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.

Tuesday, April 12, 2011

April is Autism Awareness Month

You know I started out to write about my daughter in-law. And as I wrote more and more it got longer and longer and all the grandkids were there. I just kept going off topic even though it was still the topic. I decided that the best thing I can do is to write multiple post about Autism this month.

I decided the first post would be about AWARENESS. I mean this has crossed my mind several times when I posted something on Facebook or Twitter . I would think, how does Awareness help us. It isn't anything tangible like say money or research. The answer sort of crept up on me.

First of all, I work with some of the most loving and unselfish ladies at school. I am sort of a permanent substitute this year. Long story for later. But the classroom I have been in is labeled  Severely and Profound Multiple Disabilities. And while autism is a small part of some of their histories, it is there. We have a new teacher that has worked with Autistic children for sometime now while getting her degree. She is also an older new teacher. The other 3 ladies working in the classroom are so in tune while still learning. Of course my history is with my 4 autistic grandsons. Rebecca is versed pretty well also as she has a daughter with Aspergers Syndrome, which is part of the spectrum. We make quite a team.

We discuss our kids a lot. And we try to provide their needs. So of course, the subject comes up of how people perceive our kids. People in general are ignorant. For me it was ignorance and I have to say I didn't understand either. Wendy would say there was something different about our Ryan. And of course we all made excuses. I know now a motherl knows her child and for goodness sakes, people should listen. Even before Ryan, there was something going on with Billy Michael. But I digress. I want to address each child this month and introduce you to their world. This is about Awareness. After last week and then spending time with Wendy and talking with her this weekend I understand why awareness is so important.

The fact is people are ignorant of the challenges that these children suffer. Not only the children, but every person in the family is affected. Even I do not know how to answer someone when they ask me "What is Autism?" I can list symptoms and tell them it is a neurological problem. Before, I would tell you..."Oh, have you ever seen Rain Man? Well that is Autism." Well that is not a lie, but it is so much more. While our favorite character "Rain Man" had Autism, he had so much more.

My counselor gave me the first real clue about our boys. I was telling him about Noah and Ryan. I described their behavior and told him we just didn't know. He suggested that I read "The Out Of Sync Child" by Carol Stock Kranowitz. It started to click. I read the book and there on the pages were Ryan and Noah. Even after I started learning about Autism and reading the symptoms searching for answers for our boys, everything was categorized and nothing seemed to fit exactly.   Even though the "Sensory Integration" was definitely part of their DX, it wasn't everything. The Autism DX came and we still were clueless. Four Grandsons with Autism, and everyone of them are different. While some of the symptoms are mirrored, they all have their unique characteristics that make them who they are. I have now decided that each child is taken to the Autistic Warehouse and a list of symptoms are pulled off the shelf in no certain order. These make our children.  

Reasons why Awareness is so important. First of all the parents of these children need to know. Parents must be able to take their child to a doctor and say, "There is something different about my child that is just not right." And doctors should trust that a parent knows his or her child. Quicker intervention gives that child the  best chance they have at living the best life they can. While Autism cannot be cured, with early intervention, it can be the difference between having a child that can live in society with his family and peers and one that is at best non verbal and worst case, institutionalized.

With 1 in 110 children, 1 in 70 boys suffering under the spectrum, more and more people are being affected. Many people only have to look into their extended family to find someone on the spectrum. And chances are if you know one person, they have a sibling or cousin also on the spectrum. It is more common to have more than one child in the immediate family with Autism. Something else we didn't know.

Some of the facts that you may or may not know;
1. Although this is something a child is born with in most cases, it doesn't always manifest itself until the child is older. Sometimes children that seem to be developing perfectly normal with lose what they have learned. For instance. my Noah was starting to talk. We have him recorded laughing and talking. Saying words like Mamma and Daddy..6 months old and he started losing it. There is a man that I found on Twitter. Watch this "The United States Of Autism" Official Trailer.. My son has 5 children. The first 3 span the spectrum. He has 2 more, a boy and girl who seem very normal. But there is a fear that one day they will wake up in a world where they are lost. It happens. Many of our Children learn and become as close to normal as they can. But there is always a chance that one day they will wake up and lose everything they have gained. It is a scarey feeling.

2. Melt Downs. They happen. A Lot. You may wake up one day when all is right with the world and everyone is getting breakfast and getting ready for school and because the sun is too bright, the toothbrush is the wrong color, there is a tag inside a new shirt, or for no reason at all, your child starts screaming at the top of their lungs. They fall down on the floor and begin to bang their head on the floor until it bleeds and stepping in only gets you a headbutt that knocks out your front tooth. So now everyone is late for school, or work. And the only thing you are happy about is that it happened in the privacy of your own home. Not in front of peers that believe if you were a better parent that it would never happen.

 Awareness!!!! Parents, I urge you to be diligent when you believe your child's behavior or development doesn't seem right. Talk to your doctor. If they won't listen, find someone who will. This is so important.
 There are more, but these are just a few of the things a parent of an autistic child deals with everyday. Some of their fears and realities. I am going to write more about these this month. I will give you some of the symptoms and the names of websites. Pass them on, share them with your friends. Talk about it. You will be surprised how many people are affected.

Check out Autism Speaks. They are getting out the information for people. They are standing up for our kids and trying to get legislation passed and our Senators and Congressmen to be AWARE.


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