with acceptable things.

Support staff seem to react to his love of housework in various ways. Some think it is their job to do it if it is scheduled and go crazy cleaning our house while trying to get him to watch a movie or follow them around while they do the task. One former staff refused to do it because he said that we were only having Billy Ray do yard work or housework so that staff did it. Both miss our point. It’s Billy Ray’s home too and he should contribute to its’ maintenance to the degree he can.

I have gone round and round with former staff about not doing it for him. Additionally, it is not “Billy Ray help me make your bed”. It is his bed he should make it and he can. The cue should be “It’s time to make your bed. I’ll help you if you need it.” The bedspread may not be straight and smooth every time but he needs the satisfaction of making his own bed.

It is my dream that Billy Ray will have his own home someday. I know that he will always have to have staff but I want him to be able to do as much as possible to make it feel like his own home. I want him to have support from staff only the degree he needs it. Thus, tasks should be appropriate to what he is able to do with assistance. I have made a list of what he can do with assistance and what he would need to do if he had his own home.

In choosing tasks we take a look at the following:

Is it something that he needs to do as an adult in his own home?
Is it something that he is able to understand and participate?

For tasks while he lives with us we ask:
Does it benefit his personal needs?

For example, we wouldn’t have him clean the master bathroom but the main bathroom is the bathroom he uses so it would be appropriate for him to assist in cleaning that bathroom. He contributes to the messes made in the kitchen, living room, etc. and the garbage accumulated so assisting with that would be appropriate.
His bedroom is just that his bedroom so he should maintain to the degree he is able to do with assistance.

We could go on and on with examples. I think you get the idea.

When I don’t have help with him such as on the weekends, I do have him participate with me in activities that are not as specific to him because I can’t supervise him on a one to one basis and get needed things done at the same time otherwise. For example, I help him with his laundry and he helps me with general family laundry.

Until next time,
Peggy Lou Morgan
Amazon Blog
Yahoo Group

www.parentingyourcomplexchild.com

www.lighthouseparents.com

Father's Day 2006

2006-06-18T11:24:00.001-07:00

Billy Ray and his stepfather generally celebrate Father's Day on Saturday because if we go out in the big crowds it can be a little overwhelming for Billy Ray. Yesterday we went to the Mexican restaurant in our little town for lunch. After we ate Billy Ray proudly took cash to pay the bill and wanted everyone to know he had taken his "Dadgert" out for lunch.

Then we went to Dairy Queen to get an ice cream cake that both love but we haven't been able to allow Billy Ray to have it for at least year because of the various diets he has had to be on for medical issues. The clerk asked Billy Ray if he was going to go eat cake and he told her "for Dadgert".

I regretted not taking the camera so I could share it with you. Here is a picture of Larry and Billy Ray that I took earlier in the day yesterday to make a new symbol for emptying the garbage.

Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Yahoo Group
www.parentingyourcomplexchild.com
http://www.lighthouseparents.com/

Billy Ray and the EMT/Fire Department

2006-06-14T08:01:00.001-07:00

Reading a post by Griffin's Mom yesterday, I remembered that I may not have shared our planning for dealing with emergency personnel.

There have been numerous media reports of children and adults who died during conflict with police and fire personnel. The fear of the unknown by a child with special needs as well as the fear of being held down can stir multiple problems and increased aggression. I was very alarmed by that when Billy Ray's behavior was worsening (primarily because of medical issues that hadn't been discovered yet) and his repeated choking. The likelihood of having to call emergency at some point is high.

Our wonderful "Dr. Brice" (Brice Stanley, PA-C, Billy Ray's primary medical provider) had some very good suggestions. He said that if the EMT's were familiar with Billy Ray they were less likely to need to use force.

I contacted the supervisor of the EMT staff through our local fire department. We planned that Billy Ray will visit the fire house at regular intervals and various times of day so that he gets a chance to meet most personnel. As luck would have it, the fire house in our little town recently held an open house. Billy Ray and I attended together with his support staff.

We were able to introduce Billy Ray to the fire chief and he introduced us to three EMTs just coming back from a call. Billy Ray was able to wonder around with his support staff looking at the fire trucks and life flight plane while I discussed my concerns with the EMT's. We were also able to give them my business card which has links to this blog and my websites so as time permits they can read about Billy Ray. I felt very good about the interaction and plan to establish some relationship for Billy Ray with them.

There are numerous advertisements on the net about signs that say an Autistic person is in the house or the car. I asked if this would be important to do for our house. I was told that personnel don't pay a lot of attention to those signs because people move or situations change but signs are not removed.

I also had some concern about emergency medications because given without knowledge of Billy Ray's regular medications. We had experienced this problem in the emergency room on one occasion and in a lab where they just gave Billy Ray meds before a procedure without even checking about other meds we might have given him. It was suggested in our meeting that the most helpful thing we could do is have an accurate list of Billy Ray's meds easily available to emergency personnel.

We update his medication schedule regularly so it is available. We plan to print out a copy everytime there is a change and to include a copy of Abbreviated History (as described in Parenting Your Complex Child) in a file that is in the table just inside the door. It will be readily available to EMT's and to take to the emergency room.

Planning reduces risks as well as reducing the worry about emergencies.

Until next time,
Peggy Lou Morgan
Amazon Blog
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Parenting Your Complex Child Yahoo Group

Just for Fun...6/12/06

2006-06-12T12:54:00.001-07:00

We just got back from seeing Dr. Masterangelo. Billy Ray is getting better. No issues to report. He hasn't been sleeping as well and my mind is wearing down so I don't have a much to share on this blog today. However, I can resist sharing the pictures I took this morning.

He came into my office this morning after his bath. He had his uniform (like "Bubba Mike") and both the radio hat and walkman on. He doesn't have the radio on in the hat but he loves the antenna on.

My mother-in-law is so creative as knowing what Billy Ray likes and finding things in catologs, etc. Several years ago she found these radio hats and Billy Ray loves them. He doesn't always wear them with the walkman but when he does it is cute.

As I snapped the picture on the left he put his head down. I am putting it up anyway because you can see the hat better.

He is still having some pain. Dr. Masterangelo said the pancreatitis maybe chronic - he may have days with no pain other days where he needs to take pain medication and some days he will be hospitalized with it. However, the charming little boy that left us at 14 years old when he had a series of seizures, is re-emerging pretty often in the past couple of weeks.

I suppose that what is cute to me may not be cute to all but I must share. After we got back from speaking at The Arc of Oregon conference at the end of April we were sitting at the dinner table with him. He was especially noisy and I asked him to be quieter because I had a headache. He looked over at me and grinned. He said "I pay you back". I asked him if he was paying me back for being away and he grinned. That little imp!!

Yesterday he and I were making a casserole and then he and his stepfather took the kitchen garbage out. While they were gone a heavy thunder hit. When they returned I asked Larry how Billy Ray had handled it. Billy Ray piped up with "farted" and laughed. He wasn't upset about the thunder at all.

Until next time,
Peggy Lou Morgan
Amazon Blog
http://www.parentingyourcomplexchild.com/
www.lighthouseparents.com
Yahoo Group

Newsletters

2006-06-10T20:46:00.001-07:00

We have always planned to do a regular newsletter but haven't gotten many out. Beginning with a July issue we will send out one via email. We will probably do them at least quarterly.

It is planned that the next letters will include my schedule when I am traveling, new materials added to the websites or links to special blog posts, articles, etc. that I think you might find interesting. From time to time there will be some articles as well.

If you have already noted in the guestbook for either of my websites that you want to receive a newsletter you are on our mailing list. If you haven't signed the guestbook on the sites you can just email me to be added to the list.

Hope everyone is having a great weekend. Billy Ray is doing fairly well today. He has played with his service dog more than he has in a long time. As I write this he is asleep and she is on the floor beside his bed. They are both tired out.

Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group

Reflections of a Different Kind..6/9/06

2006-06-09T07:45:00.001-07:00

The email from some of you worrying if I don't post everyday is humbling. Yesterday, Blogger was having some issues and everytime I tried to do a post it said they were having having technical difficulties.

Billy Ray is doing fairly well. He is getting over the sinus infection gradually. Still having some pain in his stomach but it is more manageable. He is continuing to be interested in doing more things and we are revising his schedule to accommodate him.

As a general rule, I try to stay focused on topics relative to special needs children specifically. I am aware that readers with differing opinions and from many different areas of the world visit expecting posts about parenting a special needs child.

However, if I would have been able to get on Blogger to post yesterday I would have written about my stepson, "Bubba Mike" (Billy Ray's name for him). I was missing Mike so much yesterday with the news of the capture of the terrorist in Iraq.

Yesterday CNN showed more of the beheading of Nicholas Berg (believed to be done by Al-Zarqawi peronsally) than I have seen before and I wasn't prepared for the horror of it. I felt a real surge of appreciation for Michael and all the troops internationally for helping to keep our children and all of us safe from terror.

Michael is in the reserves and called to active duty for a special project. He is not in Iraq but that doesn't mean he is in no danger. He has already done one tour in Iraq. Not only is he sacrificing by being away but his wife Rebecca contributes by keeping their home together for Elora, Alena, Hans and Oren.

I wanted to say thanks to Michael and all his colleagues as well as to the families.

Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Parenting Your Complex Child Yahoo Group

So Much Fun

2006-06-07T08:52:00.001-07:00

It is fun for me to see Billy Ray emerging as his old self. In addition, hearing Ron, his support staff (pictured here giving Billy Ray high five following a strike bowling) marvel at the difference in Billy Ray is great. He keeps saying I guess all we needed to do was get rid of the pain. Probably more involved than that because we have changed meds too but he is right Billy Ray's old charm is returning with rapid speed and without nearly as much agitation.

I looked through a lot of the childhood pictures to try to find one that would capture this charm (that I haven't already posted here). Probably my favorite one that shows his little impish type personality is already posted here. But here is one taken when he was four years old that shows the charm I am trying to describe too.

We need to call his barber today and get his haircut. He has been so sick that he has gotten shaggy. I will try to take some current pictures after that.

This newly re-emerging Billy Ray is keeping us busy reinventing schedules to keep him challenged at just the right level. His timing is not wonderful because I am also involved in publicity for Parenting Your Complex Child and writing some articles for Club Mom. Nevertheless, we have to capitalize on his need for new challenges while we can.

My consultant friend, Keddie Wanless, is helping me by contacting some of the community resource possibilities for adding activities and assisting with the schedules.

It is worth every effort to see our Billy Ray enjoying his life more.

Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Groups List