Friday, October 28, 2011

In Which We Pretend Ryan is Typical

For the last week or so, Ryan has been nudged into typical first grade. An aide has been taking him to an inclusion class in the main building for 45 minutes a day for math class.

So far, it's not going well.

Ryan's school experience up to this point has been very different. He's been in a room with no more than seven other kids and with at least three adults at all times. In his regular class each student has his own Individualized Educational Plan and works on his own lessons at a little table with a teacher or aide sitting next to him to keep him on track.

Now, his math class has one teacher and about 20 kids. All the kids sit at their own desks and face the teacher. Mrs. W. talks and the kids are expected to listen.

And among these tidy desks and orderly, forward-facing, listening children, there's my kid. Scripting away. Reciting the cannon of Mo Willems or his favorite episode of Fraggle Rock, eyes on the ceiling, laughing like a maniac. An aide sits with him and tries to keep him focused on math (and from being a distraction to the other kids). But, as his teacher wrote in his notebook, "We're going to keep trying. This is going to take patience."

The bigger problem, as far as I'm concerned, is that while Ryan is getting used to any major transition, he turns inward more and more throughout the day. More scripting at home, more strange behavior, ever harder to get him to visit our world.

And since this math class is not part of Ryan's IEP, there is no dedicated staff member assigned to take him there every day, so when the school is short-staffed, they just don't take him. The lack of consistency makes the transition infinitely more difficult. More scripting, more throwing flashlights out the window, more accidents, more grunting instead of speaking.

So next week I have to meet with someone from the Board of Education to work on updating Ryan's IEP so that the school will have to provide an aide to bring him to math class every day. If this can't happen, I'd rather sacrifice the educational opportunity of joining the typical kids for math than sacrifice the consistent routine. Ryan can get used to a new routine, but he can't adapt to a sudden lack of routine.

At Ryan's current level of distraction, I don't know how we're going to get him through Mrs. W's big typical-kid homework assignment that's due Monday. He came home with this 13-page "My Book About Me" packet, in which he's supposed to answer questions like "My birthday is in ____" and draw pictures of his family and his house and his favorite food. I imagine a typical child could bang this out in half an hour, but it could take us that long to get Ryan to focus on writing his name. And this is a child who has yet to answer a "What is your favorite ____" question. Ask him what his favorite animal is, he'll have no idea what to say. Ask him which of the two objects he's holding is his favorite, he still won't answer.

It's going to be a long weekend.

Monday, October 24, 2011

Quack of the Month: Brain Gym

Earlier this month, a friend of mine was appalled to discover that her daughters' preschool had spent her tuition dollars having its teachers certified to teach a form of applied kinesiology known as Brain Gym. Promoters of Brain Gym say it is beneficial for all people of all ages, and many believe it has special benefits to people with special needs, including autism. Cue my investigation on the topic.

This child is doing a "Cross Crawl"

Like many pseudoscientific cure-alls, Brain Gym starts from a sensible idea, and then it goes waaaay too far. The sensible starting idea is that exercising the body is good for the brain, and that including physical activity in a child's day improves his or her academic performance. I'm down with that.

Where they go too far is their assertion that their set of 26 specific postures and movements will help develop neural pathways to connect the right and left hemispheres of the brain and increase the flow of "electromagnetic energy" throughout the body. For example, did you know there are brain buttons just under your collar bone? This video will show you how to push them to, um, turn on your brain. Stick around for the whole video and the lovely Australian lady will also demonstrate how to do an Energy Yawn.

For one thing, that whole left brain/right brain separation idea is a myth. You use neurons from all over your head at the same time.

Second, no truly scientific studies have been done on Brain Gym; the studies that Brain Gym's founders cite as proof of their accomplishments were self-published and not replicated by impartial researchers. As it says on the Brain Gym website's FAQ page, "The work is based upon empirical experience rather than neurological research." I have seen no proof that these specific exercises have any more benefit than playing tag or jumping rope.

Now, I don't know that Brain Gym would do a kid any harm, aside from filling her head with pseudoscience and misleading her about how her brain actually works. But Brain Gym is a business. A business that thrives on licensing fees from thousands of schools and preschools and therapy providers. According to a local instructor with whom I emailed, practitioners are sub-licensed to teach Brain Gym (at a cost of $200/year) and return 10% of their profits to the Educational Kinesiology Foundation (Edu K). The licensing process involves a significant investment of time and money: 200 hours of coursework (at around $20 per hour, this comes to thousands of dollars), six private consultations from a licensed Brain Gym instructor, and 15 case studies.

I'm exhausted just thinking about it.

Perhaps it's time for an Energy Yawn.

Recommended further reading: The Skeptic's Dictionary

Thursday, October 20, 2011

Making friends is hard.

Two kids I had never seen before were kicking a soccer ball around the patio behind my building. When Ryan noticed them he ran straight for them. Wow, I thought, he's going to play with new kids!

This is when I realized how many small steps Ryan still needs to master in order to successfully initiate playing with other children:

1) First, approach the children. Stand close enough to them so they can hear you when you speak, but not so close that it's creepy. Do not run headlong into one of the kids so you bounce off her and fall on the ground.

2) When standing at an appropriate distance, look at the children and say, "Hi, I'm Ryan. What's your name?" We practiced this several times, and the "what's your name" part mostly came out; the girl's name is Adrianna - we have no idea what to call her little brother.

3) Ask to join the game. Do not just ask someone's name and then stare.

4) When the children explain what game they are playing, figure out how to incorporate yourself into that game. When the kids say they're playing soccer, you may be assigned to a team, and will be tasked with either kicking the ball toward a goal or defending a goal. It is not appropriate to step back from the kids and act out that part of Mickey Mouse Clubhouse when Goofy is "practicing soccer" with a song and dance.

5) Play with the kids. If you ask to play with the other children and they say yes, they expect you will actually play with them; they do not expect you to wander off without further comment.

We have a few things to work on.

I will try to focus on the fact that Ryan was interested in playing with these kids - so interested that he actually asked me, "What's his name?" That was a big ol' first. I suppose that's the real Step One: noticing that other kids are playing and having the desire to join them. Now that we have that one, perhaps we can start on some of those five pesky follow-up details.

Tuesday, October 11, 2011

Two new reasons I'm proud of my kid

Ryan's outgrowing his autism-only classroom. He needs typical kid models. He needs to interact with typical kids. He needs to get out of that creepy little room.

Starting next week, Ryan and an aide will go to an inclusion class at the school's main building for math class every day. He will also join that class for library time, which will provide even more opportunities for social interaction. I'm thrilled - and all that is one new reason I'm proud of my kid.

The other reason? My kid mouthed off at his teacher.

Mrs. B. told me about this in the context of "When he wants to, he can really talk." Apparently she was trying to get him to do something he didn't want to do, he got mad, and he shouted at her, "You're a stupidhead!"

At first when Mrs. B. told me this, I was appalled. I didn't even know that he knew such a word! But upon further reflection, I'm delighted that Ryan chose to use words to express his feelings. He didn't hurl himself against a wall. He didn't throw things. He didn't cry and scream. He used (naughty) language, addressed to the person who was making him angry.

It has taken three years of therapies to get Ryan to this day: able to express himself with words and without self-injury, on the brink of mainstreaming.

He's going to be ok.

He is ok.

He's more than ok.

Monday, October 10, 2011

How to Play: Stupid Ball™

Ryan's favorite game is an activity of his own invention that Stu and I have dubbed Stupid Ball™. Here's how you play:

1) Select a toy that has a lot of (preferably small) pieces. For this example we will use 2" long rubbery bananas.

2) Note how many items you have. In our example, there are 24 bananas.

3) Hide your bananas all over the house. You may hide them in groups of no more than 4 items in a single location. You can reuse some hiding places you have used before, but try to get creative for at least two of your groupings.

4) Search for all the bananas.

5) Forget where you hid half of them.

6) Get frustrated. Cry. Have a tantrum. This is the most important step. Do not skimp here - be dramatic about it.

7) Get your parents to help you find the remaining bananas. "Helping" means finding all the bananas while you have a fit. Do not accept any results shy of perfection: finding only some (or even all but one) of the bananas is unacceptable.

8) When all items have been gathered, repeat step 3. Game can be played as many times as you wish.

Monday, October 3, 2011

Review and Give-Away: Seeing Ezra

I recently had the pleasure of reading Seeing Ezra: A Mother's Story of Autism, Unconditional Love, and the Meaning of Normal by Kerry Cohen. Through Cohen's parenting memoir, we meet Ezra, a little boy on the spectrum who will remind you quite a bit of Ryan - cute, charming, armed with a bucket of animals and letters. Like this blog, Cohen's story is less about her son and his challenges than it is about her - as a mother, as a wife, as a woman - learning to understand and accept her sudden recruitment into the autism army. It's a quick and pleasant read.

I found myself making little check marks in the margins as I found Cohen putting words to feelings I had experienced over the last couple of years. Frustration at sitting outside a party: check. Anger at strangers giving unsolicited advice and unnecessary pity: check. Seeking an escape route from this strange new life? Father with Aspie tendencies? Husband depressed because he wants to move? Check check check.

Cohen has few kind words for the parade of professionals responsible for conducting diagnostic testing; how can someone who has never met her son pretend to know anything about him without treating him like a data point, she argues. Seeing Ezra chronicles her internal journey to a place where she feels comfortable enough with herself to stand up to all the therapists who want to make her son "normal." She bristles at the idea that something must be done to fix her son, because she has never seen him as broken. He is perfectly Ezra.

I recommend Seeing Ezra, especially to ASD parents and to therapists who may need to be reminded that the kids they are working with are, first and foremost, kids - kids who like to play and laugh and who need nothing more than love.

Thanks to the generous folks at Seal Press, The Ryan Files will be giving away a copy of Seeing Ezra to one lucky reader. To enter, go to my Facebook page and write "Love is normal" on the wall. I will select a winner at random on October 18th. Good luck!