Tag Archives: achieving semi-independence

Transition Check-In: The Three

It hit me today that I have reached the point where I don’t always know where Nigel is – and I’m okay with that. He is in a supported living program. He’s not in college or driving. But he turns 21 in two months, and he is a walking, talking special needs success story.

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It was fourteen months ago, with no small amount of trepidation on my part and his, that Nigel was given the key to his own apartment. In his words, he has “learned a lot” since then and wisely remarks that he is still learning. He is semi-independent, receiving daily support from Living Opportunities, a local organization that provides support for adults with developmental disabilities. They check in to make sure he is taking his meds, take him grocery shopping, help with doing laundry, keep track of medical appointments and provide transportation to them, among other things. I pay his bills out of his Social Security income and obtain and fill out all paperwork associated with his various benefits. I probably do a lot more I’m not even thinking of at the present moment.

It should be noted that no success of his came via luck. It involved tenacity, determination, and years of all kinds of therapy for a five-year-old who, when asked by a doctor, could not say his own name. Whose severe sensory issues precluded going to the grocery store and any other public place because this was a time when no one thought to suggest wearing noise-cancelling headphones. Instead, he shrieked and bolted. The list of his challenges, past and present, is long.

But now the guy safely rides his bike everywhere, up to twenty miles away and back. He handles its maintenance himself. He pushed his bike with its bike trailer attached all the way up a 3600-foot mountain because he was training to climb a 9500-foot one. (And with the accompaniment of my amazing, wildland firefighter sister, he succeeded.)

He takes good care of his cat. He likes to vacuum (read here why this is huge). He refers to his autism as his “difference,” and he has begun to ask me for dating advice and ways to meet “young ladies” who would understand and accept him.

Most importantly, he comes and goes as he pleases. Yes, you read that correctly. He comes and goes as he pleases, and I feel okay about that. I’m no longer frantic at the thought of him out alone in the community. Yes, sometimes I worry – he is vulnerable socially (being taken advantage of) and physically (bike riding in a city – or on a mountain). But from his own apartment he comes and goes as he pleases and I’m not wringing my hands all day long.

I don’t know which is more significant.

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He calls them “The Three” – his wallet, keys, and phone. He got tired of hearing me list all three items individually, having to say Yes, yes, yes to each separate inquiry, and he came up with a collective term. So now when I pick him up to come and spend the night at the house or to leave for some other activity, as we head for the door I ask, “Do you have The Three?” And he says Yes, only once, and then we go about the rest of our day, truly blessed, well aware of what The Three symbolize for both of us.

Why My Son Moved to a Supported Living Home

IMG_0909It’s not something you hear a parent say every day. It’s not “my daughter has a dental appointment today” or “my son had a meltdown today” or even “I had an IEP meeting this afternoon.” But the words ran over and over through my mind as I drove home: I moved my autistic son to a supported living home today.

Nigel’s 18 now, diagnosed over fifteen years ago, started talking at age five and a half. He has an emotional delay of about five years and the executive function skills of a typical seven-year-old. He has received various therapies since before the age of three and received a modified diploma last month. He likes to read Jules Verne novels and National Geographic magazines. He loves listening to Creedence Clearwater Revival and Bob Marley. He loves watching action/adventure/disaster movies and wants to go to film school and work for Disney.

Yes, he is all of those things and more, the good as well as the challenging. He has epilepsy (the kind with grand mal seizures) and all of the doctor appointments, lifestyle changes, and medication issues that go with it. He also has bipolar and all of the tribulations that go with that. I won’t go into detail about his history of aggressiveness and other behavioral issues. After years of careful observation, intervention, and lengthy, exasperating medication changes, we have successfully resolved most of these issues. Why then, I have been asked, have I still pursued placing him in a supported living home?

In a word, need. After over thirteen years of single parenting a special needs child, I need this. After a lifetime of subsisting on the scraps of my attention and having to watch out for his older brother, my younger son needs this. And after coming to terms with one disorder after another and grasping at whatever semblance of semi-independence there is for him, Nigel needs this. And he wants it. For months we researched supported living homes in our region and found a highly regarded one that he liked that happened to have an opening right when he was ready to move. Right place at the right time.

Still, as I drive back from my son’s new home, forty minutes away, the guilt creeps in. The feeling that I’m not doing what I’m supposed to do as a special needs parent, that he’s supposed to live with me until I die and I’m not honoring that unspoken code. But why should we think that way? Is it pride? Is it duty? Is it love? Is it just…playing the hand we were given?

Yes, it’s probably all of that. But I say if we can trade in one of our cards so that we have another option, we shouldn’t feel regret at doing so. We still have the same hand – we can just do a little more with it now. Fulfill some needs. Maybe things will turn out even better than we’d hoped. And if they don’t, we can make changes. After all, we want the same basic things for all of our children, with or without disability. We want them to be safe and we want them to be happy. And if those things can be achieved outside of our home, there should be no chagrin, no second-guessing ourselves. There should be a sense of accomplishment, as with any other milestone.

This is my child, whom I’ve nurtured and shepherded into adulthood, like any good parent. We’ve experienced some different circumstances along the way. But just because I may no longer be his primary caregiver does not mean that I’m not going to be involved, that I don’t wonder every few minutes how he’s doing, if my trust was well-placed, if he’s safe and happy. No matter how confident I feel about my judgment, there are no guarantees. Some of us are not satisfied with that, but I cannot live in fear, and neither can Nigel. If there’s one thing he’s taught me, it’s to never give up. And I won’t. Whether he’s living at home with me or living in a supported living home without me, I’m still his mom. Nothing changes that. Nothing changes the love. Nothing ever will.