Preparing Myself for Billy Ray's Transition to Adult Living

Health issues including a medication reaction that changed him permanently at 14 and his health crisis this summer have delayed the transition plan for Billy Ray. We continue to work with him on skills he needs for his transition from our home and to stabilize his health.

With a complex special needs child, even when they become adults, the empty nest is not quite the same as it might be for parents of whose offspring can fly away to total independence. Parents will usually be involved in some form for support their complex special needs child even when they are no longer in their home.

If our plan goes according to our hopes, we will still need to arrange for and train inhome support staff , assure his medical and psychiatric care is continued, etc., etc., etc.

This weekend I was remembering the nine months Billy Ray spent in a residential treatment program to re-establish his medication regime and how I reacted to his absence. I did not know what to do with myself. Whether it was depression or just trying to catch up from years of sleep deprivation and stress, all I wanted to do was sleep for several weeks.

I was thinking about it this weekend. While I have no immediate plan to transition Billy Ray, I know that it is coming. It is time to preparing me while we are preparing Billy Ray. Preparation while he is still at home is not something I can actively work at but my thinking needs to be in that direction to avoid the sudden shock that occurred during his temporary placement.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Would Love to Meet You

My publisher has asked me to gather a list of email addresses so that when I am going to be in your area for a book signing I can let you know. I would love to meet some of my blogger friends. If you want to be notified if I'm in your area please email me.

The aside photo was taken by Laura at Linden Photography My editor, at AMACOM and I picked this picture of the proofs (none of which had me smiling very well) but Laura suggested a different one that she had modified. I sent both to the publisher. It will be interesting to see which one they put on the jacket for my book.

Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com

Helping Our Complex Children to Experience "Normal" Life

Yesterday I was talking with Ron, my son’s support staff, about Billy Ray’s responses to his schedule. I was recalling something that Dan Hobbs says at the beginning of his video Gentle Teaching . Dan says that the first thing he always asks himself is could he live the life his client is expected to live. If he can’t then there needs to be some adjustment.

I think of that often in planning for Billy Ray. There are parts of his schedule that I could easily live with such as the full body massage he gets daily with Baby Oil Gel shown in the picture. See Skin Care on my website for details about why gets this royal treatment. This is something that we must do for him.

It is a question that we are parents need to think about in our expectations of our children. Of course, there are things that must be done for their health and safety. For example, now that he is diabetic we can’t allow him to have everything that he wants. If we would allow it he would have 6 milkshakes in a day. We limit it to two made with skim milk, no sugar ice cream and sugar free strawberry jelly since we can’t find sugar free syrup like the regular syrup we used to use.

To the degree possible we have to allow them to have choices. Some Autistic or complex special needs children can make choices from two or three things. Some cannot. Billy Ray can sometimes and sometimes not. We do free choice visuals or use his picture symbols which aid in his choices but sometimes he is not able to do it that way either.

At the same time there are things about life that we all have to experience. It seems important to allow our kids to experience many of the things that are just part of life as possible. For example, when we eat we have to wash dishes. The floors have to be vacuumed and our bed made. Some special needs kids may not be able to do all of the normal things of life but I think we have to involve them in whatever they are able to do. It is definitely easier to just do dishes than involve Billy Ray in the task but it doesn't allow him to experience normal life if I do. It is just part of life and it helps them to feel better about themselves. In the picture he is unloading the dishwasher with consultant and friend, Keddie Wanless who was assisting with staff training.

Some may not agree but I think we have to allow our children to live with the consequences of their choices when possible. Billy Ray sometimes detours from his plan for the day by wanting something else just as it is time to go out for his community activity. Yesterday he wanted Ron to make him a hamburger. We had to tell him if he made that choice he would not be able to do lunch at a certain restaurant he does every Thursday. Of course, he wanted both.

I was thinking about the difference in the consequences we as parents experience and those we allow our complex children to experience. Yesterday I dropped a coffee cup and broke it. I had to clean it up and feel the disappointment of losing a favorite cup. Billy Ray recently threw his milk and started a chain of events that ended up with lots of broken glass and food all over the floor. We are cautious not to make a big deal of it for Billy Ray because he feels so guilty about his behavior that he can actually escalate more from the guilt. We don’t need to guilt trip him about behaviors that come out of impulse control issues, confusion or frustration. At the same time just as the rest of us experience in our lives there are consequences. We drop something, it breaks, we clean it up. It doesn’t need to be punishment just normal consequences of things that happen or our choices. To the degree possible, we can allow our children to experience natural consequences of life that we all face without harming them. They can grow from the consequences of life just as we parents do.

I agree with Dan that we should consider the lives we expect our children to live in terms. Some disabled children are kept in front of the television all day or expected to work in production lines which would be intolerable for some of us. We need to consider that constantly. At the same time, we need to allow our children to experience life even when it can be the pits for us all.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

An Example of Adapting for a Special Needs Child

I have been looking through our picture files which is voluminous because I use it to make visuals. There are pictures of Billy Ray doing all his tasks, etc. I found this one that is an example of adapting to what works for your child.

Billy Ray loves western wear. Since we bought him his first “cowboy belt” with the skinny do-dads he is unwilling to wear anything else.

When he gained a lot of weight due to the medication the belt no longer did its job at holding his pants up well. There were some embarrassing moments. We attempted to transition him to suspenders but he wasn’t having it.

A part of adapting is to assess what will motivate your child to do the desired activity. In the case of the western belts what Billy Ray loves about them is the “shiney” things on them. I called every western wear store I could find to try to find suspenders that might have the same ornaments as the western belts. Nothing could be found.

Our local western store did carry trinkets that are generally put on saddles or vests. At last, we purchased a pair of plain suspenders and some of the trinkets. His first pair of suspenders with “shineys” is pictured here. Eventually we found the little ornaments in letters and were able to make him a pair of suspenders with his name on them which he loved.

It was not a slam dunk to get him to transition even with the ornaments. He had to wear both belt and suspenders for a while.

Another thing that helped was my husband noticed that in wedding pictures his son, Michael, was wearing suspenders. Billy Ray adores “Bubba Mike” so anything Mike does is okay for him to do. I made a visual with this picture of Billy Ray in his shiney suspenders and Mike in his suspenders. I wrote couple of lines about belts not always working so sometimes men need suspenders. I made a heading that Billy Ray and his Bubba wear suspender. Walla!! It worked wonderfully.

Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com

Dealing with "What If" and "If Only I Had"

I have been thinking a lot about a post called A little scared by Suzanne on the Diverting Daniel blog. Daniel reminds me a bit of Billy Ray in the picture to the right at 4 years old so full of promise and developing so well.

There are so many unknowns about the future for our complex special needs children. Suzanne was worrying about a lot of the what ifs. For example, what if Daniel is stronger than his Mom as he grows up. Those what if concerns are realistic and I do not wish to make light of them.

It is easy to let ourselves get pressured by the sense that we have to do everything right for our child. Suzanne was saying that she felt even more pressure to find the right programs for Daniel. I was thinking about that during my “soaking thoughts” (hot bath brings out all kinds of thoughts – some are actually good ideas). I remember feeling that kind of pressure to do everything right for Billy Ray when he was little.

I have shared bits and pieces of this story in other posts and in more detail in Parenting Your Complex Child but repeat it here to make the point of today’s blog. Billy Ray came to us at 15 months old diagnosed with Down Syndrome, chronic ear infections and malnutrition. He seemed to bloom in health and developmentally.

One of the things we had to consider was whether to have insurance policies to fund an insurance trust for him in the event we were no longer able to take care of him or to spend the money we would be spending on premiums for things like speech therapy not covered by our insurance company. We strapped ourselves to do bi-weekly speech therapy which was expensive at that point. We did that because at 2-1/2 he seemed to be gaining skills so fast. It seemed likely he could achieve at least a semi independent living program in adulthood.

At 14 years old, Billy Ray, experienced seizures believed to be a medication reaction. What was probably already the dual diagnosis of Down Syndrome and mild Autism became much more serious Autism within a couple of months of those seizures. His speech and behavior changed entirely.

This should not be construed to mean don’t plan ahead and do your best to get your child into programs which seem appropriate based on your current knowledge.

I think it gets back to our discussion the other day of the Serenity Prayer. As you go along with raising your child “change the things you can”. Do what is reasonable now to provide opportunities for him. Don’t push yourself too much to give him every opportunity because what seems important today might change as time goes on. A lot of times the “what ifs” will never show up.

You can do plenty without stressing. For example, you can start transitional planning for adulthood pretty young. In Parenting Your Complex Child there are forms to set goals for transition and to ascertain the skills needed for those goals while your child is still in school so those skills can become IEP goals or you can work on them at home. There will always need to be backup planning and changes made with time. However, it gives you the sense of being prepared.

Besides the “what if” fear there may be the “if only I had not that” regret to deal with. I experienced guilt beyond description for agreeing to use the medication believed to have caused Billy Ray’s seizures. His life has been changed dramatically. I had been hesitant about that drug though nothing supported that fear in the literature. I hesitated for a couple of years then went with recommendations and research that implied my “gut” was crazy this time. It was not!!

To be stuck in guilt over poor choices would negatively impact Billy Ray’s future. It was a struggle to accept the things I could not change but necessary in order to move forward and change what I can to make things work for Billy Ray.

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

Trusting Your Gut and Doctor-Parent Relationships

The picture on the right doesn't have anything to do with today's post. It is response to urging from several of your to add more pictures of Billy Ray's day to day activities. This is of him feeding Penny Lane in the mornings. He is messy but she cleans it up.

In today’s post, I want to expand on two previously covered topics because of email and phone calls from parents who are concerned about these issues.

Reading the signs our complex children give is always a challenge. Your instinct and skill at reading those signs is very important. When your “gut” that there is a problem is confirmed, a strange mixture of satisfaction at being right and sadness if it is means your child is ill. The most important thing to remember is to trust your gut even though sometimes it won’t be 100%.

On Saturday morning, Billy Ray had a major choking episode at breakfast. Throughout the day, his appetite increased drastically and as I feared so did his blood sugar. He was sleeping a lot as if he was getting sick but there were no apparent symptoms. Sunday his blood sugar was getting worse and he was not eating as much because all he wanted to do is sleep. Finally, called his medical provider, Brice Stanley, PA-C, on New Years night. I worried he might have aspiration pneumonia from the choking. It was one of those times that I did not know what was wrong but I knew that I knew something was wrong.

“Dr. Brice” (Billy Ray needs to call him doctor to understand his role even though he is a Physician Assistant) saw him this morning before clinic hours because he had a crazy schedule after the holiday. Billy Ray has an ear infection with bulge in his ear.

The relationship between your child’s medical provider and you as parents is very important. I have come to believe that listening skills and attitude are at least as important as education. The only medical provider I have ever fired was because he would neither allow me to verbally explain what was happening with my son nor read the documentation I prepared. He just kept prescribing more and more medications without enough information to make informed recommendations and without explaining side effects to us. That specialist had multiple degrees and certificates around his office.

When you have a provider who will listen to the differences your child experiences with various issues, you can accomplish so much better care and understanding. For example, the first question you are often asked when looking for infection of some type is does your child have a fever. Billy Ray has only experienced fevers following surgeries for internal bleeding and a leaking appendice. He has had infections doctors referred to as “raging” without any temperature. Some things the doctors just have to trust the parents about. Thus, the relationship must be strong.

I feel very fortunate that we have Brice Stanley. I am sure that he has never seen another child like Billy Ray but he is sharp in his medical skills and he listens well so he can use those skills to adapt to Billy Ray’s special needs. When I explain that certain behaviors are "signs" of certain things historically, he believes me and checks it out medically. He was there for us the night Billy Ray was taken back to surgery until he was out of surgery and somewhat stable (3 a.m. if I remember right).

Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/

New Years Resolutions of a Complex Mom

At this time of year reflection on the past and resolutions for the future tend to occupy our thoughts and conversations. Resolutions are hard to keep for everyone. In families with complex special needs it is more difficult.

All families deal with unexpected events both positive and negative. Both can be stressful. I have compared our life as complex parents to the journey the old ships made before the modern navigational tools and lighting systems were available. There are so many unseen hazards in our journey, partly because our children have difficulty communicating what they experience physically, developmentally and emotionally.

Here’s a glimpse into my personality: when Billy Ray has a doctor’s appointment and there is a risk of something serious, I catch up laundry and get things either in a bag or organized so my husband knows what to bring if he is admitted to the hospital. I hide them from Billy Ray so as not to worry him but I desperately need to be prepared. I think this started from years with a terminally ill husband as well as Billy Ray and being caught off guard numerous times. I am the most secure when I know what to expect. The unknown is the scariest part to me.

As I was writing this post, my friend, Keddie, called. Last week her car went out a few blocks from our house. She just got it back Thursday. Friday it went out on her again.
She borrowed car and it went out on her over the weekend. She was talking to me about the Serenity Prayer. I don’t know why I wasn’t thinking of it in this post because I wrote about it in Parenting Your Complex Child.

We could probably all quote the Serenity Prayer with all its various translations:

God grant me the serenity to accept the things I cannot change,
The courage to change things I can,
And the wisdom to know the difference.

It sounds so simple. There is so many things that we can do for our complex children. We can make visuals, find the right school program, plan schedules, see to medical care, proper diets, etc., etc. There are some things that we must accept and that is where it gets more difficult. It takes wisdom plus to know the difference. It is something I still struggle with from time to time.

This year I resolve to TRY to:

• Do the things that make me stronger (such as my personal devotions, haircuts, doing my nails and shining our dinging room table) because if I am stronger I have more to give to Billy Ray.


• Do everything that I can to give Billy Ray a life that is comfortable for him.


• Accept that there are some things I can’t change for him no matter how much I love him.


• Share what I have learned in our journey with parents in the same struggle and learn from them in the process.


• Recognize that I can’t do everything I want to do.


• Try not to get too puffed up because Walmart is carrying my book (smile).

Until tomorrow,
Peggy Lou Morgan
http://www.lighthouseparents.com/
http://www.parentingyourcomplexchild.com/