Saturday, April 16, 2011

Autism Awareness prt 2/ Ryan

Ryan David Kenneth Mathis was born on October 3, 2000. The most beautiful baby boy. He was my 3rd grandchild, 2nd grandson and my son's first baby. We were on cloud nine. He seemed to be perfect, but Wendy had a feeling something was wrong. He talked sort of early, but even as an infant, he didn't really like to be cuddled and held. He wanted down. And as soon as he could walk, my goodness, we almost wished it was legal to tie him up. Just joking. But he was so busy. And still Wendy, his mom, thought there was something that wasn't right. Oh we told her he was just an independent baby. He stopped talking about the age of 1, but he was on the go. He could climb, he could instant message on the computer. He didn't know how to spell the words, but he definitely had the concept down. But before the time he was 3 we knew there was something different about Ryan. She had him evaluated by a program here in Oklahoma called Sooner Start. And they agreed. Although he didn't have a dx, they gave him a learning disability and when he was 3 years old, he started school.

Wendy did all the research she could on the Internet. She talked to his doctors and teachers, but they still acted like he would grow out of what ever was going on. Now he had a baby brother before he was two. His name is Noah. Noah was talking to us using words like Mama,Daddy, cup,bottle and ball. And then when he was about 6 months, he stopped. They had some things in common, but they were as different as day and night. Noah had to bounce and swing. He would climb and run. Ryan needed things quite. He had to be still. Noises had to be low. He cried and cried when we made him play out in my back yard, because when the train would go by blowing the horn, he acted terrified. I was seeing a counselor about this time dealing with depression. Of course I talked about my grandchildren non stop. One day he suggested that I read the book."The Out of Sync Child" by Carol Stock Kranowitz. The lights came on. We were dealing with Sensory Integration. The book described Ryan and Noah to the T. 

Wendy finally had a starting point. Reading this book, she had something tangible that she could use to describe her boys. She was given a referral to the Oklahoma Child Study Center by the boys physician. Both of the boys were evaluated and they got their diagnosis. Autism...Both boys on the spectrum.We have since learned that the spectrum is huge. There are so many symptoms and no two people have all the same ones. I describe it as the Autism Store where all the symptoms are on a shelf, and you go in and choose as many as you want.

I am talking about Ryan today. Awesome boy. Of course I am the grandma, what else will I say?  He looks at life so literally. To him the world is Black and White. He does not see the gray side. He will say exactly what he sees. If you are fat, he will tell you. He isn't trying to hurt your feelings, he has trouble figuring out why exactly that would hurt your feelings. To him there is only one definition of most words. Hot means just the opposite of Cold. Sometimes this can be so funny. But of course it isn't. If you have ever seen "The Temple Grandin Story"  you will understand how he sees things. Now I can imagine how he sees life. When he was first evaluated they told us that he was short a couple of symptoms that would give him a diagnosis of Asperger's Syndrome. If he doesn't have Asperger's, then he certainly has most of the symptoms. 

He is so precious and easy to love. And even though he has trouble recognizing facial expressions and body language, he has no trouble expressing his love for his family. His heart is huge. Appropriate responses to some situations is one of the aspects of his life he has trouble with. Again Temple Grandin was able to tell the story so well. Using visual cues, her family taught her how to better read people's expressions. Her professor at school never gave up on her and encouraged her to get an education. He believed she could and she took that encouragement and made herself. I know that Ryan will be able to do the same. 

He is in the fourth grade this year. It has not been the easiest for him. While he is at his grade level and excels in most areas, he has trouble staying on task. He has an aide that helps him with this. Mainstreamed in some of his classes with peers that are "normal" he still has classes in the resource room.  I am so proud of him and cannot wait to see what he accomplishes. 

In third grade last year, he entered a contest that was state wide. It could be a poem, story or art project. He wrote an essay about the ocean. This was his favorite place to be. Describing everything from the sun and wind in his face to tasting the salt in the air. Sounds impressive...Right? Especially since he has never seen the ocean. His was selected by the PTA at his school first as the winner of the 3rd grade and then he was chosen to represent his entire school at the next level of the contest. I think he just may be a writer, and doesn't even know it yet. In 2nd grade, he wrote for me, three comic books complete with illustrations. 3 stories of Captain Underpants.

When he was only 3 years old, he had 2 brothers. Noah was born when he was 16 months old, and Ashton was born when he was 2 years and 10 months old. Wendy had her hands full.  Lloyd worked all the time as the GM of a Taco Bell. And one evening while he was at work, Wendy was bringing laundry from the garage into the kitchen. She fell and was sitting on the floor almost in tears of frustration and asked Ryan to help her.  Ryan got the telephone and called 911 and brought it to her. He said "Mom, I got you some help". 

He has been helping her ever since. Now there are 5 of them. He has a brother named Brody that is normal. He shows no signs of Autism. A baby sister, Lilly, was born in August 2009. She also shows no signs of Autism. Ryan takes on the responsibility of Big Brother and is a big help to Mom and Dad. 

He loves birds and snakes. Bird watching in my back yard is one of his favorite things to do. He doesn't have much interest in fiction books. In fact he and Billy Michael had a disagreement the other day about the Hump Back Whale. He insisted that the Hump Back Whale has 2 blow holes. Billy Michael was not having it. Wendy told Ryan to just let it go. He whispered to her, "It is because he doesn't read non fiction books".

He loves to watch wrestling with his Dad and has already chosen a name for when he joins the circuit. He puts his clothes on backwards and wrong side out. I tell him that it is okay. His grandma, Me, use to do the same thing. Hence my nickname, Doodle Bug. He thinks that is funny. 

He is a typical 10 year old with the same hopes and dreams as other kids his age. Life to him may look a little different, but he is not oblivious to that. He realizes he has Autism. He is trying to figure out exactly which parts of his life are colored by it and which parts are not. God couldn't have chosen a more perfect mom and dad for him. He and Billy Michael have many conversations about their Autism. Between the two of them, they have come up with solutions and conclusions all on their own. Right now, this is enough.

Once again I speak of Awareness. While we can talk night and day now about Autism, it took us a long time to get here. There is so much out there, but people have got to know that when they hear the word Autism, it is not Rain Man. While Rain Man certainly had Autism, he was also a Savant. This is not typical. 
These children do tend to find one subject that interest them and they will teach you everything you wanted to know and everything you didn't about the subject. It just isn't common for them to be a savant.

We need to educate people about early intervention. While the State of Oklahoma has a very good program in Sooner Start, the earliest that children can be placed into school programs is 3 years of age. It is important that we get to them sooner. The ideal time for intervention is 18 to 36 months. Having said that, they will come into your home and work with your children.

I will leave on this note. Be aware of the children in your life. Know the symptoms. If there is a child you are concerned with, talk with the parents. Encourage them to call and set up an evaluation. There is no harm in having a child evaluated. Early intervention is so important.

It has been a year since I wrote this. After reading it, I had to do a little editing that I missed the first time. I thought I would add this just in case someone new read it. If you are a mother, and you feel there is something just not right with your child, don't hesitate to ask your doctor about it. And if they will not listen, do not give up. You are the parent, and no one else knows your child like you do. People are still in denial and ignorant of the facts of autism. So if you know that there is something just not right about your son or daughter, stand up for them and don't stop until you get the answers you are looking for. If you are right, listen to me now....You will have to advocate for your child. You will have to be their voice.

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