Life in Flashing Neon
Our final blogger for Autism Week certainly needs no introduction — the indomitable Shaunta of Live Once, Juicy.
When I was 22 years old, I went into the hospital one December day and was sent home the next with a gorgeous bundle of never-quiet, never-sleeping baby boy I called Nicholas. Now, I’m 40 and that boy is 18. Still Nicholas. Still never quiet. Still rarely sleeps. Still gorgeous.
It took a lot of years to figure out the never-quiet, never-sleeping part. Also, the won’t-let-me-put-him-down-but-freaks-out-if-anyone-touches-him-uninvited part. And the socially awkward part. And the random, but frequent, five-alarm, code-red meltdown part.
The process of getting to an autism diagnosis involved two misdiagnoses, each of which came with bucket-loads of unnecessary psychotropic medications. There was also the school counselor who told me my six-year-old probably wouldn’t graduate from high school; the strangers who insisted that all he really needed was a good beating; the marathon individualized education program (IEP) meetings.
Now Nicholas is 18. He’s a senior in high school, but because he generally lasts half a year in regular school before we home school for a while, he still needs some credits. He’s fully integrated, although it’s a giant struggle (mostly because no one has figured out yet how to integrate autistic kids). He’s a bright kid with the highest self-esteem I’ve ever seen, who takes everyone at face value, and who has a personal code of conduct that is amusingly chivalric.
But guess what? Just like EVERY OTHER KID, mine has grown up. And just like every other 18-year-old, he’s not done yet. He doesn’t melt down in the way he did when he was nine. Or ten. Or thirteen. Or even sixteen. He’s been able to go to school for this whole school year. That has happened since fourth grade. Maturity happens between nine and eighteen, for autistic kids, too.
Nick’s big sister heard someone speaking a few weeks ago about Job Corps. Run by the Department of Labor, Job Corps offers vocational training to people ages 16 to 24. Although there’s training in many areas, what caught Nick’s attention was the culinary program. Nick loves to cook, so he called. He set up an orientation date for himself, and me. Then he set up a tour. Then an interview. He organized a time to get a state ID card, a copy of his social security card, ordered his high school transcripts, and filled out his application. He went to the interview alone. Finally, he was accepted into the program.
Maybe that doesn’t seem like such a big deal. But to a mom who, since she was 22, has never been entirely sure her son would be able to have any real independence, his initiative was almost heart-breaking in its beauty.
I have no idea if he’ll be successful. I also had no idea that his neruo-typical sister would spend half of a day at her dream college, realize she hated it, and then jump through insane hoops to get accepted into the state university. At least three of my daughter’s friends went home after failing their first semester at that university and losing their financial aide.
Here’s what I have to keep reminding myself, which is exactly what I have always had to keep reminding myself, since the day I realized that my child would probably never need half as much sleep as I do (three-year-old who sleeps three hours a night, anyone? Anyone? No?): Nicholas is more similar to other kids than he is different. It’s so easy to impose not only normal kid expectations on him — but to compare him to the most perfect possible child of his age. I’ve worked in high schools and I know that if Nick didn’t take the initiative to get himself enrolled in Job Corps, he wouldn’t be very different from at least half of the kids his age who I know. And I know that if Job Corps isn’t a great fit for him, it doesn’t mean that he’ll never be successful at anything. Or that he’s any different from lots of other kids his age, including those who don’t have autism.
This is getting long, so I’ll just end with a little advice for anyone else out there with a kid who has autism, or really just about any difference:
Your kid is different, but not alien. Even the most different of different kids out there has more similarities than differences with his or her peers. Think about a green and red apple. You can easily tell them apart, but in reality, they’re both round, crunchy, sweet-tart fruits with seeds inside that grow into beautiful, big trees in places with cold winters.
Read a book by Temple Grandin. All of them, if you can. See her speak if she comes anywhere near you.* You can thank me later.
Even when it feels like you would sell your soul if it meant your child could just blend — just a little bit — find a way to celebrate the difference. I tell Nick, and myself, as often as necessary that different is world-changing. Every kid deserves to shine. Mine (and maybe yours) shines in flashing neon, whether I like it or not. Life is so much easier and more enjoyable when I embrace the difference.
Be flexible. Be patient. You might be the only person in your kid’s day who is, unconditionally, these things.
*Template Grandin gave an amazing TED talk you can see here.