What’s good is bad, what’s bad is good. You find out when you reach the top, you’re on the bottom.
–Bob Dylan, Idiot Wind
One part of me that has yet to recover from Nat’s trauma is my own advocate persona. My own professional views. It is bitterly ironic to me that I wrote an entire book on Autism Adulthood, (see, I still can’t resist the plug) — but now I am stumped as to what to do for Natty at almost 27. He’s living at home and we are getting used to it and enjoying it. But is that okay? Shouldn’t I be making five-year plans and then lifetime ones? But I lay awake last night trying to figure out how we were going to assure his distant future, when we’re no longer around, and I came up with nothing. I’ve taken to scoping out young adults in our lives and sizing them up as roommates for Nat. But then I think, “What’s the rush?” But then I think, “What, we are still here at Square One?” and then “But the best laid plans…” and then “Shut up Shakespeare, you didn’t have an autistic kid.”
So how, exactly, do we do this? One friend of mine says that she has plenty of money, so her plan is to buy someone as her son’s forever caregiver. Another’s plan is not to die, and mine is to become a ghost and hover in his apartment.
These are not good plans.
Meanwhile, I feel a little sheepish when people ask me to give talks about Autism Adulthood. I feel like Didn’t they get the memo? I failed Autism Adulthood! I already have to rewrite parts of that book, for God’s sake. Was I smug? Did I give myself a keinehora? But I know I took great pains to say, “for now,” and other qualifiers about Nat’s Adulthood programs. I made disclaimers — I’m not a financial planner, a special needs attorney, an expert — but I did feel comfortable in my role as a mom who’d made it.
Now I am putting my strategies to the test. I do have a couple of service-providing organizations looking out for good group home matches for my Nat but that seems like a long time in the making. I guess I have to have faith and patience that things will come together but that is not at all advice I would ever give to anyone else. Faith and patience puts the whole deal in someone else’s hands and that scares me. That is not a good plan. Other people are not as motivated as we ourselves are when it comes to our children. That is simply a rule of nature.
So my life has become a mixture of living-in-the-present, enjoying a more mature Nat, a more mature relationship with him, enjoying being able to be assured of his day-to-day good health and outlook. But there’s of course that undercurrent of anxiety, potholes in the paved road, that make me feel all jangly and uncertain.
But actually, that’s just a good description of life. No guarantees, no real certainty, and especially no rose garden unless you plant it and tend it yourself. And of course, be ready for that harsh winter kill.
And then prune your ass off and get an even better plant in the summer.