Labels

So, by the end of the year, my Jelly Bean will most likely be labeled as being on the autism spectrum.

It’s important to see that for what it is.

It’s putting a name to a set of characteristics that cause her to need support in school. It’s not adding anything new. It’s not changing anything about her. We already knew–have known–that Beanie has difficulties with receptive and expressive language, is “young for her age,” and has sensory and fine motor issues. We’ve already grieved the fact that our daughter will be facing these challenges. We were well through that process when I began writing this blog.

But do you remember how I introduced Beanie to all of you? I didn’t tell you about her disability right away, because I didn’t want that to be the first thing you knew about her. The most important–the most obvious–thing about my Beanie is that she is a gorgeous, charming kid who seems destined to live a perfect life.

She’s still the kid who got all of Manistee dancing. She’s still the little charmer who walks right up to kids, in port towns, and says “hi!” She’s still a child who is being raised minimalistically, and is far more attached to people than to things.

And the label will not change that.

I think the autism label is especially difficult, because our understanding of the disability is evolving so quickly that we don’t fully understand it ourselves. Even in the education field, the word “autism” brings with it a picture of a complete person–a stereotype, actually, although nobody intends it to be that.

Beanie may be on the autism spectrum, but that doesn’t mean that she doesn’t connect with other people (a funny assumption anyway, because I’ve always connected the best with my students who are on the spectrum). It doesn’t mean that she is overly concerned about her possessions, or bonding with them more than other humans (I wonder why she doesn’t have that characteristic…). It doesn’t mean that she lacks an imagination.

Most importantly, this label will not change the way we are raising her. We’re still not going to overload her with possessions and electronic toys. She still sleeps in a sleeping bag in the basement. We still won’t buy a television. We’re still going to spend as much time teaching her about the value or being intentional and living simply, as we spend working on her therapy tasks. We’re still going to sail and live aboard next summer.

There are things in our life that are more important than labels.

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