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

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

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

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

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

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

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

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