A quick glance at the calendar tells me that this year has, so far, been equal parts good and disastrous. We have made significant headway in all the administrative areas of J’s life while making catastrophic stumbles in the opposite direction extended family-wise. If we were alone when the clock chimed the midnight hour and propelled into 2013, things have not improved one whit since then, nor does it look like they will any time in the foreseeable future.
Crisis after crisis, because that and money are what make the world go ’round, we keep being thrust deeper into adulthood. The grown-ups in the house remain, for better or worse, their parents’ children, even when the parents have greater need of care than they ever did before. That we have to, at the same time, face the fact that the adults in our household still require our support and attention is the force that pulls in the opposite direction. Dada and I, like many other middle-aged people, find ourselves having to become more and more involved in our parents’ issues while still holding the reins of J’s issues and training TGG to take over when we’re no longer around.
We now wake up in the middle of the night thinking of the myriad catastrophes (of varying degrees of intensity) that are strewn through the family landscape: one parent moving out of the family home and all the things in that property having to be distributed, discarded, repurposed; a panic attack because if I have a heart attack and have to be taken away in the middle of the night, J might be upset and confused; the chaos that could ensue if tragedy strikes and TGG is left to be “the responsible adult” in his and his brother’s world. I don’t know you, but I’m hyperventilating.
Dada’s family is going through the process of relocating his father to a different living situation. A home that has been occupied by the same people for nearly fifty years is, more likely than not, full of mementos, items, heirlooms. Dada cannot be there physically so he participates long-distance and hopes he’s not being more of a drag than a boost to the process. I can tell it’s getting to him, just like it’s getting to his siblings. This is not easy for anyone.
If that is us, the official and anointed grown-up parties in our humble household, facing this type of situation with trepidation, what -we ask ourselves in the middle of dinners, drives to the store, folding laundry- will TGG do if he’s suddenly left high-and-dry to care for J? Our children have lived in 5 different abodes over the past fourteen years, and they’ve packed and unpacked boxes, trucks, etc. It hasn’t been their job, though…they’ve helped. They have a general idea of what it involves, but if they had to do it without us, they would be lost (at least a little.)
In light of this, we have agreed that a certain degree of spontaneity has to be removed from our processes. The books, movies and J’s personal property had been inventoried…the rest will follow soon. Our sons will have very little participation from others to help them through our absence. I have no siblings that would leap to the rescue; they haven’t leapt so far, why would they now? Not a one of them knows what ABA or ASL or PECS or Proloquo means. Not a one of them has seen J in years, and they are all steeped in the information they glean in passing from anything with the word Autism on the headline. Not a one has bothered to ask.
I have friends that, I know, my kids can count on to guide them briefly, but without a map they’ll be a little lost, too. Dada has siblings he knows will come to the rescue, but because the “boys” are adults, it’s a little harder for anyone to process that the circumstances would be complicated by other elements. We have realized that this, drumroll, is entirely up to us…
The legal guardianship process has been one foot (stumbling) in front of the other, but our steps are firmer now…we’re gathering speed and confidence. We are a little heartbroken, but we’re also more clearheaded and determined now.
We are awake now. Time to get moving!