Last week, I attended a panel discussion hosted by the SPED PAC (Special Ed Parent Advisory Council). The topic of the panel was “Talking to Your Child About Their Disabilities”.
We’ve been talking about autism in our house since well before G was diagnosed. We had to have a way to explain to S the reason behind the army of Early Intervention therapists who occupied our home on a steady basis week after week. For a long time we described the source of G’s struggles as, “G’s brain goes bloop, bloop, bloop.” Here’s how the conversations went: G’s brain is a little different than your brain. Your brain goes bleep, bleep, bleep and that means that there are some things that are hard for you to learn, and they are lots of things that you can learn really easily. G’s brain goes bloop, bloop, bloop. That means that G can learn lots of things easily, but the things he learns easily are different than the things you learn easily. Mommy didn’t need any extra help teaching you how to crawl, walk, chew your food, respond to your name, etc… because Mommy’s brain goes bleep, bleep, bleep just like your yours. Mommy needs help teaching G, because she doesn’t know how people whose brains go bloop, bloop, bloop learn the best. But all of G’s teachers know, and they are teaching me.”
Eventually, we swapped the word autism in for bloop, bloop, bloop…. But it’s still the same concept.
Once I did start talking to S about autism, it came pretty naturally. We have a few picture books on the subject that I keep pretty close at hand. We’ve had some pretty good conversations that have taken shape after it became clear that the characters in the books share a lot of characteristics with her brother.
The word autism is part of our family’s vocabulary, and I imagine that it will work its way naturally into G’s vocabulary without much angst and effort on our part.
Concern over how to introduce G’s disability to G was not what motivated me to attend the panel. I feel reasonably confident in my ability to find the words necessary to help my son understand his autism. In some ways, I’m looking forward to the time that he is more verbal. To a time when I can puzzle through with him the challenges, quirks, gifts and abilities that make up his deliciously complicated, extraordinary and fascinatingly unique brain. I’m not envisioning talking to my child about autism, but more talking with my child.
However, I find myself more and more wondering how to address the topic outside of our house. We are so fortunate to have friends who have known us a long time. They’ve walked with us on this journey, as we’ve struggled with trying to understand the mysteries behind G’s unusual constellation of struggles and strengths. Receiving a diagnosis, putting a name on it, was so helpful to us. Now we know what we’re dealing with. Now we can put together a plan, construct a path, that can guide us into whatever future will be ours. Our friends have supported us, listening and learning alongside us. For these long-time friends, autism is just a word to describe the quirky behaviors of the G they already know and love.
But what about the new friends? It’s such an exciting development, such a miraculous blessing, that G is fully integrated into a mainstream kindergarten class. But with that blessing comes an unexpected dilemma for me. I want G to have friends… lots and lots of friends. I want him to have play dates, attend birthday parties, socialize on the playground. I want it all, and I want him to be successful.
I think that in order for him to be successful, the other kids (and their parents) will need to understand something about G’s struggles. How he misses about 80% of information that is presented orally. How he overgeneralizes rules to fit every situation. How he seeks sensory stimulation through unusual sounds and motions. I don’t want social situations to become awkward when these behaviors arise unexpectedly. I also don’t want social situations to be awkward by throwing around the word autism when it’s not needed. I want to pave the way for comfortable relationships between G and his new friends. I also want nurture the budding friendships between me and the parents of G’s new friends. What is the way to do that? I want to speak openly about G’s autism, in an effort to create a bridge of understanding. But how will that bridge be perceived? Will my overtures be perceived as a sharing of information that will help our kids understand one another… or it will it be perceived as an obtrusive over-sharing of personal information? I hope it will be the former… but I’m just not sure yet.