If you've read this blog at all, you know I generally try to keep things positive. The reasons for this are many, but for one thing I have no interest in complaining about my son in particular, or autism in general. But there are tough times, and in the interest of keeping it real, I wanted to discuss this last holiday break for Thanksgiving. There were some wonderful moments and memories, to be sure, but it would be disingenuous to say it was all puppy dogs and lollipops.

This break in schedule — any break in schedule — really messes C up. Routine is his friend, and even a short break really drives him bonkers. This resulted in five days of complete hyperactivity. He was up early — 4 am or thereabouts — and going going going. This means no rest for us. At all. He has to be watched every moment.

Why? These five days were filled with jumping on furniture; writing on furniture; chewing furniture. Putting things in the oven — including an iPod. Flushing foreign objects down the toilet (plumber's on his way today). Stomping on the floor (thankfully our neighbors are very tolerant. Or hearing impaired). Hooting and yodeling at the top of his lungs. Putting gooey things found on the sidewalk in his mouth. Unable to sit and focus for almost any quiet activity. Perseverating on times and dates to the exclusion of nearly anything else. Running into the middle of a busy street for the fun of it. Just going going going.

Then there was the isolation: living in a state of basically always being overwhelmed, we never managed to organize anything at our home, and we weren't comfortable inviting ourselves to someone else's home. Friends say, "It's okay, just bring him along! It'll be fine!" But that means we can't enjoy ourselves at all: we'd have to watch C like hawks, follow him everywhere in a foreign environment (another stress inducer for him, and for us). And, frankly, it's enough to pay a plumber to fix our own toilet; we don't need to do it for someone else's, too. So, going to someone else's home was out — even if we'd been invited.

Normal routines were busted up. Our go-to sensory gym was closed for the holidays (just the time we'd need it most, alas). Social skills class was canceled for the same reason. And to top it off, the Department of Ed scheduled an evaluation for C on Monday, further destroying any semblance of routine. This last item really sent him over the edge: he looks forward to school, and to Mondays in particular, because that is when classroom jobs are assigned. These jobs are very important to C, and so he was utterly distraught and couldn't stop perseverating on it. (My wife finally had the great idea to have C help write an email to his teacher telling her what jobs he wanted for the rest of the week, calming him quite a bit.)

All this acting out was hard on C's twin, too. C's behavior stresses him out, and then he begins to act out, too. Thankfully, as he gets older, M is better able to understand and deal, but it's still touch-and-go.

Whew. Getting that off my chest feels good.

So, gratitude. Yes, there were moments of gratitude, too. I'm grateful that the weather was incredibly nice, allowing me to get C outside for extended periods. I'm grateful to my wife who made a wonderful Thanksgiving meal despite it all. I'm grateful to C for taking one tiny bite of the meal — sweet potatoes with marshmallows. I'm grateful to M for how he's learning to accept his twin. I'm grateful to get back to our routine...until the holiday break, I guess.

But most of all, I'm grateful for our health and general well-being when so many are suffering in unimaginable ways.

Thanks for letting me vent.

The scream

Edvard Munch's painting: The Scream There we are, a happy if weary traveling family, having lunch at a rest stop in Delaware, when C decides something isn't quite right. And so, in an instant, he emits the loudest, most ear-piercing scream imaginable. I mean, it's truly deafening. If you're within a few feet, your ears will ring for a while afterward.

It doesn't last long, this scream, but it's enough to scare the bejeezus out of everyone within one hundred feet — us included.

And now all eyes are on us, some frightened, some glaring angrily, and a few settling into knowing sympathy (or something approaching sympathy). Anyway, this is a relatively new tic C's developed. It happens most often when he's taken out of his routine and put into an unfamiliar, somewhat chaotic on a family road trip, at a rest stop in Delaware!

The first few times he screamed like this, I felt my face grow hot and red with embarrassment. Being totally honest, I wanted to stifle it, to cover his mouth with my hand. But, as I noted, it was over almost as soon as it started — one quick, piercing cry.

I can't say I'm getting used to it, but as with any of his past tics, we know that drawing attention to it will only reinforce the behavior. Yes, that includes negative attention. So we redirect as quickly as possible, get him moving onto the next thing and out of the moment. At the same time, I do my best to shut out any feelings of embarrassment, to ignore the stares and glares. They don't know or understand, and while I'm sympathetic to their ears, my focus is where it should be: on my son.

So if you're out — say in a rest stop in Delaware — and a kid screams at the top of his lungs for no apparent reason, take a deep breath, be sympathetic, and be glad it's not you.

Failing C

2014-04-28-c-repose@2x Our son C has what’s sometimes referred to (non-scientifically) as a "scattered neurology" (high intellect, severe behavior / social deficits), the upshot of which is that it’s incredibly hard to find an appropriate educational setting for him.

So hard, in fact, that the DOE told us they don’t have a spot for him, and have recommended some schools that might. The problem is that some of these schools are up to two hours away, or don't focus on C's particular type of autism.

Add to that the fact that we’ve already been rejected by some schools who say they cannot support C’s unique neurology, and we’ve been feeling pretty down.

Then, one school appeared like an oasis in the desert, a school that could engage C intellectually while helping with his behaviors, a school that created a program focused specifically on children with the same form of autism, a loving school with dedicated staff.

Since C's been in a somewhat inappropriate educational setting for almost two years — one that does’t focus on autism, let alone children with a scattered neurology — it felt like we’d finally had a stroke of luck.

Last Friday the bad news came: we have one week to come up with a huge deposit to secure a spot in this amazing school. This is the kind of deposit that would ruin us financially; given all our past medical and therapy bills, we’re already at the breaking point.

Certainly we can seek reimbursement from the the DOE since they don't have an appropriate spot for C, but that’s risky: we could have our request denied by the DOE and end up owing the entire sum, plus legal fees. In any case, some future arbitration won't help us come up with the required deposit this week.

And now we're scrambling: how do we find a school for our son before September? Do we bankrupt ourselves, cash out our paltry 401K? Do we move someplace (where?) with the hope that they have better public services? Do we put our son into a completely inappropriate educational setting for yet another year?

And so we feel the system has failed our son, yet again. Perhaps more to the point, however: we feel we’ve failed our son...yet again.

And this is a truly awful feeling.

Postscript: people sometimes ask how hard it is to live with autism. My answer: in our particular case, it’s not autism that makes life unbearable, it's the system and support services (insurance, schools, etc.) that do.

Living Underwater

Today was the first of several neuropsychological evaluations C will undergo over the next few weeks as part of our effort to develop an education plan for him. After the session, the neuropsychologist told my wife that C is "fiercely intelligent" but that it's as if he's "living underwater." When I heard this, I thought it was a perfect description of where C is today. It's disheartening because it affirms what we've suspected for a while now: C has regressed. Again.

Last night my wife and I watched videos of C from over a year ago, and it's clear that he's losing ground, not in cognition but in his struggles with focus, attendance, and social reciprocity.


The primary culprit: C is in the wrong school setting. The type of class he's in works for some kids, but not all. C needs more structure and guidance.

So now begins another battle: we'll make our case to the district administrator and hope she agrees that we need to switch schools. We haven't had much luck in the past.

The good news is that both of C's SEITs and the neuropsychologist thinks he's in the wrong type of class. Better yet, even his current school psychologist thinks he's in the wrong type of class, and her school doesn't offer the kind he needs.

But none of that matters when you're staring into the gaping maw of institutional bureaucracy that is the DOE. What's best for your child seems to be of relatively little importance compared to many other factors unrelated to the education of your kid.

Nonetheless, we have no choice but to go to bat for C, regardless of our chances. More gathering of paperwork and filling out of forms; more meetings; more time off work; more frustration and anxiety.

In the meantime, the questions mount: How did we get to this place? Why didn't C's school let us know they couldn't serve our son? Why did we let our fear of being perceived as pushy parents stop us from asking if he was in the right setting earlier? How much time have we lost, and what are the effects associated with that lost time?

How do we pay for any of this? How patient will my employer be? What if his lung disease returns? How is his twin coping? Are there any schools that will help that don't require us suing the school district for reimbursement?

This is what life is like when you're constantly struggling to breathe, struggling to break free, struggling not to be swallowed whole. It's like living underwater.


Some of the looks we get:

  • "Why is your child still in diapers?"
  • "Why is your child screaming and writhing and not listening to you at all?"
  • "Why is your child talking nonsense and making weird sounds so loudly?"
  • "Why isn't your child acknowledging my child?"
  • "Why won't your child respond to me?"
  • "Why is your child lying in the middle of the floor?"
  • "Why is your child making that high-pitched screech?"
  • "What is wrong with your child?"

There we are, in the middle of a crowded cafe. Should've known better; C often has a hard time in group situations unless there is a quiet corner or other safe spot to which he can retreat. Still, we've been housebound for days because of Hurricane Sandy, and it seemed like a good idea to try to get out for a bit.

Wrong. It wasn't pretty. So, we pack it in before we even get our food or coffee, and carry a still-screaming (and hitting / kicking) preschooler back home. Once home, however, there's our little guy again. Bright-eyed, all smiles, humming his favorite song…peaceful and happy in our quiet apartment. And there we are, bedraggled and a little heartbroken…and feeling very judged.

I don't fault people for their stares. They don't know what's going on. They don't know why our son has suddenly and inexplicably gone off the rails, why his tantrums are so…weird, or why we look like we're on the verge of a nervous breakdown. They don't know that this isn't a normal toddler meltdown because it carries the emotional freight of fear and anxiety that Every Day Will Be Like This Forever.

In short, they don't know it's autism.

I imagine that once we've gone, they go back to their pleasant parental chatter while their little ones return to their joyful play. Maybe they think we're terrible parents. Maybe they know something is different and think, "I'm glad that's not me." Or maybe they don't really care.

All I know is that in the moment, when we're struggling to regain some semblance of normalcy, their looks bear down on us. I want to ask them to look away, to give us our moment, to leave us alone.

That's completely unreasonable, I know. It's not their fault; they're not doing anything wrong.

But neither is my son.


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