Category Archives: Language

A Boy and His Voice

I started this blog two and a half years ago, and in that time I’ve had several requests from readers who had an interest in hearing Neil’s voice, wanting to see (or hear) him in action. I’m guessing that most of them had read some of the earlier posts I’d written about Neil’s characteristically stoic, flat voice, and either wanted to compare it to their children’s voices or were just curious. Since that time, Neil’s voice has continued to evolve. It’s been almost two years since I first started to notice voice inflection, an unexpected gift.  And now, well, you can hear (and see) for yourself.

One of the reasons why I hadn’t posted any videos of Neil before is because I wanted him to tell me when he was ready. I never mentioned it or made any suggestions – I wanted it to be completely his idea. And last week, he posted his first video on You Tube. He filmed himself talking about his new channel and his ideas for it. The time has come, and I am thrilled to share it with you!

As you watch it, keep in mind that this is from a boy whose speech was severely limited before age five, when a doctor asked his name and he could not answer. Ten years ago, I never dreamed that he’d be able to do these things as a teenager, to speak in complex sentences and upload videos to a website. How does a mostly non-verbal five-year-old progress to this point? I had no idea that it was possible because I had nothing to refer to at the time. Neil was in an intensive, ABA-based program for two whole years before we started hearing spontaneous speech, and we kept him in the program for another year after that. He has continued to receive various services ever since. And it’s all been worth it. Take a look.

I needed a tissue, but that’s just me.

 

The Everyday

When you have a special-needs child, there are plenty of things that you wonder if your child will ever be able to do. So when they actually happen – when you hear your five-year-old say I love you, even though it’s echolalic, or when your child sleeps in their own bed, or doesn’t wet it, or when he holds a pencil for the first time, or pets a dog – we note the occasion with much fanfare, and rightfully so. We know the effort involved in making those things happen, how long we waited, how much we hoped. They are nothing less than miracles.

But milestones don’t happen every day, of course. If they start happening every day, they’re no longer milestones. They become part of our daily life, the status quo. They are the everyday. And sometimes I find as much hope in the everyday as I do in the milestones. Why? Because we can’t live from milestone to milestone. We live from day to day.

My son was diagnosed with autism at the age of three and did not start talking until he was five. In 1997, we didn’t know for sure if he could learn to talk. And so when he slowly got started – first with various stages of echolalia, then, when he was using more spontaneous speech, learning pronouns, articles, tenses, and syntax – I was overjoyed. It didn’t matter to me that his voice was always flat, usually expressionless. I figured it would always be that way, and I loved it. I never even hoped that he would develop voice inflection because I was just glad to hear his voice in the first place.

Two years ago, our regional autism consultant created a weekly social skills class for my son to attend at his school, so that he could learn to communicate more appropriately with his peers. The object of the class was to instill conversation skills and teach socially appropriate behavior as well as how to interpret gestures and non-verbal communication. But something unexpected happened, and I can only attribute it to the social skills class. About three months after he started the class, I began noticing that he was using voice inflection. And he was doing it appropriately, not just random variations. He was putting emphasis on the right words and his tone was no longer as flat. And he’s been doing that for almost two years now. 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 is now regularly conversing with voice inflection. That is now my everyday. And that is what gives me hope.

It’s true, the milestones sustain us. They are remarkable, miraculous, and worth every bit of celebrating. But when you sit down and stop to think about it, when you realize, hey, we’ve been using the PECS cards for three months now and my child rarely shrieks at home anymore, thank God, that is your everyday. That is where hope lives.

I’ve had many different everyday realizations over the years. In fact, that one about the PECS cards was one of them, over twelve years ago. Then I had another one a few years later when I realized that we were no longer using the PECS cards. There have been many other everyday realizations, equally hopeful. But now, my son is speaking with voice inflection, an unexpected gift, and that is now my everyday. What’s yours?

Pun and Games

The Scene:  Sunny but cool day on the Oregon coast. Waves crash on the shore, birds call as they fly overhead, and a few people walk by with their dogs. A small waterfall rushes out of a fern-covered hill at the back of the beach. The water gurgles over a rocky area and forms a little creek that meanders out to the sea. Two teenage boys and their uncle are building a dam out of logs, dried grass, and sand. Nearby, a woman watches as she reclines against a large driftwood log and enjoys the sun.  She is glad that the boys are outside instead of sitting around in the cabin they had rented for the weekend, watching more DVDs than most people could watch in a fortnight. The dam is working; a pond forms as the water collects, and the older teen boy stands in it while pouring sand out of a bucket.

Teen boy (calm, even voice):  This water is damn cold.

The woman, his mother, thinks it is probably a line from one of the movies he had watched the previous night  – The Abyss – which involves a lot of cold water. Her son repeats the line a few times, and the mother realizes that he is most likely expecting a response from her.

Teen boy (fourth time, in same tone): This water is damn cold.

Mother: Yes, I’m sure it’s pretty cold.

Teen boy (same tone as before): This water is damn cold [gestures to the dam wall, then smirks]. Get it? ‘Dam cold’?

The Year He Was Indiana Jones for Halloween

The Scene: Interior of suburban family home. A mother is cleaning out the closet in her office. Storage boxes – some opened, some closed – surround her where she is seated cross-legged on the floor. She holds several papers in her hand and emits a chuckle as she reads things that her autistic son has said over the years. He started putting two words together at age five and gradually, with time and therapy, increased. She marvels at his progression from “Green is in the finger,” said at age 6 when he noticed green paint under his fingernails, to “If it gets too cold or too warm, then I would call out for you,” said at age 10 while his bathwater was running. But his lifelong interest in geography and history produced some of his most memorable quotations. The mother laughs as she discovers her scribbled notes from when her son wondered, at age 8, “Does Canada speak Leafish?” as well as the following discussion that took place three years ago, at age 12:

Son: Would it be offensive if I was Adolf Hitler for Halloween?

Mother: Probably to some people.

Son: What about Japanese Naval General Isoroku Yamamoto?

Mother: The one who bombed Pearl Harbor?!

Son [pauses, considering]: Mussolini?

An Open Letter to My Son’s Teacher

Dear Neil’s Teacher,

At the Scout meeting on Saturday, I know that you were laughing good-naturedly when Neil 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. Neil 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 Neil 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 Neil’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

A Normal Man

Image credit: simon gray 

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

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

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

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

“You mean when I’m 18?”

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

“20?”

“I think that’s a bit early also.”

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

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

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

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

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

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

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

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

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

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

Oh, honey. I got you covered.

Polite Conversation

‘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, Adam’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 Adam 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 Adam 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 Adam 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. Neil 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 Neil 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. Adam and I, glancing at each other, were stunned by this monologue. Neil 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 Neil and converse with him. He’s been at our house so many times over the years that he’s quite used to Neil’s different way of communicating, but he wasn’t sure what to make of this. I decided to gently intervene.

“Neil? What are you saying? Can you use your own words?”

“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,” Adam added gently.

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

Image credit:  ‘Robert Owen-Wahl’

The First Sorry

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.

The Wonderful Thing About Tigger

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.

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.