Grownup Stuff

The Son of Never Stops Eating turned 15 last week.  To celebrate, we went to the "all you can eat place", aka the local Chinese buffet, and he got a Lego kit he'd been eyeballing at Target.  He also got a meeting with his Mom, his teacher, and one of the school district's transition planners to talk about what he wanted to do after high school.  The festivities and merriment never end at the Household of No.

A surprise for Mom:  The Son of Never Stops Eating was all about getting a driver's license.  Not to worry, neighbors; if that day comes, I have "Student Driver" magnets for our vehicles.

Much of the meeting centered around working- what kind of work he would like and do well at, whether he would be working full time or part time, where he might want to work (Target and Petco were mentioned), how he was going to get there (that's how the driver's license issue came up), and how he would manage his money.  Eventually, the conversation came around to maintaining his eligibility for Medicaid through SSI.

Here's the thing about special needs planning: It is extremely complicated. Half the time, I'm not even sure I'm getting it right.  People, the Mom of No included, pay other people specifically for assistance in navigating through the maze of state and federal programs. You almost have to; a single mistake could destroy even the most carefully calibrated plan.  Because I don't know if the Son of Never Stops Eating will be able to hold a job that pays well enough to include health insurance benefits, maintaining eligibility for Medicaid is the center of the web that we are carefully weaving, strand by strand, in the hopes that it will be strong enough to support him for his entire life.

What struck me at this meeting, although I didn't really realize it until later, was that his future working life won't be based so much on his abilities or his desires to work (he wants a job really badly, to pay for all those Legos his mean mother won't buy him), or even on any opportunities that may present themselves.  The decisions will be based on maintaining his eligibility for health insurance.  That is, as the teenagers would say, messed up.

The assumption of competence is, in planning for a special needs child's adult life, an extremely risky proposition.

The second I begin assuming competence- the ability to make life choices, to get married, to hold down a full time job, to navigate daily life as an adult without your mom nagging you to do boring stuff like brushing your teeth or doing your laundry, is the moment I assume a risk that the already fragile safety net will tear into so many fragments.  As a parent, I don't want to assume incompetence.  I want my soon-to-be adult child to make as many choices as he can for himself, to find fulfilling work, to live independently, but planning for competence within the constraints of what the system allows is like walking on a tightrope over a pit full of very hungry piranha.

It doesn't help that the conversations that our society really needs to be having- the ones that would make a huge difference, especially the one about the issue that dare not speak its name (that would be health care) are just not possible at this time.  Conversations I've had with people about my son's future often go like this: Oh, your son is great, kids with autism are precious, God is watching out for them, what a wonderful mother you are.  These days the contrasting unspoken message is getting louder and louder: Wow, that sucks for you, but it's not really my problem. Let's not commit any actual resources or demand that our politicians change anything. 

Good luck, you're mostly on your own.

I left the meeting feeling optimistic and frustrated all at the same time.  Later, after he got home from school, the Son of Never Stops Eating was hanging out on the sofa, watching The Simpsons and working on his latest Lego project.  When I walked into the living room, I asked him what he'd thought of the meeting.

Mom, he told me, being a grownup is going to be hard work.  He didn't sound dismayed or nervous; he seemed more in awe of the entire proceeding.

Yes, kid, being a grownup is definitely going to be hard work. I'm not sure either of us really know what we're in for yet.