Tag Archives: talking

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 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 my everyday. What’s yours?

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.

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.

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.