Tag Archives: empowering autistic adults

Transition Check-In: The Keys to Supported Independence

If I had written this post just one week ago, it would have been titled “Transition Check-In: The Waiting Game,” because that’s where we were, where we have been, where we thought we would be for at least year two years, waiting for Nigel’s HUD to go into effect. I thought we would have to wait for that to happen before we could set him up in his own apartment with support from Living Opportunities, a local nonprofit organization that helps adults with developmental disabilities to live their lives as independently as possible, while offering assistance in any form that is needed. They have already begun to provide services for Nigel while he is still living in my home, taking him to appointments, helping him to organize his living space and his time. They are very professional and specially trained to handle various needs, personalities, and preferences. They focus on presuming competence and facilitating independence. In fact, they even provide services for a few people who do not communicate with speech, but with supports in place are able to be in their own apartments. Without this support they would undoubtedly be placed in group homes, sharing a small room with another adult. It’s amazing and wonderful what Living Opportunities does. We are so blessed to have this organization in our area.

Last summer, when I moved Nigel back from the group home, I was advised to apply and get him on the waiting list for HUD, which I did. I didn’t realize that in doing so, he would also be on the waiting list for several apartment complexes in our area that offer certain units for low-income tenants who are waiting for their HUD approval. A couple of weeks ago, I received a letter in the mail that one of these units was available.

I called the Housing Authority office to let them know that we were interested, and they said that they had sent that letter out to about 20 people. With Nigel, I drove by the place anyway, just to see what the complex looked like. It was new, quiet, and definitely not Crackville. Nigel agreed that it looked like a nice place to live. Unfortunately I had a very busy week and was only able to call about the apartment the day before the end date for applications, so I figured the apartment would go to someone else, and we would wait for another one of these apartments to become available.

But a week later, the Housing Authority office called me. They said that Nigel was next in line. I asked if that meant there was one person ahead of him and they said, No, he’s it. He’s the next one eligible to apply if he still wants to. And the very next day we went down to that office and filled out the application with me as the co-signer.

Four days later, they called and said the apartment was his! We are going in next Monday to sign the lease and get the keys, the keys to Nigel’s autonomy that he needs and so rightly deserves. The keys to the space for his massive Lego collection, the privacy to act out (in costume) scenes from his favorite movies, and the satisfaction of not having his mother telling him when to shower or take his meds (the support providers will do that when they check in on him every day). (!!!!) And these same keys are also the keys to my relief, to being able to focus on Aidan’s last year of high school next year, and to regaining my sense of self that has been shelved for so long I don’t even know what that self was. These are the keys to rediscovering her.

It’s another big step, probably the biggest, in Nigel’s journey to and through adulthood, a journey to which I have devoted much time and energy. He will have all the support he needs through Living Opportunities, he will spend time with family members at least twice a week, and I am always a text or call away.

Moving Day is in three weeks, when the rubber really does meet the road. It’s the start of something that I would have thought impossible just a few short years ago. But if I look at his trajectory, the journey we’ve been on to get here, every challenge he’s faced or taken on, I shouldn’t be surprised. This is the boy who, at the age of five, could not say his name when a doctor asked. This is the boy who could not go into stores, movie theaters, and restaurants because his sensory issues overwhelmed him. This is the teen who needed a modified diploma because, although he understood the material, he could not handle the volume of work.

But he made it through high school, and he walked across the stage to receive that diploma while his classmates cheered. He was voted “Most Likely to Survive a Zombie Apocalypse” by his senior class. He spent time getting to know a girl and he asked her to prom and she said yes.

When he said, two weeks ago, I don’t think I’m ready for this, I told him, “You can do this, Nigel.” And with the supports in place, I know he will.


Image courtesy of Wikipedia

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.

A Lesser-Known Perk of Being 18

Being 18 is pretty cool. You can do a lot of things now – you can vote, of course, and if you did not have epilepsy or the developmental delays caused by autism, you could enlist in the military. But you can have your own eBay and PayPal accounts. And you can get a tattoo or get married. You can buy a lottery ticket!

There are other things you can buy at 18 – tobacco products, guns, and pornographic material. And here’s something else – even if you don’t want to buy them for yourself, your younger “friends” could ask you to buy it for them. They’re banking on the fact that you don’t know it’s illegal to do that. They would even give you the money to do it! And, because you’re 18, you can also sell things to a pawn shop to help your “friends” out. They would really appreciate it.

You could be walking home from school, dialogue from your favorite movie running through your mind, maybe even coming out of your mouth quietly, and suddenly two guys from your school walk up on either side of you. They’re juniors, a class behind you, but they know you, as everyone from your school knows you. They’ve known you for quite some time, even though you don’t know them. They know you have autism, they know how trusting you are, they’ve seen you do things just because someone asked you to. They tell you they want to sell some jewelry to that pawn shop that’s on the way home from school, but you have to be 18 to do it, and they’re not 18 yet. Could you help them out? It would only take a minute. They thought of asking you because you’re a cool guy. And because they know you wouldn’t even think to ask for a cut.

But what they don’t know is that you have a mama bear for a mother. They don’t know that she thought ahead and knew how vulnerable you would be as you entered adulthood, and that for years she has taught you how to figure out if someone is really a friend or if they’re just trying to take advantage of you. She taught you how to question if a situation is a good one to be in. And now that you’re older, some of what she taught you is starting to come together and you’re developing the ability to figure it out on your own, even if the situation is not one she had thought to talk with you about. So you nonchalantly, in your self-described monotone voice, tell the guys that you need to let your mom know you’ll be late, and you pull out your cell phone and call her.

You tell her, in the same monotone voice, that some guys from your school asked you to sell some jewelry for them at the pawn shop. Because you’re 18.

And she tells you, trying not to sound frantic, that she’s so glad you called, because if you sell that jewelry to the pawn shop and it turns out to be stolen, you – you – would be held legally responsible. And then she says not to say any of that to the guys, to just tell them you have an appointment and need to get home.

And you do that, and five minutes later you arrive home, and your mother lauds you for showing such judgment and awareness. And you ask her what you should have done if they didn’t leave you alone, and she talks with you about strategies for that and other types of situations like it.

Because empowerment and advocacy don’t just happen in IEP meetings and school projects and blog posts. Those things are absolutely worthwhile (otherwise I wouldn’t be writing this blog post), but everyday life is where empowerment and advocacy really happen. Where situations organically present themselves and you roll with them because you have the tools in place to do so. And when you aren’t sure, you ask for help.

Because you’re 18. You’re autistic. And you know what’s up.

*photo courtesy of Wikipedia