What I Did When My Son Wasn't Ready For Life

An Excerpt of Chapter One

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.

Webinars, Sherpas, and More

How did I learn how to do all that stuff? Schools don’t tell parents about these matters. I was on my own. So, I did what I always do when I hit a roadblock — I researched the hell out it. 

I attended tons and tons of free webinars offered by law firms, state agencies, and nonprofit organizations. Sometimes I attended as many as three webinars per week. I would finish cooking dinner for the family, walk down stairs with my dinner plate and a glass of wine, and let the information flow over me. 

As a side benefit of COVID, these presentations are almost always on Zoom in the evening or around lunchtime. While we are missing out on the personal interactions with other parents and experts, Zoom meetings definitely increases participation and has increased the frequency of these events. For some parents who are too burdened to leave their home easily, Zoom meetings have been a blessing.

At first, I had to just get used to the jargon, like DDD, SSI, SSDI, PPP, third party trusts, and more. I couldn’t even understand the rest of their presentation, until I got a handle on those basics. Even after I learned the terms, the presentations didn’t tell me the whole story.

The lawyers made the information purposely complicated, because they wanted you to hire them for tens of thousands of dollars. The nonprofit webinars were vague, ill informed, and focused on kids with intellectual disabilities. The state agency presentations didn’t tell us who qualified for services and what the services would be like. That seems like pretty important information, doesn’t it? No, instead they bored us with lectures about how we should talk to our children about their future. Nobody had good information about college, employment, or housing.

While those webinars were not fantastic, they did introduce me to the key terms for the disability benefits. Usually, I picked up one new fact per event that made it worth the time. I still attend those meetings.

In addition to webinars, I was lucky enough to meet a few key people, who became my sherpas for navigating the disability system. One great social worker employed by the county walked me through the paperwork for the state and showed me how to fill out the forms in the right way. Think about your kid on his worst day. If you weren’t there, what would happen to him? 

Not everybody was helpful. A few times, I trusted the wrong people, giving my money away to bad actors. Our first attorney who set up Ian’s special needs trust set it up, so that any money left in his trust after his death would get gobbled up by the state to cover their expenditures on him. We paid a second lawyer $5,000 to fix that trust, plus handle other paperwork. 

The second lawyer was great. He was the first person to tell me about the fancy private transition schools. He hinted that I could sue our school district to get them to pay for the tuition for this schools. But he was more accustomed to working with clients with deeper pockets and advised me to hire a private consultant for $10,000 to learn the names of fancy schools and help with the admission process. A private consultant was not in budget. 

A friend told me about another private consultant, who only charged $200 an hour. I sent her my son’s files, and we had a one-hour conversation, where she gave me the name of three programs that I could have found with a simple google search. She sent me a bill for $800. I guess it took her three hours to read my son’s IEPs and evaluations. 

Special Schools

Through those costly conversations, I gradually learned about the alternate world for rich parents with special needs kids. Six-figure special schools with dorms and trips to Europe! Fully appointed kitchens for cooking lessons! Coffee shops and little shops where the kids could receive job training! There are some truly wonderful little schools out there for kids with disabilities. 

While those programs were not in my budget, just learning about these special schools was a revelation. Why didn’t I know about this before? These schools also gave me a picture of what should be available for all kids. All young adults should have opportunities to continue learning and to grow in their independence and be taught by smart people with passion and expertise. 

I traveled around the Northeast checking out some residential programs — if we found the perfect for Ian, we would have figured out the finances. While they were amazing, they weren’t right for Ian at that time. One program housed adults with severe disabilities, who frightened Ian. Another program didn’t offer enough oversight. Besides we were still dealing with his poorly regulated epilepsy. We need him at home.

Community College Training

With a transition program, private therapists, and tutors working on Ian’s social skills, behaviors, and independent living skills, I taught him how to transition to college. 

The gap between high school and college is huge. College is tough for most kids with only 40 percent finishing their degrees, but for kids with autism, college can be even more challenging. There are no IEPs or dedicated support staff at college. There’s a whole new vocabulary to learn. What’s a syllabus, the Bursars Office, the admissions department? There are new social norms, like the proper way to address a professor and how to ask for help. There’s new technology, new ways to sign up for classes, and more. 

While I might not have known about private transition schools or the disability support system, I was very familiar with colleges. So, I provided that training for Ian. We started slowly with just one online class to reduce the social skill pressures. We chose a math class that he had already aced in high school, so he had few academic pressures. That first semester, I focused on learning the new vocabulary, routines, and norms. 

I signed him up for test prep at Sylvan, so he could pass the entrance exam for the community college. Did you know that community colleges are NOT test optional? We’ll talk about that more in Chapter X.

While he was learning that he shouldn’t write an email to his professor in all caps, I learned, too. Community colleges have much fewer resources than the four-year colleges, where I had worked at for many years; sometimes it takes multiple phone calls to get things done. By accompanying Ian to the disability office at the college, I saw how the system really works. I walked into the offices and met the college administrators. I learned how to hack the community college system to work for him.