Sunday, January 3, 2010

My son is not a shell, he's really "in there"

Anyone who spends time with Stephen every day knows he is intelligent and has skills. Unfortunately, most people don't interact with him daily and take one look at him, his stimming, odd gesturing, body movements, repeating of phrases and whole scenes of movies and sound effects and decide because he isn't engaging them in chit chat or deep conversation and is acting odd that he is an empty shell. This is one of the cruelest aspects of Autism. Many people with Autism are completely non-verbal or have very little verbal skills. For all intents and purposes, Stephen is considered non-verbal. But he does speak. Most of it is echolalia, repeating the same things over and over, his favorites are lines and whole scenes from movies. Most of his communication is single words and a few two word phrases like, "Drink", "More pasta", "Help", "Book", etc. He does academic work at school and is tested in a statewide test like all the other kids in the state. He can read, probably on a higher level than he is able to prove through testing, knows what order the planets are in in the solar system and does basic math.He is able to learn things through imitation, generalize skills, learn new tasks, follow some directions, has independence in many tasks and understands much of what is said to him and shows through his behavior and actions that he is most definitely "in there" if anyone takes the time to notice.

Now I know he is not a genius. But I swear some people look at him and when he doesn't respond to them in the way that they think he should they literally think that the lights are on but there is nobody home.

Stephen with my sister, "Best Aunt in the world", when my family visited last week for a belated Christmas.

I remember when we really started to see he was "in there". He was able to follow some directions and started imitating. He was able to do more things independently. One set of experiences that really got us excited centered around one of his favorite books when he was about 8 or 9. He had this children's first picture dictionary, still has it with a missing cover because he looked through it so much, and one day he started pointing to all the pigs in the book on different pages so we would label them by saying what animal it was. Then all the rodents. Then all the veggies and then all the fruits. We thought, "Oh my God, he is categorizing things!" Then another time we tried pointing to the different animals and foods he had showed us and he said, "pig" when we pointed to a pig. And he said,"Jelly beans.", when we pointed to them. Since then there have been so many other things he has done to show us he's "in there" that I could be telling stories until the sun comes up.

Tonight I had another one of those wonderful moments.

Stephen and I were playing catch on his bed before bed time with these little stuffy Pooh character heads, Happy Meal toys, that had once been attached to key chains. I modified them because Stephen likes to toss things into the air and into other objects to see them bounce off and I figured he loves Pooh and these won't hurt him or anything else when he chucks them. So, we're tossing the heads back and forth and I stop and show him owl and ask him "Who is this?" and when he doesn't respond I say "This is owl." Now that he knows what I want from him I show him Gopher and ask the same question. At first I thought he said, "Cat." So I said,"No, this is Gopher." Then he said, "Catch." I had been saying catch before I tossed the heads to him every time. I think he was telling me to stop bothering him with the labeling and he just wanted to keep playing catch. So we toss the heads a couple times and I hold up Piglet and before I can ask him who it is he says, "Pig." And I said,"That's right, this is Piglet and he is a pig."

I moved to his glider rocker to make playing catch easier.

His lights were off and the fish aquarium light we bought him for Christmas was on so it was kind of dark in his room. I found Roo's head and asked Stephen who it was from about 6 feet away and got no response. I said, "It's Roo." And he said, "Kangaroo."

This experience I had with him and all the other times Stephen has been able to not just speak but communicate in various ways gives me hope that when we get him his ipod touch, that HE, not his biased doting mother that everyone thinks is exaggerating her severely Autistic son's abilities, will finally be able to prove to everyone that he is NOT a shell, but an intelligent, sweet, observant, really "in there" boy.


Sunday said...

I too get frustrated by the looks and questions of people who see my boys and assume entirely too much about who they are.
I am especially enraged by the autism groups that try to feed us the line about our children being locked away somewhere in their brain and if we spend enough money, do enough studies, or poke and prod enough with new medications and supplements we can find our 'real' children.
Your blog, mine and other parent's like us are trying to show society who are children are where they are right now. I like to think of it as autism acceptance. Even though some days that is much harder than it seems.
Kudos to you and your handsome boy! He reminds me a lot of my younger son, Noah.

Queenbuv3 said...

Sunday-I totally agree with you. Your boys are so lucky to have a mom that accepts and loves them : )

Casdok said...

Well said! Just love those wonderful moments :)

kristi said...

He is beautiful!

StatMama said...

How did I manage to miss this post? It is a GREAT post!

Queenbuv3 said...