My daughter’s autistic, but don’t underestimate her!

19 Sep

Like most parents of autistic children, I am SUPER-vigilant about certain things. In my case, it’s sensory situations, new situations and routines. I’m not stressed about diet or medicines. But my big three are MY BIG THREE.

I like to think of the story told by Ellen Notbohm in her book Ten Things Every Child with Autism Wishes You Knew about her family’s trip to Disneyland. In preparation and to make things easier for her son, she made sure to get a rental car that was as identical as possible to their family’s normal car. They got that car but unfortunately, it didn’t work out. The reason: new car smell. They ended up taking the bus all week instead.

The Princess has spent her entire life in fear of diesel engine sounds. And none were ever so bad as the school buses that lined up outside of preschool. We arrived first thing in the morning and there were always some waiting. The Princess screamed, she covered her ears, she buried her face in my torso furiously. But my husband was adamant. The Princess WOULD ride the bus to school for kindergarten.

So…after two years of torture waiting for the school doors to open…The Princess’s first day of kindergarten began on August 25. It was with some apprehension that I took her down to the bus stop to wait for the bus. I had approached this as “trying the bus out” knowing that if it didn’t work out…I’d be hauling three kids down to school in the morning and dragging the boys out again to pick her up. At the IEP meeting we said that we weren’t sure what her reaction would be but we were going with least restrictive seating, meaning that until The Princess had proven to us that she needed to be strapped in on the bus, she wouldn’t be.

We waited anxiously and when the bus got to our stop…The Princess walked on like she was an old pro. No fear, no screaming. Nothing. I did tell the bus driver and monitor it was her first time, so she wouldn’t pick a seat, she would stand there until they directed her. And they did great with her. The relief at seeing her so happily going with the flow washed over me. I had totally prepared myself for the worst, but it turned out excellent.

Yeah, I was nervous about The Princess’s ability to adjust and adapt to such a huge change. Especially when it involved something that had previously sent her screaming and running to the hills. Do I feel bad about it? No, no I do not. I had to be prepared for a struggle or difficulty. If I hadn’t and it happened, I would have been in really bad shape.

What is it that we drill into our psyche about our autistic children? Routine, routine, routine. To the point that sometimes, we cannot imagine them successfully deviating from it. But is that ALWAYS the best thing? All the time? Well, in my case it isn’t. As much as I know The Princess needs routine; as badly as I try to make everything go as scheduled all the time and avoid all negative stimulants; sometimes it is best to just let things happen for The Princess and see how she takes to them. I always have to have a back-up plan, but I can never fall into the trap of underestimating her.

I have been the first one to say, The Princess can’t go the airshow, the noise will bother her (well she went and it didn’t, neither did the simulated missile strikes). Or The Princess shouldn’t be given this type of food because she didn’t try it last time (and she tried it and liked it). And who did that really benefit?

I realize that this is a “cavalier” attitude (as some have told me it is) among parents in the autism community. Do not fret, I do not throw caution to the wind and have more than my fair share of doubts about  doing it! I also know it is not for all families or all individuals with autism. I only share it because I want to re-iterate one thing: no two people with autism are exactly alike. Just as no to typicals are exactly alike. Therefore, I can’t raise The Princess the way every other parent of every other autistic child raises said autistic child. I have gotten to a point of understanding that I can’t underestimate The Princess that when I announce via facebook or twitter we are trying something new that I am the one chafing under the people clucking “routine, routine… .” Yeah, routine has a heavy place in our (meaning my family’s) lives but so does making choices and trying new and exciting and scary things.

So, while I don’t throw The Princess into the deep end of the pool, I don’t restrict her to the shallow end either. I let her find her way sometimes. And I am never, ever disappointed.

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One Response to “My daughter’s autistic, but don’t underestimate her!”

  1. Lowe Matheson September 19, 2011 at 10:40 am #

    That is the way we work with our son. I like to call it controlled chaos. We might come home to our house on another street or mix up the songs on his favorite CD. And most likely he doesnt like it -at first but then…he does. And one more barrier comes down. Right now it is working on wearing Khaki colored shorts/pants. Do I know why this is an issue? No. Do I appreciate his discomfort? I do. Am I beaming that once we have talked for 20 minutes about it and slowly pulled them up that he quickly forgets they are on and all is well? Definitely. The thing that drives me is that someday we may not be there for him so the more adaptable he can become, the easier things will be for him out in the world. For our son, helping to respect the routines he needs to control/understand aspects of his world-we are all for. Helping him to be more pliable about everything else….we are happy to try.

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