March 2010

Grace on Aisle 5

by Tim on March 26, 2010

Well into a long shopping session at Target the other day, the J-Man was doing his ‘ya-ya chant’. Try halfway laughing, then smile real big, flap your arms, and yell “ya-ya-ya!” loudly over and over again, and that’s a fair approximation of it.

His volume is often a function of how overstimulated he’s getting, not surprisingly. Noisy, busy, open shopping places – you know, like Target – certainly trigger lots of things, but we shop there so much that he’s gotten reasonably used to it. And he normally seems happy while he’s doing his chant, so no big deal.

It does get to be a bit much when he’s either really loud (my own sound sensitivities) or showing off his occasional tendency to go from quiet to 500-decibel ya-ya right when someone goes by, which scares the bejesus out of everyone, especially moms pushing a cart with a formerly-quiet baby in it. Because he still rides in the cart in the kid seat, that puts him right at ear level of the passing babies…

This particular day at Target, the Free Sample Pushers seemed to be everywhere. At the end of every other aisle, employees were handing out free tastes of every edible product you could think of. This, of course, clogs up shopping cart traffic all over the store, makes us non-samplers grumpy, and thwarts my main objective at Target – shop and get out as fast as possible.

So there we were on aisle 5, which was startlingly devoid of people since they were all trapped in the samplers’ gravity well of free cold cuts and toaster strudel on either end of the aisle. The J-Man was full on ya-ya, and I had a terrible sinus headache. I was trying to get him to hush. I had been having luck over the previous couple of aisles making growly noises and tickling him, which was good for some laughs. But he just kept going right back to ya-ya mode whenever I stopped.

I don’t know whether I looked frazzled, frustrated, or what, but a kind-looking lady who had finally cleared the Strudel Gauntlet walked over to us and said to me, “Oh, don’t you worry yourself none. He’s the most precious and most beautiful boy you could ever imagine there being.” Then she looked at him and said, “That’s right. You’re like a big bunch of sunshine. Don’t ever forget how wonderful you are!” Then she went on about her shopping. I was blown away. I don’t even know what I said in return, or if it even remotely sounded like English. In what was probably no more than 15 seconds, she blessed us with her kind, rare, and generous gift.

Perhaps she’s had some experience with other children that’s helped her see where kindness is needed. Perhaps she was ‘one of us’ because we can pick out other families with autistic kids in the store and be understanding. I don’t know, and it doesn’t particularly matter. She seemed to me like a person who would have been kind to us regardless, because I imagine that’s likely how she lives her life.

The J-Man soon enough went back to the ya-ya chant, but with my headache eased and my spirit buoyed by this anonymous woman’s kindness, he and I enjoyed each other’s company until it was time to leave and go home. If anyone stared at us or gave us looks, I never noticed.

For all of you who have been out in public and had other parents cast disparaging looks at you or say something judgmental because of something you or your child was doing, you know that what this good soul gave to us at Target was pure grace.

So in case I was too speechless to say this at Target – whoever you are, for your gift to us, I want to say thank you. I hope you have some sense of what your words and your kindness meant to me.

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Thanks to Sue Baker Photography for the pics!

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Today is the birthday of Fred Rogers, better known to everyone who grew up watching him as Mr. Rogers. He would have been 82 today. To say he’s had a profound and positive influence on generations of children is an incredible understatement.

Today is also World Storytelling Day. Having these two celebrations on the same day is so fitting.

So tell your kids a great story, and go watch some archived episodes of Mister Rogers’ Neighborhood on the PBS Kids web site.

Also, go read about the life of Fred Rogers on Wikipedia. Interesting factoid: His middle name is McFeely. I didn’t know that’s where Mr. McFeely’s character’s name came from.

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Today is Diagnosis Day. Two years later, I can still remember so much about that day. And I’m glad that I do.

We have wondered in the past how to observe the anniversary of the J-Man’s autism diagnosis. It doesn’t much feel like the occasion to invite friends over for a party, make a cake, open presents, and have everyone sing a couple of songs, particularly since he doesn’t much care for crowds, songs outside his comfort zone, or cake.

Last year, we pondered – in a somewhat analytical way – “How Does One Observe ‘Diagnosis Day’?” and looked upon it as a time to remember that turning point in our lives and to be mindful of who we are and the community of people like you with whom we share our experiences.

When Diagnosis Day actually came last year, all of the memories of that day came rushing back. The post I wrote last year I think was the first time I had ever written down the story of that day and the raw emotions I felt. Going back and reading it again was like getting back in touch with the visceral core of our journey.

I was back in the doctor’s office again sitting on that couch, his words distorted in my ears as if I were underwater. I was there watching the J-Man circle that room again and again while the doctor spoke to us. I was there again standing in our back yard angry and hurt and crying. I was there again to feel my resolve harden like a great fist inside me. I was there again, rocking my beloved son in my arms saying over and over again that everything was going to be OK.

I’m glad I wrote our story down. I need to remember all of it.

I am surprised that I almost forgot about it this year. It snuck up on us so quickly. That in itself is perhaps symbolic of where we are these days. Autism is such a part of our every-minute lives that we can’t not observe it every day. What’s ultimately so much different about Diagnosis Day after you make it ways down the road?

Perhaps as much as remembering where it began, Diagnosis Day also should be the parenting equivalent of renewing your wedding vows.

I pledge to love you and be right there with you every step of our way together. No matter what comes, no matter what challenges we face, no matter how frustrated you get or how afraid or overwhelmed you become or how much or how little you say now or ever, I’ll do everything I can to see you through. And together we will discover what you love most and what you most love to do, and we will help you share every gift you have with the world.

I chose you. I chose Mama and your brother, and I have chosen perfectly each time. I chose you the day Mama and I formed you and forever before that. I chose to walk all of the days since I was born to find the path to you, to find you right where I’d hoped you’d be. I chose you the day you were born. I’ve chosen you every day since. And I will choose you every day for the rest of my life. You are our gift. You are the world’s gift. And there is not anything that could ever change that. I am so happy that you are you.

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I realized the other night that the second anniversary of what we’ve called Diagnosis Day is upon us. On that gray, March day two years ago, the doctor said the words “diagnosis of autism”, and we jumped down the rabbit hole into this grand adventure. It’s hard to comprehend how far we’ve come in those two years.

But really it started long before that. The J-Man began feeding therapy at 9 months old. We had an evaluation just before that through our county’s child developmental services agency because he was showing significant sensory aversions not only to food but to all sorts of other things. He seemed ill at ease with many things around him. Something just didn’t feel right to us.

The evaluators referred us to a feeding therapist, and off we went on a road of diverse therapies that’s run the gamut of acronyms and has continued ever since. A little over a year-and-a-half after we started that first feeding therapy, we took the on-ramp onto the autism highway, and here we are.

Dale Jr. is now about 10 1/2 months old. It has been like learning how to parent all over again. He eats everything in the house; there’s almost nothing we give him that he won’t eat. We still catch ourselves being completely amazed by how well he eats. He even self-feeds finger foods. He mimics us, uses a few words and signs a little bit, intentionally asks for some things, and shares his interests with us. He’s proving to be quite a daredevil, he explores everything, and he wants to be the life of the party wherever he goes.

We’ve noted many times how very different they are. It’s a wonderful thing to have two such complex, wonderful, and unique little people in our house!

And he’s about the age we started the J-Man in therapy. This fact isn’t lost on us. We are so programmed at this point to look at every part of our day in terms of the therapeutic that we sort of don’t know what to do when things are just moving along fine with one or both of the boys.

I realized that we’ve been at this a while when I praised the baby for his skillful bilateral coordination and object transference and developing his pincer grasp so rapidly (which is wonderfully useful as he eats Cherrios on his own while we do kitchen chores). I have no idea most times whether he developed any of these or other skills ‘on time’ or not, though from a few years of therapies I know the technical names of many of them.

The term ‘developmentally appropriate’ is usually lost on us. I’m not sure we’d know it if it bit us. Perhaps we’re becoming more at home with the mystery of it all. Our two boys have changed us in very different ways, and we know we have more mysteries still ahead of us than we do behind us.

As they say, “‘Normal’ is just a dryer setting.” We get the privilege of experiencing a completely new parenting adventure, and we have two wise little teachers who will help us learn and value all the diverse and beautiful gifts that make us human. The J-Man does things that boggle our mind. He’s only beginning to manifest many of his incredible gifts, but he has already changed the lives of so many for the good, especially ours. And Dale Jr. is quickly following him down that path.

We have two boys who share perhaps the most important gifts of all. They are loving and kind, they brighten every room they enter, and everyone who meets them loves them immediately. Regardless of where the adventure takes us next, we start from this foundation, from which anything is possible.

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I’ve said in the past that Sensory Processing Disorder (SPD) – sometimes also referred to as Sensory Integration Disorder – had little or no chance of making it into the upcoming DSM-V. (DSM = Diagnostic and Statistical Manual of Mental Disorders; V = 5th Edition) Turns out, I’m wrong, and I’m not sure when I was last this pleased about being wrong. We have an opportunity we won’t get for almost another generation, so get ready to act.

In short, the DSM is where standard, accepted diagnoses for a huge range of conditions come from. It is the bible for most everything we deal with medically as parents of autistic children. The DSM is one place – and for autism the place – where those five-digit codes (aka ICD-9 codes, e.g., 123.45) you might see on medical forms and reports come from, and it’s the manual that governs our lives with autism more than any other in the health care system. More importantly, this is how things get billed to your insurance, recorded in all sorts of forms as your children are evaluated and treated, or otherwise processed in the realm of health care. Essentially, without one of these codes, it doesn’t exist.

Because SPD isn’t in the current DSM (4th Edition), for all intents and purposes, it doesn’t exist. Of course, all of us with sensory kids know better, but your insurance provider doesn’t care. If you’ve been getting sensory-oriented occupational therapy paid for by insurance in the U.S., your therapy provider has most likely been creatively coding it to get it paid for.

If you’re like us, it’s been billed as more general occupational therapy, of which we get 30 visits a year. Once that runs out, tough. Pull out your wallets. OT limits set by insurers often assume a temporary condition, which obviously does not apply to autism, sensory processing issues, or most anything else we deal with. This makes a 30-visit annual limit profane. And that’s why this is so important.

The SPD Foundation has done an amazing job getting everything organized so you can know exactly how to make your voice heard and how we can all work together to get SPD in the new DSM. The American Psychiatric Association (authors of the DSM) is now accepting public comments on SPD, so this is the time to act. The more data and stories they collect about children and families living with and trying to overcome the challenges of Sensory Processing Disorder, the more likely they will be to include SPD and do so in a way that will benefit our children and millions more.

Here are the links:

Please read these pages carefully before you go and submit your comment to the DSM publishers, particularly the tutorial on how to prepare your comments. For example, don’t talk about insurance benefits; even though that’s critical to us, the DSM authors are there to create standards for medical diagnosis and not wrestle with the nightmares of health insurance.

And remember, the public comment period allows everyone, not just parents, to submit something. Parents, adults and adolescents with SPD, physicians, psychologists, occupational therapists, teachers, researchers, and anyone else who works with or diagnoses persons with SPD can comment. So share this call to action with all those people you know.

The DSM is only revised about every 15 years. That’s not a typo. So we won’t get another chance at this until probably the late 2020s. This is a defining moment for autism and all children with Sensory Processing Disorder, whether they are autistic or not. Go tell your story, and let’s make this happen.

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Leap Days and Our Children’s Unchartable Development

March 14, 2010

Child development books typically portray your child’s growth as a gradually, but steadily, up-sloping line described in neatly organized groups of milestones and checkboxes. Days like yesterday promote the idea that a book about autistic child development would be rather like taking a bucket full of checkboxes, strapping that bucket to a roller coaster, and […]

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Autism, Meltdowns, and Sherlock Holmes

March 7, 2010

“When you remove the impossible, whatever remains, however improbable, must be the truth.” – Sherlock Holmes Meltdowns – or perhaps we should call them ‘strongly, vocally, and dramatically expressed opinions’ – have become an all-too-frequent occurrence around here lately. I’ve read many posts and heard many stories from parents of autistic children talking about their […]

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