Celebrate

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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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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Lessons from the Road – One Year Later

by Tim on July 30, 2011

One year ago today, I started running again after many years. My resolutions from The Great Burnout last year were to run and change my diet. That was basically it, though each involved massive lifestyle changes. But my what changes they have wrought in my life. If you’ll indulge me a bit, here are some things I learned over the past year. Hopefully at least one of them will mean something to you, too.

As with many attempts to improve one’s life, the part not long after I started was the hardest. If you think about it, just starting something new is perhaps the easiest part. Many of us do it every year with New Year’s resolutions. Often they might last a few days or weeks (or hours) because it’s the next step after you start where it’s usually the hardest. The honeymoon is the easy part. It’s when you have to commit to the day in and day out relationship that the work begins. Often, there’s not as much passion and glamour in this ongoing work as we’d hoped there would be. We have to draw our energy from somewhere else.

For exercise and health-related changes, I tend to call this the ‘Rocky Training Montage Problem’. In the Rocky movies, Rocky Balboa has some life crisis, some period of doubt where he thinks about giving up, something then happens to inspire him, and then cue the epic music and grunting in the gym where Rocky transforms into a perfect physical specimen ready to face and defeat an invincible foe, all in the span of about four minutes. The all-day, everyday devotion to the training and hard work required to get there are left on the editing floor. That’s where the really great stuff happens, but it’s also where most of us give up.

[click to continue…]

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Social Stories and the Revelation

by Tim on June 7, 2011

I love it when we have “Holy crap, I can’t believe that worked!” moments. They are admittedly rare, but sometimes you stumble across something that not only works but works so amazingly well that it’s a revelation. And the odd thing is that it may be something you’ve tried before, except now it just clicks for some reason. This time it’s social stories.

A bit of background for those of you new to the concept of social stories. Basically these are simple stories you create ahead of time or even on the fly – typically with both visuals and words – that you go over with your child as a means of rehearsing a situation that they are going to do ‘for real’. This lets you describe a situation to your child in a form that they often enjoy already – by telling a story. You can read it and talk about any pictures with your child in the same way you might Cat in the Hat.

This is a more elaborate example of a social story, but you can make them very short and simple, too. Here are a few more examples and more background on social stories. There’s even more info here (with some sales-y stuff).

Social stories serve many purposes. They can:

  • Explain potentially upsetting situations to your child ahead of time in a safe, calmer environment like your home.
  • Give visual references and cues that help your child understand what is happening, what is expected of them, or what they should do.
  • Serve as a sort of schedule they can refer to again while they are playing out the story for real.
  • Take advantage of our children’s tendencies to script things by providing a sort of script for a new situation.
  • Reduce resistance to a variety of situations in general.

However, whipping up a picture-based social story on the spur of the moment is often not practical unless you have the equivalent of Dora’s backpack filled with picture cards. It often requires planning ahead and typically some computer-based method of putting pictures and text together. It can work great if you are much more organized and forward-looking than we are, but usually it’s when we’re already neck-deep in the mess that we realize we need them.

Cue now the real-life examples of necessity is the mother of invention.

The J-Man’s class recently went to a school assembly that involved a lot of song and loud noise. Not surprisingly, this isn’t his favorite thing to go do. But his teacher, ever the quick-thinking genius she is, drew on her experience with him and her seemingly radical idea to call what must have seemed like the educational equivalent of a Hail Mary pass. She scribbled out a social story on a sheet of paper in a tiny notepad. Just wrote it out by hand, no pictures. And it worked. She read it to him, he appeared to read and reread it to himself a few times, and then he started to calm down. He even seemed to enjoy himself a bit toward the end.

The story was just something simple. I don’t remember it exactly, but this is close enough to get the gist of it.

The J-Man is going to an assembly in the gym.
Assemblies are loud.
People will be singing at the assembly.
Assemblies are fun!

At the bottom of the paper but folded over and hidden from view was “Finished”. When the assembly was over, she unfolded it, showed him “Finished”, and he got up and the class went back to their room.

I thought the success of this might knock us all flat. I didn’t think a social story would do much for him yet, regardless of whether it had words, pictures, videos, or feel-good drugs mixed in with the paper. The fact that a few simple sentences handwritten on a little notepad worked feels like me suddenly being able to bench press an airplane.

And if that don’t beat all, this has kept working, too. Our developmental therapist was with Mary on one of our ‘let’s go practice being in public’ trips to the store. The J-Man refused to go into the store and had a pretty major meltdown from what I heard. Being the resourceful, think-on-your-feet type she is, our DT typed out a social story on her cell phone and showed it to him. She read it to him, he read it to himself, and it worked.

Then at the pool the other day for our class field trip, the J-Man really didn’t want to go to the changing room with me to put on his dry clothes to go home in. He didn’t want to leave the pool either, but Dale Jr was seriously ready for a nap and we had to go. One of his teaching assistants had the inspired idea (sensing a theme here!) to write out a social story about it being time to go. We didn’t have any paper, so she wrote it out using a colored marker and the back of a pizza box. I kid you not. Basically it more or less said, “Pool is all finished. Time to change clothes. Then time to go home.” It worked.

I’m not sure which of these situations was more amazing. To say that I am still awestruck by this is an understatement.

So I’m crazily experimenting with iPod note apps that let you tinker with font sizes and save a library of notes so we can always have social stories ready. If this proves to be the key to overcoming all sorts of issues we’re having, I may start weeping with joy uncontrollably.

Here’s one I whipped up yesterday morning when he wouldn’t get out of bed. I typed this up on my iPod Touch in about 30 seconds. This is a screen shot.

iPod Social Story

He kinda laid there in the bed on his side and read it, looking rather thoughtful about it. After about a minute of motionlessly staring at it, he finally got out of bed and on we went.

Social stories don’t work that well or at all for some kids, at least not without a lot of practice. There’s often a disconnect, especially early on, where the child doesn’t make the connection that the story has a direct relationship with what’s going to happen in their lives.

When we were part of a research study last year, they sent us an illustrated social story booklet about what would happen during our visit. The J-Man loved reading it, but seemingly had no inkling that it was any different from the books he normally reads nor did he show that he made any connection between the story and the research study building when we got there. But that seems perfectly normal. Social stories take practice to integrate into daily life. I have for a long time viewed social stories as a neat idea and worth experimenting with, which we did, but not terribly applicable to our lives. Boy has that changed now.

We’ll keep you posted.

Anyone have experience with social stories that you want to share?

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Holy Cow, You’re Two!

by Mary on May 5, 2011

Two years ago on this day, I went into the hospital to be induced with what the nurses were calling a “BIG baby.” When the nurses, who see pregnant women every day, start talking about how big the baby could be, it’s a little startling. Well, the nurses were right, and Dale Jr was a giant baby!

And now, at two, he’s a big boy. He doesn’t really look like a baby anymore – now he looks like a toddler who is really on his way to being a child. The only time Dale Jr looks like a baby now is at night, when I dress him in a sleeper. I do that intentionally, just so I can pretend he’s still little. (We had planned to have pictures made last week or this week, but then the plague crashed the Flashlight household, and all Y-chromosome-owning people were hit very hard. We’re going to try sometime in the next two weeks with the same lady who did our awesome pictures from last year.)

I wrote a comparison piece about the boys when Dale Jr was 3 months old. The differences were startling even then. They are more so now. We see things we have never seen from the J-man. When Dale Jr first picked up a play phone and said “Allo! babble babble babble, OK, bye-bye” I was shocked.

So let me tell you all about this brilliant beautiful boy, who has enough words for several children. Dale Jr wakes up happy almost every day. He likes to wake up and play in his crib with someone popping in every few minutes until he’s ready to get up. He holds his blanket and sucks his thumb, and is peaceful. After I dress him for the day, we go downstairs where he immediately asks for either Rachel (Signing Time!) or Pinky Dinky Doo, although I tell him I get to watch my own show first thing – yay news for old people. He eats something for breakfast, but seems to have some attention deficit issues there – he eats 4 bites of applesauce, then asks for yogurt and has 1/2 of it, then asks for toast and only eats the buttered part… all while asking variously for juice, milk, and/or water. (He doesn’t yet know there are other things to drink in our house!)

When the J-man was little, Tim and I swore we would dance the tango if we ever had to tell a child to be quiet for just a little while. Honey, we need to take some lessons, because Dale Jr can talk and talk and talk. He says his ABCs and counts to 10, and signs a lot of words, and asks for different Signing Time videos by name (NiceDoMeetYou – “Nice to Meet You” – and HappyDayYou – “Happy Birthday to You” – are current favorites). He picks up any handy object and pretends it’s a phone, although he won’t talk into a real phone when he knows someone is on the line. He brings books to us to read, and will point out letters in the words, or will pretend to read the book to us because he has it memorized (OH wonful sounds Misser Brown do). If you sneeze or cough, he says “BessYou” – showing us that he really is listening. The other day I realized I would have to be more careful about my own words when I said something about “stupid people” and while we were in Target he kept saying “stupid people” as we would pass someone. Oops.

The joy that Dale Jr has brought into our lives simply can’t be described. He is the happy-go-lucky child that I don’t think Tim or I ever were. He still takes a nap every day, for which I am so thankful I don’t know what to say. He goes to bed at night with usually nary a peep, and only wakes up during the night if he is sick. People stop me in public to tell me how adorable he is, and all I can say is “Thank you – we think so.”

Every night, before I take Dale Jr up for his bath and bedtime, we do a bedtime routine, where Tim brushes the little guy’s teeth and holds him for a few minutes. We execute the “Family Sandwich” hug we learned from Pinky Dinky Doo. He says “I love Daddy and Mama.” And then he says “Night night Daddy.” And we climb up the stairs for bath and bed… so we can do it all again tomorrow.

Happy second birthday baby. We love you.

Dalejr2

Dalejr3

Dalejr1

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The Many Flavors of Autism Awareness

by Tim on April 2, 2011

I don’t know why, but honestly I’m having a hard time getting fired up for World Autism Awareness Day. I suppose it’s that we’re aware of autism every day, and we often aren’t quite sure how to speak in coherent sentences one day a year to the large populace who has little to no frame of reference about our children and our families.

I know this day really isn’t about us so much as it is for the rest of the world who doesn’t walk this path each day. It is a wonderful opportunity to reach people who are more likely to be paying attention. I suppose sometimes our awareness-raising efforts the other 364 days of the year leave me a bit weary.

Last year, I wrote a three-part “Be Aware” series that pretty much listed everything I thought people should be aware of. There’s Be Aware – For Parents, Be Aware – For Family and Friends, and Be Aware – For Everyone. Hopefully you’ll find them worth taking a look at.

We try to give our friends and family glimpses into our lives throughout the year. We usually aren’t dramatic about it, at least we try not to be, but we do try to give a realistic depiction of our lives with all its ups and downs. We celebrate and complain. We advocate and we lament. We cycle through the range of emotions from joy to fear and frustration and celebration frequently, often many times a day.

We look for opportunities for awareness all during the year. We tell our story to others when the chance arises whether it’s to educators, therapists, and doctors, co-workers, various people we run into at some function or another, or just random passers-by. We mostly do that to share that yes it is challenging but also that yes there’s much joy in our journey, we’re fairly normal people, and we get to discover wonders others don’t. I got to wear my Celebrate Autism shirt at the marathon, which got several compliments. I suspect at least some people saw it and gave it some thought, or at least I hope they did. I’ll even bite someone’s head off if they are being mean to a child. Not all awareness raising is gentle after all.

One bit of awareness in my life that I need to improve comes from the fact that often we are so aware of our own lives that we don’t pause to think about other parents like us and the unique challenges they face. Every family has a different story, and there is much insight and comfort we can offer each other. Raising our own awareness of this gives us opportunities to learn, feel understood, and grow in our solidarity with each other. Lord knows we need each other.

But that said, we often lack awareness of how we treat our own selves like dirt. We abuse our bodies by eating junk and letting our physical selves waste away. I became painfully aware last summer that if I didn’t stop doing that, I was in deep trouble. We keep pushing all of the fires and urgent things in our lives ahead of taking at least some basic level of care of ourselves. Often that is necessary, but at some point your body is just going to stop letting you run up that debt against yourself.

Some awareness-raisings are months and years-long projects like state-by-state efforts to mandate that health insurers cover autism. Not only do we have to raise the level of awareness among legislators as to why this is so important, we have to dispel the myths that stand in the way, such as how mandating coverage will jack up premiums, that is unless one really thinks that an increase equivalent to a Snickers bar is somehow jacking up.

Locally, we’ve spent much of this year (one of the projects that occupied me for several weeks) raising awareness in our school system regarding why increasing Pre-K special ed class sizes without adding teachers was awful. If nothing else, we raised awareness that people shouldn’t mess with our kids’ futures, we have really long memories, and we will not give up. That said, I think our work did make a positive impact on our school system, and several people gained some much needed insights.

We’re particularly aware that budget cuts are causing devastating impacts on local and state disability services. We have heard that they do not expect there to be any slots for these services for our J-Man or the hundreds of other people on the wait list at least for the rest of this year and maybe not for the next three. The usual 2-5 year wait list for services may go up even more.

Sometimes we can just practice random acts of awareness. Like today, Dale Jr. and I went to Stride Rite to shop for shoes for him. The extremely nice woman who was so patient and kind to our J-Man when we took him there a while back was working today. Dale Jr. had a blast today trying on shoes, playing, and running amok in the store. The J-Man however had a full blown panic attack the entire time when he was last there. She didn’t blink. She just patiently and calmly got us all through it. You know we’re all aware when someone at a business treats you and your child with kindness and respect. Make those companies aware that you are thankful for them and those individual employees.

Other times we have to grind it out with the systems and bureaucracies of the world. Often we have no idea what difference our actions make. We plant seeds and hope for the best. But I think no well-intended step we take is ever pointless. Collectively everything we do accumulates, building on each other’s efforts until something wonderful happens. Maybe it’s quick; maybe it takes a generation or more. So much of that is out of our hands.

Maybe what we can do today and every day is simply ask, what one thing can I do today? Can I make a difference to another family? Can I teach someone about autism? Can I spread a positive message? Can I just randomly act in kindness toward a complete stranger? Can I kick down a door that’s blocking the way of progress? Can I share a word of thanks to someone who has helped us? Can I be a little kinder to myself? This applies whether you have an autistic child, you’re a family member, you work with children, or you just want to be a kind citizen of the world.

Ultimately, if we act in kindness with an intention to make a positive difference for our children, our families, our communities, and our world, I believe that whatever we can do will matter. We might not know how and we may get precious little evidence that it did, but I think we can trust that good things do somehow come.

Today, maybe if what we just say is, Let me tell you about my wonderful child and how I want to make a difference in the lives of all children, that has all the makings of a beautiful day. And that’s how we build a future.

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Our purpose in life is…

November 13, 2010

I think I figured out the meaning of life, but let me at least tell you how I got there. Thursday night we had our victory celebration at the YMCA. My Operation Orange wrapped up along with all the other fundraising efforts of the 180 volunteers at the Y. Our goal between those of us [...]

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The Great Pumpkin Story

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 [...]

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