Friday, September 30, 2011

Princess Jane

Ryan and Jane are classmates for the third year in a row. When we first met Jane, in preschool, she had no language. No words at all. She was like a wild animal - all grunting and shrieking and pushing her way through the world. But if you could get her to hold still for a moment, you could tell she was a sweet, lovable little person.

On Wednesday I brought cupcakes to Ryan's class to share for his birthday. When I walked into the classroom, Jane's eyes lit up. She ran over to me and threw her arms around me.

"Hi Jane! I'm glad to see you, too!" I said.

She pointed at the door. "Kadeen!" she announced. Kadeen was their teacher last year.

"Yes," I replied, "the last time I saw you was in Kadeen's class."

I read the kids a couple of stories, then broke out the cupcakes. The cupcake liners had little pumpkins on them.

Jane smiled and pointed excitedly at her cupcake. "Halloween!" she announced.

"Yes, those pumpkins remind me of Halloween, too. What are you going to be for Halloween?"

Jane pointed at her shirt. "Pih. Pih."

I wasn't sure what she was going for. I took a guess. "Something pink?"

She shook her head a little and tried again.

"Pih. Pih. Princess."

"Oh! A princess! With a crown?"

The teacher informed me that Jane was going to be having a Halloween party.

"Halloween party!" Jane agreed. She made a gesture that I think indicated she wanted me to come to her party.

Then she tugged at my sleeve and pointed at one of the boys in the class while asking "Halloween?" She wanted me to ask this boy what he was going to dress up as for Halloween.

I relayed the message. "Hey Craig, Jane wants to know what you're going to be for Halloween."

"Uh, a pumpkin," he replied.

Jane tapped my arm again and pointed to a different boy. "Halloween?"

She had me ask five different boys about their Halloween costume plans. The three that came up with any answer at all all said they would be pumpkins; I think that was the first Halloween-related word that came to their minds.

"Halloween party," Jane reminded me. "Princess."

I am so proud of Jane. She has worked so hard over the last two years, and has come so far. She has words, but more importantly, she has a newfound connection to other people.

I can't wait to see this beautiful princess, attended by her court full of pumpkins.

Wednesday, September 28, 2011

I can't say No to a bunny.

The night before Ryan's sixth birthday, we assumed our regular bedtime positions: Ryan lying under the covers, me lying on top of the blanket holding two books. He chose which of the books I would read first - a strange story of little elves who make soup out of dirty socks. A few pages from the end, Ryan took the book from me. He never does this. He held the book over his head, studying the pictures - a perfectly normal thing to do, but totally unexpected for Ryan. He turned the pages, I kept reading.

When I held up the next book, Don't Let the Pigeon Stay Up Late, Ryan asked, "Can I read it?" Totally casually, like, you know, I always ask to read the book myself at bedtime.

Knock yourself out, kid.

So Ryan held the book over his head and "read" the whole story out loud from memory while I provided the requisite Greek chorus responses ("No! Go to bed, Pigeon!"). When he got to the part where the pigeon says, "My bunny wants to stay up, too," my heart melted.
It is very hard to say no to a bunny.

At the end of the story, Ryan handed me the book. He still looked pretty alert, so I asked if he wanted one last story. He looked me in the eye and said, "You can turn off the light."

I think my baby is growing up.

Happy 6th!






Happy birthday, Ryan!  Good job decorating that cake!

Friday, September 23, 2011

Almost Six

Ryan will turn six next week. I don't think he knows.

We've certainly talked about it. We've showed him the little picture of a birthday cake on his calendar. We've tried to coach him to answer the questions "How old are you?" and "How old will you be on your birthday?" though without success.

Stu keeps reminding me that Ryan's agenda rarely has anything to do with ours, so I shouldn't get upset that we've never had the typical my-birthday-is-coming experience. No anticipation. No begging for presents. No expression of pride in being a year older.

We used to go through the motions of having a party at the ballpit with the kids from his playgroup, and while I guess he enjoyed climbing and eating cake, it's not like he ever played with his guests. Last year we had a couple of kids over for Ryan to ignore, and a family gathering from which he hid.

This year, we've kind of given up, and we're only having adult family members over; Ryan will not care. Maybe he'll enjoy his presents, maybe he'll ignore them. Maybe he will play with his grandparents and aunt and uncle, maybe he will tell them to go away and he'll play in his closet.

He will not be disappointed.

But I will be.

I keep reminding myself that Ryan is happy - the ridiculous grin on his face when he's playing by himself should reassure me. But part of me still wants to impose my agenda on him.

I want him to get excited about his birthday.

I want him to dictate a list of friends to invite to a superhero-themed party.

I want him to tell strangers "I'm gonna be SIX on Wednesday!"

I want him to ask us for some super-special toy that I don't know how to track down.

I want him to get so excited about his birthday cake that he sticks his finger in it and messes up the frosting.

On his first birthday, he totally got it.
He's my baby. My only baby. And I want to celebrate.

But mostly I want him to care about the same things every typical almost-six-year-old cares about.

Maybe some balloons will help.

Monday, September 19, 2011

Quack of the Month: Devi S. Nambudripad

There are a lot of snake oil salesmen in the autism world. Parents desperate to do something to help their ASD children are easy prey for peddlers of pseudo-scientific "treatments" and "cures."

So in the first installment of what I imagine will be an ongoing series on this blog, I present September 2011's Quack of the Month, Devi S. Nambudripad and her NAET (Nambudripad's Allergy Elimination Techniques) system.

"Quack quack!"

In her 1999 book, Say Good-Bye to Allergy-Related Autism, Dr. Nambudripad argues that autistic symptoms are the result of a build-up of allergens in a person's developing brain in his first three years of life. This is not an uncommon line of thought - think of how Ryan's brain interprets wheat gluten as an opiate.

But then she goes too far.

Nambudripad's method for diagnosing and treating "allergy-related autism" is a bit different than just eliminating problem foods from one's diet. Her primary diagnostic method is a form of applied kinesiology: the patient holds various items in his hand and the practitioner pushes on his arm to test muscle resistance. If the arm offers little resistance, she says, the fault lies in the specific substance held in the patient's hand. So if my arm shows weakness when I'm holding a carrot, I must be allergic to the carrot.

As absurd as this sounds, it gets weirder: if the patient is a young child or is somehow incapacitated, a SURROGATE may be used for the muscle test! The practitioner tests the surrogate while the surrogate is touching the patient, and the patient's energy flowing through the surrogate will make the surrogate's arm weak in the presence of whatever the patient is allergic to.


The treatment is derived in a similar fashion. The patient holds a dietary supplement in one hand while the practitioner pulls the other arm, and the degree of muscle weakness shows how many supplements should be taken. The NAET online store has many herbal preparations with names like "Allergy Help Plus"  and "Pain Balance and More," each for around $25 per bottle. The average patient, according to the NAET website, requires 15-25 "treatments." Figure that your insurance probably won't cover this sort of thing, and you're looking at a hefty price tag.

Surely, if this were a viable method for treating autism (and pain! menopause! food allergies! eosinophilic esophagitis! heart palpitations! glaucoma in dogs! ulcerative colitis! psychic intuition!!! - seriously, check out the patient testimonials), I'm sure the wider medical community would have picked up on this sometime in the last 12 years, and researchers would have published their findings in journals more reputable than The Journal of NAET, Energetics and Complementary Medicine. Surely there wouldn't be such a long thread about it in the Museum of Hoaxes.

I'm going to call BS on this one.

Monday, September 12, 2011

Then again, maybe not.

Some days are just too hard.

How many ways can I say "I don't know where your yellow and green shovel is because you buried it at the beach last week and lost it."

How many ways can I say "What did you think would happen when you dropped your puzzle piece in the crack between the patio squares? Did you really think I'd be able to fish it out?"

How many mornings will I be dragging my screaming, crying child down to the school bus, hoisting his kicking, twisting body up the steps?

There are days when it's really hard to stay hopeful.

Really hard.

When I feel like I'd be totally justified for leaving my kid at the park and heading home alone. When I feel like nobody could blame me for giving up. When I actually allow myself to ponder the big What If.

What If I had a typical kid? What If we just didn't have to deal with this crap?

I count the hours til bedtime, watch a funny movie, and hope that tomorrow morning will be better.

And then I drag my screaming, crying child down to the school bus again.

Thursday, September 8, 2011

Perhaps he's starting to get it.

"The animals can not watch Dragon Tales."

Ryan was calm when he informed me of this. It was a statement of fact - there was not a hint of sadness or regret in his voice.

Perhaps he's starting to get it.

His search for lost toys continues, though his moments of lost-toy-induced panic seem to have become an emotional placeholder for any moment of stress, frustration, or disappointment. It's like a (very very long) shorthand for "I'm upset." The panics seem to be becoming less about the hope of ever retrieving the toys and more about expressing an emotional state.

Perhaps he's starting to get it.

And in a major first, last night he stopped me from reading him a bedtime story and insisted that Daddy take over.

We are turning a corner.