Tag Archives: supported living home

Transition Check-In: Back to the Diving Board

“Many things in life, at most times, are filled with both uncertainties and possibilities.” – Nigel, age 18

“Life is a holding pattern.” – Tanya, age 98

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The phrase “back to the drawing board” supposedly originated from a cartoon featured in the New Yorker in 1941. The cartoon showed various military men and ground crew racing toward a crashed plane, and a designer, with a roll of plans under his arm, walking away saying, “Well, back to the old drawing board.” And as I found myself moving Nigel back to my apartment, with his big captain’s bed and many boxes of belongings (he would be a hoarder if left to his own devices), just two months after his much-prepared-for move-out, I couldn’t help but think of it.

With the situation I described in my last post about Nigel’s transition, things rapidly deteriorated. He had started pulling out his hair and eating it again, and refused to eat meals with the rest of the household, becoming extremely reactive whenever the other client walked into the room and thereby disturbing the entire household, although every effort was made to accommodate him (Nigel). This would occur even when the other client hadn’t said anything or even looked at him. Finally the house manager called me at work one day (he’s not even in school anymore and I still dread, and receive, those calls) and succinctly stated, “Nigel’s not functioning here. He needs to be moved.”

And the curse word that I reserve for situations such as this almost escaped my lips, but in an effort to maintain diplomacy, I said that I would contact his case manager right away. She then proceeded to describe Nigel’s reactive behavior, stating, “It’s obvious he hates the other client.” And diplomacy all but flew out the window as I said, “Whoa! Has Nigel actually used the word ‘hate’?” “Well, no.” “Then let’s not make assumptions about how a person who has difficulty expressing himself thinks or feels!!”

And it dawned on me that no matter how old he is or where he lives, I will always have to fight for him.

His very new (to him) case manager, who has more experience with older adults but is happy and willing to learn as she goes with Nigel, emailed me that she contacted four different agencies, and we had a meeting set up with one of them within days. However, it turns out that these agencies provide services other than housing. They do daily check-ins with those who have apartments, and they provide transportation and job coaching, etc., which will be great in a little while. But until his HUD goes into effect (we are on month two of a four-year waiting list), the only other housing option for him (besides being on a pad on my living room floor, since my younger son moved into the second bedroom two months ago), would be placement in another supported living home.

Why that won’t work:

a)      Several of those homes in our area have babies in them (he can’t handle the crying)

b)      What happened at this last house could easily happen in another home, including his reactive behaviors

c)       If there are no openings in our area, he will be sent anywhere within the state that they have an opening, as far as 300 miles away

d)      He wants to remain in this area, near family and friends, so he can have support while he works on his GED

And something else dawned on me, equally as significant: It’s not about the other client.

I think Nigel realized (and eventually I did too) that he doesn’t belong there. Not just that particular home, but any of them.  He’s not ready for his own apartment yet, but someday – with daily check-ins, transportation, and other services that these disability-related agencies provide – he will be. And until then, I can’t stand by, able-bodied, and let him be miserable. Yes, I’m exhausted after 15 years of single parenting. Yes, I wanted more than anything to spend some one-on-one time, finally, with Aidan before he graduates from high school. Yes, I wanted Nigel to feel like he could be semi-independent.

But the supported living home didn’t work. And I know there might be others that might work for him. Unfortunately with the limited resources in our area, we can’t be choosy. Often there’s only one choice, one opening. If there’s something about it that won’t work for him, the only alternative is to stay in my living room. And of course no one here is enjoying that.

Instead of “back to the drawing board,” for me it’s more like “back to the diving board.” As I fill out applications for 3-bedroom apartments and get the money together for the deposit, bracing myself for another move, I feel like I’m diving into cold water, and I’m dreading it. Things were supposed to go much differently than this. But they didn’t, and now I’m right back in the situation I was trying to change. And as I dive off that board, back into it, I’ll try to keep in mind Nigel’s positive words from over three years ago, when we experienced a similar life-changing decision that didn’t work out in our favor: “Maybe some good will come of it.”

I’m sure it will. We just have to get there.

Transition Check-In: On Chickens and the Counting of Them

Sometimes waiting to count your chickens after they hatch isn’t going to help. Because if they aren’t doing well after they hatch, what do you do then?

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The good news is that after seven weeks of Nigel living in a supported living home, I am still confident that he is receiving the best professional care possible, that he is well taken care of. The bad news is that he has a housemate, another client, who drives him insane. This guy, who is not on the autism spectrum, is very talkative and constantly tries to engage Nigel. Explaining that “Nigel needs a lot of time to himself” works for about five minutes until the other guy forgets and comes over to talk to Nigel again. The house managers have tried to help by giving the guy incentives and reminders, and they’ve also incorporated coping strategies for Nigel such as having him wear over-the-ear hearing protection as a signal that he does not want to be disturbed. But it has only resulted in engendering animosity, and things are escalating.

It’s gotten to a point where Nigel is constantly on edge, reminded of when he was in middle school and being bullied, even though this time there is no malicious intent. It doesn’t really matter. He feels badgered, even though the other guy, who is angry and feels rejected, can’t help it. The fact that Nigel can’t make the badgering stop throws him right back to the agitated state he experienced in his early teens. And he’s regressing behaviorally and socially. I have seen him overnight at least every other weekend since he moved, and I can see the difference. He’s rapidly losing ground.

Part of me wants to hold off from swooping in and rescuing him. This was something he wanted to do (“I can’t wait to be out from under your rule” was a common refrain last year), and it’s important for him to learn what he can from the experience. We’ve all had to learn to coexist with people who irritate us – coworkers, roommates, even family members – it’s a fact of life, and a social skill. If he were being bullied, I would instantly make changes. But he’s not. He’s uncomfortable, but he’s okay.

And so I’ve come up with what I hope will be a positive (and swift) solution. We’re looking into alternatives where we can move him. I’m certainly not excited about the process of this, having already gone through it for most of the past ten months. Lots of phone calls, emails, and appointments. Lots of driving over 50 miles to pick up Nigel, drive to where the agency offices are (he’s in a rural area), and then either have him spend the night and/or drive him back to his place, another 50+ mile round trip. It wasn’t supposed to be like this.

I’m sure Nigel is thinking the same thing.

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When it comes to chickens, I’ve learned to just not count them at all. Not at any point. Life is eternally wait-and-see, demanding patience and detachment, but, fortunately, buoyed by hope.

Another Different Stop Along the Way

Nigel’s 17th Birthday, Oct. 2011

June – graduation – is four months away, along with Nigel’s transition to a supported living home. Most days I feel that it can’t come soon enough. And I don’t know if I would have thought that way ten years ago, so those of you with younger kids, I don’t expect you to understand. Those of you with older kids who don’t feel that way, I applaud you. And I wish I hadn’t been a single parent for fourteen years. (While we’re wishing, I wish certain disorders – including my own! – hadn’t been a part of that package.)

But there are the days when I feel like June’s coming on me like a truck, that I have too much to do to prepare in addition to the daily, weekly grind. So many damned doctor appointments and prescription problems. And guardianship! He’s been 18 for over three months and I’m still deciding if I should pursue it. There are some cons to it when your child is moderately functioning that I have to weigh. But if I’m going to do it, I need to start the process soon.

In addition to all of that, we are still touring supported living homes, and just saw our third one last week. So far, the last two have not been as much of a fit as the first one. The second one was a family home that had a toddler (random screeching, even if it’s playful, is not going to work) and no internet (for a YouTube junkie, really not going to work). The third one was also a family home with a baby (crying? Yeah, no). Fortunately there are a few others in our vicinity, and we will continue to tour them. In May, we begin the application process.

It’s not lost on me that this is sort of like college touring for special needs parents. Instead of colleges, it’s supported living homes. But it’s the same thing. You take your teenager to look at places where they’re going to be living. I’m not sad that it’s different. I mean, I may still get to tour colleges with Aidan. But even if that doesn’t happen, it’s okay. We’ve always walked a different path, and this is just another different stop along the way. Nigel still wants to go to film school, and maybe in a few years, if he continues to evolve as he always has, that will be possible. And then, by God, we’ll go and tour film schools.

Here’s the thing: I wish I had the strength to let him stay with me until then. Four years ago, I said that he could. I believed that he would, believed that I could do that for him, assumed that that’s how it would be. Like most special needs parents plan to do – until they no longer can. I guess I just reached the “no longer can” part sooner than others. And I need to make peace with that. I need to remind myself that we can only do the best we can with the information we have at the time. I know I did, but I need to have that be enough, to believe it, to feel it in my core. And I’m not there yet.

The Value of Going with the Flow

I didn’t learn to swim until I was 9 or 10. I’m not sure what the reasoning was behind that, especially since, growing up in southern California, I was surrounded by beaches and pools. But it might have been even before I learned to swim that I learned how to jump waves in the ocean. I loved how the motion of jumping would lift my body over the swell, just floating up and over it. And then came my favorite part – being up to my shoulders in the ocean, I would move with the tide as it rhythmically pulled and pushed me, back and forth, outside of my control. I felt soothed and at peace. In the ocean or in life, I learned early on to go with the flow.

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I’ve received quite a few emails since my last post asking how things went at the supported living home that we toured, and I am pleased and relieved to say that things went very well. The house manager was friendly and sincere, genuinely caring about “the guys” in his charge, three of whom also have epilepsy. And “the guys” were great – most of them were just a little older than Nigel, and at first meeting, so similar. Nigel mentioned that he had a lot of books, and one of the guys asked what kind of books, so Nigel listed H.G. Wells and Jules Verne, two of his favorites. Another guy chimed in and started rattling off titles by those authors, and Nigel nodded or said, “Yeah, I’ve got that” to each one. They were completely in synch. Another guy asked if Nigel had any Louis L’Amour, and he said no. I wondered if Nigel was familiar with Louis L’Amour, but then when we were leaving, he went up to the guy who had asked him, and Nigel said, “See you later, my hombre.” The other guy smiled and they shook hands and clapped each other on the back, like they had been friends for years. And, as I so often do for various reasons, I felt very emotional because I realized something.

Nigel had found his tribe.

He’s had friends over the years, kids in Boy Scouts who had taken him under their wing, who truly cared about him, and they’ve been such a blessing in his life. Then recently, by default he made a friend from his social skills class who has Asperger’s, and they both love movies. But this was different.  Of course it’s wonderful that he felt so comfortable at that home and immediately fit in with the guys there. It went better than I could have hoped, and I’m very grateful.

But seeing them all together, interacting, seeing their sameness, stirred something in me.  They are all individuals of course, but their level of autisticness is the same. Standing there in that living room surrounded by young men with autism, it struck me that I’m no longer “waiting to see” how Nigel will be “when he gets older.” This is how he is. This is who he is, who he has always been.

My greatest hope for Nigel was not that he would learn to talk (although of course I hoped and prayed for that too, like mad), but that his adult life would be happy and fulfilling for him, whatever that looked like, and that he would be appreciated for who he is. And whether this would be his “forever home” or not (he still very much wants to go to film school), I think my hope for his adult life would be fulfilled there. Not only would he be appreciated, but understood, and accepted. And, I hope with all my heart, happy.

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In this ocean of life, in which we ride waves or jump them, or stay on shore to watch, all we can do is go where the water takes us. We certainly can and should fight the current if we find that we are getting into unsafe territory, but rarely do we get to that point if we are paying attention. Most of the time, we can just stand in the water with our feet still on the ground, and sway with the tide, open to whichever way it might take us and whatever opportunities it puts before us.

At the Threshold

Tomorrow, Nigel and I are going to tour a local supported living facility that is a potential home for him in seven months. Now that he’s 18 and approved for adult services, he’s eligible. How did we get to this point?

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There is a part of me that is elated, I am sorry to admit. I have been his primary parent for 14 years, and a co-parent for four.  And I don’t have much left in me to give. I have been to every single goddamn IEP meeting for 15 years. Not just the annual ones – they happened more often than that for him. Add to that all the extra meetings and conferences with teachers, principals, therapists, and specialists. All the emails and phone calls. God help me. The phone calls – that there was a behavioral problem and I needed to leave work and pick him up. So.Many.Times. The doctor appointments. The blood tests. The changing of medications. The seizures, the horrible seizures and my resulting PTSD. The MRIs and EEGs. The picking up of prescriptions and their not being ready and my time being wasted. The forgetting to take his medication and me having to drive to his school to get it to him. The bullying. The bullshit of dealing with the teachers and school district about the bullying. Having to homeschool him because the school district suggested he be bussed to a different school district. And moving farther back, there were the years of screaming and bolting in grocery stores, restrooms, parking lots, restaurants, almost any public place. The extreme sound sensitivity. The not talking. The echolalia. The explaining/apologizing for his inappropriate behavior. The fear of the future.

But I am also elated about the prospect of him moving out because the past two years, since his epilepsy started, he has been very difficult to live with. By that I mean, as I mentioned in my last post, that he has become aggressive. He has also been verbally abusive to me. He has yelled at me and frequently says incredibly disrespectful things. I realize that a large part of that could have been due to his undiagnosed, untreated bipolar, which we are still jockeying meds to manage. But I am near the end of my proverbial rope. I am holding on – trying to – for seven more months until he graduates from high school with his modified diploma. I feel that I owe him that – staying home with me until then. He has worked as hard as he could to graduate with his peers. That’s all he ever wanted – what he said to me when he was 10 years old (and again at 12) – I just want to be like everyone else.

And it pains me to still see the differences. It pains me to think that, after everything we’ve been through, placing him in a supported living facility is the best I can do for him. He’ll still be able to take GED classes at the local community college. But I’m not elated about that. I’m also not elated that I’m having to “think of the future,” as my mother pointed out. “What would we do if something happened to you?” To be honest, unlike most special needs parents, I don’t think about that. I’m not sure if it’s because, as a long-term single parent, something has already happened to me: I’m a burned out shell of myself. I’ve had to do more than double duty for too long, and the thought of some other entity taking over soon is the only thing keeping me going. Or, the fact that I don’t worry about what would happen in my absence might also be because of a different something, something that parents of children with epilepsy try not to think about but that keeps us awake at night (check out #10 at this link). I may outlive my child.

Regardless, we are at the threshold of the future I previously feared. We are here – transition is now. In childbirth, as many of us know, transition is the period of labor that comes right before pushing. It’s the most intense part of the process and the contractions are the strongest. And the pangs I am experiencing now, before the last push in June, are incredibly strong.  I want to do right by him, because I love him fiercely, as much as I ever did, but his behavior is making me think I will not miss him! I know, it’s supposed to happen that way. Some birds need a little nudge out of the nest. But somehow this feels different. Probably because he’s such a different bird.   

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I tried so hard to ensure the best possible future for him. Understandably, I was crushed when what I thought he needed didn’t happen. But during this time of transition, I am realizing that what I thought he needed for a successful future might have been mere wishful thinking on my part. Even before he could talk, I have always thought that Nigel would succeed on his own terms. Sometimes, I just need to remind myself of that.

image courtesy of http://www1.cgmh.org.tw