Valuing Essential Time

Changing Time for Work Responsibilities, Keeping Track of Ian Chores, and Not Thinking About Future Time

It’s been nearly a month since I last updated this newsletter. The holidays and freelance work took priority for a little while. And now I have another excuse for not writing that Pulitzer Prize worthy newsletter. 

A new project is going to occupy most of my time for the next two months. I’ll still write about autism and disability and school and transitions every Wednesday, but I won’t write a proper essay with a BIG POINT. That just takes up too much time and brain power. Instead, I’ll fill you in with what we’re doing with Ian that week and what I’ve learned about disability stuff. One draft, one hour. 

I hope you stick around, but this newsletter will be very humble indeed until I tackle the big thingie. 

So, what are we up to here? 

Well, I started a log of all the time that I spend doing “Ian Stuff”. “Ian Stuff” is defined as: keeping track of his after-school activities, researching after-school activities, getting him to and from after-school activities, anything medical (therapy, EEGs, meds, schedule, billing), all the paperwork to get him enrolled in the state system, answering questions of other autism moms, networking with moms that know more than I do, managing the disability Facebook page, and probably a dozen other things that I haven’t thought about it. 

Why am I logging my “Ian Stuff” time? I’m still an academic, even though I haven’t been in front of a lecture hall in more than ten years. And academics like to count things. (So do autistic people, but let’s not think about that too much.) 

As I’m keeping the log, I’m rounding to the nearest half an hour like a lawyer. But I’m still missing a lot. There’s no way of quantifying my status of “always being available” to take calls from school, doctors, and therapists. 

For example, Ian’s neurologist just called. She was responding to a call that I had made two weeks ago, asking for guidance on a form for the state. If I wasn’t home, we would have gone back and forth playing phone tag for weeks to get answers. 

The past two weeks have been very intensive with caretaking chores, because after jumping over the minor hoops with the state and attending hours of instructional hours this fall, it was finally time for the dreaded NJ CAT.

The NJ CAT is the state’s disability sorting system, a 35-page form where parents describe their young adult-child’s disabilities. Can she walk independently? Does she eat food without assistance? Can she buy an item in a store? Can she count money? Can she understand a simple story? 

As I learned from many, many webinars, parents have to describe their child on their worst day. One guy told me to imagine my son alone in a hotel room for a week. What would he look like at the end of the week? Would he even be alive? It goes against every rule of nature to say bad things about your child, but that’s what we have to do. 

Why be so negative? Well, every “no” answer adds up to a functioning level or a tier A - E. The least disabled people are classified as an “A” and get a yearly budget of $23,000 per year. The most disabled — people who need 24/7 medical care and must live in a full time residential setting — are classified as an “E” and get a yearly budget of about $250,000. More disabiled = more money. 

With epilepsy and autism, my son will likely be classified as a B or a C, I was told. It’s rather jarring to hear my kid reduced to a single letter, but that’s how bureaucracies work. 

Because this form makes definitive decisions about money, and is, at the same, really badly written and subjective, parents need a great deal of support to complete it. A month before we were scheduled to fill out the form, I sat down at the dining room table and filled out the form imagining my son on his worst day. 

Two weeks later, I had an hour-long Zoom call with our county social worker who went over every answer with me and convinced me to downgrade my answers even more. 

This Monday, I finally did the real thing on another Zoom call. A woman from the state asked me every question on that 35-page quesionaire about toileting skills and epileptic seizures. She answered some of my broader questions and said hello to Ian. Two more hours. 

One major deficit with my time log is that there isn’t a place for recovery time. After I do one of these awful disability things, like IEPS and the NJCAT, I need a reward and downtime afterwards. A glass of wine and some Wordle. I cannot simply return to work after something emotional like this. 

The state lady said that I will learn about tiers and money in a month. When he turns 21 in April, the next puzzle will be how to spend that money. I’m concerned that Ian will be too high functioning for the existing programs, which are aimed at people with intellectual disabilities. The system has been slow to recognize the needs of people with autism, who can pass Calculus but wouldn’t get hired by McDonald’s.  

Worst case scenario: I spent a year filling out forms and there’s no place to spend the money, so Ian ends up on the sofa playing video games. 

In all my discussions with workers from the state and local organizations, I keep asking them about outcomes. What will Ian’s life look like when school ends, if he can’t handle college? What are the expectations from the state about my time commitment? Will I be expected to be an unpaid employee of the state as I create and implement a program for him? What’s my timelog going to look like in one year? 

Nobody will give me a straight answer to those questions, which is setting off all sorts of alarm bells. But those fears are balanced out by watching my son continue to grow and appreciating the coolness of our lives at this minute. Our “now” is great, so I refuse to worry about the “then.” 

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LINKS

A new test for autism hopes to help doctors diagnose before symptoms show.

We decided to be anti-social this New Year’s Eve. Steve, Ian, and I went into the city for a lovely dinner and then retired early. Pictures here and here. Last weekend, we hiked around New Paltz, NY for the day and made homemade pasta on Sunday.

From my main newsletter:

Dropping Out and Finding Life