Clouds in the Sky

I’m straddling two worlds. Here I am in the NT world, walking my son to school, chatting with other mothers about reading levels and volunteering in class and play dates. And here I am over here walking my other son to his bus, his hands flapping with excitement as it rolls up, handing the aide an extra bag because we’re working on potty training at school this week and it requires daily replenishing of dry clothes.

The two worlds collide in a way that surprises and unmoors me. Sam has been invited to a classmate’s house for a play date that I have yet to schedule because of John. The other mom knows of John but has never met him, and so instead of tackling the issue, I hedge. What will I say? Can I bring his brother, oh his brother has autism and will probably perseverate in a corner… could Sam come over to play by himself? And do I really let my 5-year-old with his own set of issues go to the house of someone I barely know?

How do I manage John’s needs with Sam’s increasingly more neurotypical ones? Just the fact that he’s already making friends at school tells me that he needs to have as many of these experiences as possible. Especially since the perceptions that some seem to have of him make me squawk with indignation.

Like at back-to-school night. I approached Sam’s teacher to say hello and to tell her that after hearing about their day, I now understood why he was obsessed with drawing and cutting out clouds. He always seems to process the things he’s learned by recreating it as soon as he gets home. She greeted me warmly and said, “Sam is so smart! What a unique way he has of seeing things. When he shares his ideas in class, the other kids always seem to get it.”

Another mom was waiting for her turn to speak with the teacher and overheard our conversation. Later she said to me, “Wow, Sam sounds so smart!” I agreed, saying something about how he always surprises us. Then she asked, “Is he smart like Rainman?” I’d like to say I had some witty comeback, something to make her wither like I did on the spot. But I was so taken aback that the most I managed was “Uh, no.”

It made me immediately regret being open about our road to diagnosis back when they were barely two. There are too many people who only know the label. Too many whose expectations and impressions are already tainted by a word, a word so loaded in this age of Jenny McCarthy and Autism Speaks, that we butt up against ignorance all the time. Next thing I know this mom will see the latest Autism Speaks video and assume that’s what my life looks like and it infuriates me.

Here’s the thing: autism is just a word. It’s a word that encompasses too much in my opinion. Autism is a spectrum of disorders and no person has the exact same chaotic mix (even my identical twins). Autism Speaks would have you believe that not only is autism a dark menacing cloud, but a black vise imprisoning our children. Yes, they want people to contribute money to their cause. Do they need to instill fear and spread misconceptions in order to do so? Can’t our lives, challenging as they no doubt are, be represented without alienating the autistic community and a good number of parents as well?

What about the parents of the newly diagnosed who are looking for hope? What about my own children? What if Sam saw this video and thought that’s who his brother is? What if another child said to him My mom says you have autism like Rainman, and he thinks of himself this way, as someone with something that other people would wipe out? What about all the others out there, not bad people, but people whose only knowledge of autism is the version spewed by Autism Speaks?

Yes, I often feel despair. But this video left me feeling the worst despair I’ve felt in a long time.

No, our lives have not been easy, but whose have? There is no doubt that autism has set us on a course we could never have imagined, but now that we’re on it, could we imagine another? You can’t separate autism from my boys any more than you could separate clouds from the sky. Depending on the light or your perspective, those clouds are either menacing and dark or beautiful and an intrinsic part of the picture.

Some days they are both, I am human. But if I lived under that dark cloud all the time, what kind of mother would I be?

How about instead of the fear-mongering, Autism Speaks works harder to talk about the therapies and supports that could make my boys’ lives easier, not more difficult? No? How about the creation of a new organization that spreads a kinder message of inclusion, hope, and acceptance, that educates others on autism’s many facets, both good and bad? That would be a group I could put my support behind, that would be a message for which I would walk on the National Mall.

Autism is not the reason life is hard. Life just is. It can also be spectacular and has everything to do with how we feel on a cloudy day.

7 Comments

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  • I think that you’ve hit the nail on the head with that video. When it boils down to it, I wouldn’t want any of my kids to watch it and think “That’s me” or “That’s my brother.”

    As far as the playdate, maybe ask if the other kid could come to your house, with or without his mom. Sometimes it’s easier to introduce people to your family if you’re on your home turf.

    As always, your post is full of so much information and wonderful sentiment. There is so much to comment on, but I will leave it at this and say, “It’s great to get an update from you.”

  • YES! Your message is so clear and truly to the point. We love them FOR WHO THEY ARE. Not because of or in spite of “it.” We love them. They are our children. Bright, beautiful, smart, lovely and ours. We love them, and no, life is no picnic (c’mon, is it for ANYONE?) but we love them for who they are.

    I aim no ill-will at Autism Speaks. Many of their points in the video are sadly true. But, again, Autism Speaks does not speak for my family.

    love.

  • If I’d seen that video in the early post-diagnosis days, I don’t know what I would have done. It left me simply aghast. And also feeling like I need to blog about the happy days much more than I do, instead of the hard stuff.

    I’ve been on the receiving end of many stupid comments, but not Rain Man. Yet. Sigh.

  • Great post. You really highlighted the range of the spectrum. Labels can really be misleading. It is great to read about how well your boys are doing!

    I have to differ and say that video said exactly how I feel most days. If my son is ever high functioning enough to watch it and understand it I will be over the moon with happiness. The second half of the video is full of hope – families, moms, dads, siblings coming together to make the lives of their autistic loved ones the best they can be. AUtism HAS robbed my son of the ability to communicate, to play with anything but paper and leaves, to sleep properly, to function. I LOVE my son but I hate what autism has done to him.

    On the other hand though, I don’t think that video should be the only look into the world of families with autistic members but I think too often the pain and frustration of raising a low functioning child is glossed over byt the media. We hear miracle recovery stories but rarely do we hear about the kids who never gain language, who hurt themselves all the time and end up in hospitals or group homes because their autism is so severe. I guess I am just saying that beeing too negative is bad but only highlighting the positive excludes a lot of people too.

  • The next time someone asks if your son is like Rainman tell them yes. He’s not only the designated driver when you and hubby go out for drinks but you took him to Atlantic City and made a killing at the blackjack tables.
    Is it time for Wapner yet?

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