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
Sunday, October 22, 2006
Tuesday, October 17, 2006
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
“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
Tuesday, October 10, 2006
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
Tuesday, October 3, 2006
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
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
Subscribe to:
Posts (Atom)
