Teen Autism

Dear Nigel’s Teacher,  

At the Scout meeting on Saturday, I know that you were laughing good-naturedly when Nigel worded something in an awkward way, and that you didn’t mean any harm, but I wanted to clarify for you what I said in response, because, as his teacher, it’s important for you to know. Nigel did not start talking until he was five years old, and the process from that point on was very difficult for him. I described this in the information sheets that I gave to all of his teachers at the IEP meeting in September in the hopes that his teachers would be patient and understanding when he has difficulty expressing himself verbally. This is one of the many ways that his autism affects him.  

When I said, “He does the best he can,” in response to your laughter, I meant that sometimes he is unable to formulate his word choice in a typical way, but he tries. He has always had difficulty using pronouns correctly. Sometimes he states something that’s obvious. Sometimes what he says can sound odd or off-the-wall to others, but he cannot help it, just as [another student] cannot help it when he stutters. When [the other student] stuttered at the meeting, no one laughed. And I really hope that when Nigel says something in the classroom that is obvious or might not make sense that you do not laugh in response. This sets a negative example for his peers, many of whom have bullied him in the past. This is why I had homeschooled him previously. It would be very upsetting if the bullying started again, as it would affect Nigel’s academics negatively along with his well-being.  

As I said, I know you did not mean any harm by laughing. I just wanted to make sure you realize that he cannot help it if he says something awkward. He has always tried so hard to communicate, and when he says something that doesn’t sound right, he shouldn’t be laughed at. Thank you for the work that you do as a teacher, and for your patience with my son. I know that a student with autism can be more difficult to teach, and I do appreciate all of your efforts.  

Sincerely,  

Tanya Savko

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

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

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

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

“You mean when I’m 18?”

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

“20?”

“I think that’s a bit early also.”

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

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

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

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

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

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

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

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

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

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

Oh, honey. I got you covered.                                                                                

‘What ho!’ I said.

‘What ho!’ said Motty.

‘What ho! What ho!’

‘What ho! What ho! What ho!’

After that it seemed rather difficult to go on with the conversation.

-P.G. Wodehouse, My Man Jeeves (1919) ‘Jeeves and the Unbidden Guest’

Yesterday, Aidan’s best friend of seven years was visiting at our house. In the spring, he moved three and a half hours away, so the boys don’t get to see each other very often. They talk a lot on the phone, but Aidan always looks forward to getting to spend some time with his friend when he’s in town. And yesterday, spur of the moment, he called right as Aidan was getting home from school. “I’m in town visiting my dad,” K said to me on the phone. “Is it okay if I come over for a bit?”

So Aidan and K had a blast hanging out and playing video games together. I threw in a pizza for dinner and called all three boys out to the table when it was ready. Nigel came out last, fresh off a movie in his room. He knew that K was visiting and greeted him as he sat down. I sat about fifteen feet away in the living room, reading.

They had barely taken two bites, presumably, when Nigel launched into some lengthy delayed echolalia. (Technically, these days it’s called ‘scripting,’ but ten years ago, when it was his primary means of communication, we didn’t have that terminology yet. Or at least I didn’t. His therapists called it ‘delayed echolalia,’ a term which has stuck with me.) I had no idea what was going on with him. He kept going on, rapidly reciting something in a strange tone of voice. Aidan and I, glancing at each other, were stunned by this monologue. Nigel often still says single lines from movies, or a couple lines of dialogue run together, but nothing this lengthy. Poor K was trying to nicely respond, to acknowledge Nigel and converse with him. He’s been at our house so many times over the years that he’s quite used to Nigel’s different way of communicating, but he wasn’t sure what to make of this. I decided to gently intervene.

“Nigel? What are you saying? You need to use your own words, okay?”

“I’m just making polite conversation!” he shot back. I’d be willing to bet money that this was also a line from something, just by the way he said it.

“When you’re having a conversation, it’s best to use your own words so that people know what you’re talking about.”

“You don’t need to say things from movies,” Aidan added gently.

“It’s not from a movie! It’s from a book! Alice’s Adventures in Wonderland!” he growled.

“Okay, well, how about if you just eat now?” I suggested. I really didn’t know what else to say. I knew he’d been reading that book (the original) for several weeks, but I had no idea he’d been memorizing it. And why the sudden inappropriate monologue? He’s done much shorter versions (of delayed echolalia) in the past when we’ve had multiple people at our house, or in unfamiliar situations, but I couldn’t figure out why he needed to do it last night. Was it a sign of a mini-regression? A conversational test on someone familiar? What gives?

I gave it a lot of thought, and then it hit me. It’s because he’s autistic, of course. His language development was extremely late and labored. The art of conversation is something that may always be out of his reach. Yes, he can communicate. At this point in his life, he usually does it fairly well. But communicating and conversing are two different skills, and the skill of conversing is something with which he will most likely continue to struggle.

We often say, “Two steps forward, one step back,” or a variation thereof.  I could choose to look at last night’s conversation attempt as a step back. But in reality I think it was sort of a side step, a lateral move. He was testing the waters. In fact, I talked to him about it later when we were alone, and he confirmed my theory.

“I just wanted to try something new. I thought it would be fun. K seemed to handle it fine.”

“Yes. That’s because he knows you really well. But it’s probably not a good idea to do that with people who don’t know you very well, because they won’t understand.”

“I just don’t feel like I could give it up.”

“You don’t have to give it up. Just try to only do it around people who know you well. Okay?”

“Okay.”

I think maybe it was a step forward after all.

I have a small scar on my forehead, and every time I look in the mirror and see it, I am reminded of Nigel’s long road to understanding the word “sorry.” Sorry is one of those vague words, like “thanks” or “please.” It’s not a concrete noun or verb, nor the type of adjective that tells something’s size or color. It is impossible for an autistic child to visualize. For a long time, Nigel did not understand the word.

When he was six years old, we had some friends and their two children over for a barbeque,  and Nigel was enjoying interacting with the kids (he has always been social, in spite of the autism). His verbal abilities were quite limited then. They were playing a chasing game, running through the house, and their little boy was chasing Nigel, who was laughing. Nigel ran into his room and slammed the door behind him, catching the other little boy’s fingers in the door. I knew he didn’t mean to, but the little boy was hurt, and I wanted Nigel to apologize. While the other mother was soaking her son’s fingers in a bowl of ice water, I kept telling Nigel that he needed to say that he was sorry. He kept saying “No sorry, no sorry” over and over again. So I took him in his room and tried again to explain it to him, and again he said “No sorry, no sorry.” I spanked him. It pains me to admit that I’ve done and said things to my son that I regret, that I hate myself for doing, in the days before I understood how the autism was affecting him. I told him again, in a horrible voice, “You need to say sorry!” and again he persisted with his “no sorry” mantra. I just didn’t get it. To this day I feel terrible for not understanding him. His verbal skills were so limited then that perhaps he was actually trying to say “I’m sorry” but it came out “no sorry.” And I wish that I’d had the insight to know that then, and to react differently, instead of punishing him for his inability to say something properly.

Just one year later, Nigel and I were out in the backyard playing. He tickled me or something, and I came after him with a playful, “I’m gonna get ya!” I chased him through the side yard, and Nigel, laughing, ran through the wooden gateway, slamming the gate behind him. He slammed it just as I ran into it, and the force of the impact split the skin on my forehead. I saw stars and almost collapsed. I slowly opened the gate and stood there, trying to regain my composure. Nigel came back, took one look at me, and said, “Sorry! Sorry! Sorry, Mom!” I hugged him and told him that I was okay.

“Sorry” is now a regular part of Nigel’s vocabulary, although he rarely puts “I’m” in front of it. Usually he will say, “Sorry about that” or “Sorry I did that” or “Sorry I forgot to do that.” If he didn’t understand its meaning before, he does now, and he readily apologizes for his mistakes. But maybe that’s also because he’s frequently heard it from me.

You see, sorry is a regular part of my vocabulary, too. Even though I accepted the autism diagnosis from the beginning, I didn’t understand all the ways it affected Nigel - the pervasive nature of it - for many years. I’m still learning. I still get frustrated with him. I understand so much more now, but I’m ashamed of my reactions before I understood, when I expected him to do or say things that he wasn’t able to. And so I’ve been saying sorry quite a bit over the years. Fortunately, Nigel’s not the only one who learns things. His mom does too.

My son has memorized the dialogue of many movies. Star Wars, Indiana Jones, Jurassic Park, the old Pink Panther movies with Peter Sellers, various Scooby Doo adventures, Winnie the Pooh, and numerous other Disney films. Over the years I’ve often wondered if this ability to memorize movie dialogue crosses over into other areas of his memory. And it does, a bit. While it’s true that he can spell any word he’s ever read, and has an uncanny ability to remember dates and places of historical events, his memory for his own daily life generally isn’t as dependable.

On a recent trip to the grocery store, I was curious if Nigel remembered how traumatic it was for him to be in them when he was younger, how his sensory issues were so extreme that all the noises of the grocery store were agonizing to him and he would scream and writhe on the floor. He did not remember a thing. It was as if his mind had mercifully blocked the painful memories. I thought perhaps he didn’t remember because the majority of those incidents occurred when he was mostly non-verbal, aside from his cries of “Go! Go!” mixed in with his screams.

Part of me was disappointed because I thought that his memories would be valuable for several reasons. For one, I think it would buoy his self-esteem to see how far he’s come. Also, it would be fascinating if he could shed some light on what made things so hard for him, how he felt, and what he was thinking. Of course, the answers to those questions are obvious (The sounds hurt his ears! He felt tortured! What was he thinking? That he needed to get out of there!), but I just know that there’s so much to be learned from him, from his experiences. And so I figured that if he couldn’t remember the difficult parts of his non-verbal days, he couldn’t remember the good parts either.

Enter Tigger. Tigger is pretty celebrated around here. I’ve mentioned before how Nigel’s stuffed Tigger (bought at Disneyland during my pregnancy) prompted him to write the first little note he’d ever written. The Tigger and Winnie the Pooh stories and videos have also taught Nigel about friendship. And Tigger is responsible for enabling Nigel to do the first imaginative thing he’d ever done. Nigel used to like eating frozen corn niblets. He wouldn’t eat them cooked, only frozen. I would pour them in a little bowl and he would eat them with his fingers. One night when he was four years old, I poured some in bowl and put it on the kitchen table for him to eat. While I prepared some toast for Aidan, Nigel got out of his chair and ran out of the kitchen. He came back a moment later with Tigger. He gently put Tigger’s face in the bowl of frozen corn niblets and said, “Eat” in his little voice, his voice that was actually forming a word, stoic even from the beginning. I was beside myself with joy.

Fast forward ten years. Nigel, now fourteen, still loves Tigger and sleeps with him on his bed. He came to me a couple of nights ago and told me that he wanted to feed Tigger some corn again, like he did when he was little. My spine tingled. “You remember that?” I asked incredulously. He confirmed that he did. He said that he remembered how he felt and what he thought back then, that it made him happy to feed Tigger, and that he believed that he was really eating the corn. He said that having Tigger around all these years helps him to remember something from so long ago.

“Maybe Tigger has a magical quality because he was a gift of love,” Nigel said. I told him that he was probably right. And then he said, “Love reveals its capabilities in unexpected ways.”

I had to turn away, not wanting him to see my eyes welling with tears. “Yes, Nigel, it certainly does.” And I realized that what he said might have been a line memorized from a movie. But so what if it was? He chose the perfect time to say it. And it was beautiful.

Little transitions - stopping an activity to come to dinner, getting into and out of the shower, a new piece of furniture - can be challenging enough to get through. And they make the big transitions - starting a new school, moving, divorce - seem incredibly daunting. And we have a really big one coming up.

Brace yourselves.

In September, Nigel starts high school. Wait - did I just write that? A mere five days ago, as I held my newborn nephew in my arms, I remembered seeing my son for the first time. Holding him, gazing at his sweet little face. How is it possible that the sweet little face now has peach fuzz on it and towers over me?  How is it possible that the five-year-old who could not say his name when asked is now pre-registering for a full day of unassisted classes at the high school?

I am, of course, filled with apprehension. But part of me is also hopeful. Two nights ago Nigel and I attended the “8^th Grade Pre-Registration Night” at the high school. We ran into a good friend of his, and our families sat together. The principal gave a PowerPoint presentation and spoke about all the positive attributes of the school, including a student support system called an Advisory. It is comprised of twenty students, five from each grade level, and all students in the school are part of one. They meet weekly to discuss both academic and social issues. While this sounded very positive to me, Nigel was more excited about the opportunity to start his own club.

After the principal’s presentation, the audience split up into smaller groups to take teacher-led tours of the school. We had barely gotten started on the tour when Nigel flagged down our tour leader, the vice principal, and mentioned that he wanted to start a club for stop-motion Lego films. Only he asked it in his halting, “I-have-something-to-ask-but-my-autism-makes-me-pause-and-say-hmm-a-lot-when-I’m-nervous-or-not-sure-what-to-say” voice. The vice principal, who had just returned from coaching a softball game, got a blank look on his face for a few seconds, trying to piece together what Nigel had tried to say. I almost stepped in with a quiet “My son has autism” explanation. I’ve done that in the past whenever someone new to us has a hard time understanding Nigel. But something made me hold back this time. In the past year, I’ve tried to hold back whenever I feel that Nigel’s doing okay interacting on his own with someone who doesn’t know him. It may not be perfect, but he manages. I have to realize that I’m not always going to be there, especially at high school, to step in and wave the autism flag. There’s something liberating in the “not telling.” Because, really, a person’s response should not be influenced by knowing if someone’s autistic. Ideally, a person should respond with patience and respect regardless. They should realize that the person addressing them seems to have some difficulty expressing themselves - the reason why shouldn’t matter. And sometimes, after the quick blank look, the other person gets it. They may not know exactly what “it” is, but they know that they’re in the presence of someone who communicates differently, and that’s okay. I took a deep breath and waited for the vice principal’s response.

He got it. He gently rephrased what Nigel had said in a questioning tone to see if he was correct. Nigel confirmed with an appropriate “yeah,” and the vice principal said, “You certainly can start your own club. There’s a sheet in the pre-registration packet that tells you how to do it. That was a great question!” Then he turned and resumed leading the tour.

I exhaled and put my arm around my son as we followed the group. I wanted to high-five the vice principal and tell him that he had just made an autistic teen feel very good about himself. And that he had just made the autistic teen’s parent feel a little better about such a big transition.

I’ve seen some great posts on echolalia around the blogosphere lately. One point in particular that I keep thinking about was from Maddy’s post, in which she mentioned that someone had found her blog by searching “methods to stop echolalia.” Yes, it can be annoying sometimes, and maybe completely random, but hey! Your child is talking. Do you get it? Why would you want to stop that?

I have written about Nigel’s language development through various stages of echolalia. Yes, there have been times in recent years when I have prompted him to use his own words instead of a memorized phrase to communicate, but that’s because I know that he now has the ability to do that, to use his own words. Echolalia is comforting to him, however, and he reverts to that in high-stress situations. And in those situations, it’s more important to help him to calm down than to stop the echolalia. I don’t tell him “You can use your own words” when he’s on the verge of a meltdown. But sometimes, when he’s calm and comfortable, I encourage him to rephrase whatever he’s saying. I’ll gently suggest, “You don’t need to say things from videos right now. Try to tell me in your own words.” And he does now, because he’s able to. But I would never want to take that part of him away completely. He’s said some really funny things because of his delayed echolalia (scripting)! It’s how he learned to talk, and for that reason, I’m sentimental about it.

Why on earth, when a brave child is venturing into the speaking realm, would someone want to stop echolalia? Let them do it! Let them practice! When someone is learning to play the piano, there is a lot of bothersome plinking and plunking going on, usually on a daily basis. But after a long time of that, a song emerges, sometimes one that they have composed themselves. And there will still be plenty more plunking and plinking as the years go by. But also - we hope - more songs.

I’ve never seen The Seven Year Itch (although at some point, I’d like to). The phrase, according to Wikipedia, “refers to a disinterest in a monogamous relationship after seven years of marriage, has entered the popular culture, and has even been used by psychologists.” And now it will be used by the mother of an autistic teen, with an entirely different meaning.

As my son entered his second year of teenhood, which was just a couple of months ago, I began noticing something. Over the course of a few weeks’ worth of seemingly isolated incidents, I realized that Nigel, who had always been notorious for the eternally flat tone in his voice (except when angry), was suddenly speaking with inflection. And not just random variations - he actually put appropriate emphasis on the right words. His tone was starting to sound conversational! It took another week or two of me pointedly observing him talk and noting the increase of his inflection before I allowed myself to believe it. This is truly a developmental coup. It’s a milestone for the five-year-old boy who, when a child psychiatrist asked, could not say his own name. It’s a milestone for the boy who, for so many years, could only parrot lines from Disney movies or Scooby-Doo cartoons when he wanted to interact with people. He has worked so hard to achieve this.

I know that much of the increase in voice inflection has to do with the weekly social skills class that he is enrolled in at the local middle school this year. It’s a very small class, with only two other students, but I know that the two instructors have been specifically working with Nigel on his conversational skills. Whatever they’re doing - it’s effective. And he’s responding to it, which tells me that he’s ready. It’s time.

What do I mean by that? That’s where my seven-year-itch theory comes into play. Over the years, I have noticed that every seven years Nigel seems to make a huge leap in various areas of his development. It’s like he has this really significant itch every seven years, and when he scratches it, he hits a milestone. For example, when he was two, his sensory issues were so severe that he had to wear a fitted hooded jacket whenever we left the house to muffle sounds and help him feel secure. When he was nine, he had a wonderful regular ed teacher (he was mainstreamed that year with an aide) who not only taught him a lot academically, he patiently encouraged Nigel to remove his hood for the first time. That was also the year that I could take Nigel into grocery stores and the occasional restaurant. Another example of his seven-year-itch is in the cognitive area. When he was three, he taught himself to read, but I was told that it was common for young children with hyperlexia to not comprehend most of what they read. Seven years later, when Nigel was ten and reading at a high school level, his comprehension was tested. It was estimated that he understood about 95% of what he was reading.

When Nigel was seven, seven years ago, he really started talking. He had some speech prior to that year, but it was mostly echolalia and scripting (a term which wasn’t used much then). He would occasionally string up to four words together to communicate, but he had trouble with syntax and pronouns, verb tenses, etc. When he was seven, something clicked. He got an itch. He started stringing together more than four words spontaneously, his syntax and verb tenses began improving, and his echolalia decreased. It was remarkable. Of course, his tone was characteristically flat and downright stoic, but that was okay. It was definitely okay with me.  I figured he would always talk that way, and that was fine.

And now, seven years later, the inflection surfaces. On appropriate words, even. I am so loving this - this unexpected gift. Some seven-year-itches can be good.

“I will try to express myself in some mode of life as freely as I can and as wholly as I can, using for my defense the only arms I allow myself to use - silence, exile, and cunning.”           -James Joyce

Lately Nigel has taken to expressing himself in a new way. If I ask him a question and he doesn’t feel like talking, he silently mouths the words of his answer. This only works, of course, if I’m near him and looking closely at his face, and even then, sometimes I can’t figure it out, not being a lip-reader. I suggest that he might like to write the answer down. “No,” he mouths, not using any vocal chords, not even whispering. He shuns writing with a writing utensil, preferring to type if possible, if the computer is on and accessible. He’ll offer a thumbs-up or thumbs-down if my question requires a yes or no answer. He’ll point if the question involves indicating a direction or the location of a missing item. Then, after exhausting all options for answering the question non-verbally, he’ll sneer the answer in a low voice between clenched teeth.

It’s not that he’s losing his hard-earned, long-awaited speech. It’s that he’s being selective about when he uses it. It’s as if his voice is a precious commodity and he doesn’t want to expend it uselessly, unnecessarily. There is effort involved in speaking, both in choosing words carefully and in vocalizing and making oneself heard. But many times, when he is in his social mode, like at a party, he does not use this discretion, he is not concerned with conserving his voice, and he blurts out unfiltered comments. Of course, inconsistency is one of the more dependable traits of autism.

“Silence, exile, and cunning” could also be considered traits of autism. I find myself faced with the choice of enabling Nigel by asking him questions that do not require a voiced answer or forcing him to answer verbally. Is it a need of his to be selective about when he chooses to talk? Don’t I owe it to him to respect his choices, to meet his needs? Or is it more of a want and less of a need? At this point, I’m looking at the big picture. Nigel turns fourteen in a few days. I think this may be his way of asserting his developing autonomy, and as such, it is a need. It’s a need for any teen, but especially an autistic one. He knows when he can silently mouth words, and he knows when that won’t work. He’ll do it selectively. He’s still talking, still communicating. Just doing it on his own terms.

I’ve reached four summits this summer: Shasta, Thielsen, Wizard Island, and Lassen. I definitely felt a need to stretch my legs for various reasons. But my handy desk dictionary lists another definition for summit: “a meeting among heads of state.” These meetings are often referred to as summit talks, and I just had one a few days ago. Except in our family they’re now called “sleeping bag talks.”

I think of my sons as heads of states. They are the heads of themselves, and so I need to check in with them every now and then, to regroup, and to just talk. I used to have lofty ideas of holding monthly “family meetings” about what was going on in our lives, what we need to work on, what we’d like to do, etc. Of course, nothing that structured could actually materialize. If I were to walk into their rooms on a Sunday afternoon (which my delusional self always thought would be a good time for a talk) and say, “Hey, guys, let’s have a family meeting!” they would be all, Are you serious? That’s so Brady Bunch, Mom. No, they’d be much too busy building Lego/playing Halo/Googling Everything. And so, I have to sneak in my family summit talks. I’ve learned to strategize.

Take our recent camping trip, for example. What else do you do in an 8 x 9 tent with your sons on either side of you and one of them can’t sleep because you forgot to give him his medication until late in the afternoon and it’s keeping him up? That’s right, you talk. When autistic/ND kids want to talk, you go with it. Carpe diem.

I can’t remember when I’ve had more fun talking with my boys! Nigel started off with a discussion about time travel, influenced by having watched Back to the Future for probably the fifty-eighth time. But, unlike his usual one-sided talk about how he was going to make his own time machine and what he would do with it, he wanted to converse. He asked both Aidan and me what we would do if we had a time machine. After talking about famous people we wanted to meet (Abraham Lincoln and Charles Dickens), and then talking about all the presidents who were assassinated and possible reasons why, I came up with the suggestion of going back a hundred years and buying stock in Coca Cola.  The boys yelled “Genius!” and high-fived me in the dark. Then we talked about what we would do with the money. I must admit that, aside from saying we’d use some of the money to help out friends and family, we’re not the most altruistic bunch. Aidan wanted to start his own company (now it was my turn to high-five him), Nigel wanted a room full of Lego (which, in my opinion, he already has), and I wanted to travel more and be able to take the boys with me.

And after a while, Aidan fell asleep, and then Nigel turned to me, as if he had been waiting, and asked, “When did you first see signs that I had autism?” And I told him that when he was about two and a half I realized that he wasn’t trying to talk or interact, and that by the time he was three, after some evaluations by doctors and therapists, it was determined that he had autism. I couldn’t discuss - yet - the complexities of his sensory issues, the way he screamed and writhed on the floor of grocery stores and restaurants, not because he was having a tantrum, but because someone had turned on an electric coffee grinder. I couldn’t tell him - yet - about how he lined up his toy cars along the back of the couch and laid his head to one side and stared at them while he sucked his fingers instead of driving them around on the floor making engine noises. I don’t know if he’s ready to hear about all that yet. But I knew that he could understand the not-talking part. As soon as I mentioned it, he said, “Probably I was just taking my time.”

And since it was dark, I did not wipe away the tears streaming down the sides of my head. I said, “Yes, Nigel, I’m sure you were. And I’m glad that you learned to talk. But if you didn’t, that would be okay, too.”

And then he said, “Mom? With that money we get from time traveling, how about if we give some of it to other kids who have autism so they can have speech therapy to learn to talk?”

I hugged him and told him we could certainly do that.

Next time we go camping, I better bring a whole box of tissues.