Category Archives: Transition

Another Different Stop Along the Way

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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

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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.

*

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.

*

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

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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?

*

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.   

*

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

As If

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I remember hearing that somewhat off-putting phrase when I was a kid, on summer evenings while riding bikes with the neighbor kids. “Mom says it’s time to come in for dinner!” “As if!” As in, You telling me will not make me go in. As in, No way, I’m having too much fun. And, I’m not going to be the first to go in. Then later, overhearing a clique in junior high/middle school: “Jason wants to go with you to the Sadie Hawkins Dance!” “As if!” As in, I can’t be bothered with him. As in, But secretly I have a crush on him and will probably ask him. And, I feel popular because everyone heard you say that to me.

But lately for me that phrase has come to mean something less cavalier, especially with the word “act” in front of it. Act as if. It’s the “fake it till you make it” approach, usually in reference to achieving goals. In other words, if you want to become successful, act as if you already are and do the things you would do if you had already achieved your goal. Pretend that you feel confident even when you don’t, and eventually you will have confidence. Post regularly even when you have just a few readers, and your readership will grow. Shave and wear makeup even when you don’t have anyone to impress, and soon you just might.

And as we come to the end of a rather important school year, Nigel’s penultimate high school year, I find myself feverishly acting as if. As in, I want to believe he will achieve his goals of going to film school and working for Disney, but I have to act as if he won’t. As in, it will probably take a little longer than we’d like for him to come close to achieving his goals, and I have to temporarily act as if he won’t by applying for services for him. Because there are waiting lists for programs. And lengthy evaluation processes. And lately my weeks have been full of various appointments, meetings, and phone calls, setting up case interviews with different agencies for any adult services he’s eligible for. I’m reading A Full Life with Autism by Chantal Sicile-Kira and Jeremy Sicile-Kira, and I cannot emphasize enough how timely this information is for us, and how valuable. I know I’m doing the right thing in being proactive, yet I somehow feel guilty that I’m not acting as if he’ll succeed.

But here’s the thing: in acting as if he might not achieve his goals, I am actually putting the supports in place so that he has a better chance of achieving them. So that when he does, he’ll have a better chance of sustaining the life he envisions for himself, fulfilling and affirming. And then I think, As if. As if he won’t figure out a way to manifest his goals. He’s done this, and this, and this!, and even this. He’s had that Disney letter in a frame above his desk for two years now. He’s writing scripts and acting as if. And someday he’ll be right where he wants to be.

It’s Okay Now

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I was leaving for work the other morning, walking to my car parked in the driveway, when I heard something that instantly got my attention. It was coming from the bus stop for the middle school kids, and it sounded like an argument or fight. I listened a few more seconds and realized that one kid was loudly “performing” while the other kids stood in a semi-circle around him, laughing, ganging up on him. My PTSD kicked in, my heart raced, and my blood ran cold. Nigel had left several minutes earlier, riding his bike the opposite direction to the high school. I knew that the situation at the bus stop had nothing to do with him. But my body remembered how it felt, four years ago, to know that it had everything to do with my son. That he didn’t know how to interact with his peers so he “performed” for them, acting out a scene from a movie. They laughed at him, and he became agitated and angry, which made them laugh more. As a parent, it was horrible to witness. My instinct, four years later, was still the same as when it was my own child being targeted. I started to go over there to lecture them about not laughing at someone who communicates differently. But after I took a few steps, I realized that the kids at the bus stop were not doing what had been done to Nigel four years ago. The louder kid was trying to engage them in playing along, and they were interacting, laughing together. It wasn’t what I thought it was. It was okay. And, still shaking with adrenaline, I turned and walked back to my car and drove to work, trying to contain the sobs in my chest.

*

We recently had Nigel’s annual IEP meeting. It was a big one, now that he’s in his junior year of high school. Yes, you read that right – junior year. We’re in heavy transition mode, moving into the “later phase” of transition as described in The Autism Transition Guide: Planning the Journey from School to Adult Life (which is a fantastic resource). We’re almost there, people, and I’m trying not to freak out about it. This is what we spend all our time, energy, and effort preparing for. This is where the money meets the mouth. The moment of truth. And we’ve got just two school years left. There’s a lot to do in little time. The “good” news is that by now, most of Nigel’s IEP goals are executive function-based, as opposed to academic or even social. His social skills class has dropped down to twice a month, and I wondered if it was enough, wondered if his social interaction at school had really progressed to such a low-need level to not even necessitate an IEP goal, even though I agreed that the executive function goals are paramount at this stage of the game.

This past Friday was the high school’s Back to School Open House, and Nigel argued that he didn’t want to go. “I spent over six hours there today!” It was the end of a long week, and I didn’t want to go either. But it’s incredibly important for special needs parents to attend Back to School Night, especially when your child is older and has multiple teachers. It’s a great opportunity to touch base with those who attended the IEP meeting and to make contact with those who didn’t. And I remembered that in previous years it had been awkward discussing Nigel’s strengths and weaknesses with him standing in the classroom. So I agreed that he didn’t have to go, and I went to the high school alone, picked up his schedule and a map, and began wandering the halls to find his classes.

I have a pretty standard thing that I say to his regular ed teachers, which is basically to introduce myself, make sure they are aware that Nigel has an IEP for autism, and tell them that sometimes, due to his autism, Nigel will answer a question or make a comment and get off-topic with an idea that he’s passionate about. I tell them that usually a gentle redirect, to remind him of the topic, will suffice. I tell them that if they have any questions or concerns to feel free to contact me, and I thank them for their work with my son. You’ve got to keep it short and sweet because there are other parents waiting in line to do the same thing. But it’s so important to put in the face time, and so worth it.

Finally, I found each of his classrooms. The teachers who had attended the IEP meeting were genuinely excited to see me and tell me how well Nigel was doing and that they were very happy to have him in their class. That comment alone, which I usually only hear from his special education coordinator and social skills moderator, was enough to generate a lump in my throat. But then, when I said my spiel about him sometimes getting off-topic in class discussions, not one, not two, but all of his teachers got a slightly confused look on their faces and said, “Everything he says is right on topic.” For a split second I thought, my kid? Really? They’re not confusing him with someone else? And then I casually smiled and said, “Great! I’m glad to hear that’s not an issue for him anymore!” But inside I was vacillating between wanting to do cartwheels and trying not to cry from sheer joy. He’s on topic! All the time! They’re very happy to have him in their class! That’s four years of social skills classes at work – that’s what that is. And fourteen years of speech therapy. And nearly seventeen years of believing that it would be possible, that one day he would fit in with his peers, still different, but greatly appreciated for who he is.

*

Some time ago, my wise friend Elizabeth posed this question: “If you could go back, what would you have told yourself right after receiving your child’s diagnosis?” My first instinct was that I would tell my twenty-six-year-old self, who had a seventeen-month-old and a just-turned three-year-old, non-verbal child with autism, “It will be okay.” I had other things I wanted to say, like “Ask for help,” but mostly, I just wanted my younger, scared self to know that I would get through it. And yes, almost fourteen years later, there are still plenty of concerns for Nigel’s future and many stressful things I need to do to facilitate everything. But for the most part, it’s okay now. Wait – do I really hear myself daring to say those far-reaching words? Have we truly arrived? Part of me says that time will tell. But another part of me says that no matter what happens, if he’s gainfully employed or living independently in adulthood or not, it will still be okay. It is now, and it will be. That much I know. That much I still believe.