Sixteen

Hello, it’s me, Neil.

My plans for my 16th birthday, which actually is today, are of going to the Family Fun Center with my friends to have the party there on Friday. The Family Fun Center is where you can play video games or do some stuff outside like the batting cage, mini golf, or my favorite thing to do, in my opinion, is the go-karts. I’m really wanting to get my learner’s permit in driving, because I feel free, when I have my own ride.

Things at school are going fine for me, I have Algebra I, Video I, Theater Arts II/III, English 10, Life Science, and two study periods. As for my favorite class, I have two favorites, Video I and Theater Arts II/III. Speaking of which, for my theater class, I wrote a script for a musical play that I suggested to them. The homecoming dance was fun and exciting.

As for how I feel about my autism, I feel just fine about it. Earlier in the month, I saw the Temple Grandin film and it showed me someone else’s life that was sort of similar to mine. For when I grow up, I’m just wanting to be a filmmaker. Here’s one of my first short films, “Allosaurus Attack”:

License to Worry

I know of several teenagers and several adults, both on and not-on the autism spectrum, who don’t drive or don’t want to. It could be because they realize that they’re too easily distracted, or that they know it’s a huge responsibility and don’t feel ready or comfortable, or even that they simply aren’t interested. I’m sure there are many reasons why people who don’t drive do not. Unfortunately, my son, who was diagnosed with autism at age three and didn’t start talking until age five, does not feel that any of those reasons apply to him. He wants to drive. And he turns sixteen next week.

Neil has always wanted to be like everybody else. I know this because even before he could talk, he would try to interact with other children by going up to them and laughing in their faces or bumping into them in the hopes that they would play with him. Without words, he tried to engage them. When he started learning to talk, he would go up to kids at a playground, repeat lines from his favorite movies, mixing up words he didn’t know, and the other kids would ask, “What language is he speaking?” Years later, when he was being bullied at the bus stop, I told him that I would drive him to school instead. His response: “But I just want to take the bus so I can be like everybody else.” He is nothing if not determined.

I know that there are people on the autism spectrum who can and do drive. But Neil is just not there yet, and it may be a while. It has nothing to do with his ability to operate a vehicle. If anything, that will be his strength. The problem is his high distractibility. And his five-year emotional delay. Those are the main things standing in the way of him getting his driver’s license. I wouldn’t feel confident with an eleven-year-old driving, even if he is 5’10”.

I’ve written about this subject before and received all sorts of well-meaning comments ranging from letting him practice so that he gets familiar with the feel of the car (definitely not the issue), to letting him race go-karts (he has for years), to the patronizing all-parents-are-nervous-about-their-kids-driving (not the same thing). Of course all parents are nervous about their kids driving. When my younger son, fourteen and not autistic, starts driving, I will be worried. But nowhere near as worried as I am about Neil driving, that’s for certain. It’s a far different level of nervousness. They’re both my sons, and on that level I worry equally, but one son has major challenges with judgment and awareness. And on that level I’m far more nervous.

When Neil started talking about wanting to drive around five years ago, I almost had a panic attack. He knew then that he would have to wait, but I knew that he would have to wait longer than he anticipated. Last year when he turned fifteen, I talked with him about that, but he still wanted to know when. He wanted to know just how long he would have to wait. I told him that we’d revisit the idea in a year, and he has repeatedly reminded me in the past month that the time has come. Ugh.

How will he handle the disappointment if it’s determined that he can’t drive? He’s not content to just maneuver the car around an empty parking lot or down a dirt road. Driving go-karts, though still fun, is not nearly enough. He wants his learner’s permit, and he wants it badly.

And there’s my answer, if I’m aware enough to realize it. He’ll pass the written test (I’m sure with flying colors, due to his near-photographic memory), and he’ll get his permit. And maybe, for now, that’s all he wants. He wants to have his learner’s permit like “everybody else.” He just wants to have it. And I’m hoping that having it will satisfy him for a while. I know that eventually he’ll want to get out on the street, but we don’t have to hit the road anytime soon. And when he starts asking to do that, I’ll sign him up with a professional driving instructor. I’ll still worry, of course. But at least I don’t have to yet.

Anyway, I’m hoping.

**UPDATE** Two month after this post was written, Nigel had two more seizures and, after a 24-hour EEG and MRI, was diagnosed with epilepsy. He never obtained his permit and, now in his twenties, still does not drive.

Image credit: magda s 

NEHBM

That’s my friend Carrie‘s acronym, NEHBM. It stands for not enough has been made, usually in reference to some little or not-so-little thing that a person in our life says or does that is worthy of appreciation, such as a teacher or aide who shares in our children’s small developmental coups, something that other people might not notice. Such as a friend’s relative who doesn’t mind when our children take off their clothes at a family barbeque. Such as the woman in the public restroom who says “I understand” when our children start screaming because someone flushed a toilet or started the air hand dryer. These are the compassionate people who get it, and NEHBM of the fact that they do.

Our family has been blessed with many people like that over the years (including all three of the ones mentioned above). We’ve also been blessed with some truly wonderful friends. Several years ago, in his quest for friendship, Neil discovered The Goonies and picked a few boys from his Scout troop to be his group of friends, like he saw in the movie. A few times a year, they would come over to our house to hang out, and Neil would have them sit on the couch and watch The Goonies while he recited the lines and assigned them roles to play. And they would be compassionate good sports and watch the movie with him, attempting to act out the parts as he directed. But, of course, things change. In recent years, one of the three boys opted not to come around anymore, and another one moved out of state, leaving only one to be Neil’s remaining “Goonie” friend.

NEHBM of that one friend. A couple of weekends ago, Neil decided that he wanted to ride his bike over to N‘s house (about a mile and a half away) to see if he wanted to hang out. I suggested that he call N first to make sure he was home before he rode all the way over there, so he did. N wasn’t home and Neil left a message on their answering machine. He had done this before with the other two friends and not heard back either for several days or not at all. Neil’s disappointment was always palpable. But that night, N called Neil back. Not only did he say he was sorry he wasn’t home earlier, he invited Neil to come over after school one day the following week. That sort of thing just doesn’t happen for Neil, and he was elated. So was I. A few days later, Neil went over to N‘s house, had a fun visit, and rode his bike home at the agreed-upon time. Like any regular teenager might do. Like autism didn’t matter that day. After a lifetime of always being different, that afternoon was such a gift – both for Neil and for me.

N‘s mom and I have also become friends over the years, and I can’t thank her enough for being the kind of parent we all wish there were more of, and for raising the kids that we all wish there were more of. Cheryl, my friend, thank you so much for all that you are and all that you do. NEHBM.

A Boy and His Voice

I started this blog two and a half years ago, and in that time I’ve had several requests from readers who had an interest in hearing Neil’s voice, wanting to see (or hear) him in action. I’m guessing that most of them had read some of the earlier posts I’d written about Neil’s characteristically stoic, flat voice, and either wanted to compare it to their children’s voices or were just curious. Since that time, Neil’s voice has continued to evolve. It’s been almost two years since I first started to notice voice inflection, an unexpected gift.  And now, well, you can hear (and see) for yourself.

One of the reasons why I hadn’t posted any videos of Neil before is because I wanted him to tell me when he was ready. I never mentioned it or made any suggestions – I wanted it to be completely his idea. And last week, he posted his first video on You Tube. He filmed himself talking about his new channel and his ideas for it. The time has come, and I am thrilled to share it with you!

As you watch it, keep in mind that this is from a boy whose speech was severely limited before age five, when a doctor asked his name and he could not answer. Ten years ago, I never dreamed that he’d be able to do these things as a teenager, to speak in complex sentences and upload videos to a website. How does a mostly non-verbal five-year-old progress to this point? I had no idea that it was possible because I had nothing to refer to at the time. Neil was in an intensive, ABA-based program for two whole years before we started hearing spontaneous speech, and we kept him in the program for another year after that. He has continued to receive various services ever since. And it’s all been worth it. Take a look.

I needed a tissue, but that’s just me.

 

Mainstream

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Neil (in the car on the way to the video store):  What does ‘mainstream’ mean?

I should have known it was coming at some point. But I didn’t. And I felt like a deer in the headlights.

It’s a simple enough word, perplexingly defined by Webster as “the predominant current or tendency of a movement, discipline, etc.” But it’s the secondary definition that we special-needs parents know all too well: “v.t. put (handicapped students) in regular classes.” Yes, that’s exactly what’s printed in my desk dictionary, complete with the parenthesis. And I cringed when I checked it later, wondering if Neil had heard or read something similar, causing him to ask. Wanting to hear it from me. Wanting to see what it meant to me, perhaps. Wanting to know what it meant for him. It’s something that we special-needs parents mention at IEP meetings and in blog posts and annual Christmas letters (well I do, anyway): Our hopes of mainstreaming. Our relief and pride when it happens successfully. Our sadness and frustration when it does not. I am unfortunately too familiar with the highs and lows of mainstreaming. Sometimes I think we give that word too much power.

Back to the car. Back to me wondering what to say in the second after he posed his question. I figured I’d keep it general, didn’t want to get too heavy. After all, we were going to the video store. The possibility hit me that perhaps he had read the word in the context of movies. So I tentatively forged ahead and said, “Um…mostly it means ‘typical.’ Like with movies and books – what most people are watching and reading. It’s the usual stuff.”

“Okay,” he said, his way of indicating that he understands something. A few minutes later we arrived at the store, and the conversation didn’t continue.

But the box had been opened, and I couldn’t just close it back up. We needed to discuss what was inside. He’s a sophomore in high school (!), he has started attending his own IEP meetings, and he should know. He should hear it from me. So a few days later (processing time for both of us), I went to talk to him in his room one evening, when I knew he would be relaxed, and I broached the subject. I asked him if he remembered asking me what ‘mainstream’ meant, and where he had heard or read it mentioned before. He confirmed that his question was in regard to movies, and then I told him that there was another meaning of the word that I wanted him to be aware of because he might hear it at his IEP meetings or read about it somewhere. I told him that when students have autism or other differences that affect their learning, “mainsteaming” them means that they are taught in the same classroom with other students, but that they often have aides for assistance. I briefly told him of his own mainstreaming history. I told him that some students have difficulty being mainstreamed and are taught in smaller classrooms or homeschooled, and that they are just as important, just as intelligent. They just have different educational needs. I told him that mainstreaming isn’t best for everyone. That sometimes it wasn’t working for him either, and that was okay. We just had to find something that worked for him. And we did, whether it was full-time homeschooling or part-time mainstreaming. It was all okay.

And gradually, over the years, that powerful word lost its influential quality.

Mainstreaming is not about the right way or the wrong way, superior if you are or inferior if you aren’t. It’s not the Holy Grail of education, as I mistakenly believed in years past. I remember the Christmas letter I wrote ten years ago, how I unwittingly glorified mainstreaming by crowing about how Neil, age five, was finally starting to talk, and I wrote, “We hope to have Neil mainstreamed for Kindergarten next year.” In fact, he wasn’t mainstreamed until second grade, and that was difficult at best, even with a full-time one-on-one aide. He wasn’t mainstreamed for most of middle school either. And here’s the thing – he’s a better person for it. He has not had a typical education, but he has had a well-rounded one. He has learned just as much, if not more, and he is happy. And I am just as proud of that.

The Boy and the Vacuum Cleaner

[This post was originally published at Hopeful Parents]

Once upon a time there was a little boy who had autism. He did not start talking until he was five years old, and he often screamed and butted his head into people and walls to indicate his frustration. He also had agonizing sensory issues that made it impossible for him to filter loud noises, and he would scream and bolt whenever someone turned on a mechanical device in his presence. He would be disturbed by leaf blowers more than a block away, and the vacuum cleaner in the house was such an assault on his hearing that he would fly into a panic if anyone so much as walked in front of the closet in which it was kept. His parents would try to “sweep” the carpet as often as possible to avoid using the vacuum cleaner. When they absolutely needed to use it, one parent would take the little boy outside and comfort him while the other parent vacuumed.

After some time, the little boy’s parents divorced, and the mother would vacuum whenever he was visiting his father’s house. This went on for a few years, and then the father moved farther away, and the little boy could not visit him weekly. By this time the little boy had started learning to talk, and when it was time to vacuum, the mother would take him to his bedroom, show him how to cover his ears with a pillow, and shut his door while she quickly vacuumed.

It went on like that for several years. The mother would always notify her son before she would turn on the vacuum cleaner (as well as the blender, the food processor, and any other mechanical device in their home). The boy’s sensitive hearing still kept him most anxious about the vacuuming, and as his verbal skills increased, he would head to his room and admonish his mother, “Don’t start until my door is shut!” and call out “Is it over?” when the vacuum cleaner had stopped. By the time he was a teenager, the boy told his mother, “That vacuum is like shrieking banshees in my ear.” She thought it would always be that way, and sadly she wondered what other sounds in the world still tormented her son. He had gotten to a point where he could go to a movie theater if he wore ear plugs, but the vacuum cleaner still plagued him.

Then one day, after being in a series of situations involving loud noises and noting that her son was affected by them far less than he used to be, the mother decided to try something. She approached her son and mentioned that it seemed that his hearing wasn’t as sensitive as it used to be, and he said, matter-of-factly, “Well, I’ve just learned to deal with it.” She pointed out that he could now mow the lawn while wearing ear plugs, and she asked if he would be willing to try that with vacuuming.  “Okay,” he said in his typically flat voice.

The mother gave him a brief tutorial on the vacuum cleaner, and, armed with his trusty ear plugs, the boy began to vacuum his bedroom while the mother went to work on something in another room. Amazed that he agreed to do it in the first place, she figured that he would do a quick job and shut the vacuum cleaner off as soon as possible. So when four minutes had gone by and the vacuum cleaner was still running in his room, she went back to check on things. She discovered that her son had put an attachment on the vacuum nozzle and was methodically detailing the corners of his room. She stood there, marveling at this unexpected turn of events. And then, with the ear plugs still firmly planted in his ears, her son looked up at her and smiled. The shrieking banshees no longer consumed him.

After the mother picked herself up off the floor, she praised him for taking the initiative and doing the extra work in the corners. She asked him how it went for him – vacuuming! – and he said in his flat but beautiful voice, “It was fine.” And even though it was a small thing, inconsequential in the grand scheme of things, the mother crossed “vacuum” off her mental list of things that her son, now almost sixteen, would “never” do and reminded herself that anything is possible. Anything.

Protocol

Apparently when I wrote my last post and mentioned something about not getting any of the dreaded phone calls from Neil’s school yet, I neglected to – you know – knock on some wood. Because the very next day, the second day of school, I had been sitting there at work for merely an hour when the phone rang, and when I saw “school” pop up on the caller ID, I really couldn’t believe it. Already? Aw, hell.

Upon closer, split-second inspection, I discovered that it was coming from Adam’s school, and I relaxed a little. But only a little. Because when Adam’s school calls, it’s usually because he’s sick, and I still wind up having to leave work to go pick up a child from school. He seemed fine when he left the house an hour ago! I sighed and picked up the phone, resigned to my fate.

But the call wasn’t about Adam. It was the school district’s main nurse, who happened to be at Adam’s school that day. And she was calling about Neil and his seizure protocol. My heart started thudding as soon as she said it.

Some of you may recall back in June when Neil had his first major seizure. It was horrible and scary, as they all are, but when the smoke cleared and I had done some research, I was able to identify what might have triggered it, and thus learned how he could possibly avoid future episodes. Neil stayed with his father for several weeks over the summer, and he made sure to refrain from watching movies in the dark, especially those with flashing lights. He is also learning to employ some stress-reduction techniques, since he was under a lot of cumulative stress at the time that the seizure occurred, and that most likely made him susceptible to it. And (as I make sure to knock on my wooden desk), the great news is that he has not experienced any more seizure activity at this point (that we know of).

But because he had that seizure, the school district requires there to be a seizure protocol on file in case he has a seizure at school. And I’m glad that they require it, of course. It’s a signed document that his teachers must be aware of in the event that he has a seizure in their classroom, so that they know what to do. It’s necessary, it’s important, but it’s unwelcome. Of course, I’m glad that there is a seizure protocol in place, and I approve it, but I wish it didn’t have to exist. I wish my son hadn’t had a seizure. I wish I didn’t have to worry every day about him riding his bike to and from school and having a seizure on his bike. It’s hard enough already. Everything he deals with is hard enough. And now this.

Like it or not, this is our reality. This is the latest thorn that has found its way to my side. One more worry in a long chain of fears. And I will just have to face it, like I do everything else. The seizure protocol came home today for me to sign, and we have an appointment next week with his doctor to see if she wants to schedule any more tests. If she does, we’ll do them, of course. But part of me wishes I could just bury my head in the sand. And all of me wishes that knocking on wood would be enough to keep the electrical activity at bay forever.

On Our Mark

Okay. I think we’re ready now. The supplies have been purchased, the backpacks have been packed, the fees have been paid, the papers filled out. The anxiety has set in.

Yes, there’s nothing like the start of a new school year to ramp up my stress level. I know – everybody’s busy running around, getting the ducks in a row, the usual for those of us with kids in school. For me, it’s not really about that. It’s that year after year my PTSD kicks in every time the phone rings. And I’m referring, of course, to the years and years of teachers and school administrators calling me at work to tell me that my son is having behavioral issues and I must leave work and come to get him. The phone rings and I instantly tense up. In recent years, with caller ID, the tensing doubles when I see “school district” on the screen. God help me, it’s a horrible feeling. It’s an alarm, a pre-panic, a dread. And it used to happen on a regular basis, but especially at the beginning of the school year.

Today, the first day of tenth grade (!), there were no calls. That doesn’t mean that there won’t be any later, I know better than that. But it’s a good start, and I’m grateful for it. Here’s what else I’m grateful for: a very positive IEP meeting last week. Some of you might recall how the last IEP meeting went, and how much I had prepared for it. I prepared for this one just as much because it was just as important. In fact, in some ways, this one was more important. The meeting in May was about getting the school district to agree that Neil’s academic needs, since he could not work independently, would be better met in a specialized setting. They didn’t agree, but they didn’t offer any alternatives.

So I came up with an alternative on my own. Over the summer, I researched various programs in public high schools with good special education departments. I thought, what are they doing that we could emulate? I printed out course descriptions from some of those schools that included specialized classes designed for students with autism to teach them the executive function skills they need to be able to work independently, which is exactly what Neil needs. I also researched various books written for educators on how to teach executive function skills to students like Neil, and I printed out descriptions of the books off of Amazon. I went to the IEP meeting, print-outs in hand, and proposed that the school create a weekly class on executive function skills for Neil and any other students who would benefit from it (and of course there are other students who would, even if they do not have an ASD).

And they said yes. They said yes not only to meeting my son’s needs, but to setting the precedent for future ASD kids at that school (and, as we know, there will be more). They said yes to being an even better school. They said yes to the other kids who really need some extra help with learning how to be a good student, autistic or not, but whose parents may not lobby as hard as I do. They said yes.

And this mom is feeling a lot less anxiety, a lot less dread. In fact, I’m feeling pretty excited about this school year. I’ll even try not to cringe when the phone rings.

Home Again…

…home again, jiggity–700-mile–jig.

Please extend a warm welcome-back to Adam, who turned 14 on the 15th:

and Neil, who acquired a hand-me-down laptop this summer:

I don’t even have an iPhone, but anyway, my boys are back, and I am complete again. I remember a few summers ago when I was lamenting to an acquaintance of mine (who did not have children) about how much I missed them. He said, “If you miss them so much now, how are you going to manage when they go to college?!” I bristled and tried to be diplomatic when I pointed out that they’re supposed to go to college when they finish high school, not preschool, as Adam had the first summer he spent away from me. Leaving home is “supposed” to happen when they’re eighteen or nineteen, not when they’re five. It’s not supposed to be like this, I would moan every summer. They’re so little! They’re supposed to be with me now. But that’s not how it happened for us. I’ve had to get used to not seeing my children for several weeks at a time, since they were very young. Sometimes it’s been outright surreal, year after year. I would liken it to how it might be if I were in the military, but I have no experience in that area, so that’s merely speculation. I do know that these last nine summers have been yet another lesson for me in letting go, in trusting, and in being open to something outside the typical parenting experience.

In any case, we are now in the midst of the end-of-summer shuffle: the filling out of registration papers and standing in line to turn them in and pay fees, the scheduling of IEP meetings, the inventorying of past school supplies and the shopping for what’s needed, the getting back in touch with friends, therapists, and teachers. But it’s good to have them home. It’s good to know that they’ll be comfortable when they start school in less than two weeks. It’s good to have things settled. It’s all good.

And for the record, I’m still going to miss them when they go away to college. But oh, when and if that day comes, I will be one proud mom.

Of course, I already am.

The Everyday

When you have a special-needs child, there are plenty of things that you wonder if your child will ever be able to do. So when they actually happen – when you hear your five-year-old say I love you, even though it’s echolalic, or when your child sleeps in their own bed, or doesn’t wet it, or when he holds a pencil for the first time, or pets a dog – we note the occasion with much fanfare, and rightfully so. We know the effort involved in making those things happen, how long we waited, how much we hoped. They are nothing less than miracles.

But milestones don’t happen every day, of course. If they start happening every day, they’re no longer milestones. They become part of our daily life, the status quo. They are the everyday. And sometimes I find as much hope in the everyday as I do in the milestones. Why? Because we can’t live from milestone to milestone. We live from day to day.

My son was diagnosed with autism at the age of three and did not start talking until he was five. In 1997, we didn’t know for sure if he could learn to talk. And so when he slowly got started – first with various stages of echolalia, then, when he was using more spontaneous speech, learning pronouns, articles, tenses, and syntax – I was overjoyed. It didn’t matter to me that his voice was always flat, usually expressionless. I figured it would always be that way, and I loved it. I never even hoped that he would develop voice inflection because I was just glad to hear his voice in the first place.

Two years ago, our regional autism consultant created a weekly social skills class for my son to attend at his school, so that he could learn to communicate more appropriately with his peers. The object of the class was to instill conversation skills and teach socially appropriate behavior as well as how to interpret gestures and non-verbal communication. But something unexpected happened, and I can only attribute it to the social skills class. About three months after he started the class, I began noticing that he was using voice inflection. And he was doing it appropriately, not just random variations. He was putting emphasis on the right words and his tone was no longer as flat. And he’s been doing that for almost two years now. The boy who, for so many years, could only parrot lines from Disney movies or Scooby-Doo cartoons when he wanted to interact with people is now regularly conversing with voice inflection. That is now my everyday. And that is what gives me hope.

It’s true, the milestones sustain us. They are remarkable, miraculous, and worth every bit of celebrating. But when you sit down and stop to think about it, when you realize, hey, we’ve been using the PECS cards for three months now and my child rarely shrieks at home anymore, thank God, that is your everyday. That is where hope lives.

I’ve had many different everyday realizations over the years. In fact, that one about the PECS cards was one of them, over twelve years ago. Then I had another one a few years later when I realized that we were no longer using the PECS cards. There have been many other everyday realizations, equally hopeful. But now, my son is speaking with voice inflection, an unexpected gift, and that is now my everyday. What’s yours?