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.