Single Moms

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

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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Parenting Your Complex Child
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Parenting A Complex Special Needs Child
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Tangle (formerly GodTube)
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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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