Sunday, September 29, 2013

How to Host a Birthday Party for an Autistic 8-Year-Old

Saturday was Ryan's 8th birthday, and his party could not have gone better. If autism parenting has taught me nothing else, it has taught be to head off problems before they happen: I think through how a potential situation will play out, then make adjustments in advance. I believe our utter success was due mostly to good planning, as well as to good luck that Ryan was having a focused day.

Here's how we prepared:

1) Know your customer. We know what elements Ryan values in a party: there must be extensive decorations, including balloons; there must be a significant number of bodies for him to count; there must be a pinata; and it should go without saying that it's not a party without cake. I let Ryan direct the decorating; he had pretty exacting specifications for how to hang streamers on the swing set.

2) Avoid surprises. As you know, Ryan is a stickler for completion, so I foresaw it would be a problem that my mother was going to be arriving without my father (my dad is a Red Cross volunteer, so he's off being helpful in Colorado). I made a point of telling Ryan a couple of days in advance (and repeatedly thereafter) that Grandma Alice would be at the party but that Grandpa Lee would not. Since it was not a surprise, he took it well.

3) Don't make promises you can't keep. I told Ryan "all his friends" would be at the party, but made sure not to name names, just in case someone didn't show up. I'm glad I did this, because three of his good friends never showed, but since I never specified that they would be there, he was not disappointed.

4) Stay flexible. We told our guests to expect a very casual backyard party. In addition to the swing set and sandbox that came with the house, we set out a few fun things for the kids to play with, and we let them go free-range. There were no organized games, aside from the requisite pinata. Our guest list included three non-verbal autistics, two boys with ADHD, and half a dozen neurotypical kids, with ages ranging from 3 to 11, and everyone had fun in their own way, and with minimal parental involvement.
 5) Don't make unreasonable demands. While I prompted Ryan to greet his guests politely and thank them for coming, I did not insist he spend every second playing with his friends. A few times he ducked into the house to play by himself, and I praised his growing self-regulation skills. Far better to take a break than to get overstimulated and have a meltdown.

6) Remember who the party is for. Going to other kids' birthday parties is always kind of a pain for us because we have to pack gluten free food and cake for Ryan. For Ryan's party, I made sure all the snacks were wheat-free. We ordered regular pizza for everyone, but we ordered from a place that could also deliver a GF pie. Instead of subjecting everyone to some crappy rice flour-based cake, we ordered an ice cream cake custom made without the crunchies in the middle. This is another thing I prepped Ryan for: Ryan had never had ice cream cake before (because they always have the aforementioned crunchies), and I didn't want him to reject a not-baked cake because it was surprising. We had several conversations about how special it was that his cake would be made of chocolate and vanilla ice cream.

7) Take your time. We saved the opening of the presents for after most of the guests had left, mostly because Ryan can't fake liking something he doesn't actually like, but also because he tends to be a leisurely unwrapper. Many people open a pile of presents like they have a train to catch, but Ryan likes to linger over some presents, playing with them as soon as the wrapping paper is off, then eventually getting around to opening another box. There's no reason to discourage his enjoyment of each of his birthday presents, so we let him stretch the process out as long as he wants.
This was by far his favorite gift. They're letters that transform into robots.
8) Welcome a puppy. The next door neighbors brought their itty-bitty puppy over. Every party is better with a tiny puppy.

Wednesday, September 25, 2013

Quacks of the Month: Mark and David Geier

This one's kind of old news, but it's new to me.

Father and son team Mark and David Geier are in the vaccines-cause-autism camp. Their based-on-falsehoods hypothesis is that thimerosal (which is no longer in vaccines) causes mercury poisoning; mercury binds with testosterone; kids with autism have too much testosterone; therefore removing testosterone from the brain frees up the mercury so it can be removed by chelation, thus curing autism.

The Geiers, through their practice, ASD Centers LLC, prescribed autistic children daily injections of Lupron, which reduces the production of sex hormones in the body. This is a way-off-label use of a drug used for chemical castration, the treatment of cancer, and sex reassignment.

Last year, Dr. Mark Geier lost his medical license in several states because of his unorthodox autism treatment. His son, David Geier, was charged by the Maryland State Board of Physicians with practicing medicine without a license; he has a BA in biology and a couple of graduate courses under his belt.

Do I have to explain why it's a bad idea to castrate your child? Apparently I do, because there are lots of desperate families who signed their kids up for this "treatment." I understand why a parent would buy in to this: testimonials on the ASD Centers LLC website extol the Lupron Protocol, saying it transformed their aggressive children into more passive and cooperative little people. Yes, removing testosterone tends to reduce aggression. This doesn't mean your child isn't still autistic, and it doesn't mean these injections are the best way to calm the volatile situation going on in your home.

Our primary job as parents is to help our children grow up to be the best adults they can be. When you reduce their bodies' production of sex hormones, you halt their development, infantilizing them and limiting their future options, both reproductive and otherwise. Please tread carefully.

Friday, September 13, 2013

Stage 5

Wednesday was open school night. All the parents and some kids crowded into the sweltering all-purpose room, where the principal gave a long-winded Power Point presentation on learning standards and metrics and assessments and standardized whatnots that do not apply to Ryan's education.

We walked out mid-presentation and wandered the halls.

First we wound up in the library - sorry, Media Center. Only a couple of weeks into the school year, the librarian already knew Ryan's name and when his class comes to check out books (or perhaps media.)

Then we asked Ryan to show us to his classroom; he only got us lost once. On the way, a classmate of his waved and said, "Hi, Ryan!" And Ryan addressed her by name. The right name. Blink blink blink.

Ryan's classroom was even hotter than the MP room. While Mrs. M talked to the parents and other assorted relatives in the room, a couple of boys played a loud computer game, while another boy dug his hands into a bucket of little plastic toys. Between the heat and the noises, I had a very hard time following the conversation. I imagine this is what school is like for Ryan under the best of circumstances, but he was happily playing with an alphabet puzzle, so I guess only I was in sensory overload
I was surprised to learn that Ryan's class isn't called Special Ed: now it's Adapted Curriculum. I don't know when this happened. I put my kid on the short bus and it took him to Adapted Curriculum without my having to do anything different.

The Adapted Curriculum classroom consists of six children - three third graders, a fourth grader, and two fifth graders - each of whom has an individual educational program (IEP). Ryan joins an inclusion class for specials (music, art, gym) and works on his reading and math and science in Mrs. M's room.

Open school night is one of those occasions that highlights how different Ryan's school experience is from the average kid's; how different Ryan is from the average kid. I used to leave events like this in tears, stewing in What Ifs and Whys and Why The Hell Nots. Just walking out of the principal's talk would have upset me - the realization that the wizard had nothing in his bag for me - but on this night, it never occurred to me to cry. (Of course, writing about this has resulted in over-thinking, which always ends in tears.)

In that moment, I suppose I had finally reached the Acceptance stage of my grief. In that moment, I truly accepted Ryan for who he is, without my usual internal fantasy of a day when he can mainstream. In that moment, it was obvious that my baby is perfect just the way he is. There's no reason for him to chip away at himself to fit in when the world can bend and stretch to accommodate him. I could see that Ryan is in the right school setting for him.
Intellectually, I've spent years articulating the importance of Acceptance, but the tears always betray me. On open school night, I was walking the talk.

I love Captain Awesome just the way he is.

Tuesday, September 3, 2013

I know my ABCs. Can we stop singing now?

One of Ryan's favorite "screen time" activities involves trolling for alphabet song videos on YouTube. He types "alphabet" into the search bar and follows an endless trail of related videos from around the world - India seems to generate a ton of content, and Ryan delights in the exotic Ex Why Zed endings.
Alphabet Rap. So offensively bad.
His preference seems to be for animations in which the letters have eyes and legs. He's not picky about animation style - the crappier, the better. The songs are usually as obnoxious as the graphics. There's often a train that transports apples and cats and xylophones along with their corresponding starting letters.
Shaun the Train, with TWO objects per letter!
Russian alphabet train.

The related videos also link to numbers songs, nursery rhymes, and other preschool fare. 
Their noses disturb me.
Think Whack-a-Mole.
I've become schooled in the subtle differences between renditions of the Five Little Monkeys Jumping On The Bed song - sometimes there are girl monkeys! Sometimes they sing a whole "No little monkeys" verse! The more versions of the song I hear, the more pissed off I get with the Mama - why the hell does she keep calling the doctor? He's going to give her the same advice every time, and she clearly lacks the parenting skills to stop her uncoordinated little monkeys from jumping on the bed.
The one video series Ryan has found that I actually like is a BBC show called The Alphablocks. It's a phonics show - when the letters hold hands they make sounds. Each letter has a distinct personality - M is always hungry, L is an opera singer, X is a superhero, N is Scottish and gloriously negative.

I had hoped that by age almost-8 we'd be done with alphabet songs, but this is Ryan's comfort zone.

Monday, September 2, 2013

The Beads

When Ryan was maybe 4, we got a big tub of assorted plastic beads. He could spend an hour at a time stringing beads, making patterns, sorting out the colors and shapes.

Well, most of the beads were for stringing.

He would string the barrel beads, the "dog bone" beads (those sort of triangular ones with bulbous ends), the flower shapes, the bumpy ball-shaped ones, the butterflies.

But he carefully gathered the donut-shaped beads and stashed them on the corner of his bed.

At first, I would encourage him to put ALL the beads back in the tub when he was finished, but soon it became clear that the donut beads needed to live in the corner of Ryan's bed. Eventually, they moved from the corner to directly under the mattress, like so many peas for a princess.

Over the years, I have occasionally asked him why, and the best answer I've gotten is "Because I like them there."

When we moved to the new house, the donut beads moved in the box with his sheets - they had become a necessary part of the bed. Ryan carefully spread them out on the bed platform and covered them with his mattress. Two days ago I found a random donut bead around the house (you know, as you do), and he grabbed it from me to add to his "cowwection."

Then yesterday, Ryan asked me to pick up the mattress for him so he could gather up all the donut beads. He played with them for a while, arranged them into a rainbow, used them to decorate his block tower. When we were picking up toys at bedtime, I asked him where we should put away the donut beads.

He put them in the bead container, with all the other beads. Like this was a perfectly normal thing.

He closed the lid and got into bed.

I felt a little uncomfortable. Like, how can I put him to bed without a dozen beads under the mattress?

But he was fine with it.

I guess he doesn't like them there anymore.

Addendum: two days after I published this post, the beads took up residence in Mr. Potato Head's butt, and have stayed there ever since.