Category Archives: Future

Commencement

When I started this blog in 2008, I had this vision of the post I would write when Neil graduated from high school. Obviously, I would write about how incredibly proud I was of him, how much he had taught me through the years, how consuming my love was for him, and how hopeful I was for his future. And I would post a short video of him receiving his diploma. I imagined that one of my relatives would be filming so that I could watch my son, who had always tried so hard, harder than anyone I know, and struggled so fiercely. I envisioned that the person filming would film me for a few seconds standing there, crying as I watched him, and when I noticed that they were filming me I would hide my face and wave them away, saying, “Film him, not me!” And the person would zoom in and film Neil, focusing on his beautiful, serious face, self-aware of his accomplishments and determined about his future.

*

All his life Neil has told me, whether through behavior or words and often both, what he needed. And I have learned to listen (and be attentive). He would tell me, by screaming and bolting, that a sound or an environment was too loud, too overwhelming, and he had to get out of there. He would tell me by rubbing his lips until all the skin around his mouth was red and cracked that his anxiety level was too high. And later, when he had the words to do so, he would beg me to homeschool him because mainstreaming was too torturous with the bullying he endured. After a year and a half of homeschooling, he would tell me that he wanted to try some medication that would help him to regulate his behavior so that he could go back to regular school, because he never stopped trying. A year later, he would tell me that he felt he had learned to regulate his behavior himself and that he no longer needed the medication. And he was right.

Two weeks ago, after a discussion about the dismal state of his grades and the fact that he is not aware of any executive function skills class that he is supposed to be in, he told me that he thinks he needs to get a modified diploma. His anxiety level has been so high that he has been pulling out his hair incessantly for weeks. He feels completely overwhelmed. And he is becoming aware of his emotional delay. Just a few weeks ago, at the grocery store, out of the blue he said, “I think the reason that I still like stuffed animals and Lego is because in my heart I’m like someone younger than myself.” I tried not to cry at his brave, self-aware statement and told him that I think he’s right, that his teachers and therapists have documented it over the years. I gently explained to him that at first they assessed him to have a six-year emotional delay, but somewhere along the way he gained a year, and so at age sixteen, he is like an eleven-year-old. “Yeah,” he said. I could see the wheels turning as he processed this.

Here’s Neil at age eleven. How could I possibly expect this little boy to function as a high school sophomore? How could I think that the workload wouldn’t overwhelm him? That even though he was intelligent enough to understand it, he couldn’t handle the amount of it? Along with all of the social challenges and sensory issues he still battles on a constant basis? How could I think that the extensive support and assistance he receives both in and out of school would be enough? It’s not just about his lack of executive functioning. It’s about emotional maturity. How could I expect him to receive a regular diploma? That he would somehow figure it all out and navigate everything when he’s emotionally an eleven-year-old? How?

I’ll tell you how: Dreams. My son taught himself to read at age 3 ½, before he could even talk, and so I dared to dream. But don’t worry – I’m not throwing my dreams out the proverbial window just because he’ll be getting a modified diploma, because I now accept that that’s what he needs. I’ll still have dreams for my son, but those dreams are now realistically calibrated. What’s the problem with getting a modified diploma? It limits post-secondary educational opportunities, but with time and support perhaps in a few years we will be looking up online college degrees. And while I know that extended high school is a possibility for some students in similar situations, it’s not a good option for Neil. He’s comfortable at his high school, but he doesn’t want to be there any longer than necessary. He knows that option won’t work for him, and I agree.

No sooner had I indicated my support for his need to get on the modified diploma plan than he stopped pulling out his hair. I told him that it wouldn’t go into effect until everything had been written into his IEP at the upcoming meeting, and he understood. His relief, and his appreciation, was palpable. I had given him the autonomy to make a decision about his life and the respect and esteem that goes along with doing so. He knows himself. He knows what he needs. He always has.

*

For every bit of Neil’s progress over the years, I am truly grateful, and I am so proud of my son. But in all honesty it was painful for me to write this post. To know that after everything we’ve been through and all he’s accomplished, this is the best we can do. Mostly, it was painful for me to let go of a dream. Oh, I can say that I’ve “calibrated” my dream, but in reality, I had to let it go. And that’s okay. Because I’ve learned that my dreams for him are not necessarily his dreams for himself. And the fact is, when I look ahead to his graduation two and a half years from now, the particulars of his diploma will be different, but nothing else will. Someone will still be videoing it, I’ll still be crying, and I’ll still feel all the things that I would have felt had he received a regular diploma. I’m certain of that. And I’m certain that Neil’s beautiful, serious face will still reflect the awareness of his accomplishments, and his determination for the future.

Please

We all have dreams for our children. Autism doesn’t take away our dreams – it only changes them according to our child’s abilities. And so, we still dream.

My dreams for Neil have certainly changed over the years, but I still have them. And so does he. Some of those dreams have come to include the possibility of a post-secondary education, which seems out of reach given his academic challenges and the lack of local resources to address those challenges. So, we found a resource – a special school – that can teach him the skills he needs to be able to work independently, and I foolishly believed that all I needed to do was fill out a bunch of paperwork and enroll him.

I had no idea that the administration at his current school might not agree that this is something that he needs. I had no idea that they would be reluctant to change his IEP to reflect that his academic needs would be better met in a non-public school setting. I had no idea that the minor hoops I envisioned jumping through would turn into major hurdles.

The special school we would like Nigel to attend costs more per year than my entire college education did. Even when I sell my house I will not be able to pay the tuition out of pocket. However, we can receive funding if the change is made to his IEP, if it designates that his needs would be better met in a non-public school. I approached the special education coordinator at Neil’s current school, and she discussed it with the district sped coordinator. They declined our request, stating that Neil has made progress and “is capable with supports to maintain grades.” We have an IEP meeting scheduled next week to discuss this further. Neil’s father, who lives 700 miles away, will attend via conference call.

Yes, Neil has grown. He has come so far. But the fact is that the progress he has made has been behavioral and social. And while this is indeed wonderful, his academic needs are not being addressed. The grades that he “maintains” are heavily modified. The teachers do not even assign him homework! He can barely complete the class assignments, even with constant assistance. I know that they like him and care about him, but it appears that they are just pushing him through. If he cannot work independently, he will not be able to attend college. It’s wonderful that he receives so much academic support; the special education coordinator helps him every day to do his work. But he needs to learn the necessary executive function skills to be able to do it on his own, and I don’t expect him to learn that in a public school setting.

I know that some of the professionals who have worked with my son have read this blog before and might be reading this post. I really hope that they do. Because I want to say this to them:  Please. Please think of Neil’s academic needs. Please think of the dreams that he has. Please give him the opportunity to utilize the best academic resource that is available. He needs more specialized instruction than what you are able to provide. I do not fault you for this, especially since he is only the fourth ASD student to attend your school. I truly appreciate all that you have done for my son. Please just do this one last thing for him. Please.

Questions

The Scene:  Interior of suburban family home. A mother, exhausted from just another regular day, collapses on the couch in her living room. She has just completed her responsibilities for the evening, taken a shower, and dried her hair. Alone, looking forward to some time to herself, she takes a deep breath and picks up a book that she hadn’t been able to get back to for several days. A minute later, one of her teenage sons opens the door of his room and walks down the hallway. He stands at the entrance of the living room, waiting for his mother’s attention. She turns her head to look at him, thinking that he’s going to announce some historical or scientific fact that he has just discovered. Or that he’s going to remind her once again about the Goonies 25th Anniversary Event that he wants to attend the following month, in a city four hundred miles away. Or that he’s going to announce that he has to go to the bathroom.  His tone is serious as he begins talking.

Teen son:  My path is not out here [gestures to indicate the area in front of him], but in here [lays his fist over his chest and pauses before continuing.] Even if I find answers at that school in L.A., I will still have questions.

Looking Not-So-Far Ahead

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 Neil 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, Neil 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, Neil lacks executive function skills. And I don’t just mean that it’s challenging for him. I mean that they’re 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 Neil. 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 Neil’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.

Down Time

I am relieved to report that I am almost back to normal, after being sick for a full week. I haven’t been that sick in over eight years! In recent years, I’d been guilty of taking my health for granted – you know how when you’re well, you sort of forget what it’s like to be sick? Well, I do, since I’m not sick that often. Let me tell you, I will definitely be more conscious of my good health from now on.

But something else happened while I was sick, something I hadn’t expected. Included in all of the wonderful get-well wishes I received from my friends and family (thank you, everyone!) was a little advice in Carrie’s comment:  “. . . in the meantime, try to enjoy the down time!” It’s not something I’ve ever thought of doing while sick; it just either didn’t occur to me or wasn’t an option in the past, when the boys were younger. And granted, I still had to drag myself out of bed this week to get them off to school, pick them up, and make their dinner.  But aside from that, I actually took it easy. It’s sad how I have to get really sick before I force myself to slow down – because by then it’s not a choice. And so, I found myself with a little down time. I felt pretty lousy during it, but at one point I just sat on the couch, wrapped in my soft, warm robe with a down blanket over that. I drank a cup of tea. And I did nothing else. I just sat there. What an experience!

I just sat there and tried not to think about much of anything, like some of my sporadic attempts at meditating (which I haven’t done for a very long time). Thoughts would come, I would acknowledge them, and let them go. Thoughts of Neil’s future, of my own, and how intertwined they will be. But the great part was that I didn’t attach any emotions to the thoughts, which was very different for me. Usually all of my thoughts have emotions attached to them. I can easily get emotional about things that have never even happened, just by thinking about the possibility of them. But somehow the illness gave me a sense of distance – a bit of a novelty, I must say.

So I rested. I read. I drank a lot of herbal tea. I forced myself to stay away from the computer. For the first time ever, I read the current National Geographic issue before the new one arrived (barely – the new one arrived today and it looks amazing). I noticed that National Geographic does not use a hyphen in “email,” so now I feel justified in not doing so. Who knows if I would have noticed that had I not been sick? All these hidden benefits – down time, thoughts without emotion, proofreading insight. I’ve been missing out.

But now it’s back to the grind – and Christmas a week away, no less. Fortunately, because I had pushed myself prior to getting sick, I have nearly all of my shopping done. And although I’m not completely 100%, I feel calmer than I did a week ago. I feel sane. I feel like I’m ready for the busyness of having holiday guests, cooking and baking, and getting the boys ready to go to L.A. to visit their dad. A lot to do, but I am rested and ready. I didn’t see it coming (getting sick) and thought I would totally fall behind, but it turned out all right after all, as things often do when you don’t fight what is. Sometimes, you get the rest you need, and you might even learn something while you’re at it.

A Normal Man

Image credit: simon gray 

*

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 Neil 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 Neil 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.

“Neil, 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

     *

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 Adam 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 strong emotions, etc.). I forge ahead and say that some autistic people need to wait a few years before they’re ready to start driving (as well as some people 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 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.

* Neil’s is the happy one on the left

The Funk

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 talking about 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 there’s another 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 Neil, 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 Adam 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, Adam 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 Adam’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 Neil in all of these areas). And when Adam 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.)  Adam 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 Adam’s babyhood, I felt like I’d solved a 13-year mystery. And Adam 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 Neil 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.

Image credit: Oskar Mellemsether

Lucky

“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

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.