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.