Solo

After three days with no responses from Jonah to my calls and texts, I was getting a little cross. Once we got him on the line this weekend, it was hard to get really mad at him though, because he was so, so, so happy.

He was around people! In real classrooms! Playing soccer! On campus with his girlfriend! At first, he was a little shy about joining in the social events at the fraternity, because he’s been so isolated for two years, and most of his friends graduated last June. But he pushed himself and had a great time. He hadn’t call us, he explained, because he’s been so super busy between classes and social life. God, I’m just so happy for him.

Ian, on the other hand, isn’t busy enough. I managed to squeeze out two more years of public school education for him, so he can try to repair his social skills. He’s in a program, located in a windowless basement (no ventilation in a pandemic. ugh.) in the downtown area for kids with IEPs that aren’t ready to graduate. Theoretically, he’ll spend the morning in the program learning independent living skills and participating in social skill groups. In the afternoon, he should be in jobs and internships in the community with a job coach. It’s a new program that only has been open for two half days, so it’s too early to say how it’s working out.

In general, I’m a huge fan of these types of programs and think that they should be expanded to include more kids and more services. Too many kids are not prepared for work or higher education or job training programs after high school. Programs like this one, which are located right in local communities, can be beneficial not just for the individuals, but the entire community.

If it works out for Ian, I’ll be happy. But I have some concerns. I think he’s the highest functioning kid in there. We’ll have a meeting in 30 days to see how things are working out.

And then I signed him for a class at the community college, too, so he can get more math and computer skills. Ian’s social skills aren’t ready for full time college attendance, so I signed him up for an online async math class. The class is too easy for him and still keeps him isolated in his room, but I thought it would be a good way to slowly introduce him to expectations of college life.

But he’s still not busy enough. If Ian doesn’t have a full day of activity, he retreats to his computer and his mind and his lists and charts and compulsive information building on various wiki pages.

To prevent Ian from getting too isolated, I am a full time camp director. For example, his program doesn’t meet today, because of the Jewish holidays, so I created some structure for the day. He’ll watch his college lecture and finish his homework this morning. That will take an hour, so he can have free time for the rest of the morning. At noon, we’ll make lunch and then go to the college to get his student ID. Then we’ll find a theater that is playing a matinee of the latest Marvel movie. On the way back, I’ll stop in the supermarket and get food for dinner. I’ll make dinner and have it ready for Steve and Ian, so I can go to a running club at 6 pm. (I have to join lots of groups to make sure that I don’t get too isolated. Caretakers are outsiders.)

Yesterday, we all went to a museum in New York and found an Irish bar on the upper east side for a little day drinking. You know why Steve and I are always traveling and finding new things to do? Because we’re keeping Ian busy. I mean it’s not terrible. Ian’s a great kid, very high functioning, low maintenance; Also, we all love going places and doing things. But organizing our lives around the needs of slightly lonely 19-year old isn’t sustainable. (I just got off the phone with a boarding school. That’s still an option.)

Going forward, I’m going to be doing lots of driving and coordinating between different programs. There will also be many days like today, where I have to develop something out of nothing. Steve can help out as long as he’s still working from home. Can Ian get to the local community college, if Steve goes back to the office and I get a new job? Probably not.

It’s a huge bummer that one kid has full days of activity, learning, and socializing, while the other kid is upstairs right now with nothing to do.

7 thoughts on “Solo

  1. Laura wrote:

    “After three days with no responses from Jonah to my calls and texts, I was getting a little cross. Once we got him on the line this weekend, it was hard to get really mad at him though, because he was so, so, so happy

    “He was around people! In real classrooms! Playing soccer! On campus with his girlfriend!”

    Awww, he was living like a 90s college kid!

    “I just got off the phone with a boarding school. That’s still an option.”

    Good.

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  2. Glad to hear that Jonah is thriving and hope you find the right fit for Ian.

    We too hear less from elder when she’s doing well and I try to avoid freaking out when I don’t get responses (though she’s pretty good about short texts). Classes haven’t started yet — tomorrow, but they did let the new students move in with parents and walk in the gates and there are joyful pictures abundant on social media.

    HS kiddo is also doing well (though feeling the strain of actually being in school 7 hours!). He says one in person math class is worth 5+ online classes, for him.

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    1. I know a subgroup of children who love the self-paced online learning (from Beast Academy, AoPS, Kahn Academy), so it is interesting to hear my son’s take. His explanation is that it is easier to ask a question when you don’t understand, rather than going the wrong way for a long time.

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      1. bj said, “I know a subgroup of children who love the self-paced online learning (from Beast Academy, AoPS, Kahn Academy), so it is interesting to hear my son’s take. His explanation is that it is easier to ask a question when you don’t understand, rather than going the wrong way for a long time.”

        I think question-asking is more organic in a physical classroom–maybe because it’s easier to tell in a classroom if other people also didn’t get it.

        Our college student was taking an asynchronous math course this summer and we never could talk her into emailing her professor questions.

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  3. Ouch! Ian’s routine (or lack of) sounds very taxing for you. There certainly are some disabiities that involve constant “brokering” of the person’s life opportunities and/or physical well-being by a parent or other caregiver. Years back, cystic fibrosis was one. Children had to be carefully monitored and given lung-clearing thumps on the back on a regular schedule in order to keep them out of the hospital. Kids with CP had to have their limbs stretched frequently in order to keep their joints mobile. And then there is ABA, with which you are certanly familiar whether or not Ian ever recieved that type of service. I almost feel as if some people whose disabilities are not thought to be amenable to constant intervention, have it easier. The people I know with Down syndrome (there are several) get to just live their lives and if their educations or jobs are interruped as they have been during COVID, they seem able to pick up where they left off when things return to normal.

    I hope you get to a more sustainable pace in your advocating for Ian very soon!

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