Excuse Me? I Need a Tour Guide for Switzerland.

I don't talk about it much. I deal with it daily. Some days better than others. But it's always there in the background, threatening to derail the day in an instant. I hate labels. I hate boxing people in. I hate narrowing who a person can be down to a set of predictable or probable behaviors. And yet...

It is time I look it in the face. Call it what it is. Use the labels as tools to find partners who can come alongside us and help unlock some of the secrets to being parents who give their kids the very best chance of becoming who they were created to be. I have a son with autism. More exactly, I have a son who has been diagnosed with high-functioning autism and secondary attention-deficit hyperactivity disorder. My brilliant, sweet, snuggly, orderly, just-so, complex-subject grasping child is autistic. EVEN on days when he *appears* to be typical, he is not. Even though he is highly intelligent and has no comorbid physical problems, his brain still functions in ways that need extra help, patience, accommodation, and work in certain areas. And I will never know what or when that will happen until it blindsides both of us in a mass of frustration and tantrumming.

He has always just been "Michael" to me. The one who needs a little extra time adjusting to things. The one who will come out from under the table when he's ready. The one who draws pictures of houses as though from an architectural birds-eye layout view rather than from the front elevation box-with-a-triangle-on-top view "typical" kids see. The one who shocked us by verbally showing us he knew math skills and reading skills we had never directly taught, just because he had picked them up in listening to others' lessons. The one with the infectious laugh and the killer brown eyes. The one who, despite social integration deficiencies, draws big hearts with the names of each family member inside with ink on his legs because he tattoos himself with what he cares about. The one who will probably never ever wear a pair of pants without an elastic waistline and for whom we dare not purchase clothes unless he has tried them on in the store - twice. The one who sometimes plays happily with new kids at the pool and other times hides in a corner because there's too many new people around. The one who we have seen so much progress with, but who is becoming more frustrated with his own limitations as he becomes more personally aware of them. My third son.

I have always avoided the label because of the limits it seems to impose. My son is who he is; he is not defined by a condition (process? delay? imbalance? genetic anomaly? what-is-it?!). But as I picked up a book recently and read, I wept. Somebody else gets it. Completely. Whatever this enigmatic thing called high-functioning autism is, it does impact how he interacts with the world around him. It is *part* of who he is. And we're along for the ride. Because of somebody else's words, I was able to put words to how I have felt. Since about the time Michael was 3 years old, it was obvious. By the time he was 6, it was official. We now lived in Switzerland. And Switzerland is confusing; very often, it is lonely and overwhelming.

The article quoted in the *book: linked here.
The *paragraph that followed that had me bawling:


"Yet, high-functioning autism isn't quite the Holland of "regular" autism. There are some real strengths, and there are traces of autism, but how much? There's a reluctance of professionals to diagnose anything. It's perhaps like being in Switzerland - a little bit of Italy, and closer to Holland than some of the other people in Italy, but not so close that you feel welcomed by the Dutch. Enough to see the abyss, but not find the support. Switzerland can be very confusing.... High-functioning autism is something our children have, as well as a characteristic of who they are... It's a really fine line between 'quirky' and 'problematic.' A gap between 'talented' and 'not quite right.' Somewhere between 'cute' and 'hmmmmm.' "


*Children with High-Functioning Autism: a parent's guide by Claire E. Hughes-Lynch, Ph.D

Comments

  1. I've typed all sorts of words.... nothing seems to sound right. Just know that my "momma heart" breaks with your's and I know that being pushed beyond yourself is NOT a comfortable thing. I am praying that God will send some of His best tour guides to walk with you through the streets of Holland.
    Micah

    And you know me.. a little lighthearted note...
    The hear the tulips are beautiful there! :D

    ReplyDelete
  2. I read something on a friend's facebook this morning: Being understood is sometimes better than having answers. I just loved that!

    {{{HUGS}}} and prayers to you ...

    ReplyDelete

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