Celebrating Victories and Then Continuing The Work

The Latest Installment on Our Great Leap

Jun 13, 2023

Sometimes, this newsletter is old school blogging with personal stories and little anecdotes. Other times, I’ve written with bullet points and specific advice — advocacy journalism. Today, I’ve got my blogging hat on. I’ll share how things are going with Ian’s Great Leap from Autism to Adulthood.

Let’s back up a second.

I started preparing Ian to take the next step into adulthood, right when he finished high school about two years ago. I thought I had a plan — the public school transition program and a few classes at the local community college.

I put exactly twenty seconds of thought into that decision. At that point, I hadn’t done much research. The school offered no guidance. With everything still closed down for Covid, there were few social services even open at that time.

For many reasons, that initial plan turned out to be inadequate, so I spent a year researching alternative plans, working with an attorney, and also started the process of enrolling Ian in the federal and state disability bureaucracies. It was a lot. It was seriously a full time job for nearly two years.

But I did it. I got Ian in a new program, which supports him at the local community college, helps with his social skills, and teaches him job skills. He got As and Bs in two challenging computer classes last semester. We supplement this program with tutoring and therapy in the evening.

Eventually, I finished all the government paperwork. Ian now gets a little check from the federal government every month, which he uses to buy his clothes at Old Navy and burritos at the taco joint in town. And in April, on his 21st birthday, he was formally enrolled in the state disability bureaucracy. That was when I heard for the first time about the dollar amount assigned to him and that I can use those funds to pay myself for my caretaking responsibilities.

I am still stunned that I spent two years filling out paperwork with almost no clue of the end goal. A social worker that I trust urged me to fill out the forms, but she really didn’t explain why. Nobody wants to be held responsible in case the state decides for some random reason to deny payments to a family. It happens.

Ian’s disability funds are significant enough that I formally resigned from my freelance journalism work, and will concentrate on helping help him and doing my advocacy work.

I thought I was done with the paperwork, but I’m not. Two months after Ian first qualified for services, I’m still filling out paperwork. We had to create an adult version of an IEP, and get his social skills class funded by the state. Then we had to work through yet another third party to set up ourselves up to become service providers for our son — more forms, drug test, background test, and fingerprinting. I’m hoping that we’ll be in the system by July.

Every day, I learn something new. Last week, I learned that almost all of the people who coordinate these disability services are parents of disabled adults. The state pays them to administer their programs. It makes sense. These parents know all the terminology and know the local services. Because caretaking is so intense, these parents are almost unemployable in traditional jobs. So, it’s a win-win situation.

I get a lot of phone calls from less-informed parents in town. They hear of me from a friend of a friend and are desperate by the time they call my house. They have no idea what to do with their 18+ children. Problems that were swept under the rug — poor executive function skills, poor social-emotional skills, social awkwardness — interfere with the next stage of adulthood. Some finish college and then play video games for years, because they can’t make that Great Leap.

A friend of mine is disgusted by those ill-informed parents. She said those parents are too privileged to bother themselves with all the research and legwork that we did. But I’m a pushover, so I talk to them for an hour.