Never Give Up

When Ian was really little, like five years old, I had a meeting with a high level special education administrator. I was pretty miserable at that time. I didn’t feel like he was getting enough support for his disability or being appropriately challenged. We knew that he was smart. His test scores were in the 99th percentile. But he had SO MANY issues at that time.

He could barely understand what people were saying to him. His ability to comprehend language went down to zero when he was upset. His pre-school teacher would pass him written notes during those times, because he could read, but he didn’t understand what she was saying.

He frequently screamed or got upset, but couldn’t tell people what was bothering him. Looking back on it, he was just scared all the time. You would be too, if you didn’t understand what people were talking about. He had lots of sensory issues; he couldn’t tolerate loud sounds, bright lights, clothes.

Now, when he hears songs from that time or an old movie pops up on the TV as we’re flipping through channels, he runs out of the room. He said that those images and music trigger “nightmares.” He said that he gets flashbacks. I think he suffers from PTSD from autism.

Anyway, I was in this office with the administrator to request that he be held back for a year, so he would have another year to grow and catch up with his peers. She said no, because it would cut short his time in high school when they would have to train him for a job. In other words, she looked at him and saw someone who would need lots of training to stack shelves in Walmart. She had sized him up at age five and wrote him off.

Twelve years later, Ian took his PSATs this month. He spent an entire day at a band festival yesterday, playing bass drum and marching around the field. He blended in. He still has language deficits, sensory issues, and nervous tics, but he’s also rocking his talents in music and computers. He has a future ahead of him. A good one.

Every year, he gets better. This year’s band festival went much better than last year. He’s less likely to get irritated with peers who do random things. He doesn’t need an aide to supervise him. He chatted with classmates. I get lovely notes from his teachers, who tell me that he’s continues to surprise them.

Here’s what I’ve learned from raising a kid with autism — brains heal. They don’t heal completely, of course; Ian will always have his struggles. But with lots of work and opportunities, brains do get better. So, sizing up a five-year old and predicting adulthood is not only useless, it is harmful.

That administrator urged me to stop being so miserable and accept my kid’s limitations. She suggested that I spend more time on my career. Just the week before, another administrator had told me to stop worrying and to get a manicure.

I am so glad that we didn’t listen to them.

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8 thoughts on “Never Give Up

  1. I’m with you–we were told our special needs (epilepsy and learning disability) daughter would never get beyond childcare or fast food worker, but she is now a college graduate (BS in geology) with a certificate in geospatial information systems. She works full-time for a contractor for the National Geospatial-Intelligence Agency here in St Louis. Took her 12 years to get through college, but she’s a working adult in a profession in demand. I learned to never accept everything the experts said. There is so much possibility for development over time. That said, some children do not have the same experience, and more often than not, the school system has to deal with more failures than successes, no matter how much parent and child persevere.

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    1. That’s awesome about your daughter. Yes, other children do not have the same successes as your daughter and Ian. They won’t go to college or get typical jobs. But they also improve in their own ways, if given the right opportunities. Their successes might mean learning to express themselves better or managing their OCDs better. Success can come in many different forms.

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  2. Ian has a lot of talents and I think you’ve made a big difference, too, on increasing his likelihood of living a good life.
    This was very nice to read.

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  3. Yay Ian! I agree – brains heal/grow/evolve. Early intervention is key.
    At an 8th grade 504 meeting, a teacher told me that it was perfectly fine if E went to community college. I almost crawled across the table and throttled her. The school psychologist, less than 3 weeks from retirement, looked like she was stoned the whole time.
    This summer, while I was in NY sitting by my mom’s hospital bed and/or trying to keep her from falling again, E was home studying calculus. When he went back to school in fall, he asked the AP Calc B/C teacher if he could take the final for the qualifying course so he could switch into AP Calc B/C. She said no. I went ballistic, they let him take the test, and he passed, He just got his 1st quarter grade in AP Calc B/C: a 99. (OK, so his English grade started with a 6; I’ll enjoy the wins.)

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