In the year since my daughter’s diagnosis, I have tried very hard to protect her from the “A” word. And the other “A” word. I have come to terms with the fact that her life will hold a few extra challenges than a typical person’s, but she is at the point where she has anxiety and stress any time she sees herself being the slightest bit different. While I’m still not sure when she will be emotionally mature enough to handle hearing about her diagnosis, with our recent move and starting a new school, I had decided now is definitely not a good time to spring it on her.
So with our move we lost a wonderful provider who had many great therapy plans for her. We are also now stuck with a 6 month waiting period to get her in with a specialist in our area that is covered by our insurance. I imagine just as we get good and settled with the new therapist we’ll be facing yet another move. That’s the pessimist in me talking…
In an effort to help Bailey with her coping and social skills in the meantime, I have purchased several books on Asperger’s and Autism Spectrum Disorders. I’ve printed out Tool Kits and Parenting Your Child with Asperger’s articles and so on. It was only a matter of time until my little girl, who the majority of the time is in her own little world, started noticing these books and articles lying around. I should have seen it coming or at the very least been a little more prepared. But there we were sitting at lunch and she pops off “Mama, what is Asperger’s?” I’m taken off guard not only at the question but at the fact that she even pronounces the word correctly.
I paused to organize my thoughts a little before opening my mouth. I tell her that Asperger’s is something that some very smart children and grown-ups have. That they may have a hard time making a LOT of friends, but the friends they do make are the very best kind. They may know everything there is to know about things that are very interesting to them, but they may struggle in subjects that don’t interest them very much. I noted that loud noises or bright lights may upset them a great deal. Children with Asperger’s may talk like a grown up or talk very loudly. Sometimes they may even recite phrases they’ve heard before as a way to communicate what they are feeling because they struggle to find their own words. They may seem very silly and have funny body movements, but that is their way of expressing themselves. I told her they may also have a hard time controlling their bodies, and that they may act before they think. Sometimes they may get so upset about something that they need a break in a quiet place to calm down. Sometimes they need movement to help them calm down, like swinging in a swing or jumping on a trampoline…that the movement soothes them. I tried to make it as simple and positive as possible so just in case she identified with what I was saying she would have positive thoughts and not get upset about feeling different or singled out. The last characteristic that I spoke about was simply that an Asperger’s brain has a hard time organizing its thoughts and memories and it processes things just a little differently.
She looked at me with those big, blue eyes, listening more intently than I think she ever has, and responded “You mean, different from ours?”
I kind of was hoping for more of a “Hey! That sounds like me! Asperger’s is SO COOL!” Ok, maybe that was shooting a little high but why did she have to say “different from ‘ours’“? It just confirmed to me that she is going to see herself as an alien and I’m so afraid she will dislike herself for being an alien. In reality, there are many ways she is like a typical child. But she has many quirks that do separate her from the crowd and I’m so dreading the day when her new schoolmates start picking up on how different she is and jump at the chance to point out to her how weird she is acting or talking. Her 1st grade classmates were an absolute Godsend. It’s almost as if they each felt a duty to protect her and help her whenever they could. They loved her quirkiness and talked openly with me about how funny she was and how much they liked her whenever I came into the classroom. But I know the older she gets the less understanding and compassionate her peers will be. It breaks my heart to even think about it.
Without giving me an opportunity to reply (thankfully) she said, giggling, “I thought Asperger’s was a package of tiny pink burgers. Big ones too.”
Her explanation does sound a lot better than my explanation.
I suppose the best thing to do until the time we have “the talk” is to continue to point out to her how wonderfully made she is, and that God doesn’t make mistakes, and He gives us all wonderfully different gifts to share with others. That the brain (and heart) He gave to her, He gave with a perfect plan in mind. I will also continue to point out to her that I wouldn’t change even the smallest thing about her for the whole universe.