February 2009

Bragging While Dragging

by Tim on February 26, 2009

This cold that’s going around like wildfire here has knocked me flat most of the week. I’ve been dragging along OK, but any ambitious plans – blogging or otherwise – are just toast this week.

But I will take a minute to brag on the students of all three of the autism classes at our elementary school.

We went to our big, local kids museum here yesterday on a field trip. And when I say ‘we’ I mean all three autism classes at school (Pre-K, K-2nd grade, 3rd-5th grade), which is about 20 kids total. Given that this museum is pretty much like the Hawaii of school field trips in our city, it’s always teeming with children. Wednesdays seem to be your best bet, but it was still pretty crowded.

Our gang was basically doing their thing (playing with the model trains, sorting fake produce in the pretend grocery store, racing models cars down the ramps, playing in the ball pits, and the usual things you’d figure they like) with barely a fuss let alone any big meltdowns or anything. I know our teachers are awesome, but dang!

Contrast this with the barely-contained anarchy going on around us. I occasionally had to serve as the J-Man’s force field to prevent the running, screaming, largely oblivious kids from plowing into him. One of them came within inches of impaling me with a hockey stick. He wasn’t intending to do me an injury, but I highly encourage the Catholic church to make obliviousness at least a venial sin or something. Needless to say, we hauled tail through the ‘real tools’ play area. Seeing kids sawing wood with real hand saws was plenty enough warning for me.

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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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As a preamble to the upcoming sequel to “What’s Your Autistic Toddler Like?” (coming very soon!), I thought we should first go straight to the source in which the diagnoses are defined – the Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition or DSM-IV. (Technically, it’s DSM-IV-TR, where TR stands for ‘text revision’, but whatever.) The people who evaluate your child don’t sit there with just this list and check off boxes, though. The diagnostic tests they do are far more nuanced, but they are in their own ways based on these criteria.

This is one place where those five-digit codes – known as ICD-9 codes – you might see on medical forms and reports (e.g., 123.45) come from. For the record, ‘Autistic Disorder’ is 299.00 and Asperger’s is 299.80, in case you were wondering.

[Standard Disclaimer - This is not some diagnose-it-yourself kit for you to use on your child. A formal diagnosis must be made by a qualified, experienced professional. This is just to give you some idea of what you are looking for. If you suspect your child may have autism, read our "Five Things You Can Do If You Think Your Child Has Autism" post, and especially note the M-CHAT questionnaire. Don't just say, "My kid only gets 5 out of 6 so there's nothing to be concerned about." It's important that you go over any questions and concerns with qualified people; don't just go 'by the book'.]

This is what that text says (below, or “Click to Continue” if you’re reading this as an excerpt). I will say one thing before plowing ahead – our children and their challenges are far more complex than what can be covered in a diagnostic manual. Think of this like a starting place where the road that follows is full of difficulties, surprises, challenges, unknowns, adventures, and joys.

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Happy Blogoversary to Us!

by Tim on February 18, 2009

One year ago today, we planted our shaky feet on to the ground of the blogosphere, and what a long, strange trip it has been.

At first, this wasn’t an autism blog. We were still quite convinced back then that our son was not autistic. We knew his needs were complex, varied, and numerous, but we weren’t ready to put the ‘a’ word into our vocabulary.

At one point I thought about taking the ‘pre-autism’ posts down since they seemed outdated and far from where we are now, but I decided the better of it and left them there. I think people going back and reading through our story need to see that 1) we were really confused back then – and still are for that matter – and 2) being confused is normal and OK.

Those were tough days. But here we are, one year farther down the road journeying with our little superstar who has risen to so many challenges and accomplished so many amazing things. If I could go back and tell the bloggers we were a year ago anything, I guess it would be, “Put one foot in front of the other as best you can, and keep your eyes on the lookout for amazing things to happen. Now turn on your light, and watch him shine.”

We have a lot of people to thank for what feels like a successful first year of blogging. Web site statistics are sort of an imprecise science, but 259 posts later, we’ve had roughly 14,000 visitors in the past year who have combined to read about 50,000 pages on our site. Things started picking up after I did a pretty big redesign of the site, and about 2/3 of all that traffic has come in the last three months. About 125-150 people come to the site each day, which is exciting and humbling at the same time.

We have met some amazing parents along the way, and we are thankful for the friendships we have forged with a number of you. You all have taught us many things, some of which include: 1) we aren’t alone in this, 2) together we are stronger than we are on our own, 3) there are many, many extraordinary people in this world, and 4) our children are profoundly beautiful works of art who have so much to teach us and the world, and our job is to help them shine.

But there is much still to be done. I’ve talked off and on about the ‘next big thing’ I’ve been thinking about, admittedly while providing absolutely no details about it. I had hoped to get that rolling sooner than later, but the more I’ve thought about it, the more ambitious its scope gets. I’ve learned so much from all of you, and your determination to learn everything you can to help your children has inspired me to think, “What can I do to make a difference in the lives of parents and their autistic children?” The answer to that question will be where we head next. I will be looking for your input soon, so stay tuned.

In the meantime, in celebration of our blogoversary, I’ll be rolling out over the next few days a multi-part sequel to the always-popular “What’s Your Autistic Toddler Like?” post. It’s easily the most read post on our site with over 3,000 readers so far, and it’s easily the #1 post people cite when they e-mail us. So the epic sequel is coming – so epic (i.e., really dang long) in fact that I’ll have to roll it out in parts. So, stay tuned!

If you’re fairly new around here or haven’t got around to jumping into the time machine, take a stroll down memory lane and see where we started from. Our first post was inspired by our blog name, which by the way comes from our beloved expression “he can’t find his ass with both hands and a flashlight” – pretty much how we often feel around here.

So go read our first two posts from February 18, 2008 – “The quest to find our own asses begins” and “The Both Hands and a Flashlight Manifesto”. The former shows how parents can see certain things and reach different conclusions, and not see things in hindsight we wish we knew enough back then to see. But it also shows how far we’ve come. Either way, the Manifesto has certainly stood the test of time.

I’ll leave you with a quote from E. L. Doctorow – one of my favorite quotes ever – and the perfect symbol for us and the journey we’re on:

“It’s like driving a car at night. You never see further than your headlights, but you can make the whole trip that way.”

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This is the cold that never ends…

February 17, 2009

It just goes on and on, my friends. Some people started sneezing it Not knowing what it was And they’ll continue sneezing it Forever, just because This is the cold that never ends… That’s where we are folks. Stuck here in the land of Girl Scout camp songs and Ayla-lore about why cough medicine is […]

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What Blogging for a Year Has Taught Us

February 16, 2009

This week marks our one-year anniversary of blogging. And what a long, strange trip it’s been already. Join us as we look back and look forward this week. First, here are a bunch of things we’ve learned along the way so far, though it’s hardly comprehensive! There are a lot of good people in this […]

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