On one side of my desk, I have a list of writing projects. On the other side, I have paperwork for Ian.
The writing jobs lead to paychecks and pats on the back. They lead to other opportunities to make more money and more rewards. I like that I can call attention to topics that I think are important. I get to meet interesting people and think about things.
The list of chores for Ian is just horrible, frustrating, isolating, and depressing. So, yesterday, I had a bit of a meltdown over the Ian side of the desk.
Oddly enough, the problems are coming because he’s doing really well. He keeps making more progress in all of his classes. He’s a hard worker and smart, despite his learning differences. He’s outgrown Kumon, so we need to hire a tutor to help him with Algebra 2. The work is too hard for Steve or myself to help him. He’s beyond the lessons that he’s learning in Algebra 1 at school. Meanwhile, he’s stalled out at 6th grade level for reading, so I’m trying to get the school district to pay for his reading tutor.
Schools typically give up on special ed kids after middle school. They plop them in rooms for the day with lots of wasted time and no accountability. Or they farm them out to poorly supported job training programs, where they learn to stock shelves at Rite-Aid. I’m not letting that happen to my kid, and it’s causing problems. So, there are meetings, tense e-mail exchanges, and speeches before the school board.
He’s going to graduate from high school in two years and I have NO IDEA what’s going to happen to him. He’s too high functioning for the Rite-Aid stocking jobs, but he might not have the social-emotional maturity to navigate a college campus or the reading ability to pass the liberal arts classes.
We’re putting all our chips on his computing ability, so we’re spending thousands on a computer camp this summer. But he’ll need a supportive workplace to accommodate his quirks, and I have no idea of whether or not those places exist for people like Ian.
Meanwhile, he’s turning 17 this April, which means that the clock starts ticking to get him qualified for state and federal disability programs. I am not sure if he’ll qualify for those programs. He might be too high functioning. Still, I have to try, so that means mountains of paperwork and a $5K lawyer. Seriously, the paperwork is so complicated that everybody has to hire a $5K lawyer with a speciality in this area to complete the paperwork and handle things with the court system.
I have some major opportunities on my work side of the desk. I have no idea how I’m going to manage both sides of the desk this year. Steve will help me out with some of it, over the weekends, but he can’t go to court with me to get guardianship of Ian or attend yet another IEP meeting or drop everything to pick up Ian from school when there’s a snow day and the bus doesn’t show up. He has to be in his office downtown.
Sure, it’s a lot of work parenting any teenager. Getting Jonah through high school without getting tangled up with his friend who freelanced as a pot dealer was a huge task. We spent lots of time at the sideline of cross country races and on college tours. I yelled at him to get out of bed for school every morning. I had to drive him in the middle of the day to take his drivers test. Even though all those jobs were time-consuming and even frustrating, I knew what the rules were and what the end goal was.
Ian’s never going to get a drivers license (he doesn’t have the social skills to navigate a four-way stop sign). He’s not going to make the varsity track team. He’s not going to the prom. Most importantly, he’s not going away to a four-year college, and the other options all suck.
All I see in the future for him (and me) is endless paperwork for badly run services that may not be appropriate and days at home without any education or work or companionship. I’m scared shitless.
14 thoughts on “Paperwork Hell”
Article about new hiring practices here.
I believe NPR had a piece about this a few months ago as well.
You really should talk with my other Jersey friend whose daughter is in a similar situation, but is now 20 and has been working for a few years. There are definitely challenges, but they’re all making it work, and her daughter is happy. And my friend and her husband both work full-time, and my friend works for Salesforce and has a mix of working at home and traveling across the country for work-related stuff.
E just passed his road test, though he says he almost hit a pedestrian (but in MA, that’s probably not a crime https://www.wcvb.com/article/music-jambulance/26363563) (that was my tenant’s brother who died, btw). Now I have to make calls about insurance and make sure he goes to RMV to get his license and a whole lot of other stuff that my husband can’t do because he’s only in his second week at a new job. Oh, and I also have to drive to NY this weekend so I can take my mom to get triple bypass surgery on Monday and I guess stay with her dog so he doesn’t get lonely. Also, I am giving my last final exam of the term right now, so, grading. Upload Valium immediately please.
That’s a lot!
For whatever it’s worth, Laura, the way you and your family have rallied around Ian and fought for his every need over the years, as you have documented it here, has been an example and an inspiration to many. I know it’s been an education to me. It took us a year of phone calls and faxes and forms before our foster daughter was finally accepted to the KanCare program which enabled us to get her therapy she needed, yet what we did pale beside your efforts on Ian’s behalf. His future won’t be solely what you fear; you work and activism and writing have certain of that.
You might reach out to Ogged, of Unfogged fame. He’s a programmer, and I think he has mentioned that either his company or companies he knows of/works with have hired people with backgrounds like Ian’s. If you don’t have direct contacts for him, occasional commenter Elizardbreath certainly does.
Laura, all of your readers really admire you for the effort you have put into Ian’s education and upbringing, especially those of us who have raised children without such specialized problems (the ordinary problems of childhood are bad enough). That said, I think, based both on your reports over the years and my own limited experience with neuroatypical individuals, that you might be underestimating Ian’s capacity to manage adult life more or less on his own.
Surely if companies outsource computer-related work to India, there will be a way for Ian to work from home in the U.S. I also wonder if he could take computer courses at a 4-year college without being a full-time degree-seeking student. (And maybe community colleges would have good programs – I took a BASIC class back in the day. Yes, that day was a long time ago.) If these summer classes work out, maybe you can make contact with a university prof in your region who might be willing to let him take or audit classes. Shoot, if you lived in rural Illinois I could hook you up with some compsci faculty I know.
Sorry this is all so stressful.
Hey all. Thanks for the kind words. Yes, I hope that there will be more opportunities for my kid in a couple of years when he graduates. I’ve read those articles about companies seeking out people with my kid’s talent pool, but I’m not quite sure how to prepare him adequately to get those jobs. But I’m talking with people to get answers.
Yesterday, after I wrote this post, I spoke with a social worker about what state and federal programs and all that. She said that Ian’s high IQ is going to disqualify him for most programs. I probably won’t be able to gain full guardianship. She also suggested that we go back to the Yale Child Study Team to get help. So, that’s my first step.
I’m guessing you’ve seen this article already, but if not, the NYTimes has a profile of Auticon, a tech company that employs people with autism.
My organization, a large non-profit with no specific connection to this issue that I’m aware of, is offering some training to managers on working with neurodiverse employees, so the idea is spreading.
I’m sorry it is so difficult and involves so much paperwork. That sounds really hard. But thank you for writing about it all. I’ve learned a lot and have paid more attention to my own local school board meetings regarding IEPs/special education programming. (I’m already a school board junkie – but most of my lobbying has been for equity/poverty/etc.)
Good luck with the next steps. He sounds like a really amazing kid and the optimistic side of me hopes a path will emerge that no one has even thought of yet. I cling to a not-very-realistic belief that the backlash to Trump will involve our country becoming more accepting of differences and inclusive for all.
George Mason has a program where you pay extra for them to heavily support students with ASD. Other places may too?
“George Mason has a program where you pay extra for them to heavily support students with ASD. Other places may too?”
I’ve also seen suggestions for appropriate support for ADHD kids (in one of Hallowell’s books?). Some of that advice/infrastructure is probably adaptable for an ASD kid.
I should have been more specific.
Hallowell encourages a pretty heavy-handed, helicopter-ish approach to dealing with ADHD kids in college. ADHD kids need A LOT of support at college, because they have something like a 5% college graduation rate (compared to 35% for the general public).
Laura’s probably already looked at college special needs support offices. I forget the name, but there should be an office that deals with stuff like accommodations (extra time for tests, quiet room, note taking services, etc.). There might also be an article or two in that, come to think of it.
Yes, our college and I’m fairly sure most colleges have a disability resource office that tests or looks at results of tests from students with a variety of different kinds of disabilities and mandates appropriate accommodations for them. This information is passed along to professors and we work with the student and the office if necessary. Sometimes it’s very straightforward – they say the student gets double time on any exam and needs to take at their office (sometimes because it’s quieter/calmer there, sometimes because they need assistance reading the exam, etc.) Other times it’s more complicated – the student can’t take notes for physical or other reasons, and the professor needs to identify another student as notetaker or otherwise provide help to them; the student has to miss more classes than usual because of treatment for illness; etc.
We are required to put a statement on every syllabus from this office and they take it very seriously. Once someone screwed up in their dealings with a pregnant student and the entire faculty had to do a workshop on how to handle pregnancy.
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