Speech

A Christmas Story

by Tim on December 25, 2011

Most of our days are filled with a variety of challenges, which often come with a mix of gifts, frustrations, and everything in between. Then there are the rare days when everything coalesces into this unending day of goodness.

Friday turned into this kind of day. It started out with a string of good happenings. Mary made me cookies. I got the stitches in my back out. (Dermatologist… again.) Pathology report was clear this time (previously was very abnormal but thankfully no melanoma). I received – and immediately deposited – a nice-sized check from a client, which will go straight toward Project Pay Off the Credit Cards when it clears. We got a startling amount of holiday and regular life stuff done. I said on Facebook after that, “It’s all gravy from here.”

So it turned out there was a lot more gravy to come.

That evening, out of the blue Santa showed up at the house in the back of a pickup truck. (I kid you not! It’s the South after all.) ‘Mrs. Claus’ and a band of assorted elvish relatives had come to the door with candy. I was getting ready to go for a run, and Mary took Dale Jr. outside to see. The J-Man at first wanted nothing to do with all this, but then I saw him peek out the window and smile at Santa. I knew he wouldn’t walk out there on his own, so I carried him out to the truck to see.

He looked at Santa, then looked at me (In the eyes! Joint attention!) and said, “Santa Claus” and “Ho, ho, ho!” He would alternate between smiling ear to ear and flapping his arms, a clear sign he’s very happy. I even coaxed him into the back of the truck, and he sat sort of next to Santa on the tool box in the truck bed. Mrs. Claus said she’d arrange to get us copies of the pictures of this since we told her we hadn’t been able to get the J-Man to see Santa (the mall = the center of Hell for him).

What they perhaps saw as a simple act of Christmas family fun going door-to-door in our neighborhood really made our day. We only vaguely know them – they live down the street from us somewhere – and they have no knowledge of our kids or our family circumstances. They were simply practicing a not-so-random act of cheer and joy, and in doing so they gave us a wonderful gift. One thing autism has taught me is that goodness and kindness often come burbling up out of the ground when you least expect it.

After they left, I got a great five-mile run in under a crystal clear, star-filled sky in perfect temperatures. I was filled with visions of the J-Man’s face lighting up and his own voice telling me about Santa. (Dale Jr. is still at that age of being rather frightened of him.) I ran without effort. I even found myself laughing.

I’ve been missing my grandmother a lot – she loved Christmas and I loved spending it with her – but I always feel close to her running under the stars. I spent the evening decorating our little “Grandmothers Memorial Tree” on the mantle, listening to Sarah McLachlan, and eating from the mountain of goodies Mary made. I thought of all the Christmases of the years gone by and this wonderful day where people who were essentially strangers brought us joy, a joy our son can now give his own words to.

I understand more each year why my grandmother loved Christmas so much. It’s a time for expecting something magical to happen. It was on Christmas Day in 2004 we told her that we’d be having our first child, and I remember how overjoyed she was for us. I always felt safe, loved, and renewed at her house, especially at Christmas. Now we continue adding on to all these memories.

As time for bed on Christmas Eve approached, Mary read ‘Twas the Night Before Christmas. By the end of the second reading, Dale Jr. had fallen asleep in the living room floor under his blanket. The J-Man was sitting in my lap and drifting off himself.

This is our Christmas present this year, and what wonderful gifts they are.

To all of you – I hope that, however you celebrate them, these days bring kindness, joy, and lasting memories to you and your family.

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The J-Man Wishes You Happy Holidays (With Video!)

by Tim on December 22, 2011

The J-Man would like to extend a variety of holiday wishes to you!

We’ve received a gift eleventy billion times better than anything from a store – him talking a little more each day. And what a wonderful gift it has been to hear his voice!

(Click the click to continue link to open the page with the video.) [click to continue…]

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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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A Case for Kids Repeatedly Watching the Same TV Show

by Tim on June 19, 2011

The J-Man has a tendency to want to watch the same episode of the same TV show over and over again. I imagine this is not an earth-shattering concept to many of you, and it’s not for us either. But I got to pondering why, looking for something beyond the more obvious.

It’s also not earth-shattering news that autistic kids often engage in many kinds of repetitive behaviors and prefer to repeat familiar activities. I’m sure this plays an important role in why he likes chain-watching the same episode over and over. I believe there’s a lot more to it than just that, though.

To an outsider, this sort of behavior may seem ‘non-functional’. (Hey, I think we’ve talked about supposedly ‘non-functional’ behaviors not long ago!) There certainly are many situations in which watching the same TV show over and over again may very well be little more than an occasion to zone out. However, I’m going to argue that there are conditions in which it’s not only functional but possibly a critical component to a child’s learning, autistic or not.

For what it’s worth, here’s my current thought on this issue. I believe there’s a much more specific point to his supposedly ‘non-functional’ repetitive behavior in watching and rewatching the same show. I think he’s practicing the content of the show in his head until he feels comfortable demonstrating outwardly what he’s learned. He often begins this process by watching a show in a manner that to an observer would seem passive. At some point he moves into this outward expression of concepts slowly, intermittently, and often subtly at first, but usually he’s pretty quick to get to where he consistently does it well. Like I said, it seems like he rehearses inwardly until he’s almost sure he’s ‘got it’.

For the J-Man, he particularly likes watching the same episode of Signing Time – an amazing, special needs-friendly series that teaches children American Sign Language and reading and language skills – and most recently Yo Gabba Gabba over and over. He’d probably watch an episode a half-dozen times in a row – at least – if we let him. However, it’s worth noting that the specific episode he wants to watch eventually changes, and the cycle begins again.

Here’s why I think what he’s doing has an important function to it.

* He is usually engaging with the program, first by watching intently, then interacting with it in some constructive manner (sometimes a lot, sometimes not as much, but he keeps a relatively high level of focus regardless), and involving us in some way, typically by using words, verbal approximations, or a few signs and expecting us to repeat them back to him.

* He displays greater comprehension of what’s in the episode over time. This is a very gradual process, but his assimilation of the material does increase the more he watches it. This strikes me as the very definition of practice.

* Whatever pieces of the episode that may cause him sensory (almost always auditory) distress seem to cause fewer issues over multiple watchings. It’s like he’s actively trying to work through this distress.

* This is similar to what he’s done often in the past. As a baby and young toddler, he just suddenly did things he seemingly couldn’t do before. There were any number of things we never saw him do at first. We’d just turn around and he’d done it. For example, it took us forever to catch him rolling over and sitting up. We’d turn around, and there he was rolled over or sitting up. He didn’t walk unsupported until he was 22 months old, but once he started, he was running around the house within two days. It’s like he has to organize everything in his head first before he does it in ‘real life’.

* Just as suddenly as he started wanting to watch an episode repeatedly, he often stops being interested in it. Typically this only happens after he’s started demonstrating multiple concepts he’s learned from it. Perhaps it’s because he’s gotten all he can from it for now. At this point, he moves on to another. This interest period typically lasts roughly 1-3 weeks.

Given that communication is one of his greatest challenges – and understandably one of the most frustrating for him – we look for more relaxed ways to help him practice communication. I think after a while he gets tired of being asked to interact with real-life people – most of us do! – so something two-dimensional like a TV screen or electronic gadget of some kind may prove a welcome respite for him. It’s hard to tell sometimes, but it seems that way just from what we can glean from his non-verbals and general mood.

I’ve been pondering these theories about this for a while now, but I’ve been skeptical of it for a long time because of my hesitancy to believe that TV is ever that great for kids (other than to give parents a break for a bit!). I still think for the most part that TV – of either the kid or adult flavor – is crap, but that’s another story. There are a few programs I think make a difference, though.

I’ve become much more convinced that the J-Man is learning a lot this way because of how amazingly far Dale Jr. has progressed in his development watching Signing Time and Pinky Dinky Doo with us. We do try to make it a family activity, though I confess sometimes we turn it on just so we can get a few minutes to eat or go to the bathroom.

Anyway, Dale Jr. just turned two recently. Right now he can: verbally identify almost all upper and lowercase letters (in a variety of fonts too), recognize and verbally label 8-10 colors with little or no prompting, identify God knows how many animals and objects (macaw!?), draw from a working vocabulary of probably a couple hundred words, talk in phrases and basic sentences and engage in some basic conversation, do all this in a variety of contexts (generalization!), read some words (he loves the J-Man’s written schedule board), and use more sign language than I can. Now given our family history, I wouldn’t know ‘typical’ development if it jumped up and bit me, so I’ve asked around, and everyone has told us that this is highly unusual at 24 months. Feel free to correct us if we’re wrong.

Rather than some non-functional, mind-numbing experience, I think this practice is really helping both our kids. The J-Man’s speech skills have increased tremendously of late. I’m not at all advocating dumping your kids in front of the TV all day every day. I’m inclined to think there are very few TV programs with which extended viewing would be appropriate regardless. However, I am starting to believe that using this approach with certain programs as part of a broader plan of, for example, developing verbal and reading skills can absolutely work.

We’re specifically convinced that Signing Time has been instrumental in helping our kids with word recognition, communication skills, and reading. The way they both interact with the show is quite amazing, and they, each in their own way, use those skills in other contexts during the day. We reinforce those skills all through the day in as many ways as we can.

I don’t want to turn this into a lovefest for Signing Time even though I think it’s deserved. Both kids also love Pinky Dinky Doo, which I think may be the most autism-friendly program on TV with all its structure. They’ve picked up tons from it, too. Very recently, they’ve both been really into Yo Gabba Gabba. I can see why Dale Jr. loves it because it’s so movement-oriented, music-based, and silly. I was astonished, though, that the J-Man enjoys watching it and even requests it verbally! If you’ve seen it, it’s not necessarily the most sensory-chill show in the world. It’s honestly kinda trippy. We’re still trying to discern what the J-Man is getting out of it, but when he requests something verbally and consistently, there’s something he’s working on. I’m convinced of this.

So what does this all mean? I do think structured kids’ shows that offer some level of engagement and that stimulate areas your child is working on (e.g., speech and communication, movement/imitation) can be worthwhile. I believe they can offer a lower-key way for autistic children to learn without all the extra energy it takes to interact with people socially. Therein also lies the caution. I see these TV shows as a complement only. The J-Man gets sometimes 9 hours or more of learning, therapy, and social time a day on weekdays. That’s a lot of people time, and socializing can be so draining.

If you set up TV watching times as opportunities for learning and skills reinforcement, I certainly believe it can work well for your child. As with everything else, think about it in context with the rest of the activities you and your team of educators, therapists, family, and friends are doing and how it fits in with your overall learning and developmental goals for your child. TV is simply a tool and a resource, and tools used wisely and for the right purpose can make a big difference.

If you’re interested in Signing Time and want to help support our site, you can get Signing Time DVDs through this affiliate link. We love Signing Time and understand that some people don’t care for affiliate links, so you can also just go to signingtime.com.

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I Still Have a Dream for Autism

by Tim on January 17, 2011

This is a repost of something I wrote for Martin Luther King Day last year. I hope you find it meaningful.

I humbly ask Dr. King’s forgiveness for borrowing from his eloquence and for the meager quality of my own words as I draw from his gift to us, one of the most transcendent speeches in our history. All generations after him will be asked to tell about their dreams for our world. Here are some of mine.

Our futures are inextricably bound together. We cannot walk alone. And as we walk, we must make the pledge that we shall always walk forward. We cannot turn back.

Whenever local, state, and federal governments and the schools within our communities give us and our children so little and then tell us to be satisfied that we even get that, let us say, “We are not satisfied, and we shall not be satisfied until every child has a fair chance to realize their potential and all prejudice is washed away by the tidal wave of our determination and love.”

Let us invest ourselves fully in our families, go into our communities, and do the hard work that has to be done and not wallow in the valley of despair.

Though we face the difficulties of yesterday, today, and tomorrow, I still have a dream.

I have a dream that our children will not be judged by what they can or cannot do but valued for who they are, just as they are.

I have a dream that whenever someone either cannot or is not allowed to speak up for themselves, the very stones in the ground shall cry out and we will all stand and proclaim the immeasurable worth of all.

I have a dream that all persons with disabilities will be treated as equals and afforded equal rights and access in every aspect of their lives.

I have a dream that all children will be treated with respect and provided the education and services they need to express their gifts to the fullest.

I have a dream that wherever injustice is committed against an innocent child that we will respond tenfold with unity, conviction, and action.

I have a dream that people will have access to the vocational training and assistance needed to work and live independently and follow the path they feel called to.

I have a dream that schools will not have to hold bake sales and raffles to pay the bills and that teachers won’t have to buy supplies from the money in their own pockets.

I have a dream that teachers and therapists will be valued and paid at a level nearer to all the miracles they perform everyday.

I have a dream that more money will be spent on services and support for both children and adults.

I have a dream that whenever any of us begins to fall there will always be another to help them back up again.

I have a dream that instead of judging we will take the time to understand.

I have a dream that what unites us will be stronger than what divides us.

I have a dream that we will always be thankful for those who started on this path before us so that we might have faith that we can walk the road that still lies ahead of us.

I have a dream that no one will ever again be forced to choose between getting care and services for their children or buying food.

I have a dream that everyone’s voice shall be heard, regardless of whether it comes out of their mouths, their hands, a computer, or a picture board.

I have a dream that where so many now see despair, damage, and burden that we can instead all discover and proclaim hope, beauty, and opportunity.

I have a dream today.

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The Great Pumpkin Story

by Tim on October 25, 2010

Today the J-Man went back for his first day of school after the 3 1/2 week fall break, which incidentally is why we’ve posted so little lately. Two kids running amok, some travel, being buried in work, a round of a stomach bug, and the normal life chaos will do that to you.

When he goes back to school, there’s always the question of whether he’s regressed during the time off and how long it may take to get back to where he was before break and into the groove of things. We usually hope for a few days. Last year it sometimes took the whole nine-week term…

But today we got this story from his teacher. She should warn me about sending me a joyous message that I might read outdoors because I busted out with the happy tears and then wondered whether passers-by thought I was seriously unstable. That’s OK; it’s more than worth it!

So today we were sitting at the track waiting for a few kids to finish their laps. J-Man was sorta in a yoga position, not stressed just comfy after his long walk. I started asking a few kids about the pumpkin patch. All of a sudden, he popped up and said “I” with a huge smile on his face. So I said, “J-Man, did you go to the pumpkin patch?” He said “I” again. So I cued him with pictures “yes or no. Did you go to the pumpkin patch?” He said “yeye” and patted his chest. Then I said “Did you get a pumpkin?” He patted his chest and tried his best to say pumpkin then said “yeye” again. I was melting with his excitement! He was so happy and proud of himself. It was a moment I will remember forever! Your son makes me honored to be a teacher.

And we are honored that you are his teacher. We don’t have enough words to thank you.

And I am so proud and happy I don’t know what to say!

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Turn it on!

September 25, 2010

In the past few days, the J-man has learned to turn on (and off) lights and a fan. I’m fine with the lights flashing, but the fan is a little scary, so we leave it unplugged when he’s going to be in the room. It really seems to be an “all of a sudden” insight [...]

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Shut Up

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 [...]

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