Category Archives: Development

Steps

Neil, age sixteen, calmly noticing that there is only enough milk for one bowl of cereal:  “I’ll just have toast this morning.”

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At the age of six, after he had spent three years in an intensive ABA-based program, Neil started Kindergarten in a contained (non-mainstreamed) classroom through STEPS, Specialized Training in Education Program Service. It was a two-year program, and he did so well after the first year that I made a huge mistake, one I still regret: I tried mainstreaming him before he was ready. The results were disastrous, and fortunately we were able to have him go back into the STEPS classroom after several agonizing weeks of the regular. He seamlessly returned to STEPS and finished out his second year, making even more developmental strides.

Almost ten years have passed, and I’ve never forgotten the STEPS classroom and how beneficial it was for Neil. But to be honest, usually it’s the acronym that I think of on a regular basis. It’s a reminder of the nature of development where autism is concerned – sometimes it’s one step forward, two steps back. Sometimes it just seems to be a whole series of steps back. And sometimes there are those blessed days when it’s one forward step after another.

Aside from some grouchiness due to Daylight Savings Time and some minor growling about having to do household chores, Neil has, behaviorally and socially, been doing incredibly well. He still attends his social skills class every other week, and that helps a lot. But the fact is – he’s self-regulating just as well as he did when he was on medication. It took some adjustment time, but these days, he continues to out-do himself.

For instance, when we were planning his recent birthday sleepover with two friends, he thought that it would be fun to carve pumpkins with them, and I thought it best to prepare him by mentioning that no one should be obligated to carve the pumpkins if they didn’t want to. Neil’s calm response (in his typical flat voice): “I most certainly recognize that.” (!) Additionally, at this point he has nearly mastered the art of the Unprompted Thank You, less than a year after his first one. And one morning last week, as he was going out to the shed to get his bike to ride to school (a feat that, even after a year, I never take for granted), on his own he remembered his helmet when I kissed him goodbye and said, “I love you. Ride safely.” Usually I notice when he occasionally forgets his helmet. I don’t know which shocked me more – that I didn’t notice, or that when I said ride safely, he realized that he had forgotten his helmet and went to put it on. But that – amazing as it was – was nothing compared to the thing with the toast.

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Adam, my creature of extreme habit, my fourteen-year-old limited eater, always has cereal and milk for breakfast. It’s the only dairy he will consume. If we’ve run out of milk on grocery day, he refuses to have anything else for breakfast, and I can’t stand the thought of him going hungry. In the mornings, Neil usually gets to the kitchen first to pour his own bowl of cereal and milk. Then Adam staggers in and does the same thing. Once in a while, Neil, on autopilot, uses up the last of the milk before Adam gets out there. I’m sure it was never a conscious decision on Neil’s part not to save any for Adam. So, knowing that Neil also likes toast for breakfast, I made a suggestion one morning when there had only been one serving of milk in the carton and Neil had consumed it.  “Since Adam doesn’t like toast, maybe in the future if you notice that there’s only enough milk for one person, you could save it for him, and you could have toast.” Neil negligibly nodded; morning tends to be his least verbal time. I figured that, at best, he might remember to save the milk after I had reminded him at least twenty more times (and no, I’m not exaggerating). I certainly didn’t in my wildest dreams think that two weeks later, after my mentioning it only once to him, that on his own he would pour his bowl of cereal, go get the milk, notice by the carton’s weight that it only had one serving left in it, and calmly, empathetically announce, “I’ll just have toast this morning,” saving the milk for his brother.

But that’s just what he did. He took another (big) step forward. And my heart swelled with emotion for my son, this wonderful soul who has never stopped trying.

Ed. note: Veterans Day has always been an important day to our family, and Neil and I will be continuing his tradition again this year. If you hadn’t read it last year (or would like to again), I’d be honored if you would read my post about Neil’s tribute to veterans. It’s one of my favorite stories about my son – and the veterans he looks up to.

The New Guy

Neil, in recent years, has developed a liking for scary movies. Like, horror movies. Granted, they’re not his favorite, and he likes many other types of movies. In fact, he likes most movies, so perhaps he just doesn’t discriminate when it comes to movies. But seriously, how can a kid who loves Winnie the Pooh and Tigger also enjoy horror movies? I’ve tried asking him why he likes them, but of course answering any “why” questions is always difficult for him. He said, “With scary movies, I just think to myself that it’s not really real, so I’m not really scared.” Well, okay then. Let’s move on.

So he stepped things up from last year’s zombie theme (he was the zombie killer from The Evil Dead, not a zombie), and this Halloween he decided to be Jason from the Friday the 13th movies. Pretty simple, as far as costumes go – just buy the hockey mask and put on old clothes. But there was one small problem – I had told him last year that that was his last year trick-or-treating. At sixteen and 5’10”, he’s just too big. But with his five-year emotional delay, that’s like telling an eleven-year-old that he can’t go trick-or-treating anymore. And on Halloween this year, Neil begged me to let him go “one last time.”

I gently reminded him that last year was his last time, and in the split second before he could protest, I had a flash of genius. “And Neil!” I proclaimed, “Now you are old enough to open the door for the trick-or-treaters! And you can wear your costume while you give out the candy!”

He smiled a little, processing. “Because I’m almost an adult.”

Wanting to save that conversation for another time, I quickly moved on to describing the duties and “policies,” as Neil put it, of being the candy giver-outer, feeling triumphant that my idea had successfully diverted a tirade. Neil was delighted about his new role, and I was just as happy about his not-usually-this-easy acceptance of change as I was about being relieved of my annual post for the past nine years. It was time to train the new guy. I told Neil not to scare the little ones, to say “Happy Halloween!” in a cheerful voice, even though he was being Jason. I instructed him to give out one candy bar (Snickers, of course, and KitKat) per kid. We set up the candy bowl, and he diligently watched out the window.

“Hey, Mom,” he called to me from his spot near the front door, “I thought up a good catch-phrase for myself.”

“A catch-phrase?”

“I’ll say, ‘I left my machete in the shed.'”

“Okay, but not to the little kids.”

The doorbell rang, and I hovered around the corner, out of sight, ready to assist if necessary. I heard some little voices yelling Trick or Treat! One said, “I like your mask.” Neil, confused for a second, dutifully said Thanks, and then Happy Halloween! before closing the door. “Mom!” he called out in an amused tone, “There were three little Dorothys!” I laughed to myself then, realizing that the ones I thought would be scared of his costume actually had no idea who he was supposed to be and weren’t scared at all. He was just a guy wearing a hockey mask.

Sure enough, as time went by and the older kids started coming, I heard Whoa, that’s kinda scary as he opened the door. His tone of voice changed from being cheerful and friendly (to the littler kids) to sounding a little more foreboding as the evening went on. He employed his “catch-phrase” a few times, and when someone asked for a second piece of candy, he answered in his typically flat, deep voice, “The policy is one piece of candy.” At my spot around the corner, I stifled a guffaw.

Even with Neil’s strict adherence to policy, we ran out of candy by 8:30 and had to shut off all the lights in the front rooms of the house. Then we went back to the family room with the few pieces I’d fortunately squirreled away, and Neil humored me while we watched one of my all-time faves, Disney’s animated The Legend of Sleepy Hollow. Not very scary, of course, but it was the perfect ending to my favorite Halloween ever.

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 

Thoughtfulness

One of Neil’s favorite conversation-starting scripts (when “What’s your favorite natural disaster?” doesn’t go over too well) is “What’s your favorite Disney movie?” He loves to ask people this and has asked me many times over the years, even though I’ve told him the same thing each time – The Rescuers.  I think I was seven or eight years old when it was released in theaters, and I just loved it. The story intrigued me, and I found the characters both touching and funny. When we got the LP record, I listened to it so much that I memorized many of the lines (um…I guess it runs in the family). Neil always seemed to forget after I told him that it was my favorite, but I didn’t think too much of it. It could be that it was just a comforting script for him, and the repeated asking (fortunately not daily!) didn’t bother me too much.

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Several years ago, on one of my occasional trips to the bookstore to hunt for autism books (this was back in the days when Barnes & Noble did not have an autism section; the entire special needs category, in a large bookstore, encompassed a single shelf with maybe only one or two books on autism, if I was lucky), I happily discovered Exiting Nirvana by Clara Claiborne Park (who also wrote The Siege). Neil was seven or eight at the time, and this was the first book I’d read on autism that not only gave me hope, it was actually helpful. I highlighted many passages throughout the book (on almost every page!) because so much of what I read of the author’s daughter reminded me of my son.

One of the sections that really stood out to me was about her daughter’s development in thinking of others and doing thoughtful things for other people, keeping in mind their needs or preferences. The most memorable part of the book for me was an anecdote that illustrated how, in adulthood, she had finally mastered this. While walking on the beach with her father on a cold and windy day, she decided to go back to the house for a sweatshirt. When she returned, not only did she have her sweatshirt, she had also brought her father’s jacket, unasked. My heart soared just reading about it, thinking that someday my son might do the same.

*

My sons are 700 miles away, visiting their father as they do every summer, and I haven’t seen them for six weeks. We talk on the phone and occasionally exchange little emails, a new development since last year. A month ago, after they had been gone two weeks, Neil asked me to email him pictures of our cats, so I took some new ones and sent them. The next time we talked on the phone, I asked him if he received them, and he said yes and thanked me for them (!), and I thought that was the end of it. I was just happy about the unprompted thank you (a recent milestone for him)!

A few days ago, I received the following email from Nigel. It might have taken four weeks for a response, but it was worth it. Imagine my complete delight.

Hi mom, thanks for the photos. So I thought of a photo to send to you in return. It’s of two of the characters from your favorite Disney movie: The Rescuers.

I love and miss you and I hope to talk to you again sometime.

Love,
From your son, Nigel

 

Ninth Grade: A Review

I had this great idea many years ago. At the end of every school year, I would write a review of how that year was for my two sons, a separate entry for each, describing not only their progress but also their personality, their likes and dislikes, and things they said or did. As a writer, I figured that was the least I could do.

So, that idea lasted about two years. Life sort of got in the way, along with other writing endeavors. I had always meant to pick it back up again but never did. Then I started blogging, mostly about my children’s development, and I feel better about all those years that I didn’t write about the kids (although most of those years were documented in IEP paperwork). Their development is described in detail in over four hundred blog posts. I no longer feel like I should write about them individually once a year, because I write about them all year long.

But this year was a milestone year with Neil starting high school and making some incredible social gains, and now that we’ve reached the end of the first year, I thought I’d recap the highlights:

September: Neil advocated for himself for the first time at an IEP meeting and learned to safely and responsibly ride his bike to and from school independently.

October: Neil turned 15 and wrote a guest post. Also, he and I had a difficult discussion about not learning to drive yet, he successfully used his cell phone for the first time when he had a problem with his bike, and he revealed that, after many years of self-loathing, he is learning to accept his autism.

November: Neil, for the first time ever, joined a sports team, and my heart soared at his achievement. In other news, he prepared and drank a pizza smoothie.

December: Neil’s language skills took a step back (or sideways) with some lengthy delayed echolalia, and then dramatically forward with the most amazing conversation I’ve ever had with him.

January: Neil (with Adam) took his first solo flight! A mere week later, I overheard his first unprompted thank you! However, the month ended on a sad note due to his needing to quit the wrestling team for unfair reasons, but he handled it with the utmost maturity.

February: Neil attended his first high school dance, but he still exhibited some heartbreaking social vulnerability.

March: Neil and I watched the movie Adam together and had a great discussion about it, and Neil found his niche in his theater class, where he made some truly wonderful new friends. I got to meet some of them when Neil attended his first play and I accompanied him, where I witnessed a beautiful spontaneous hug.

April: Neil started shaving! And I experienced the wonderful novelty of enjoying myself in a restaurant with my sons and having a stranger compliment me on their behavior for the first time ever.

May: Neil went off of his medication and has been doing an amazing job overall of self-regulating difficult emotions and managing his behavior. He also achieved the rank of Star Scout after six years of Scouting.

June: Neil had a major seizure, his first.

As you can probably gather, Neil’s growth this year has been tremendous. When I look back to his earlier years, still not functionally verbal at age five with extreme sensory and behavioral issues, I can’t believe all that he has accomplished. This year alone blows me away. It’s been a lot of work, with a great deal of assistance in various forms, but he has continued to learn and to succeed on his own terms, as I knew he would. I know there will be future struggles; he still requires constant assistance academically and will continue to need help with social issues. But we’ll take it on. My son gives me so much hope that I can’t wait to see what the next school year will bring. I know it won’t be easy (none of it has been), but ultimately, it will be good.

Neil, age 11, being a tiki at Pu’uhonua National Historical Park, Hawaii, 2006

The A-Files

I started watching The X-Files when my first child was born in 1994. I would often watch an entire episode with Neil sleeping on my shoulder, gently rocking him as I waited for his father to get home from work. The show’s then-unconventional subject matter of two FBI agents investigating strange crimes and bizarre phenomena appealed to me, and I continued to watch it until it ended in 2002.

Meanwhile, in 1997, I started keeping my own files. That was the year that we began having Neil evaluated for his lack of language development, among other concerns. We went through numerous tests, home visits, and various assessments over a six-week diagnostic period. And then we were told what the therapists probably knew much earlier: it was autism. Our first IFSP meeting was scheduled, early intervention services began, and my files grew. Six months later, I discovered the website for the Autism Society of America and was relieved that I now had some information that I could print out for relatives and friends to read – basic information about autism that had been so hard to find twelve years ago. I made copies and put them in the file.

A year or so later, we began to realize that our younger son also exhibited signs of autism – a disheartening language delay and notable sensory issues. So he was also evaluated, and, although not diagnosed with autism, he still needed speech and occupational therapy. I started a file for him, too.

The years went on, and two kids with IEPs produce tons of paperwork. I saved most of it, wanting to have everything documented, trying to be a responsible special needs parent, and just not sure what needed to be saved and what didn’t. In addition to the boys’ individual files, I also kept files on general autism information as well as related special needs advocacy information. The files were both full of articles I’d pulled from magazines and newspapers over the years, old clippings from genetic theories to the vaccine issue to stuff I’d found on terbutaline and other neurotoxins. I clipped sidebars on teaching strategies, visual schedules, and sensory issues. There were reprints from early Newsweek and Time magazine cover stories on autism. I saved articles on biomedical treatments, various types of therapy, autism in adulthood, and special needs estate planning. My files covered a lot of ground.

And last weekend, having the need to downsize to a smaller filing cabinet, I decided it was time to clean out what I’d dubbed “The A-Files.” I tackled my younger son’s file first, smaller due to the fact that he had no longer needed an IEP by the time he turned ten (three years ago). I saved a few of the more important IEP copies and his early evaluations. Then I moved on to my firstborn, whose file had actually torn at the top from the weight of it, and been taped. His, of course, took much longer to wade through, but I think I did a good job of judiciously separating the grain from the chaff. It felt odd to go back so far, to see things that I’d written – behavioral observations, for example – eight, ten, and twelve years ago. I was struck by how little I understood of autism then, but also by how determined I was to help my sons.

By the time I got to the last file, the general autism file, I didn’t realize how fragile I was. I had breezed through my younger son’s file, and although I had lingered considerably longer on my older son’s file, I felt like I did all right with it. I thought that I’d kept my emotions at bay. But I had barely begun to sort through that last file when my face suddenly twisted into a grimace of pain and sorrow. A hideous sob racked my chest. The jig was up.

I know what it was that finally got to me. It was the printed evidence that autism has shaped our lives. Maybe I subconsciously thought that all this paperwork would somehow help. That saving it was like some sort of a karmic point system, that it would make a difference, sitting in my filing cabinet. All that documentation, all that information. Evidence. Unresolved, just sitting there. Like that show I used to watch.

But then the sobs subsided as quickly as they’d begun. I realized that autism shaping our lives isn’t just about the negative. Yes, it’s often been very hard. There are plenty of things that I wish could have been different. But in those files are also many positive reports of progress – the gradual meeting of goals that seemed too lofty when written, emerging skills, developing ability. That, too, is evidence. Evidence of determination, commitment, and hope. You can bet I’m saving that paperwork.

Significant

“sig·nif·i·cant, adj. : of a noticeably or measurably large amount”

– Merriam-Webster’s Dictionary

My son, age 15, is in a major transitional year, having begun high school three months ago. He has a new case manager and new teachers who are all still getting to know him, his strengths, and his needs. He has a full load of classes and a couple of self-chosen extra-curricular activities, including being on the school’s wrestling team, which he dreamed of doing for many years. I am, of course, very proud that he achieved that, and of everything he’s accomplished. He has come so far from his non-verbal, sensory-agony days.

And fortunately, I like his new case manager. She quickly assessed my son’s needs and has worked hard to meet them. I am very appreciative of her work and her attention to my son. She recently emailed me to go over a few issues, including how to help him participate more during wrestling practice. Among other things, she wrote, “[The coach] does not have a lot of experience with students with significant disabilities.”

And it hit me hard. That phrase – “significant disabilities” – is heavy. It was, of course, not meant in a negative way. But it smacks a parent in the face. It’s a harsh reality check, even twelve years post-diagnosis. That phrase takes my recent hopes for a possible semi-independent adulthood for my son and dashes them to pieces. It takes me back to square one, when he was three years old and we received a diagnosis of classic autism, and again at age five, with a different doctor and two years of intensive therapy under our belts – same diagnosis. My head reeled again as it did so long ago. Significant disabilities, even at age 15, even after all the work he’s done, all the years of continuous therapy, all the parental heartache. “Significant” must be somewhere in between “moderate” and “severe.” And “significant disabilities” do not induce much hope.

Days pass. I have been walking around in a melancholy haze caused by two seemingly innocuous words. They are truthful, after all. I realize that his case manager sees a 15-year-old who needs constant one-on-one assistance in all of his classes, two periods a day in the resource room for help with in-class work and assignments, daily pull-outs from his mainstream classes, ongoing social skills and speech therapy, daily medication for his behavior, curriculum modification, and various other accommodations that I am constantly grateful are available to him. I can’t deny that all of that does, indeed, point to “significant disabilities,” just as how his needs when he was first diagnosed pointed to the same.

I know that my son’s case manager meant no harm in what she wrote; she merely stated a fact, and I certainly don’t hold it against her. But she doesn’t know his history. What she doesn’t see is a 15-year-old who, despite great difficulty in learning to talk and filter severe sensory issues, despite enduring years of bullying, among countless other challenges, has always gone to great lengths to learn to work with his autism and to function as well as he does. He always tries. He wants to live his best life as much as I want him to. I find that significant too.

Trust

Having a special needs child growing up in my home has taught me more about trust than any other element of my life. Especially with my particular child having such an independent spirit and wanting to do things on his own. The problem is that he does not always have the coping tools and social understanding necessary to navigate many situations he could encounter. And so, as he has gotten older and has started wanting to go places on his own, I have learned that lecturing him on safety issues and wringing my hands while he’s gone are not the best ways to cope with the experience.

Of course, all good parents in general are concerned about their children’s safety and well-being when they’re out doing something on their own. I know how it is with a non-autistic child because I have one. I know that even though I have just as much concern for his welfare, the worry is mitigated. He can handle himself far better in situations where other people are involved, which is almost any situation when someone’s away from home. I don’t worry about him causing problems, or about his behavior escalating. I don’t worry about him reacting violently to insects flying near him. I don’t worry about someone tricking him into doing something unsafe or unlawful. And I’m just as relieved when he gets home safely, but while he’s gone, the worry seems more manageable.

For two years now, my autistic teen has been asking me to let him ride his bike to the local grocery store alone. And for many reasons, I kept putting it off. I just didn’t feel that he was ready. Now, since he recently started riding his bike to and from school every day and has demonstrated that he can use a cell phone properly, I can no longer justify not letting him ride to the store, which is just a little farther away than the school.  One afternoon last week, he asked me to let him ride his bike to the store. I put it off, telling him he had to do his chores first. He did them in record time and asked me again, assuring me that he’d be careful. Out of stalling material, I literally wrung my hands and began breathing rapidly, like the beginnings of a panic attack. Neil noticed.

“What’s wrong?” he asked.

I hemmed and hawed. Finally, I said it. “I just wish you didn’t want to do this, Neil. It worries me.”

He paused, and then he made eye contact and said, in his flat but beautiful voice, “Mom, sometimes you just have to trust me.”

I almost gasped. A lump quickly formed in my throat. It was one of those rare lucid moments when he says something so simple, yet so profound. Somehow, he knew exactly what to say. “You’re right,” I conceded. “I think you’re ready to do this.”

“I am,” he said in the same resolute tone.

We then did a quick “verbal social story,” since these days he rarely needs them to be written. I verbally walked him through the route he would ride, told him where to lock up his bike, discussed what he would do in the store, and suggested that he not stop to talk to anyone along the way. He could briefly answer a question if someone asked, but then come straight home. We figured out how much time he would need to get there, get his Silly Putty, and come back. Then he left, and I watched him out the window as he rode away. I visualized a herd of angels surrounding him.

While he was gone, I took his advice. I worked at my desk and just trusted. I trusted that he could do this, trusted that he would be all right. And to my surprise, I actually believed it. I did so well that right about the time I thought to check the time, I heard him rattle the side gate to indicate that he was home, putting his bike away. My eyes immediately welled up and I patted them dry as I rose from my desk. Neil strode into the house and I went to greet him.

“I did it, Mom,” he said calmly, with a hint of pride. “See? I told you I would be fine.”

“You did and you are,” I said, putting my arm around his tall, warm frame. “I’m really proud of you.”

“Thanks for letting me go.”

I tried not to get misty-eyed again. “You’re welcome, honey,” I said.  How did he know that that’s the hardest part of trusting – the letting go? That, as I discovered that afternoon, it’s also the most rewarding?

With My Eyes Open

How many times have you heard “They grow so fast”? In my almost fifteen years of being a parent, I’ve heard it a lot. I’m sure most of us have. And all the times I heard it I would smile and nod; I wanted to seem wistful, like other parents. But inside I was thinking that it didn’t seem fast to me.

Looking back, I always wanted to get through my children’s various stages. When they were babies, I couldn’t wait for them to sit up, become mobile. I figured they would be happier when they could do those things. I figured they wouldn’t cry for hours on end. I figured I could get some sleep then. I figured things would be a little easier. Then I couldn’t wait for them to start talking. I figured they wouldn’t get so frustrated. I figured they would stop screaming. Of course, I had to wait many years for that (both the start of the talking and the end of the screaming).

Then there was all of the “extra” stuff. Two sets of IEP meetings, specialist doctor appointments, tests, and therapy sessions. I wanted to get through all of that, too. I was so busy trying to get through everything I perceived as stressful that I developed tunnel vision. And while tunnel vision is great for finishing college or being apart from loved ones for a long time, it’s not the best way to be a parent – whether you believe they grow fast or not.

And now my younger son is 13, in middle school. The older one, almost 15, just started high school. I catch myself thinking “if he can make it through this first year, he’ll be okay,” or “as soon as he’s finished with middle school, things will be easier.” But what about the time in between? Why do I still want to get through it? Some of it is still stressful, yes, but not all of it. And sometimes when I least expect it.

Take, for example, my son’s appointment with his psychiatrist today. I rushed home from work, picked him up, and rushed to the doctor’s office. On the way, I realized that I had forgotten the book I wanted to bring to read in the waiting room. Then I started thinking about what the blazes I would make for dinner, wondering whether the pharmacy would still be open after the appointment, and hoping that the DVDs that were due today were all in the cases that I had tossed on the back seat of the car. We arrived barely on time, signed in, and sat down to fill out the half-page form that must be filled out for all appointments. It requires a few checkmarks and about six written words. I have started having my son do it so that he learns these things. This is the third time I have instructed him to do it, and for the third time, he balks.  “Why do I have to do it?” he demands.  “I don’t like writing,” he growls, and then, when he is almost finished, he fumes, “Just because it says ‘signature’ doesn’t mean it has to be in cursive!” “Why are you being so argumentative?” I ask, trying not to smirk. “I’m not being argumentative!” he retorts. And then I start to laugh. I try to hide it, try to turn it into a cough, but he calls me on it. “You did that because you’re laughing,” he says in a low voice.

After assuring him that I’m not laughing at him, I try to explain the concept of stress release, that sometimes I just start laughing when something’s not really that funny. What I feel like telling him, but can’t, is that I realize I’m also laughing in relief. I look at my beautiful, argumentative son and it hits me. He’s talking now. He’s not screaming. He’s not bolting away or writhing on the floor in sensory overload. All this time that I’d been trying to get through all of that, I never realized that I did get through it. Yes, more issues have come up. Different sources of stress. Just because he started talking and stopped screaming doesn’t mean that all of my stress is gone. But that stress is gone. The stress of dealing with a bolting, screaming, nonverbal child is now gone. We didn’t get here by magic, but still, we finally got here. For years I didn’t know if we could. And I am laughing, wondering why I hadn’t stopped to realize it before.

I need to turn off the tunnel vision, open my eyes, and look around at what’s happening now. I have a few years left with my children before they become adults. And even though at least one of them will still be home with me for an indefinite amount of time, things will not be the same. Even though, to me, they don’t grow fast, they still grow. And I don’t want to miss any of it because I’m too busy trying to get through it. 

Image credit:  Jon Rayer 

Lucky

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

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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.