My situation is probably a little different than most as I am not a primary care giver. My Grandson was diagnosed at about 2 years old and like most parents we adapted our home to protect and control his behavior from child proofing everything to putting inside key locks on all exterior doors. Some basic, some extraordinary.
I have my grandson on an almost daily basis in the mornings. My daughter was enrolled full time in school and works an overnight shift with the Post Office full time so she would bring him to my house after his therapy everyday for dinner and to spend the night. In the mornings I would feed, dress and take him to his school and that could be incredibly stressful depending on his mood.
His communication was almost naught, being unable to create full sentences , his focus was linear and usually on his Moby-go never wanting to get dressed or eat breakfast but, once that focus was redirected his (and my) stress level receded and things went okay. Patterned and repetitive as we were taught. Even when a tornado hit our house and I mean hit and everyone was hunkered down in a tiny closet in the basement his eyes never left the game and he only repeated” good job” in reaction to the fear everyone felt (the extent of his interactive communication).
Like many Autistic children his outbursts and so called bad behavior came from the frustration and aggravation of wanting to communicate but being able to. I can’t say he never tried, he did. When he wanted a drink he would take my hand and walk me to the fridge for a juice or bring me a different game for his Moby-go when he was bored. I can quote lines from Open Season 1, 2 &3 I have seen it so much. So he did understand what he wanted (and didn’t want) and was in his own way able to let you know.
Many, many times when I tried to introduce new things and new foods to him only to be told by his mom or aunt that he doesn’t like that or he can’t do that whether it was a grilled cheese when he was on a nugget kick or changing his shirt on his own when he spilled something on it I would patiently wait and wait..And wait, helping a bit along the way, for him to eat that sandwich that I know he liked.
Like most people when he was first diagnosed and we went through the endless pamphlets and support group invitations and tried like hell to break free from the stereotype and ‘normals’ view of autism from the images of children wearing helmets, banging their heads endlessly to counting toothpicks fallen on the floor. For most these are the first images that come to mind from some film or documentary on some channel and our only exposure to autism at that point. Eventually we come to terms with it and move on and find and feel that relief when you realize he or she is not as brittle as an egg and won’t break during an extended hug, and begin treating him like a child and not a mistake or curse.
We need to be educated just like they do, we need to relearn things so we can teach them but as with most things in the world of autism the best therapy is a repetitive one and that is where those of us who care for these wonderful kids regularly but on a less than 24 hour basis make the biggest mistake you can when it comes to them. We tend to become complacent.
We fall into the same routine we set for the children, repeating the same thing over and over again and while it is a great learning tool for the child it really is boring for us and it takes a strong will to fight becoming robotic in our treatment and care. We need to remind ourselves that autistic does not mean stupid, autistic does not mean ignorant, or incapable, you learn the patience, tolerance needed and most of all to understand just how much that child really means to you and how much you love them despite how it seems they test you.
Most of all I want to tell all of you out there who care for these independent, strong willed loving children is something I, my daughters and everyone else involved with my grandson learned; never ever underestimate the intelligence of an autistic child or adult. While the stigma and stereotype of ‘retard’ will always follow them and even remains, filed as deeply as possible, in the back of your mind we must remember they are not stupid or ignorant, they just see things differently. They may appear to be oblivious to our everyday and regular actions when we do things like dishes or brushing our teeth, they are watching. They do see our actions and will at some point emulate them especially the ones you repeat daily. This is what we teach them with therapy and play sessions. Please remember that. Breaking the routine and changing OUR daily habits might help but again please remember they are not dumb.
Lose your belief that if he is not taught an action he won’t learn an action. He would not, could not, will not ever play with this or that. He would not, could not, will not put that in his mouth. He would not, could not, will not ever turn a key in a door, It was beyond him, he was incapable, never taught. One day he might. One day he did.
September 4, 2011 aged 4 years.