Complicated New Year’s Goals: 21 On and Off the Spectrum

Drew has 18 months left before he turns 21, and the school bus stops coming. We are unsure what will happen after that. My dad, like me, found it difficult to set goals for this year specifically because of so many variables in play at once, with three that stand out in particular.

Variable 1: A lot of this holiday season was spent trying to care for aging grandparents who do not live close by. As we approach the point where they need almost constant care, my family is scrambling to figure out what to do, where my grandparents should relocate to, and who will care for them. It is unclear now how much time my family will need to spend out of town.

Variable 2: I graduate from college in less than 6 months. While where I end up living does not have as big an impact on what Drew and the rest of my family does, it is still something they consider.

Variable 3: Drew is in a program at his school where he works at Goodwill a few days out of every week. He seems to enjoy this, and he is good at his job. He makes sure his uniform is washed and that he brings it on the right days. What he did at work has become one of the daily questions we ask him, along with asking how his days at school are. At the very least, there is a small possibility that he could keep that particular job, or his school could help him find another job after he graduates.

These are fairly normal uncertainties to have at this point, and these are things most families have to deal with at some point.

However, for us, this makes planning for Drew complicated. I would imagine that other families with special needs members would say something similar: that it is never only one problem to solve – it is all the usual puzzles of life plus one extra puzzle. Or two. Or three. Or four.

When I talked to my dad about this, he pointed me toward a TED talk given by Jane McGonigal. In it, she talks briefly about how treating real life problems like a video game can help you solve them. I was not expecting my dad to take our conversation in that direction, however everything he said came into place when he mentioned that the reason he brought up the TED talk is that “we need allies and we need resources.”

For my dad, finding allies means finding other parents, parents of deaf and/or autistic adults who can relate and be willing to help grow and develop together. This means talking to his teachers about Drew’s job prospects. Finding resources means finding a job and a location where Drew can be somewhat independent as well as a place with a deaf community so Drew has people to communicate with.

The fact that very little is certain right now does not mean that we can not be proactive about Drew’s situation, it means we have to set general goals rather than specific ones. Even if everything ends up changing, even if at the end of the year we are nowhere near where we are right now, “allies and resources” are still going to be things Drew needs going forward. And this is in no way limited to us; these are things a lot of people on the autism spectrum need right now.
That is my hope for this new year; I hope my parents and I can help find Drew more allies and more resources so that we are equipped to beat this level of life and move on to the next.


Related Articles