It's not the least bit surprising to learn that no parents have crystal balls. Some of us think we can guide and steer our kids toward a given destination, but others of us know that perhaps all we can do is model, provide opportunities, ask and answer questions, and otherwise try to have some slight impact on who our kids are and who they grow up to be. But we long ago learned that we have far less control and influence than we think we do. Now layer on to that having a child with significant special needs, and control of any kind sometimes just seems like a cruel joke.
Given the absence of an eternity elixir, parenting without a long-term net for a child with special needs is a special form of terrifying. I spend a lot of time trying to ignore the terror, because I know how utterly paralyzing it can be. Instead, I focus on the little victories in my son's life, and try to push off the bigger questions to some indeterminate point in the future.
Enter my daughter, who doesn't believe in delayed, well, anything. So she thought nothing of telling my husband recently that she thought we were failing her brother. He should NOT be snuggling in your bed first thing in the morning and last thing at night. To which my mind and heart reply that I know that's probably true, but I love that he loves us, that he needs that contact, that affection matters to him. And where else is he going to get it, if not at home? It's not like he has friends, or a girlfriend. Yes, he's 25, and it will be utterly weird if he's still doing this at 30 or 40, but for now...
And according to my daughter the oracle, we haven't done or thought enough about his future in terms of housing. Which just goes to show how little offspring actually know about how parents spend their mental/emotional/actual time. I've chased down every idea I've come across, attended more dull and discouraging symposia than I can shake a stick at, and asked everyone I think might know what options are out there, and why aren't I finding them? Short answer to that last question: because they don't exist.
A year and change ago, we had plans to bring our son for a trial stay at a special needs kibbutz in Israel, a magical place where he could live and work and thrive and grow. And be among peers, and dogs, and horses, and other animals. And swim, and help harvest organic vegetables, and work in a winery, perhaps. But other urgent matters intervened, and then COVID hit. And since then, I've thought a lot about having a child of mine live thousands of miles away--not only from my husband and me, but from his siblings. And while my Navy-bound son is unlikely to be a living-in resource for his brother (for a host of reasons), my daughter might be. And more important, likely will want to be.
So while I'll continue to try to look for life options for my son outside of our home, where he can live, work, and otherwise thrive, I'm not sure I'll ever find them. That leaves me with a pile of anxiety and worry that I'll likely never get out from under. But my daughter's critique notwithstanding, at least I'll have my morning and evening snuggle sessions to look forward to.
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