Teen Autism

One of Nigel’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). Nigel 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). Nigel 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.

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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, Nigel 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

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 Nigel 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: Nigel 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: Nigel 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: Nigel, 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: Nigel’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: Nigel (with Aidan) 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: Nigel attended his first high school dance, but he still exhibited some heartbreaking social vulnerability.

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

April: Nigel 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: Nigel 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: Nigel had a major seizure, his first. Then he had to say goodbye to extended family members and his long-time Scout friends before moving to Los Angeles to be with his dad.

As you can probably gather, Nigel’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.

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

I’ll bet you have A-Files too. Read all about mine over at Hopeful Parents today.

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

- Merriam-Webster’s Dictionary

Please join me at Hopeful Parents today to see what else that word means to me.

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. Nigel noticed.

“What’s wrong?” he asked.

I hemmed and hawed. Finally, I said it. “I just wish you didn’t want to do this, Nigel. 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. Nigel 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?

Despite my best efforts, my Hopeful Parents post did not auto-publish at the appointed time on Sunday morning. I, being somewhat technically challenged, was not too surprised to discover it upon my return from my little weekend trip. So, my apologies to those who may have looked for it earlier, but it’s there now! Oh - and the little weekend trip? Wonderful. I’ll write about it soon. In the meantime, please hop on over to Hopeful Parents, and I’ll be back here in a couple of days. Love.

“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.

You would think that your constantly-eating teenage son would come running when he hears the words, “Dinner’s ready!” Especially since you have resigned yourself to only prepare the foods that he will eat because he is thin and needs all the food he can get. So he doesn’t have to worry about coming to the table and seeing something he might not like. Why then, when you say, “Dinner’s ready!” does he growl in response, “That fast?!” This is after the five-or-ten-minute transitional warning that you have learned to always give him. You always say, “Dinner’s in five [or ten] minutes!” and make sure that he hears you, so that he can prepare himself mentally for the transition and finish up what he’s doing. Yet every day, without fail, he will sneer, “That fast?!” when you tell him that dinner is ready, even though he has had his advance notice.

And every day, you model a more appropriate response for him. “Okay, Mom” or “Be right there!” You tell him that he should respond more politely to someone who prepares a meal for him. But somehow the appropriate responses don’t seem to register. He doesn’t get it. For years now, he has said, “That fast?!” in a negative tone, and it just seems to be a habit for him. And you worry about him doing that at any friend’s house where he might actually be invited to have dinner. You worry that in the “politeness vs. difficulty with transitions” fight, politeness will always lose.

But, much to your surprise, the day will come when you will say, “Dinner’s ready!” at his bedroom door, and he, seated at his computer desk, will politely say, “One moment, please.” And you will just about fall over dead from the shock. And when you recover, you will think that he really must be up to something in there to be that polite. So you poke your head in and check, and he’s not doing anything out of the ordinary. So you praise him for being polite, but you don’t want to overdo it or that will exasperate him and then he will never be polite again. And you can’t help but wonder if this is just a one-time deal, if he had by chance recently watched a movie that featured that line when a character announced that a meal was being served and the scene was still fresh in his mind.

And the next day when you tell him that dinner’s ready, he says nicely, “Okay, Mom.” And you thank him and then just stand there in the hallway and think, Wow! He’s getting it! And the next day when you tell him he says, “I’ll be there in a minute.” And you start to hyperventilate because he’s been polite three days in a row. And the fourth day, you tell him when dinner’s ready, and he growls at you, and you realize that you had forgotten the 5-10 minute “warning.” So at least now you know that your transitional cue really helped, even though all this time it appeared to not make a difference. The next day, you remember the “warning,” and you tell him that dinner will be ready in five minutes. And he helps.To set. The table. And after you pick yourself up off the floor, you realize that even though he still needs help with transitions, he is finally learning to respond politely. Yeah. He’s getting it.

“Independent functioning is not simply the ability to do something, but also the ability to decide what to do. It is not only the ability to take care of oneself. It is also the ability to take responsibility for oneself.” — Elaine Heffner (20th century), U.S. psychiatrist and author

Michelle at The Sneathen Family Site, one of the blogs I read regularly, posed an excellent question at the end of a recent post. She asked, “When, if ever, have you let your kids stay home for short periods on their own?” And since one of the most common searches used to find Teen Autism is “should an autistic teen be left home alone,” I thought I would do a search myself. There are plenty of parenting sites out there that offer guidelines for non-autistic kids and staying home alone. Given the fact that I couldn’t find much when I added autism into the mix, I figured that this subject warranted a post.

I started letting Nigel stay home alone for short periods starting at age twelve. We began with 20-minute increments and worked our way up to a few hours. I felt comfortable with that only after he had shown proficiency in the following areas:

1) Being able to call out if necessary and taking periodic check-in calls from Mom

2) Not opening the door for anyone, unless it’s the neighbor yelling “Fire!” Fortunately, that second part has not happened.

3) Knowing how to get out of the house quickly and where to go if something blows up

4) Staying in the house the entire time unless something blows up

5) Not doing anything that could cause anything to blow up

I reluctantly admit that we have had problems with items 4 and 5 on that list, resulting in the suspension of staying-home-alone privileges for periods of time. Apparently, the euphoria of being home alone sometimes causes my son to climb the 40-foot high tree in the backyard or set the couch cover on fire using a magnifying glass. Thus, he is also working on impulse control. For an autistic teen yearning to be independent, this is quite motivating, because he detests having his home-alone privileges revoked.

So, basically, what it boils down to is a combination of verbal ability and safety awareness. If Nigel did not have the ability to use the phone in an emergency, I would not consider leaving him home alone. His safety awareness has been developing for the past few years, and even though he “forgets” the home-alone rules once in a while, he is constantly improving. Someday, I may even return his magnifying glass to him.

Yesterday, on my way home after picking up the boys from the 700-Mile Kid Swap, I thought about what it was like when we first started doing it seven years ago. I thought about how Aidan used to throw up in the car at least every hour and how Nigel, newly verbal and still figuring out syntax and pronouns, would ask, “Why you throw up?” So I thought I’d do a follow up to my previous post on this topic.

If I blogged five years ago, Nigel would have been nine and Aidan would have been seven. I would have written about how hectic it was to have two children having IEPs with one parent to attend them (and trying to find childcare beforehand). I would write about how Nigel, who had taught himself to read at age three, before he could talk, was now reading at a middle school level and could comprehend 90% of it. Conversely, I would write about how Aidan still couldn’t read, even though I’d read to him every single night of his life and had tried to teach him for years, and so I had him in a special reading program at his school in addition to his speech therapy.

Five years ago, I would have blogged about emerging Nigelisms like this:

The Scene: Interior suburban family home. Two young brothers are seated at the dinner table while their mother serves them their plates of food. For the first time, the children are having full-size turkey burgers, as opposed to their usual half-size, so their mother placed them on buns instead of regular bread, as she had previously done. Due to their limited acceptance of foods, she wonders if they will refuse the buns.

Younger brother, about age 5: Mom, what is this fred?

Mother: It’s a bun.

Younger brother: There are bun freds?

Older brother, about age 7: Not ‘freds.’ BREADS. Not an F, a B.

Nigel, as soon as he learned to talk, loved to correct Aidan, who had pronunciation issues. But one thing that surprised me a little was that Nigel seemed to want me to correct him (Nigel). If he misused a pronoun, I would gently correct him, and then he would repeat what he’d said and insert the correction, as if memorizing it. It took about four years for him to learn to use pronouns, articles, prepositions, word order, and verb tenses correctly. He put so much effort into learning to talk. It always touched me how receptive he was to my gentle corrections. It was always the same - he would quietly repeat what he’d said and insert the correction, then move on. This happened several times a day for a period of about four years. Having studied French for several years while in school, I recognized the process of learning a foreign language. And that was how Nigel learned to speak English - like it was a foreign language.

If I blogged five years ago, I would write about how I ventured back into the realm of grocery stores and the occasional restaurant with Nigel. Salon haircuts were possible for the first time with ear plugs. He was finally starting to filter out all the sounds that had been unbearable to him before. It was liberating for both of us. I would also write about my first published magazine article, “Autism on the Rise,” which was featured in a regional parenting magazine. I would sadly and angrily blog about the first time I heard Nigel being called a retard, and how I ran outside and yelled at the boy who said it.

Five years ago, I would write about Nigel’s incredible third grade teacher, the man who happily volunteered to take on a newly mainstreamed autistic boy, one who had struggled notably the previous school year, even with a full-time aide. Mr. Incredible welcomed Nigel, provided the structure he needed, patiently included him and encouraged his other students to do the same. He made Nigel feel so comfortable that, for the first time ever (away from home), Nigel removed the snug-fitting hood of his jacket when Mr. Incredible suggested it to him in the classroom one afternoon, after six months in his class. And Mr. Incredible was just as excited about it as I was. He still, five years later, inquires about how Nigel is doing.

Incidentally, Mr. Incredible was also Aidan’s third grade teacher. By the end of that year, Aidan was reading. And now, just three years later, he’s reading at a high school level. Five years ago, I would have never thought that would be possible. That and so many other amazing things. New issues have certainly come up in the past five years - bullying, homeschooling, behavioral problems, medication, etc. - but the fact is that both of my boys continue to improve. Hope abounds.