The title sounds a bit harsh, I don’t mean to undermine the experts, doctors or teachers… but I do want to emphasize one thing rather clearly, you know your child better than they do. They know generalities, sciences and the history more than you do but they don’t know your child. This means that in some cases, you do know better and in some cases, you need to explain some things.
I would like to give an example and I hope I don’t offend anyone, they did nothing wrong, it’s just that this was a situation where we, as the parents, had to step in and explain how our child was unique.
We are very fortunate to have found an extremely wonderful school for our son, where the entire bottom floor is dedicated to Autistic children. This means that different rules apply there, such as peanuts… they’re allowed on that floor, since many children have special diets and in some cases, some nuts are actually therapeutic. We sold our house at a moment’s notice, moved over 8 hours away and had some rough times but we were determined to make sure that our son was in this school and it turned out to be a great decision.
At the age of 4, Cameron had his first full year in school where he had one teacher, 4 teacher’s aids and all the other children were also Autistic. The number of students varied through out the year but generally it was around 7 or 8. So imagine, 4 aids to 8 children plus a teacher as well. This was perfect for our son.
Prior to his schooling, we had worked very hard with Cameron to develop his speaking and education at home… when he visited his first class room, he could already count to 40 and recite his alphabet just fine. Not astounding but for an Autistic child who hadn’t said his first word by 2.5 years old, we were happy with his progress.
The problem came when his teacher and instructors were also impressed with his progress… in fact, too impressed.
For the first few months, a gradual change grew in Cameron as he’d become more and more disobedient, more prone to screaming, more violent… it just got worse and worse and we feared that he wasn’t settling into school, he was becoming less content with it.
We had been trying to talk to Cameron about what was bothering him, what was wrong but getting any child to volunteer information is rough, especially an Autistic child. Basically what it amounted to was us guessing at every possible situation and scenario we could possibly imagine until we hit it… and after several months, we did. His trigger word was “safe”.
What it boiled down to was his sense of feeling safe… once we hit the trigger word, he opened up and told us that “they don’t keep me safe” which meant, they didn’t make him feel safe.
My wife and I visited briefly one morning with his teacher who was completely understanding about it but it wasn’t until I had, in just a few minutes time, a chance to observe what was happening.
As we stood there, Cameron took one of those wooden animal puzzle boards and began placing the pieces as another little boy walked over, dumped it all out, walked to another child, knocked over their blocks, walked to another child…. and basically just disrupted everything.
No one had noticed this except for me, and no one would have ever known because Cameron just picked it back up and started over.
But what was happening was that he felt violated, unsafe… and would come home where the emotions would boil to the surface.
We discovered that, because Cameron seemingly took everything in stride and never complained about these things, the teachers and aids would either not notice, or remove the disruptive child from the situation… leaving Cameron there to be by himself, feeling quite alone, quite unsafe.
We never would have ever known without having been there for those few minutes to talk to his teacher but it all became quite clear.
After talking to them about it, they admitted that he seemed “too high functioning” to be thought of as having any problems like that. That he was so well behaved that they never imagined that he was having those feelings. And how could they? He didn’t demonstrate any problems until he got home.
Following that moment, we saw another huge change in Cameron… he settled back down, he became the happy and content child we had known previously. He felt safe again. His teachers began to pay him more attention in those situations, to remove him from the scene (from the danger) and to make sure to always keep telling him how they’ll keep him safe.
We’ve had no problem since and the year is almost over.
Again, we’re very lucky to have found such a wonderful school for him, and we’re lucky to have such great people with him that will take our input, to not be offended that we step in like that, that do their very best in what must be an extremely difficult situation.
Personally, I couldn’t imagine what it must take to be facing many Autistic children every day, of varying levels of severity and to not only manage, to not only take care of them all but to teach them daily. It’s a huge task and one I am sure I could never do.
But despite all that, they still need the parent’s help sometimes. They know it, I know it. It’s important that every parent knows it. Handing off your child and thinking that you finally get a break is not an option if you want what’s best for your child.
How Quick We Are to Judge
I think it’s safe to say that if not all, then very close to all, parents of Autistic children have had to endure the comments, looks and judgments from others while our child throws him/herself into a fit of rage, screams at the top of their lungs and/or starts to get violent. It can happen at the most opportune times such as at restaurants, grocery stores, play centres and well, really, anywhere.
We have all had that moment where we look at the person judging us and debated within ourselves whether or not they warrant an explanation or if we’ll just leave it be and not give them the time of day. It’s hard enough to deal with all by itself without the mumblings, judgements… comments.
Something happened to me just yesterday, which actually had nothing to do with Autism but it really made it very very clear just how quick we are to judge.
My wife frequents a message board with other moms where one lady had just recently lost her child and that mother had asked that anyone who may be going to be a beach, to write the child’s name in the sand and take a picture. It just so happened that we were going to the beach so this was certainly something we could do for her.
We had a great day and prepared to leave but realized that we had forgotten to take the picture so I raced back to the water’s edge and wrote the boy’s name and proceeded to get pictures. But I wanted pictures that captured the moment so I took angles which would capture the water as well, even the other side of the lake, while still being able to read the name.
As I tried for a few angles, I could hear some teenagers in the water swimming and one of them said “uhmm.. why is that guy taking pictures of the water?” to which another replied “I can think of one reason… ‘fruit loop!'”
I dismissed it, no big deal really but after a few more pictures, their attention turned back to me again. “Seriously, what is wrong with that guy?”
Finally, one of them, bless him, said “Uhmm… why don’t you just ask him?”
Well now, there’s a novel thought! I mean, truly brilliant if I must say. If you don’t know why a person is doing something, why not ask?? Hm… nah, that doesn’t make any sense… and so they continue… “He’s just weird!”
So at this point, I spoke up, kind of changing the story a bit as it was none of their business about a poor lady’s loss “Actually, a little boy is very sick and all he asked for was to have someone write his name in the sand on a beach and show him in a picture, ok?”
As I turned and walked away, all I could hear “awww… that’s so sweet” and “oh my God, I feel so bad” and “that’s such a nice thing to do!”
I made sure to leave the name in the sand because it was right where they’d be coming out of the water. They’ll still judge the next person they deem ‘weird’ but maybe, just maybe, they’ll remember back to the day when they called some guy a fruit loop for doing something they didn’t immediately know the purpose of.
As for you… the next time you see a child acting out, being seemingly total out of control, remember that that is exactly what Autism does to a child… remember that, at this point, 1 in 110 children have Autism. How many children are in your city? And most of all, remember… maybe that parent is to blame because maybe the child is not Autistic, but how bad will you feel if it turns out that the parent is on the edge of a cliff emotionally already because of just how hard it is to raise an Autistic child and your judgment, your hateful glance, your comments that you should really keep to yourself…. what if that’s what pushes that parent over the edge?
Don’t roll your eyes, it can happen. It does happen. If you knew that you were going to be told after that that child lost their parent, and are now having to deal with their Autism on their own… would you still be so willing to make that judgment?