The Enemy, The Couch
The "Adult-Kid On My Sofa" is One of My Disability Nightmares
I don’t think I was born a neurotic person. Rather, I believe that writing a 200-page dissertation, while making a baby and working, made me develop superhuman discipline skills. I wouldn’t be first person to say that their PhD dissertations made them crazy.
Years later, I still live my life with military precision. Some might call my methods “rigid” (Hello, Jonah), but I choose to think of my systems as highly effective. Lists, color coded calendars, and strict rules for life keep me moving ahead on my various personal and career goals.
Raising kids is definitely a task that involves goals and lists, especially in our crazy suburban world of sports schedules and college applications. Add a disability onto that kid, and the job gets even crazier — IEP meetings, therapy schedule, doctor appointments, and long term planning. It’s a lot. Raising a kid with a disability sometimes requires the skills of Fortune 500 executive secretary.
For the past twenty years or so, I’ve had basically the same executive secretary job of attending meetings and driving to therapy, balanced with time in school when I could maintain gainful employment. When Ian graduates from his final year of public school in June, the job will change. I’m still going to have to help him manage his life, but without any help from a school district. We’re going to be on our own. Help!
After June, I expect that Ian’s day will involve some work, some college, and some organized social groups. I’m hoping that it will all weave together seamlessly with Ubers and a master calendar. It’s all very stressful, because there are so many unknowns: Where will he work? Can he manage the more advanced college classes? How much will all these Ubers cost?
The big question is really: What happens if this plan fails? What if he is unemployable, like 80% of other people with autism? What happens when he finishes taking all the easy classes at the community college? What if he has nothing to do?
What if he sits on my sofa all day?
Honestly, he could sit on the sofa all day. I turned out to be really good at filling in all that disability paperwork. Ian doesn’t have to work. With all that money multiplying in excellent mutual funds, he’ll have a very nice nest egg in the future.
But I want him to work. He wants to work. Work is so important to a person’s mental health and well being, that we would be happy for him to lose his disability safety net in exchange for a part-time job in an appliance super store.
So, I have no idea how this is going to work out, and that uncertainty is death to the military precision calendar. I’m driving his teachers crazy with monthly meetings to get progress reports. I helped him fill in an application for summer school at an autism college, because I want him to experience dorm life before he settles into the community college; hopefully, he’ll be accepted. I’m calling friends of friends of friends, who might have some good ideas. Like I said, neurotic.
I like guarantees and, with Ian, I have none. Though I think that’s true of all kids - typical or autistic. Once they are in their 20s, our kids have to do their own things. And they have fail a lot. I’m still failing, so they have to do that, too. Maybe Ian’s failures will involve some time on the sofa, and I have to learn to accept that possibility and embrace the messiness of adulthood. It’s not going to be easy.
LINKS
Picture: Above: the dissertation year. Below: Working on college applications
From the main newsletter:
Updates on the new venture: The Autism College Connection. I turned this newsletter into a webinar! Last week, I told a Zoom room full of parents that when Ian finished high school three years ago, he wasn’t ready for life. So, I kept him in public schools and researched the hell out of all the options. Then I told them about it for an hour. It went great. I’m going to do it again in March. (Sign up for the business newsletter, too!)
I highly recommend starting a newsletter when you begin a big challenge. It might turned into a book. Ya never know.
In two weeks, we’ll have a Jersey-based college consultant discuss her insights on helping neurodivergent students in college.
7 strategies to help gifted autistic students succeed in college
“The Good Doctor” has brought significant visibility to autism, with the show attracting more than 6 million viewers during its 2022-2023 season alone. And, a 2019 study found that watching even a single episode of the show yielded more accurate and positive knowledge about autism than a college lecture on the topic."
Interviews with students at Landmark College. They talk about why they enjoy being in a college that understands them. It's lovely.
We saw the final performance of “How To Dance in Ohio,” a Broadway play about autistic young adults and acted by autistic young adults. I hope that it returns.
Family pictures: The Broadway play, Me and the boys in NYC.
I have three kids with autism. My 24 yo son is in college. So is his 14 yo sister. They have a mere two years apart in their education. I was told both would amount to nothing. The opposite has occurred.
Boys mature more slowly than girls but our children are not less than for it. They take in many times the inputs of their peers. They have more to offer but a slower or different march to their full potential to realize it.
I do not fear my children sleeping on my couch. I expect that of entrepreneurs. In the coming decade everyone will have to invent their future. I think my children are more prepared for it because together we invented their education.
My parents parented me the in the manner similar to what you have described.
The most healing thing I ever did was let them go. I can not forgive the torture I was put through because they were afraid I would end up sleeping on their couch after I turned 18.