Tag 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?

Ninth Grade: A Review

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

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

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

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

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

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

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

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

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

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

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

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

June: Neil had a major seizure, his first.

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

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

If I Blogged 5 Years Ago

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.

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.

Music

There has been so much research done on music as autism therapy that I couldn’t possibly address the multitude of positive effects from it in one post. What I will do here is discuss the effects that I have seen with Neil, including increased verbal skills, better sensory integration, and calming influences.

According to the Autism Research Institute, “Autistic children have also made enormous strides in eliminating their monotonic speech by singing songs composed to match the rhythm, stress, flow and inflection of the sentence followed by a gradual fading of the musical cues.” In his early years, Neil watched a ton of Disney videos from which he learned to use echolalia as a means to communicate. These Disney videos also had songs that he would memorize that taught him rhythm and voice inflection, and from them he gradually gained the verbal skill of using his own words.

As he got older, Neil began to pay more attention to the music I listen to, which is a mix of classic rock, alternative, techno/dance, world, Celtic, and more. I noticed that the categories that feature harder, faster beats (some rock and techno) seemed to help with his sensory integration. He learned how to filter sounds that previously had caused him to go into sensory overload, like air hand driers in public restrooms and other loud, mechanical sounds. And now, he likes the music for its own sake; he rotates his favorite CDs on his own stereo (mostly movie soundtracks like Twister, Back to the Future, and Cars) and sings along.

I highly recommend playing music for an autistic child (and every child), not only as an effective therapeutic device, but also for the soothing value of it. Music adds to the quality of one’s environment and life in so many ways.

Image credit: Olga Abolinya