Category Archives: Language

Stepping Back

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 “8th 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 Heart Echolalia

practice

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.

The Seven Year Itch

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.

His Own Terms

“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.

Sleeping Bag Talks

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.

In the Barrel

Nigel: I was in the barrel today . . .

I spoke to Nigel a few days ago, and it was one of the best phone conversations I’ve ever had with him.  As I’ve written previously, phone conversations with Nigel are usually one-sided, compounded by the fact that there is often a movie or TV show on in the background that is distracting him. But this time, on his own, he took the phone outside so that he wouldn’t be distracted while talking to me. I was so impressed that he did that on his own! I guess he really wanted to talk to me! Most of the time I have to drag information out of him, but this time he volunteered stories about his exciting time at the beach, even though his voice was characteristically stoic.

Nigel: The wave was all around me.

Me: Were you boogie-boarding?

Nigel: I was body-surfing.

Me: How long were you in the barrel?

Nigel: Just a few seconds. Then the wave collapsed.

Me: Was it cool inside the barrel?

Nigel: Yeah. I liked it.

S’mores and Semantics

My sons, who have been visiting their father in LA for several weeks, will return in a week, and I plan on taking them camping soon. We’ve camped a lot over the years, as a family and with Nigel’s Scout troop, and Nigel’s favorite part of camping, like most kids’, is eating s’mores.

A few years ago we camped at Yosemite, and a month or so before the trip, I started to show Nigel pictures of Yosemite and told him that we’d be camping there that summer. At the mention of camping, he asked, “Can we have s’mores?” And I said, “That’s a great idea! You’ll have to remind me before we go to Yosemite.” Nigel, after a few seconds, got a blank look on his face and said, “But I just did.”

I forgot that his mind interprets things so literally. He wouldn’t know the implication that the reminding should take place a day or two before the trip, so that I could buy and pack the ingredients. All I had said was “remind me before we go to Yosemite,” but I didn’t say when exactly.

It makes me wonder if he just accepts that the gooey treats are called s’mores in the same way that cake is called cake and candy is called candy. That’s just what they’re all called. I think he was about ten years old when he went through a why phase, similar to preschoolers asking why the sky is blue. Only, with Nigel, he would ask why the color blue was called blue. Why is cereal called cereal? Why is that a tiger? After many of these nomenclature origin-type of questions, I would reply (slightly exasperated), “We don’t ask why; that’s just what they’re called.” I often wonder if he really wanted to know the meaning of the word, or if he wanted to know the origin of the word, or if he was just asking his “why” questions because he discovered that if he asked a question, the other person would respond to him. It was the next step on his quest to connect with people. He just didn’t know how to structure the questions. Except for “Can we have s’mores?” He mastered that question for sure.

It’s Who You Know

Being a movie lover, Nigel considers himself lucky to have a father and stepmother who work in the movie industry. Through his father, he met Nicolas Cage (Raising Arizona and National Treasure get played a lot in our house) and watched him do an impromptu puppet show.  Nigel said he was very funny and nice.

Nigel has also been a long-time fan of Robin Williams. In fact, it was Mr. Williams’ performance as Genie in Aladdin that encouraged Nigel’s beginning communication through echolalia. Nigel went on to enjoy other Robin Williams movies, such as Popeye, Flubber, Hook, Toys, Mrs. Doubtfire, Robots, and Night at the Museum, which he has a poster of in his room. His all-time favorite, however, is Jumanji. So when his stepmother came home from work last week and announced that she was working on a film starring Robin Williams, Nigel, eyes wide, said, “Tell him I’m his biggest fan.” She did, and Mr. Williams, who has probably heard that a few times before, quipped, “Oh, did he take a poll?” and proceeded to personally autograph Nigel’s Jumanji DVD. When his stepmother brought it home for him, his dad said that Nigel’s eyes actually watered, and when I spoke to him about it on the phone today and asked Nigel how he felt to receive the autograph, he immediately said, “Ecstatic!” To me, that’s the best part about movies: helping autistic kids to try to communicate, and later, to identify their emotions. How great is that?

Spiderfan

Any kid who loves a movie character will probably want to write a fan letter, and Nigel is no different. After beginning with Tigger (“Dear Tigger, jumps note, Piglet and Pooh”), Nigel progressed in one year to write, at age seven, the following letter:

DEAR   PETER   PARKER

MAY    I    HAVE    THE   SPIDER-MAN    SUIT    PLEASE

YOU    CAN   VISIT   US   IN   OREGON

I   MISS   YOU   IN    NEW   YORK

YOUR   WEB   SHOOTERS   ARE   COOL

WHY   YOU   STOP   GREEN   GOBLIN

LOVE      NIGEL

He typed it on my computer one afternoon. I guess, not realizing that a sequel was in the works, Nigel figured that Peter Parker no longer needed the Spiderman suit now that the movie was filmed. And I guess Nigel thought that Green Goblin was pretty cool, too. Who can really know for sure what an autistic seven-year-old thinks? The number of words contained in this letter is far more than Nigel ever spoke at that age.  I remember being so glad that he had found a way to express himself, even if it was only about movies. At least they motivated him to write, and to communicate.

Assessing Development

Development sometimes seems so elusive and immeasurable. When you’re with your child every day, it is often difficult to see any development. For me, it becomes more apparent when Nigel returns after visiting his father for seven weeks every summer. It is then that I notice changes in development. Some are subtle, such as a slight increase in speech, and some are more obvious, such as being two inches taller. Every year Nigel progresses, whether it is obvious or not.

I keep a file (several, actually) of his school records, IEP reports, and my own writing describing his development over the years. I have been looking through the files this week and am enjoying reading about his development, marveling at how far he has come. This is an excerpt from ‘Nigel at Six:’

I had intended to start writing this sooner. Pictures are not enough to remember these early years. Videos help immensely, but they do not capture thoughts and dreams, concerns and hopes.

All people change and grow, but I think I will spend my entire life learning about Nigel. Who is this little boy? Part genius, part tough, all loving. He has been with Child Development Center for two years now, and I can communicate with him levels above how I did when he started. He is a wondrous person, a gentle soul. Trusting, yet fearful of new situations. I can’t explain to him why he needs to sit at the table in restaurants and stay near me in the grocery store. Of course, I must remind myself that it has gotten better. He understands more of what I tell him, but too often I don’t  think of what to tell him until it is too late. Last time we tried to eat in a restaurant, he went up to some other patrons at their table, got right in their faces and proclaimed, “Balto!” because he had watched that video earlier in the day.

He is starting to use pronouns now, usually at home where he is comfortable, although he confuses which one to use when, “I” for “you” and vice versa. We are still hearing nonsensical words, words he uses when he’s trying to imitate a line from a video and he doesn’t know what was actually said. For example, in The Lion King when Simba tells Zazu “Hurry!” in an urgent voice, because he needed help. Nigel thought it was said in an angry voice, so whenever he’s angry, he yells, “Urr-reee!” and has for about two years now. Or he would say, also in anger, “It’s my gun, you’ve got no right to take it!” from the Swiss Family Robinson. Fortunately that was short-lived. Another good one was from the Scooby-Doo video. When Aidan split his chin open, we had to go to the doctor for stitches, and the regular doctor had just moved to a new location. So we got to the new office and were just about to walk in the front door when Nigel stopped and said, “I don’t like it,” as Shaggy had said when they were about to go into a haunted house. Nigel had used the phrase in perfect context as a way to indicate his fear about a new situation.

He’s even come up with some phrases on his own, emerging spontaneous, non-echolalic speech, which is wonderful. When I got back from a three-day trip to Paris, he emptied my backpack and filled it with his own shoes and clothes, put it on and walked around the room saying, “Nigel go to Paris. Nigel is tripping [meaning, going on a trip].” He has learned in school to comment whenever someone participates by saying, “Good catching,” “Good throwing,” “Good drawing,” “Good sitting down,” and when he can’t describe something specifically, he says, “Good job in doing,” which I love.

And the boy who taught himself to read at three and a half is sounding out words he doesn’t even know. Yes, it’s hyperlexia, but at least he shows cognitive strength in that. Unfortunately, he seems to have difficulty with holding pens – even fat ones – and trying to write. He is very resistant. He loves to watch other people write, but he freaks out if I try to put my hand over his to get him to do it. It’s a shame, because I think that once he learns to write, that will liberate him to no end.