Speech Therapy

After So Long, I Believe It Now

by Tim on November 21, 2011

Speak your mind — even if your voice shakes. – Maggie Kuhn

Our J-Man is starting to string syllables together. Not many, but he’s doing it. He’s slowly but surely doing it without prompting. It rarely exceeds three or four halting words, but he’s doing it.

This feels like our version of the moon landing.

After so long doubting that he would ever really talk, as I was pulling into the driveway the other morning, for the first time something struck me. I started crying in the car. I believe it now. I really believe it. He’s going to talk, and he’s going to tell us about wonders we never imagined possible.

Even if he never did talk, would it change how dear he is to me, how much I love him, how much I will cheer for him, how much I will fight for him, how awesome he is and will be? Not one bit.

But I see how hard he works at trying to communicate verbally. I see him get so frustrated and upset at being unable to get his point across. I want to know how he feels, what he thinks about, how he sees the world. I want desperately to find some way to unlock his voice. I don’t care if that’s via his voice box, an iPad, or something else. But I feel him trying to show us how much he wants to figure out how to use his own voice. The more Dale Jr. talks, the more amazing things I realize he has to say. And I feel more like a failure as a parent that I haven’t found a way to help our J-Man do the same.

Recently he has been scripting some. He’s stringing together sounds, syllables, and approximations to repeat things he hears, often from kids’ shows he likes such as the “Here’s the Mail” song in Blue’s Clues and the intro song to Pinky Dinky Doo. These are motivators for him, and we are all about those especially since so little historically has been a strong motivator for him. They are familiar, they give him something to focus on, he can use them to practice sounds, and most of all, they make him happy.

I know we all have kids spanning the entire communication spectrum, so to be clear, he’s not suddenly uttering these crystal clear sentences. Some words are shortened – some to the point they sound like rapid, breathless speech. Some of his syllables vary greatly in length and use stresses you aren’t used to hearing. His inflections at the end of words may be all over the place, though they sound almost melodic. But you know, it doesn’t matter how he does it because there’s no one ‘right’ way. This is the purest music to us.

We were talking with his speech therapist recently, and we were all rejoicing that he’s started experimenting with these inflections and different intonations. He’s trying to close off words and say all the sounds in the word, not just the first syllable or two. He works so hard to get it all out, and now he’s staying with it longer and trying to finish the words he starts. He’s known for his clipped, monotone syllables when he does speak. He’s creating his own verse now with rhythm, tone, and meter all his own, and he continues to experiment and improvise.

What he’s doing now sounds like jazz. No, it is jazz.

He experiments with the notes. He is unbound by the stress and unstress of our so-called speaking. He is finding his own way. He is making it up and discovering it as he goes along. We can’t make his mouth, tongue, throat, and lungs make the sounds. He is the musician here. We can try everything we can think of, but so much of this is his journey of discovery. And he’s doing it.

His syllables sway and dance haltingly like middle schoolers at their first dance. He takes verbal steps slowly, carefully, daringly like a toddler, but he keeps at it, laying out one syllable after another. He lines them up like whirling dervishes, dreamy sloths, or slippery snakes, not going where he wants them to yet, but indeed they are going somewhere exciting.

And like a crossword, enough clues are now filling in that it seems bit by bit to be getting easier for him. Eventually there’s a tipping point where the momentum shifts in your favor. Maybe, just maybe, we’re finally there. Slowly but inexorably, it’s happening.

He sees everything around him, feels entire constellations of emotions, has wants and needs, has opinions and ideas, and has untold riches to share with the world. He may experience some or all of these things very differently than most of the rest of us, but that’s what so wonderful about it. What he sees and feels and thinks is unique in all the universe. I want him to be able to share that with whomever he wishes to.

And now these little rays of sunshine are poking through. It’s going to happen.

I see his face beam when he does get the words out. The light bursts forth from every pore in his face. I see his whole body rejoice when he is heard and understood. If there is anything that makes my heart sing more than seeing this in one of our children, I don’t know what it is.

And most of all I see it in his eyes. He now believes it, too. It’s going to happen.

I want this as much as anything. I want him to believe in himself. I want him to know that he can find a way to do whatever he seeks to do, no matter how long it takes. Forget however long it takes anybody else. I want him to know that doesn’t matter. This is his journey of exploration and discovery. He may have to take paths less travelled, or ones not travelled at all. He can blaze his own trail through sheer force of will. There’s magic out there to be found.

I remember all the days trying to get more than ‘kuh’ out of him (the sound that once meant anything and everything). It took months of work day in and day out to get just one new sound. I remember having no idea how he’d ever find ways to communicate and how we’d ever be able to help him tell us what he wants, needs, and thinks.

But slowly and surely over these years, it’s happened. One syllable at a time, he has pulled himself up this Super Everest. I’m still not sure how all this will turn out, but he’s made a believer out of me. He has that effect on everyone.

After so long, I believe it now. And we get to spend the rest of our lives discovering everything he has to say. How amazing is that?

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Shut Up

by Mary on August 23, 2010

Last week we had a parents’ night at school, and discussed communication. The topic was so popular that they were a little overwhelmed in the childcare area, so I ended up leaving about halfway through and helping out. (I carried around the 2 youngest kids and sang to them. My arms still hurt 3 days later.)

We talked about picture boards, and choice boards, and expecting MORE from our kids in terms of communication… but maybe sometimes LESS in terms of spoken words. One of the things the teachers kept stressing was that parents need to remember to stop themselves from overwhelming the kids… with words. They really pushed using pictures to illustrate what the kid needed to say, instead of constantly repeating ourselves. For example, we should say “would you like some apple?” – and then if there is no response, pick up the picture card, and point to the applesauce – and be quiet. Just point.

This one is a hard one for Tim and me. I have to keep reminding myself to shut up, and give the J-man time to process and respond. And keep reminding myself. And keep reminding myself.

The teachers also suggested making the J-man interact with us more – by only giving him a little of what he wants, or only part of what he needs. For example, I know that every morning, the J-man comes downstairs and has applesauce, nuggets, and tea for breakfast. For the longest time, we just went ahead and had everything ready to save time. Now though, he has to ask for each of those things. We also have started giving him half a container of Veggie Straws, when he normally gets an entire container of them for a snack. If he wants more, he has to ask for them! (While I was typing, he asked for crackers… I gave him 3, when I’ve seen the boy eat an entire sleeve! So I’m waiting to get interrupted again.) They suggested when he asks to color, to give him the paper, but then wait for him to ask for the crayons, or even make him ask for specific colors.

One last thing we talked about recently was trying to move the J-man toward forming some letters correctly with his mouth – instead of B and P, he makes this “glottal stop” sound with his lips open. We are waiting (and waiting and waiting) for him to close his lips while making that sound, and only THEN does he get to watch Pinky Dinky Doo, or “do pillows” where we squash him on the floor with pillows for deep pressure. The past couple of times, I’ve just needed to tap my lips and say “lips” and he closes his. The sound is still the same at this point, but the lip position is at least beginning to change.

It’s so slow sometimes that I want to scream. And then, like the “P” lips closed position thing, it’s quick.

One more thing that has nothing to do with communication, but is just too awesome to not mention: I steamed some carrots for Dale Jr, but then couldn’t get him to eat them in pieces, so I ended up pureeing them. I added them to applesauce, and he ate them just fine. Hmmm… how would the J-man react? I am proud to say that he now eats applesauce with pureed carrots (OR pureed butternut squash) AND a dollop of plain yogurt mixed in. I think he may even like it better than the plain applesauce. That makes… NINE FOODS!

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After all the stress, frustration, and general drama around last year’s IEP process (our first), this year’s was the complete polar opposite. It is beyond description to have a team of caring, creative, smart teachers and therapists who have the best interests of your child at heart working with you.

I’m not saying last year’s team – compiled by the county school system with no one on the team from the J-man’s current school – weren’t good people. Far from it. Some we liked quite well, but with a couple of people, we did have some adversarial relationships, and it was clear that it wasn’t exactly a cohesive unit of people used to working together. We got off on the wrong foot with our case manager – and never really got back on the right one – and we so totally distrusted the process at one point that we never really quite got over it.

The end result last year was that we completed the process knowing that without all the work we put into it and without all the pushing and standing firm we did, we very likely wouldn’t have gotten what was appropriate for where the J-man was then.

What we didn’t know back then was that we had gotten the IEP Powerball as an added bonus, almost by sheer luck (albeit with a system we admittedly gamed a bit). We got a school and a set of teachers and therapists beyond our wildest dreams.

To say this has been an amazing first year of preschool for the J-man would be a serious understatement. He continues to grow and thrive and learn and do things that astound us. He has worked so hard, and he has had the best teaching and support we could have ever dreamed of.

Around the table the other evening for IEP 2009 were Mary and I, his lead teacher, the teaching assistant, his speech therapist, his occupational therapist, and the school principal. We talked about the J-man’s many great accomplishments and the areas that still remain a challenge for him. In my mind, we were remembering and celebrating the great year he had and diving in with hope and enthusiasm to plan for the future.

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What’s So Different About Me?

by Tim on July 25, 2009

Slight change of plans this week as we went to meet the J-Man and Mary’s family at the beach a day earlier than planned. We stayed a couple of days and then came back home – and we let the J-Man stay there for the rest of the week. He was having so much fun at the beach that we couldn’t make him leave yet. That was more important than our uneasy second thoughts, which of course are more about us than him.

He comes home tomorrow, and it has felt like missing part of my arm for most of the week. It has been good for us to have a little vacation (or stay-cation where we really played catch up on work and the house for most of the week), but God do I miss him.

It was something to see him lead everybody he could to the back door of the apartment where we were staying in hopes of finding anyone who would take him down to the beach – regardless of the time of day or night. It was really sweet when we got there that he led me down to the beach, just the two of us, like he wanted to show me this amazing thing he’d discovered. I swear it even sounded like he was singing to himself while we were walking down the beach access ramp.

We watched him walk up and down the beach with Mary’s mom, stick his legs a little bit in the surf, and get some sand on himself. They drew literal lines in the sand to visually show him where he couldn’t go past on the beach, and for the most part, he followed those boundaries. (Good thinking on their part – visual cues!) Admittedly he was very little the last time we went to the ocean, but he was so much different this time. Clearly he loves the beach and the water. It was like watching a different kid.

There was only one problem. Most of this happened while I wasn’t around. Whenever he saw me, he ran up to me, held his arms up insistently and sometimes a bit frantically, and wanted me to hold him, to the point of just about having to carry him everywhere. Yeah, I’m a softy toward him a lot of times, but there was something else going on here that I’ve yet to figure out.

I’m a believer that in kids who are minimally or non-verbal, behavior itself is communication, and one of the most essential forms of it they have to draw on. He was trying to tell me something, seemingly very important, and I wasn’t (and still am not) sure what it was. Every time I was in the room, he was like this.

Was it his reaction to being apart from us? Perhaps. Was it more than that? Maybe, and I think likely. Was he in some sort of distress? I don’t think so since he was otherwise having a very good time. This has been really bothering me this week. What all is he trying to communicate to me? And why me specifically?

We wanted to take him to the North Carolina Aquarium while we were there, which is about 5 minutes from where we were staying. I thought he might enjoy the fish and the ocean colors and all the water, but all he wanted to do was cling to my neck. If I tried to put him down, he either did these odd movements around me and refused to hold my hand or just turned around and tried to climb back up me. I’m not even sure he registered any of the fish and ocean exhibits. I felt really depressed by the whole adventure, of course because I wanted it to go a certain way and it didn’t (again, my emotional baggage and not his). I felt like the guy who’s clueless and doesn’t get the obvious message blaring right in front of him.

We also tried going out to eat with the family, and he refused to be anywhere other than on my lap. He was pretty miserable the whole time. He had gotten up really early that morning and was very tired, but it was still uncharacteristic of him.

I know he missed (and still misses) us, and we certainly miss him. I just feel like there was something more going on. Around others, he’d do his thing on the beach, walk up and down it and play some in the water, play out in the backyard of the place we stayed, let others read him stories, and generally be himself in the ways I’m used to seeing him when he’s in one of his more calm and sensory-balanced states. As soon as I came into view, though, everything about him would change.

If all behavior is communication, what’s he really trying to tell me? I’ve been carrying this question around all week, and I don’t feel any closer to an answer.

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This is Part 2 of our series “What’s Your Autistic Toddler Like Now?”, a journey through what’s happening these days in the life of our autistic 3 1/2-year-old son and sequel to our very popular original article, “What’s Your Autistic Toddler Like?”.

Note: Wherever you see “DSM-IV” below, this means that attribute is part of the diagnostic criteria for autism spectrum disorders in the Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition or DSM-IV. In medical terms, a specific combination of those DSM-IV criteria is what brings about a diagnosis of autism.

Same obvious disclaimer as before: We are not advising you on how to evaluate your child. Go get them evaluated by professionals with extensive experience with autism. Don’t just rely on some random people on the Internet – namely, people like us.

If you haven’t already, go back and read Part 1. If you have, let’s continue on!

Characteristics That Are Significantly Present (continued)

Difficulty with social awareness (a bit better but a lot to work on) – I don’t know whether this has an official meaning, but I think of social awareness in a very broad sense as being aware that there are people around you and that they can be engaged with at some interpersonal level. For some time, we referred to other kids in the room as ‘part of the furniture’ as our son didn’t interact with them much differently than any other object in the room.

School has helped him in this regard in that he has regular time every school day with the same children and is involved in activities with them on an ongoing basis. You still get the sense that he’d usually be content without them, but often the emotions of an autistic toddler are inscrutable.

He does enjoy watching other kids do funny things, but watching rather than playing with children is one of those possible signs of autism, and this is a fairly accurate description of where he is right now.

That said, it is nice to see that he’s aware that other people have names, and he can use a name to refer to a person, though usually now that’s only with some prompting.

Continue on with Part 3! [click to continue…]

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Many times over, our “What’s Your Autistic Toddler Like?” post is the most read article on this site. It’s also the post people most often cite as the reason why they write us and become regular readers of our blog. We are gratified by your response to our story about our son and hope all this has been helpful to you and your family.

In celebration of the 1st Anniversary of our blog, I decided to write a multi-part series, revisit that popular post, and update it for what the J-Man is doing now almost 9 months later. The original “What’s Your Autistic Toddler Like?” gave you a snapshot of what an autistic toddler might be like – or at least what ours was like – about three months before his 3rd birthday.

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Many Ways to Say ‘I Love You’

January 3, 2009

As I described yesterday in the “One Syllable At a Time” post, we’re getting some great mileage out of breaking everything down into these syllable-by-syllable exchanges, going as far as dividing one syllable sounds into even smaller parts as needed. So, much to our eternal and unending delight, the J-Man has two wonderful sentences he […]

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One Syllable At a Time

January 2, 2009

Since we’re still in a post-holiday funk around here and about as lively as the furniture, I’m doing a little content recycling today from a recent comment I made to at least get back to posting. I think all the endless eating and football-watching has killed off a bunch of my brain cells! Over the […]

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