LIFE IS A SPECTRUM

1stschool

First day of school with Willow, his best bud / sister/ best therapy money can't buy.

I’m long overdue for this update. Partly, it’s because I now work full-time outside the home and have less blogging time. And partly, I’ve blogged less because we’ve just been busy living our lives.Not that we weren’t living, obviously, when I was blogging a lot more. But I’ll be honest: I didn’t get out of the house much.

In the past year, we’ve taken our first family vacation together (without extra child care help), Billy has started after-school, and we have a cadre of phenomenal babysitters, who have assured me that Billy is by no means the most difficult kid they babysit … in our house.

Yes, my “special needs” kid is currently by FAR the easiest kid to parent in many ways. Let me quote the wisdom of a refrigerator magnet I picked up somewhere: “Normal is just a setting on a washing machine.”

So Billy is in first-grade and mainstreamed now. He has an amazing teacher (the same awesome lady he had for kindergarten), as well as a team of therapists and aides that support him at various times during the day – particularly during writing and math, which are his least favorites.

He loves reading – and he’s pretty good at it! He’s an awesome artist and has a real passion for drawing. We’ve discovered he can hula-hoop better than anyone we know, and he picked up the jump rope and started doing it almost instantly. Who knew?!

There are SO many factors which play a part in all the progress he’s made, but I wanted to highlight a couple of points:

ABA Therapy – Applied Behavior Analysis changed our world for the better. I definitely think we lucked out with the greatest therapists in the world, but I also think the therapy was exactly what Billy needed – and us too.

We went from him being un-potty trained at the age of 4 ½ and incapable of holding a conversation with anyone to … less than two years later, he initiates conversations with peers, tells jokes – and poops in restaurant bathrooms completely unaided. He can dress himself, participate in circle time, tell me about his day (a bit), attend birthday parties, play games with friends in after-school.

This is not to discount the phenomenal contributions from speech therapy, occupational therapy (which helped significantly with his strides in handwriting and dressing), and special education. I highlight ABA because they go with us everywhere they’re needed. We have a problem with including Billy at church? Our ABA therapist shows up and gives us suggestions. We struggle with eating (an ongoing struggle, to be honest): They come to dinner with us (God help them) and observe, analyze and craft a plan for measureable improvement.

At no point do they try to “break his will” or just “teach him scripts.” Ok, certain scripts he has learned, like the answer to “What’s your address?” or how to say “Hi, I’m Billy!” But they push him to expand his comfort zone and use the language he has in a variety of settings and as a result, he applies it more and more effectively and has grown his social vocabulary enormously.

Focalin XR: This is the stimulant Billy began taking about 8 months ago for ADHD. One of his therapists who had observed him over a couple of years said that “there are attention problems that I don’t think can be explained totally by autism. We should have him checked out for ADHD.”

Now, attention disorders don’t always – in fact, they rarely – behave the same way with a child with autism as with ADHD-only kids. They metabolize everything differently. And kids with autism respond differently to new stimuli – which the “on my meds” world can offer sometimes.

For years, I had been VERY skeptical about medications and autism. I had seen so many kids who seemed to be over-medicated … or seemed to my COMPLETELY inexpert eye.I say all this so that you’ll understand the massive nature of my turnaround. Focalin changed Billy’s world. I have no doubt he would not be mainstreamed right now if it weren’t for getting him the medication he needed to calm his system.
He used to rock his chair non-stop at the dinner and homework table, script all the time, buzz back and forth and crash and bang into things. Now we have conversations with him; he focuses on instructions at school, and he can happily complete a task – whether it’s homework or drawing a picture of his own creation – and take pleasure from those activities.

I’m not suggesting that meds are the answer for everyone – not at all. I’m just sharing my experience, in case there is someone as “on the fence” as I was who was wondering what they outcome had been for one family.

Word of caution: getting the medication right AND the dosage of the medication tweaked can take some time. Based on Billy’s weight, the guidelines recommend he should be getting twice as much, but when we doubled his dose, he seemed to get really anxious. So with our doctor’s guidance, and therapist’s data and recommendations, we cut him right back to the minimum dose.

Eventually, when he gains a little weight, we will probably try upping the dose again and see how he handles it. Because he could probably still use a little more help with his attention, but he’s doing so much better that we’re not stressing about it.

OCTAGON-299x296

Happy Halloween!

Life is good. Life is a spectrum – of success, of disappointment, of happiness and fulfillment -- but that’s a very good thing.

Yesterday morning, I walked Billy to school. Prior to this morning, he had been quite insistent, when I asked him what he wanted to be for Halloween, that he wanted to be an “octagon.”

Don’t get me wrong: I don’t try to stifle my kids’ unique, creative spirit. I was fully prepared to create a sandwich board-style stop sign costume for him, if that was, indeed, what he wanted to be for Halloween. But I tried to keep introducing him, in a non-pushy way, to other costume ideas that might be easier to wear all day at school …

Well, in the midst of our discussion of all the costumes our friends might wear, Billy ran into a buddy waiting at the cross-walk.

BUDDY: (at top volume) Hi, BILLY!!!!!!!!

BILLY: (at subdued volume) Hi, Buddy.

(then)

BILLY: What do you want to be for Halloween, Buddy?

(At this point, I had to pick myself up the ground so shocked was I that he had initiated an on-point conversation with a peer, a question that was entirely appropriate for his age and the social setting – unlike the recent survey he’s been running with any and all passers-by: “What color is your house?” )

BUDDY: I’m going to be a SCARY MAN!!!

BILLY: (after a pause) What kind of scary man are you going to be?

(And at this point, I think I lost consciousness for a full thirty seconds and I came back to life – after this unprecedented FOLLOW-UP QUESTION – to find Buddy explaining to Billy about how his Scary Man costume would have red eyes.)

BILLY: That’s cool. (in a voice that said he wasn’t convinced at all that this was cool, thus proving that he is trying out the art of the socially acceptable lie to save someone’s feelings.)

BUDDY: What do you want to be for Halloween, Billy?

(The mom is listening. The crossing guard is listening. Other parents and their kids have started listening. Oh dear, Oh dear, Oh dear. Don't laugh at him. Support his unique choices. If you act like my son is weird I will punch you.)

BILLY: An artist.

(Wait, what? AN ARTIST!? HALLELUJAH! It’s a person! It’s something he’s genuinely interested in!)

BUDDY’S MOM: Well, that’s … unusual.

(At this point, I burst into hysterical laughter. “Unusual?!” Lady, you got no idea.)

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Hooray for Billy!

Total 7 comments

If anyone had told me this moment would be possible even a year ago, I wouldn't have believed it. But autism or no autism, we have no idea what is possible ... Life is a spectrum, yes, but it is so much more. It has dimensions we can't see and takes us on a journey that has as many ups and downs as it has steps forward. Ask a parent to describe a moment so joyful that she can't swallow the tears fast enough, and we realize how inadequate words are to describe life. Luckily, we have more than words. We have iPhones. And we have music ...

A couple of years ago, comedian Denis Leary (Rescue Me) published a book, Why We Suck: A Feel Good Guide to Staying Fat, Loud, Lazy and Stupid. He made some mildly funny comments like, "If God didn't want us to eat cows, why did he make them so slow? Did you ever eat a cheetah burger? No, and you never will." (With that logic, Denis must be scarfing possum burgers on a regular basis.)

denis-leary

He also made the following comments about autism: "There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don't give a [bleep] what these crackerjack whack jobs tell you - yer kid is NOT autistic. He's just stupid. Or lazy. Or both."

I don't know where to begin. But I don't have to. Leary was royally raked over the coals by absolutely everyone. From the Autism Society to his own college alma mater (for which he very successfully fundraises), everyone was demanding apologies.

He's a comedian. I get that. And I've said before, sometimes autism, like everything else, is funny. His statements, though, were not. They were idiotic, misinformed, tasteless, ignorant and hateful.

But even that I could have forgiven him if he'd come out and said, "You know what? I'm an ass, and I'm really sorry for what I said. I got carried away with being funny and forgot to be a human being."

But no, his explanation, when it came, actually accused everyone else of taking his comments "out of context." Unless the context was "Everything I'm about to say is stupid," I can't imagine how the context could explain away those statements. The title of the chapter was "Autism Schmautism."

Here's what he said as a way of explanation: "The bulk of the chapter deals with grown men who are either self-diagnosing themselves with low-level offshoots of the disease or wishing they could as a way to explain their failed careers and troublesome progeny ..."

Really? This is a big problem, is it? Because I know a lot of people in the autism community in this area and I've never met a single adult who had self-diagnosed himself as a high-functioning autistic to explain away a failed career. I've known some adults that I thought probably were high-functioning autistics, but to my knowledge, they're convinced they are completely normal.

Maybe this is some big trend out in Hollywood; those of you who live there will have to tell me. Stupider things have been trends: bed head, heroine chic, Channing Tatum. Maybe the big thing at LA parties that Denis Leary attends is to stand around and pretend to be autistic. That must make for one weird party.

Or maybe Denis Leary has been in the company of parents of autistic children who are musing on the possibility that some of their own traits seem kind of autistic too. We do that. The whole puzzle of it seems so baffling that we search ourselves for signs of this disorder to try and make sense of its sudden appearance in our families.

Dave and I have spent many a night discussing this very idea that we're both a bit "Aspergers-y." I, for instance, have to read four books at once. They're stacked up at my bedside. I read exactly one chapter in each, move it to the bottom of the stack, and then read a chapter in the next. I also do housework this way -- four activities at once, and I rotate between them until they're all done. I count compulsively. I have a phobia of the telephone. And social situations. And dressing room mirrors (Ok, that's not so much Aspergers-ish as having a fear of seeing myself from behind).

Dave goes completely off the rails if he has the tiniest stain on any part of his clothing. It can be on his pants, behind his knee. And I'm not kidding: We have to turn the car around and go home for him to change.

What does all this amount to? Nothing really. It's just something we do to entertain ourselves or keep ourselves sane. Most people are a little weird if you get to know them. What is normal, anyway?

Autistic kids are described as being "on the spectrum," because autism's baffling range of symptoms, characterstics and behaviors can't be described in one succinct definition. You can be a "little autistic," though professionals don't like to talk that way. Traditional Asperger's falls at this high end of the spectrum. And Rainman is at the other end.

But we're all on some kind of spectrum. Normal, if it exists, is a spectrum. And on any given day, your point on that spectrum can change.

Happiness is a spectrum. Being in love. Sanity. Fulfillment. Being an a-hole is a spectrum and some days I get a little closer to the Denis Leary end of that one than on others.

So maybe Denis Leary knows a bunch of fake autistic people and their fake autistic kids who are using this for ...? For the life of me, I can't really see the advantage. To my knowledge the only perk that being autistic gets you is to the head of the line at Disney World, so maybe they really really like Space Mountain.

But I'm hoping that the next time he has the spotlight and talks about autism, he might focus -- instead of on this imaginary miniscule minority of people -- on the huge number of real autistic kids and their parents who are struggling every day to pay for therapy, find answers, and celebrate the smallest amount of progress. I'll grant you, that's not very funny.

So maybe he could just shut up.

Prompted by all the "Rescue Me" promos I've seen on F/X while watching "Damages," this blog post is an unnecessarily long way to say I won't be watching the new season of "Rescue Me." Because I think Denis Leary is loud and stupid.

Reader Comments

What a loser!

I had no idea Leary had said those things. That shows how popular his book was I guess NOT! He won't get my twenty bucks either.

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