I’m writing a book. My goal is have a finished rough draft by the end of June. This is an excerpt from Chapter One. No paywall this week, but please subscribe to support my work.

What I Did

Years ago at a PTA meeting, a knowledgeable parent confided that we should never, ever let our kids graduate from high school. At that time, I was focused on middle school problems. My brain was not ready to process this advanced information, but I tucked away that little tidbit for future use.  

When I could see danger looming in the distance, around half way through my son’s senior year, I emailed my case manager and said that Ian shouldn’t graduate. She agreed, but the director of special education fought me on it. She said that he had completed his high school requirements. I had to have an in-person meeting with her, where she could hear the determination in my voice as I listed all his deficiencies. She eventually agreed and said they would find a place for him at the new 18-21 transition program in town.

That summer, at the urging of an attorney, we requested extensive testing of Ian by the school district and outside professionals to get a better picture of his academic, social, behavioral, and functional levels. Everybody said that Ian was smart, but he also had some rather large problems. He was intolerant, had no social filter, couldn’t maintain long conversations, had no friends, had verbal tics, couldn’t make eye contract, and more. 

These massive deficits had been camouflaged by an attentive one-on-one aide in his high school classes and had never been addressed in his IEPs. However, Ian couldn’t progress towards any meaningful future without improving those skills.

So, we created goals around these deficits in his IEP. The town’s Transition Program promised to help develop those skills. We also hired outside support —  a therapist to help him understand emotions, a tutor to work on reading comprehension, and a speech therapist who ran a social skill group for young adults. His needs were so great that his education had to extend beyond a typical school day.

Unfortunately, the town’s 18-21 transition program wasn’t a good fit for Ian. It was the first year of a brand new program without proper staffing or good facilities. For the first time in our public school experience, I hired a lawyer. Preparing the legal documents for that case involved nine months of work digging through old emails showing evidence of long standing neglect in his education. I had to take him for a week’s worth of testing at a private agency. I woke up in the middle of the night in a cold sweat over spending $15,000 on a lawyer rather than private tutors and therapists.

After a meeting with the lawyers, the district agreed to send him to a private transition program, which was more established and was focused on students that were more similar to Ian. They drove him to the local community college three days a week and gave him an internship that he liked. He stayed there for two years.

While I managed the legal fight and searched for a new placement, I also set up all the legal matters — the will, trust, and guardianship. I drained his bank account and started the three-year process for gaining disability support. I taught him how to be a college student and hired outside professionals to grind out the rough edges on his autistic behaviors.

Read more at The Great Leap, my disability newsletter