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Life in Flashing Neon

May 18, 2012

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.

10 Comments leave one →
  1. May 18, 2012 10:17 am

    What a beautiful way to wrap up this week. Thank you, Shaunta, for sharing your son’s amazing journey. You ought to be proud of the job you’ve done as a parent, and the child you’ve raised into a self-sufficient man. I know not all autistic children will have the abilities, or opportunities, of your son, but you have also given a glimpse of hope to those parents who see nothing but gloom and doom in their child’s future. I wish him well in his work with Job Corps and that your daughter finds what she is looking for as well.


  2. May 18, 2012 10:32 am

    Shaunta, I sincerely wish I’d had a mother like you.

  3. vesta44 permalink
    May 18, 2012 11:22 am

    Shaunta, it’s mothers like you that give me hope for the future.

  4. klrtinkerbelle permalink
    May 18, 2012 12:43 pm

    Shaunta, thank you. Beautiful, simply beautiful.

  5. fat aspie permalink
    May 18, 2012 2:57 pm

    Thank you Shaunta!

  6. Mulberry permalink
    May 20, 2012 2:40 pm

    A question here: so many articles make autism sound like some sort of absolute – you have it or you don’t. Or you have some form like Asperger’s. But isn’t it really a continuum? And if it is, who decides when it’s extreme enough to be a problem? How is it diagnosed?
    And what’s wrong with being a little different? Even ants can have specialties.

    • May 20, 2012 9:27 pm

      The answer to your first question is a little of both – you are on the spectrum, or you aren’t. The major factors are language delay and social difficulties. If you have the first and second, you’re more toward the “classic autism” end of the spectrum. If you have the second but not the first, you’re more toward the Asperger’s end of the spectrum. If you don’t have either, you’re most likely not autistic, but you may be otherwise developmentally disabled.

      I personally don’t have a problem with being a little different. 😀 but in a world designed for a certain phenotype that isn’t mine, problems happen.

  7. The Real Cie permalink
    May 22, 2012 5:21 am

    That’s a tough row to hoe, and it sounds like both of you handle it very well. The vocational training program sounds like a great idea. My circumstance doesn’t involve my son (well, it does indirectly, as of course, he is part of the family) who does not have autism, but has battled mood disorder issues (major depression.) It involves his father.
    I am allowing my ex husband to come live in the back of my house (again) with the two stipulations that he must take out his own trash at least once a week and that he must go to vocational rehab. He is an extremely intelligent person, holding a degree in economics. But he has never been able to hold a job. To make a long story short, I have come to believe that he may have Asperger’s or something similar. He doesn’t relate to the world the way other people do, and he tends to get depressed and shut down. If they could help him find an answer via Vocational rehab, that would be a wonderful thing.
    My ex husband’s own mother thinks I should let him be homeless. She thinks he’s just lazy. I know that isn’t the case. I also know he can be difficult to deal with when he gets in one of the dark places–not dangerous, just impossible to communicate with as he shuts everyone out. I’m hoping that if I keep a positive attitude from the beginning, we’ll be able to get him some help this time.
    Good luck to you and your son. I think that there still needs to be more efforts to understand both mental health and autism spectrum disorders.

  8. May 29, 2012 3:06 pm

    Shaunta…you expressed EXACTLY how I feel…Thank you so much for this post…It gives me such hope for my Rowan when he gets older. 🙂

  9. Mina Knittle permalink
    November 28, 2012 8:46 pm

    Autism is still a mystery to doctors since they cant exactly pinpoin the main cause of it. ‘

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