Things feel entirely out of whack around here. This week is the last crunch to make the kitchen habitable. Countertops are due to arrive any minute. The backsplash goes in this afternoon. Then plumbing and electric. The workers are pounding in the molding just a few feet away, as I type away at my computer which has been relocated to the bedroom.
Chaos just twelve feet away has become the new normal. After feeling cramped in our basement and bedroom spaces for a few weeks, now it’s okay. It would be quite easy to downsize to a two bedroom apartment, when Ian finishes school.
Tomorrow, I’m heading down to Newark to do another round of interviews. I spent most of yesterday clearing things with a new editor and getting the schedule for the day. The opportunity came up, so I jumped. Unfortunately, it was also the same day as Ian’s IEP, which couldn’t be rescheduled without inconveniencing a dozen people. So, Steve took the day off from work, which inconvenienced his people, and has been given a laundry list of issues to discuss. Steve has new responsibilities at his job, so he’s been working too hard.
We’re in the midst of trying to craft a long term plan for Ian. It’s complicated and requires lawyers and money and research. I’ve started attending evening talks on the subject. We’ll take away all his rights when he turns 18. This is quite complicated when the person is highly intelligent and verbal, but does not have the social-emotional ability to care for themselves. We’ve already created a special needs trust for him. He can’t have a cent to his name when he turns 18, so he can collect social security and be eligible for various government programs. He’s excellent at computer programming — his teacher says that he’s gifted – but he would have trouble in a typical workplace. We think. We don’t know. We are planning for the best and worst outcomes.
Anyway, the school district is semi-responsible for helping us make that transition, so that’s one of the things that Steve will have to discuss with the district tomorrow.
And somehow, Ian’s after-school activities have multiplied like bunnies. He does two activities every day after school — speech, swim, Kumon, drums, keyboard. He love-hates all those activities. He complains about them, but when we stop one, he tells me that he misses his teacher, which kills me, so I sign him up for more. We’re paying nearly $1,000 per month on after school activities. And I spend two hours every day reading books or answering e-mail in the hallway outside of all these activities.
In the midst of this tumultuous home, both Steve and I are trying to pretend that we’re normal. Just like other people. Who have nothing to worry about except work and golf on the weekends. It takes a lot of work to cover up for the fact that our lives are not normal. Sure, the workers will leave in a couple of weeks and I’ll vacuum up all the clouds of dust, but we have an added level of chaos that will never leave and is very hard to explain to people.