As I have mentioned before, K is a dual-diagnosis Down Syndrome/Autism. Thanks to Twitter I have come into contact with so many parents. Some have children with DS, others with ASD, and even a couple of dual-diagnosis like K. I also speak with a wonderful young man with autism and his fiance! In reading their blogs and tweeting with them, I have laughed and cried, given and taken advice, and have found a bond of friendship I never thought I would. It also helps me to better understand which part of his Autism inner comes out from behind the Down Syndrome outer. You see, Down Syndrome is obvious, Autism is invisible.
The main thing I hear about from my “ASD Moms” are meltdowns. They vary from little cries at different times to full out pounding and stomping. With K the closest thing I can compare to a meltdown would be when he gets upset if he doesn’t get his way and thrashes out at me, hitting or pinching me. If he is in a crowded place or an unfamiliar place, he will make very angry noises, almost growls. If he gets on an elevator he will push and shove whoever is in the way to push the buttons. Most times it’s somebody not familiar with him or, worse yet, another child. We always have to wait for an empty elevator or ask people to step to the side when we bring the wheelchair in while one of us blocks the buttons. It doesn’t matter, he always tries. It’s always a fight. And the looks we get!
Another thing I hear about is repetition. Doing and wanting the same things all the time. Routines; doing the same things at the same time every day. K has his favourite toys and doesn’t bother with the rest. He would rather play with string or listen to his soft music toys then paint or draw. He gets up, he goes to school, he comes home and has snack, he plays and watches TV until dinner, he has his bath, he goes to bed. Day after day, week after week. Not much change at all.
There are certain ASD characteristics that come through a lot. K loves to spin around. He seems to be in his own little world most of the time. He is non-verbal. He doesn’t like certain sounds. He is still in diapers. He has to have his cup filled all the way to the top before he will drink it. He likes to sit in the dark by himself. He has to have cheese toast every morning or he won’t eat.
What I keep forgetting to remind myself, and everyone else, is K also has a severe developmental delay. But sometimes you wouldn’t think that at all. He does so many things that I know takes a great deal of thought. Every morning he grabs the bread and the cheese slices out of the fridge. If we need to make juice he will help by filling the can up with water and pouring it in the pitcher (even though he does tend to spill a lot). He helps me put groceries away but according to hubby he does that so he knows where his favourites are! He loves playing hide and seek. He recognizes where we are going in the car and gets upset if we don’t go to a place he likes, like respite. He seems to have a concept of time because he knows when Daddy is expected home and keeps looking out the window for him. He knows when Bugs Bunny is on because he will go in the living room from wherever he is in the house. He loves giving me hugs and every time he does he rocks back and forth as if we were dancing. All these things make K who he is. DS traits, Autism traits, a 17 year old boy, a sense of humour, a little cheekiness and a huge dash of love makes K who he is.