Saturday, November 26, 2011

Manah Manah

If you know me at all, you know I am a Muppet fan. Jim Henson is my ultimate role model - I can think of no better embodiment of creativity and wonder and all that is beautiful about human potential. I once stalked Frank Oz when he came to a show at a theater I was working at just so I could chat with him for a moment in the lobby. The greatest failed job interview of my life, for an internship with the Henson Foundation, brought me into the fabled Henson office on the east side; more than a decade later I can describe every feature of that townhouse in excruciating detail.

The stained glass window above Jim Henson's desk.

I have been imposing my Muppet agenda on Ryan since infancy. He has grown up on a diet of Sesame Street, Fraggle Rock, and The Muppet Show. I am more than a little proud that he likes to turn random objects into puppets (though I could do without the talking toilet seat).

So it goes without saying that I had to take Ryan to see The Muppets in the theater opening weekend. He loved it. We lost him a little at the end (he started yammering loudly during the last, and quietest, scene), but he left the theater singing Manah Manah and the Muppet Show theme song, so I count that as a victory.

As a Muppet purist, though, I had some serious problems with this movie. While there were lots of great elements (including a perfect cameo by my gay Hollywood boyfriend, NPH), and overall I'd give the film a B, there were things that went against the spirit of the Muppets, and which caused me great distress.  

Spoiler Alert! Spoiler Alert!

For one thing, the Swedish Chef should never have subtitles. He does not need translation. And neither does Camilla (Gonzo's chicken girlfriend).

Also, if the Muppets have to kidnap a celebrity to host their telethon, by the middle of the show said celebrity should embrace what's going on; having Jack Black object to his fate the whole time seemed out of the spirit of the Muppets.

There was a bit too much snark, a bit too much "we know we're in a movie" shtick. Uncharacteristically lowbrow humor. Penguins singing in English. CGI when animatronics would have worked. Wrong wrong wrong. It's too bad Frank Oz and Brian Henson were not on board for this project - they could have righted the ship.

But it had heart, and a song that's been stuck in my head since yesterday, and has probably turned a new generation on to the magic of the Muppets, so I'm going to try to let go of my objections and embrace the new Muppets.

Wednesday, November 16, 2011

Magic Brainstem Doohicky

This will make me sound like the worst parent in the world, but I kind of like it when Ryan is sick.

It's not just because a sick kid bounces off the furniture less and is easier to control. It's because a fever reduces a lot of the hallmark symptoms of autism.

See, there's this doohicky in the brainstem. It regulates fever, and it also governs the release of the neurotransmitter noradrenaline, which is critical for paying attention to your environment. It also contributes to the symptoms of opiate withdrawal, which is what someone like Ryan experiences after accidentally consuming wheat products. There was a great article in Time about this magic brainstem doohicky -go read it, it's good stuff.

So for the last week while Ryan has been running a fairly high fever (it turned out to be strep throat), I basked in his sudden ability to communicate. When a toy went missing, Ryan used complete sentences to tell me precisely where to search - "I think it's behind the cubbies. Can you find it, please, Mommy?" When presented with a choice of two lollipops, he was able to pick one easily - he didn't start by choosing the empty space between them. He was cooperative, generally content, and willing to try to talk to his grandmother on the phone.

Now, if he could do all that without the 103.6 degree fever, we'd be golden.

Sunday, November 13, 2011

The perfect pick-me-up

I spent most of today on the couch, hiding under a pillow. Ryan's been running a high fever all weekend, and my body is fighting whatever he has; I feel like I got sideswiped by a truck.

From under my pillow, I heard Stu trying to get my attention, saying "Honey, it's time to pull yourself together and get excited."

I peeked out. Stu was holding the world's most thrillingly beautiful padded manila envelope. Inside were six paperback copies of Ben Has Autism, Ben Is Awesome.

"It's your book!" he cooed.

My book.
Please excuse the mess. And the unwashed hair. Ah, screw it, no excuses. Deal with my mess!

Breathe.

Nearly two years from when I had written it.

My first book. In my hands.

Yeah, you know I cried. It would be a more surprising story if I hadn't.

I read it, pointed out the things that weren't exactly as they were supposed to be, breathed, sniffled.

My book.

Instantly cured for the moment, I showed a copy to Ryan. I showed him my name on the cover. He read the dedication: "For Ryan." I read to him. I read him the book I wrote for him and for kids like him. I don't know if Ryan liked the book, but he paid attention, which is as much as I could hope for on the first read of a new book. I imagine we'll be reading it again. He made a monster face when Ben made a monster face. He made an elephant sound when Ben made an elephant sound. He seemed to identify with Ben - they have a few things in common, you know...

Artwork (c) Rebecca Rivard

As I read the word Autism aloud, I wondered if my message would actually get through to Ryan. I imagined other parents struggling to say that word in the presence of their ASD children for the first time. I hope this book will make that conversation easier to start.


Ben Has Autism, Ben Is Awesome is available direct from Jason and Nordic Publishers in both paperback and hardcover. Pick one up for a child in your life, or donate a copy to your local school or library!

Wednesday, November 9, 2011

The Look

10/21/11 - Ryan did very well across the street in math today. Although I had to refocus and redirect him a few times but he did well with today's lesson. - Mrs. B.

I thought Ryan was doing well with his new math class. Mrs. B wrote positive, reassuring things in his notebook.

At our IEP review meeting this morning, I got a very different picture.

I requested this meeting so we could make the inclusion math class an official part of his individual education program, so that the school district would be required to have a staff member consistently available to take him to the class.

I sat down at the meeting with my agenda in mind: consistency, increased interaction with typical peers, get Ryan out of that tiny room full of screaming children. The whole team was around the table: speech and occupational therapists, Mrs. B, Mrs. W, school psychologist and her interns, liaison from the Board of Ed. We had leftover Halloween candy and a basket of cheery purple pens.

I thought I was ready.

Someone asked how Ryan is doing in the inclusion math class. Mrs. W gave her impressions: Ryan spends most of his time in class scripting. Loudly. "He's very disruptive to the class. All the other children keep turning around to look at him."


All the other children keep turning around to look at him.

I tried to hide my leaky eyes.

Mrs. B added that for most of the nine sessions Ryan has had in Mrs. W's math class, Mrs. B and her assistants have pulled Ryan out of there after 10 minutes or so because of his inability to focus. This should not have been news to me. Ryan's communication notebook should reflect what's actually going on, not tell me rosy stories giving me false hope about his progress.

My eyes were on fire. I was quietly choking.

We had a rational discussion about the purpose of putting Ryan into Mrs. W's class: to provide opportunities for interaction with typical peers. We agreed that math is not the best forum for such interactions. We noted that Ryan is receiving the same academic content in his 8:1:2 class as the other first graders are getting, just in an individualized setting. We agreed that Ryan lacks the social readiness to properly participate in integrated math. We agreed to find additional opportunities, such as art, lunch, or recess, to work on this goal. We agreed to table the matter of changing Ryan's IEP until various schedules could be coordinated. I thanked everyone and got the hell out of the room as quickly as I could.

In moments like this, I just hate autism. I hate knowing how hard it will be for my baby to integrate with other kids his age. Why does this have to be so hard for my baby? I know Ryan doesn't care what teachers like Mrs. W expect of him, but that's part of what being a member of a society is about: to be a functioning member of society, one must understand the concepts of authority and expectations - that there's a time to talk and a time to listen.

I know that the committee hit upon the proper, rational course of action, but my heart just stops when I imagine a roomful of typical first graders turning around to stare at my baby. Please, someday, let him fit in.

Friday, November 4, 2011

The difference a week makes.


Remember how hard last week sucked? That post directly below this one? The boy's understandably awful behavior and inability to concentrate in math?

In the midst of all that for some reason, I decided to try cutting wheat out of my diet. I had read an article about why so many more people are sensitive to gluten these days, and I learned that thanks to genetic manipulation by the good folks at Monsanto, wheat now contains something like 500 times more gluten than it did a generation ago. Reading the list of symptoms of gluten intolerance, I decided to give wheat-free living a week to see if it made any difference in my life.

My first sign that perhaps wheat had been having an effect on me was that on my second wheat-free day, I went into withdrawal. Fatigue, intense food cravings, mood swings, the whole bit. Days of dragging my feet and feeling like crap.

One week later, both Ryan and I are better than ever before.

Ryan's teacher called yesterday to report that Ryan had gone two days at school with absolutely no scripting at all. He has been focused on his work, making lots of appropriate eye contact, and answering questions verbally.

Outside of school, he's also been pretty freaking fabulous. At the park the other day, he was playing beautifully with a little boy he had never met before. They were running around together and laughing. When another child started throwing snowballs, I encouraged Ryan to try joining in. He scooped up some snow with his bare hand (this boy usually insists on gloves for all winter activities), threw it appropriately at his friend, smiled at him, and said "Got you!" And he didn't get upset when he got hit in the face with snow.

And as for me, I'm out of withdrawal and filled with more energy than I've had in forever. I'm focused, I'm less forgetful, I'm getting stuff done. I really don't want to be gluten free forever - as a native New Yorker, I can not imagine life without proper bagels or pizza - but I can't deny that I feel great.

For Ryan, the difference might also be a change of diet. I've been trying to think of anything at all that has changed in the last week that could have contributed to his sudden progress at school, and the only thing I could think of is that he's been gorging on Halloween candy. Maybe a little extra chocolate is good for you?

You're welcome to use that excuse for yourself, too. Off to raid the plastic pumpkin...

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Shameless plug: I'm also in a great mood because my book is finally available! Please check out "Ben Has Autism, Ben Is Awesome" from Jason & Nordic Publishers. I hope this picture book, beautifully illustrated by Rebecca Rivard, will be a useful tool to help parents start talking about autism with their children on the spectrum, as well as to help typical kids better understand their ASD peers. Order a copy for yourself or for your local school's library!