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

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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Marriage Planning for Adults with Disabilities

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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Technical Glitches

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

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

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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Building Relationships that Bring Joy and Protection for Your Child

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

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The Horror Continues

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

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A Horrible Reminder to Plan for Protection of Your Adult Child

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
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Billy Ray Meets Tonka (future service dog)

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

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

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

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

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

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

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

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

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

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

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)