Teen Autism » Future

Looking Not-So-Far Ahead

February 24th, 2010

A quick look at my Amazon Wish List conveys what’s been on my mind lately: my son’s future. I mean, it’s obvious when you look at the titles -

Now that Nigel is fifteen (and a half), we really need to get going on his transitioning plan. But how? How do you do plan for adulthood when your high schooler has the emotional maturity of a ten-year-old? He talks about wanting to go to college, which is great. But how can I realistically plan for that when he can’t handle the modified workload of his freshman year of high school?

Yes, Nigel can progress. He has proven that over the years. He is handling things now that I would have never thought possible, even three years ago. So it is within the realm of possibility that three years from now, he could be going through the admissions process for college. But as much as I believe in my son, that’s a big maybe.

You see, Nigel lacks executive function. And I don’t just mean that it’s challenging for him. I mean that it’s pretty much nonexistent. This is why he requires one-on-one assistance in his classes and two study period pull-outs every day to do his regular classwork (with constant assistance). Every advancement he’s made in Boy Scouts is because an adult (usually me) has walked him through it, outlined the work for him, and kept him on track. He is unable to do it himself.

And so, I worry if college is a realistic goal for Nigel. He is certainly intelligent - he’s just not able to do the work, nor is he motivated to. And college is a lot of work. There are no IEPs in college, no educational assistants hovering over him to keep him focused. There’s no modified curriculum. I know that there are programs to help people on the autism spectrum navigate college as far as housing and living independently. But they don’t write the students’ papers. They don’t do the work for them. That’s what executive function is for. Either you have it or you don’t.

I suppose that it’s something he could be taught, but that’s one of the things I tried to do when I homeschooled him for a year and a half. I taught him how to do math problems step-by-step, how to write essays, organize his thoughts, and outline. And it didn’t take. I don’t think his brain functions that way. Perhaps he wasn’t ready for it at the time, but it wasn’t that long ago, and at this point, time is of the essence.

All I’ve ever wanted for my children was for them to feel loved and to lead happy, fulfilling lives. I know that doesn’t have to involve college, but Nigel’s dream of being an astronaut does. And there are times when I wonder if all the years of therapy got him to a really good point, but it’s not good enough. We got him to the point where he can communicate verbally and go to restaurants and grocery stores and interact with people and make a grilled cheese sandwich and ride his bike to school and back independently, but he can’t work independently. And while I am so happy and proud and grateful that he is able to do all those things that were impossible for years, that glaring difficulty remains. Once more with feeling: he can’t work independently. And I don’t know what that means for his future.

A Normal Man

December 13th, 2009

Sometimes, as a mom blogger, I get the feeling that my kids somehow tap into the wavelength of a post I’ve written - before I even post it. And then they come to me and totally disprove whatever I’ve written about them.

For instance, the night that I wrote “Polite Conversation,” about Nigel using lengthy delayed echolalia at the dinner table one evening, he came into my office - minutes before I posted it - and began what was undoubtedly the most incredible conversation I’ve ever had with him.  I honestly didn’t realize that he was capable of a serious back-and-forth discussion regarding intangible ideas for over half an hour. And he revealed so much more about himself during the course of it.

He started off by running into my office, eyes wide. “Mom! Have you heard of something called ‘home births’? Because I think I want to have my children that way and I wanted to see what you thought of it.”

Definitely didn’t see that coming. “Yes, I’ve heard of them. But I think that you should talk to your wife about it first. And I don’t think you need to worry about that for a long time.”

“You mean when I’m 18?”

(!) “No, I think that’s a bit early. You need to have a good job and a home for your family before you start thinking about having children.”

“20?”

“I think that’s a bit early also.”

“Well, I need to be prepared.” That’s six years of Scouting talking.

Then he sat down on a chair that’s across from my desk, and the topic changed to dating. He mentioned, quite wisely, that he needed to have a girlfriend before he could have a wife, and that there didn’t seem to be any girls at the high school who really understood him. He said that some of them were nice to him, but he was worried that they might not be sincere. “What if they ask me out on a date, but they’re just trying to trick me? How will I know the difference?”

My heart ached to hear him say it. He already knows that he is vulnerable to this. I told him that one thing that will help is to be friends with a girl before dating. And then, I pulled out my new copy of The Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism by Temple Grandin and Sean Barron. It had just arrived from Amazon mere days before, and I had been waiting for the perfect opportunity to tell Nigel about it. I couldn’t have planned this better if I tried.

He seemed interested. I asked him if he wanted to read it himself or if he wanted us to read it together, and he opted to read it on his own. I was thrilled by his positive response! Somehow I had tapped into what he needed - before he even asked. But of course, we autism parents do that all the time, especially when our kids can’t ask.  

We talked some more. We conversed. He made eye contact, he posed ideas and waited for my response, and then he responded to my ideas. Sometimes he added even more to his response. His voice inflection was perfectly appropriate, he tried new words and asked me if he used them correctly, he was fully engaged. My heart was bursting with joy, because for many years I didn’t know if such conversations could ever take place.

Then at one point he leaned forward in his chair and said, “I think I’m different from other autistics because I want to be a normal man and have a wife and family.”

I tried not to let my face show too much emotion, but lately my son has been causing me to tear up a lot. “Oh, honey. Yes, your autism makes you different and makes some things more difficult to achieve, but don’t ever think that you can’t be a normal man if you don’t have a wife and family. Whatever you do with your life, you will always be a normal man. In fact, better than normal.” I got up, walked over to him, and gave him a hug, which he stiffly accepted (the usual for him).  

He left then, book in hand, and I couldn’t help but cry. I always think about my son’s future and how different things will be for him. But what I hadn’t thought about is the now unmistakable fact that he is also thinking about his future, his adulthood. And then I remembered something that I had forgotten to tell him. Something I wanted to make sure he knew. I dried my eyes and walked to his room.

“Nigel, I just wanted to tell you that when you’re an adult, I’ll still be here to help you, to talk with you. I’ll always be there for you.”

He paused a moment, taking that in. Then he said, “Good, because I don’t know how to get grants for college.”

Oh, honey. I got you covered.                                                                                

The Talk

October 29th, 2009

     *

Usually when parents think of “the talk,” we think of how to approach that first time that we tell our kids about sex - and all the other ensuing (hopefully much later) talks on the subject. Or the talk about drugs and alcohol. The talk about the importance of not stealing even if something “only” costs 25 cents. So many talks we parents have with our kids.

Add to that all the other difficult talks we have to have with our special needs kids. The talk about what autism is, and that he has it, or telling his brother about it. The talk about how sometimes kids are not really your friends if they try to get you to do something. Or if they say that you’re “entertaining.”  And then, when the child with whom I’d wondered if I’d ever have a conversation more involved than “Would you like a sandwich or eggs for dinner?” progresses to the point that he tells me when he’s turning 15 that he would like to get his driver’s permit, I realize that I have to have yet another difficult “talk.” Because as far as he’s come, as glad as I am that when he was six or seven he could actually respond that he wanted eggs for dinner, he’s not ready to drive. No way. And it’s not because I’m not ready to let him drive. It’s because he’s still far too distractible, impatient about traffic (in a scary way), and lacking judgment. Sure, many teens are that way. But with him it’s exponential. And letting him drive now would not be good judgment on my part. In fact, it would be insanely irresponsible.

But he really wants to drive and actually started talking about it when he was twelve. So this talk has been looming in the back of my mind for three years. And I’ve got to let him down gently. I’ve got to figure out a way to tell him that there’s yet another thing that his autism is going to affect, right when he’s gotten to a point where he’s started to accept it.

So I decide to do it during a time when he’s relaxed but somewhat engaged in an activity that he enjoys. And when it’s just the two of us carving pumpkins on a Saturday afternoon (since Aidan can’t handle the smell and doesn’t participate), I take a deep breath and dive in. I dance around the subject by casually mentioning some of the positive ways in which autism affects him  (learning to read early, being good with maps and remembering facts), and then I mention some of the difficult aspects (delay with learning to talk, his sensitive hearing, regulating behavior, etc.). I forge ahead and say that some people with autism need to wait a few years before they’re ready to start driving (as well as some who don’t have autism). 

“But I don’t think I need to wait,” he says, his voice calm but purposeful as he carefully saws off the top of his pumpkin. “I think I’m ready for my permit.”

I gently remind him of how impatient he gets with traffic and that his response indicates that he needs to work on that before he can start learning to drive. I tell him that being good with machines and having the ability to operate the vehicle (his argument of readiness) is not the most important element of driving. That he needs responsibility, awareness, and judgment to safely drive a car.

He is still eerily calm. Is he actually understanding? I wonder, I hope. He quietly scoops out pumpkin seeds, seeming to take all of this in, although I can feel his disappointment. Then he stops briefly and asks, “When?”

Gulp. I should have expected that question to be part of the equation. No stranger to being put on the spot, I remember Mama Edge’s comment and quickly come up with a plan. I tell him that he needs to demonstrate three things to me whenever we’re in the car - patience with traffic, focus on (my) driving and not being distracted, and awareness of other vehicles, drivers, and pedestrians. I tell him that if he does all of those things in the next year, then when he’s sixteen we’ll discuss enrolling him in a driving class. I’m not convinced that he’ll be ready in a year. But I can’t dash his hopes.

“Does that sound good to you?” I ask. “Are you okay with that?”

“Yes. I’m okay with that,” he says in his usual flat voice. He won’t make eye contact, but he is calm, accepting. I praise him for his maturity, tell him that this is the first step in demonstrating patience and responsibility. For years now, he’s been aware of the limitations due to his autism, but he’s learned to accept it and work with it. He may not be ready to drive in a year, but someday, he will. Autism will often delay him, as it did with talking and so many other things, but it won’t stop him. This I know.

* Nigel’s is the happy one on the left

The Funk

October 22nd, 2009

Silver Falls State Park, OR

When I was in college, my roommates and I hosted a P-Funk party that people still talk about. We dressed up and wore wigs. We played records (yes, records) and really got down. But that’s not the kind of funk I’m into now. A few months ago, my two teen boys invited some friends over (more teen boys) for a sleepover, and the next morning, as they slept and I walked into the game room to survey the damage (almost as wild as my P-Funk party), I was hit with a wall of funk. Teenage-boy funk. Sweat, dirty socks, and (um, how to put this delicately?) expelled-air kind of funk.

But that’s not the kind of funk I’m in now. You know the kind, I’m sure - things are going mostly okay, you’re working, taking care of the kids and the household, but something doesn’t feel right. And in spite of all that’s good in your life, in spite of counting your blessings, it’s still hard. Right - nobody said life was supposed to be easy. But is it supposed to be hard?

No, I tell myself. I’m just in a funk. I’m at a crossroads with my finished-but-still-unpublished book, unfulfilled with my day job, feeling like I’m between treading water and sometimes barely keeping my head above it. So when Nigel, who turns 15 next week, told me last night that his case manager at school said to ask me if he’s going to be getting his driver’s permit (what?!), I felt like I’d been hit by a wall of water.

I didn’t know this was coming, although really, I did. I just didn’t know it would be this week. But what shocks me more is that I was just talking about this with my good friend Carrie less than a week ago. (Got Carrie? If not, head on over there immediately. You’ll be glad you did.) I was telling her how I didn’t know how to tell my son that he’s not ready to drive yet, in spite of how much he wants to. I told her how I’ve been putting it off, not sure how to approach it, foolishly thinking I still had some time. And then, something amazing happened, as it usually does when we’re with someone who listens and understands. Out of my mouth tumbled, “Maybe he just needs to hear it from me” or something along those lines. And I knew that I had to have the talk with him soon. I just didn’t get it together quick enough. So, I copped out. Last night, as I had three different dinners cooking at once while he stood there expectantly, I said, ”Maybe in a few months.” I just couldn’t do it right then.

Because last night my other son needed me more. Last night Aidan was still recuperating from a vaccine reaction. Yes, I said it. I’m going there. He had his 13-year physical two days ago (a couple months late, but oh well), and the nurse spouted off at least four different vaccinations or boosters that he “needed.” We decided to go with one - the meningitis. It was the one that I felt strongest about, so we took it. Then I dropped him back off at school and I went back to work. In less than an hour, Aidan told me later, his arm was numb, and he had a headache and abdominal pains. My poor sweet boy didn’t want to disturb me at work, so he suffered through it at school and told me when he got home. He slept badly that night, still experiencing the same problems. He stayed home from school the next day, and by that evening (last night), he was feeling better (although his arm still felt strange).

I went in Aidan’s room to talk to him before he went to sleep, as I do every night. I’d had an epiphany, and I wanted to share it with him. My younger son has sensory processing disorder - gustatory, olfactory, tactile, proprioceptive, and vestibular (worse than Nigel in all of these areas). And when Aidan was a baby, he cried almost constantly - but it didn’t start until he was two months old. That was when he received his first round of what turned out to be no less than 16 vaccinations by the age of 18 months. (By comparison, I’d received 6 vaccinations by the time I was 18 months. I guess I should consider myself lucky to be alive, as undervaccinated as I was.)  Aidan knows that he was a crier. He’s heard the war stories. But, as I told him last night, now we know why. I think that it took months for his little body to assimilate the vaccines, and by the time he got through one round, it was time for another, and then another. His body was flooded, overwhelmed. And I believe that experience contributed to his sensory processing disorder.

Maybe I’m reaching. Maybe it’s my funk. I don’t think vaccines are bad. But once I made that connection with Aidan’s babyhood, I felt like I’d solved a 13-year mystery. And Aidan agreed with me; both of us achieved some closure. As I left his room, I blew him kisses from the doorway, as I do every night. Often he blows them back to me. Last night, I shut the door and stood in the hallway a moment. I heard him continue to blow kisses to me even after the door was shut.

I can only hope that when I approach Nigel about the driving issue that I can word it in such a way that he can understand.  I don’t want him to see it as a punishment, as a wall of water crashing down on him. I hope that what I discussed with Carrie turns out to be right - that he just needs me to tell him. Maybe once I talk with him and get it all out on the table, I’ll feel better. Free, even. Free of the funk.  

It’s Time

September 2nd, 2009

This is the week for me. The mad-dash week before school starts. All parents know how it is with registration, getting school supplies, checking schedules, that kind of thing. And all special needs parents know how it is with the added emails, calls, meetings, walk-throughs, etc. that are necessary in getting our children set up with the support systems they need to be successful. In a transition year - either starting at a new school or at a new level of school - those efforts are doubled.

This year Nigel starts high school, so he’s at a new level and a new school.  With all the stress I’ve been experiencing lately, I feel like sitting in a corner and rocking, stimming my stress away. So far it’s gone smoothly getting things set up for him, but there is so much time, effort, and energy (mental, emotional, and physical) involved that I feel like I am nearing a breakdown. I so want this to work for him. I want him to be comfortable and confident. I want his needs to be met. I want him to be accepted and appreciated. I want him to focus and learn and also have fun. I don’t want to worry about getting calls at work about behavioral issues because someone has purposefully pushed his buttons. I don’t want to worry about what our options are if this doesn’t work. Please, please, please God, let this work. Let him be happy.

We went to registration today, and then met Nigel’s new case manager. How must this woman feel? I’m sure she’s aware of the fact that we special needs parents place so much hope in her. I know she’s aware of that. In fact, she must have picked up on my desperate vibe, because at one point she said to Nigel, “I’m your school mom.” No one has ever said that before. And I wanted to cry and hug her and thank her because she obviously gets it. She knows how important her role is. I sometimes wonder if these professionals who work so tirelessly with our children, who are devoted to their success and well-being, feel the strain that we parents feel at the beginning of the school year. This combination of hope and anxiety. I should come up with a name for it. After all, it’s not just at the beginning of the school year that I feel it.

Anyway, when she said, “I’m your school mom,” Nigel gave a small, cute smile, like he thought the idea of a “school mom” was silly. But I sensed that it comforted him, and he understood her meaning. In that brief meeting, she really listened to him. I could tell that he felt respected, and comfortable. The regional autism consultant, who has known him since his nonverbal days, was also at the meeting, talking about his strengths and making recommendations. His speech therapist from the past three years was there, and we found out that she would continue to work with him and facilitate the social skills class that he will take. I feel very optimistic, even though the anxiety is hovering in the back of my mind.

However, the bottom line, the “take-away,” is that Nigel didn’t just attend this meeting. He participated. He was slow to answer at times, rarely made eye contact, and was frequently off-topic with his requests and comments, but he was an integral person. And he even remembered to cover his mouth when he yawned, which shocked me after all these years of telling him it’s the polite thing to do. I swear I think it was the first time he ever did it on his own.

But at this meeting he accomplished things that were so much more important than being polite. He spoke up and discussed his needs. He told us which subjects he needed to take at the lower level, and which he didn’t. He mentioned his experience with bullying. He advocated for himself. And I am sitting here in tears as I write this, because the boy who, at the age of five, could not tell a doctor his own name is now advocating for himself. He really is. And I sense that this is only the beginning. It’s like he’s trying to tell me, Mom, I got this. I know it’s not time for me to step back yet. No, there is still much more work for me to do.  But it’s time for me to let him step up. He’s part of the team. Yes, he is.

Lucky

May 28th, 2009

“You’re lucky he’s so high-functioning.” - people who mean well

*

I’ve heard it a few times over the years. And I’ve never been sure how to respond. I mean, the first time it was said was by someone in a park when my son was running and laughing. He was four and non-verbal.  So . . . not sure how non-verbal equaled high-functioning. Not sure how a complete stranger could make an assessment like that after observing my son for one minute.  Perhaps, since it was 1998, the person didn’t really know much about autism and thought it was a predominantly physical disability. Perhaps if someone had turned on a leaf blower and my son had started screaming, the person would not have said that. Perhaps if she had asked him his name and not received an answer from him, she might have thought differently about his functioning level. Not sure. I really didn’t have time to get into it with her. A second later, Nigel darted for the street, and I ran after him. High-functioning.

High-functioning can be misleading. Now, people see him as a high-functioning verbal teen. And that’s what he is. But what they don’t see are the years and years behind that high-functioning teen. The years of language acquisition through echolalia, over a decade of speech therapy, and daily life. The years of learning to filter sensory issues so that he can function semi-comfortably in various environments, even those as basic as classrooms, restaurants, grocery stores, and public restrooms. The years of learning appropriate and inappropriate behavior, with which he still struggles.

When people see a high-functioning verbal teen, they don’t see the daily medications he must take to manage his behavior and his anxiety. They don’t see the daily doses of risperidone and sertraline. They don’t see the subdued quality in his eyes that his mother has had to get used to seeing, because she knows it helps her son to achieve his goal of being mainstreamed in his local public school. Without the medication, he would not be able to manage his behavior. That is one way that high-functioning autism affects him. Being able to communicate is huge, but it is not the only issue.

When people see a high-functioning verbal teen, they don’t see how he’s been bullied and harassed and taken advantage of. They don’t see his trusting nature, they don’t see his lower emotional age, they don’t see his vulnerability. They don’t see how because he has to spend his days working so hard  - to filter the sensory issues of daily life, focus on trying to be appropriately social, and try to concentrate on school work - that he is exhausted. That sometimes it’s all too much for him, being autistic in this world.

Yet he continues to try, he continues to want to. He has a certain joie de vivre that I envy. Because of his autism, he doesn’t understand certain social obligations that will affect him very soon, as he enters adulthood. He wants to be an inventor when he grows up - an inventor of time machines. And while the finished product would most likely be quite lucrative, he doesn’t understand that he needs to have some type of income while he’s inventing his time machine, so that he can buy food for himself and pay for his shelter. When I try to explain this to him, he suggests that we should all live like our early human ancestors, in a very primordial sense. He says this with conviction, the same conviction with which he discusses his time machine. I don’t see that going over well in a job interview. High-functioning.

There are still so many things that others don’t see. Because they see a high-functioning teen, their expectations are higher, and while we should never sell our ASD kids short in what they can accomplish, we as parents know where the difficulties lie. We know how their delays in emotional and social development still affect them. We worry about how they will interact with people who don’t know them when we’re not with them to facilitate. We know that there are things about living in our society that they cannot understand, such as having a job and paying the bills. Yes, my son is now high-functioning, but he has fought tooth and nail (literally, sometimes) to get there. If there was any luck involved, it was because every time he’s wandered away or bolted into the street or lit something on fire, he’s never been harmed. So yes, to everyone who’s ever said that I’m lucky, I am.  High-functioning or not.

Wing Check

January 20th, 2009

I remember the public library near my home where I grew up - in a suburb twenty miles east of Los Angeles. I felt comfortable there, surrounded by books and like-minded people. I loved to go there, whether it was to find a cozy novel or to do research for a report or essay (definitely pre-Internet). When I was fourteen, my parents would drop me off with instructions to be standing out front for pick-up in an hour, which always went by too fast.

I still love libraries, especially small ones like the one I grew up with and the one in the small southern Oregon town in which I currently reside. Once every two weeks, Nigel and I walk the third-of-a-mile distance from our home to the library. I read magazines while he peruses the juvenile shelves for his favorite book series, Eyewitness, covering topics as varied as the Civil War, Ancient Greece, pirates, knights, and everything in between. After a half an hour, he has made his selections, and we check them out via the self-checkout (which he loves), and then we walk home. Often, since it is a small library, we need to request certain books through the inter-library loan service, and that is what Nigel did last week for the book The Neverending Story. And they called today to let us know that it had arrived.

I was busy working, trying to meet a deadline, and of course Nigel had to get his book right then. I thought for a second. He is fourteen, he can communicate, and he wants to be independent. He can do this, I thought. I took a deep breath and the words came out as I exhaled: “Would you like to walk to the library to get it yourself?”

“I can go,” he said, some excitement in his voice. “I know how to get there. I can get the book myself.” He quickly went to put on his shoes and jacket, as if worried that I would change my mind. “I’ll watch for cars,” he added.

I opened the front door for him as he left. “Be careful,” I said. “And come right back after you get the book.” I checked the clock and allotted enough time for him to walk there and back, added a few extra minutes for distraction, and noted what time I should start to worry if he wasn’t back yet. Ha! Start to worry. Like I wasn’t going to worry the entire time he was gone.

A minute after he left, some idiot on a scooter sped down our 25-mile-per-hour residential street, and I worried about Nigel reacting to the sound, or worse, not getting out of the way fast enough. I worried about him crossing the busier street that the library is on, I worried about someone luring him into their house. I worried about him darting away from bees and other flying insects, I worried about him leaving his library card at the library and having to go back for it (which has happened before, even when I was with him).

But these are the baby steps we must take. I would love for my son to at least have a semi-independent life, and I must start fostering that. I must let go a little. I have to trust. I’ve laid the groundwork, and now it’s time for him to test his wings a little. And it’s time for me to let him. I just hope that the idiot on the scooter is long gone when Nigel makes his way back to the nest.

It was silly of me to think that I could focus on my work while Nigel was gone. He has gone out on his own before, for bike rides around the neighborhood or to go to a friend’s house, and I worried those times, too. I don’t suppose it will get any easier, especially as he gets older and wants to do even more things independently. And I know that this is something all parents go through to a degree, especially since I have a younger, non-autistic child and go through it with him. But it is different - they are different.  They have coping tools and social skills to see them through many situations that Nigel does not, making him far more vulnerable. But I can’t deprive him of the satisfaction of walking to the library himself to check out a book if he is able to. And I believe that he is.

Right on time, actually early, he walks through the door, book in hand and library card in pocket. “Everything go okay?” I ask. “Fine,” he says, and shows me the book. It’s probably the same exchange that took place with my parents when they picked me up at the library all those years ago. And it feels just as good, all these years later.

Posted in Future | 7 Comments »

A Little Hope

December 14th, 2008

Yesterday I attended the first family-centered support group meeting for ASD families in southern Oregon. I’ve previously attended other support groups for parents, and they were always welcoming, but I felt like something was missing. I would leave without feeling better than when I had arrived. It wasn’t the type of support group I was looking for.

This one yesterday was different. It was so affirming to have the kids there. The parents, the ASD kids, and the siblings all there, all interacting - it just felt right. I met other parents also at the teen stage as well as others just starting out. The level of understanding was inherent, as was the bond. I saw tiredness on some of their faces, and stress. But I also saw hope.

And the hope was there because the older kids were there. I saw some young parents watching Nigel, and that gave me a sense of pride. Because I know how far he’s come. I still have many concerns about the future, of course. But if Nigel, just as he is, can give some young parents hope for their child’s development, that’s something. That’s really something.

I did the same thing when I went to the autism and puberty seminar that I attended in October. One of the presenters at the seminar was a higher-functioning autistic adult. All the parents were rapt as we listened to her, watched her, absorbed her. She was hope to us, those of us with teens. She patiently answered questions, related stories of her childhood and teenage years, what she had been like. We all wanted to know when she had started talking so that we could compare that to our own children’s past development, and look ahead to how far she progressed, thinking that the potential was there for our kids. Of course, there are no guarantees, and we know that. But still. We hope.

If you ever have the opportunity to attend a seminar where an autistic adult will be presenting, I encourage you to do so. You will come away with a sense of understanding that you couldn’t possibly get from reading a book. You can’t look at that person and think, That’s what my kid could be like. But looking at them and just experiencing their presence will give you hope. And we could all use a little more of that.

To Drive or Not to Drive

December 7th, 2008

M at Incipient Turvy, one of the blogs I love and read regularly, recently commented on my stuffed animal post. The thought of him searching strange word combinations to try to find Teen Autism gave me an idea for a new series of posts:  Sunday Searches. Each week I’ll write a post about a search that was used to find this website. I’ve already got a list going from months ago. Some are funny, some are serious. And some of them are really worth discussing.

Here’s this week’s search: “autistic teen does not want to drive a car”

First off, that’s probably a good thing. I wish Nigel hadn’t started talking about wanting to drive. I’m fine with him driving go-karts, but about a year ago, he started talking about when he turns sixteen and gets his driver’s license. Like he’s assuming it’s going to happen. Two years from now? I don’t think so. He gets distracted enough while just walking down the street, let alone operating a moving vehicle down the street. He has this idea in his head that if he can physically drive the car and knows the mechanics of it that he should be able to have his license. About six months ago, he reached in the glove box and pulled out the car manual and said, “I need to start studying this so that I can get my driver’s license when I’m sixteen.” Fortunately we were still in the driveway or I might have driven off the road in sheer panic.

Of course, there are autistic adults who drive. Temple Grandin, who drives, has said this about the subject: “I think it’s difficult for many people on the autism spectrum to drive because there is so much going on at the same time and so much to pay attention to at once.  For people on the spectrum who want to drive, I recommend a full year of driving on easy roads with no traffic before venturing out on freeways and busy intersections.  Once you don’t have to think about steering, braking or pushing on the gas, it’s much easier to multitask on busy roads.”

I suppose that when Nigel’s emotional age catches up, I might consider letting him learn to drive. His current emotional age is about eight, even though cognitively he is at or above his actual grade level. So since he’s about six years behind emotionally, I figure that in about seven or eight years he will reach the emotional age of 16 (when he’s in his early twenties). Then we’ll look at his sensory processing, his maturity, and we’ll entertain the idea of him possibly getting his driver’s license. Until then, go-karting will have to do. And I’ll just keep wishing that our local Family Fun Center offered frequent driver rates.

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Right on Schedule

October 15th, 2008

The future will arrive when it’s ready. Whether it seems so or not, your life is right on schedule.                                       -clipped from an old horoscope, author unknown

I have spent most of today thinking about the future, specifically, thinking about the subjects of yesterday’s post. I sat at my desk for an hour last night writing it, carefully wording what I meant to convey, not sure if I was doing it right. What I neglected to say was this: Even if Nigel doesn’t progress any further, even if he hadn’t progressed to the point where he is now, I would be fine with that. I hope for his progress, but not because I want him to change. I am so happy with him the way that he is, the way that he’s always been. I hope for his continued progress because it would open more doors for him. It would enable him to experience more of life, and that is what he wants, and I want that for him. We all dream for our children. Autism doesn’t put an end to that.

And so this morning, having been up late thinking about what I had written, obsessing about the future, I came and sat down at my desk, my big L-shaped desk with all my projects spread out all over it, and my framed family photos of my loved ones smiling at me, and my soothing candles and bamboo, and my eyes fell on that little quote I had taped to the bottom of my monitor. The future will arrive when it’s ready. I needed that reminder today more than I usually do.

Whether it seems so or not, your life is right on schedule. And so is Nigel’s.

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