Wednesday, September 21, 2016

Middle School Drama Club, BYO Drama

I always have a hard time taking Ryan to the playground, watching how preschoolers socialize so naturally, and then watching how much effort comparable interactions are for my almost-11-year-old.

Attending the mandatory parent meeting for the middle school drama club was ten times harder.

Ryan wants to be in the middle school production of Shrek The Musical. The drama teacher says the school can hire a para to help Ryan at rehearsals. In theory, then, Ryan is cleared to try out next week.

But holy cow, it's going to be challenging for him.

For one thing, rehearsals are after school. Most days when Ryan comes home from school he needs an hour of time alone just to recover from the demands of the day. But if he is cast in the school play, two days a week for the rest of the year (plus tech week) he will have to hold it together for an extra couple of hours. These couple of hours will coincide with his ADHD meds wearing off for the day.

Also, rehearsing a play requires skills that are either non-issues or manageable for the majority of middle school students but are difficult at best for Ryan. Reading along with the script. Writing blocking notes in the margins. Following those directions.

Looking around the packed school gym at the scores of typical middle school kids who attended the parent meeting, I felt like I was being assaulted by normalness, taunted by an alternate reality in which my child doesn't have to struggle to get other kids to understand him and gets to ride the long bus to school and can engage in conversations comprised of original material. An alternate universe in which I have no doubt that someday my child will be able to live independently. A world in which my biggest worry for him regarding drama club would be how he might handle the rejection of not getting the part he wanted.

I gained so much from the experience of performing in plays throughout my childhood, and I want Ryan to reap the same benefits. Actually, he has far more to gain from this experience than I ever did. Maybe he will learn to be quiet while other kids are talking. Maybe his reading skills will improve. Maybe he will finally find a good use for that fantastic visual memory of his.

Or maybe he'll just annoy the rest of the cast and start on that sad path to isolation that so often begins in middle school.

Tuesday, August 30, 2016

The Best Show You'll Never Get to See

Me calmly pinning my child to the
playground floor to try to end
a meltdown. As you do.
Lately, my favorite people to spend time with are parents of kids with special needs. They're empathetic, they're patient but have no time for BS, they tell you what they think, they have their priorities sorted out.

And they're freaking hilarious.

Nobody tells better stories than the mother of an atypical child. And nobody is better at finding humor in seriously dark material.

For example, my friend Missy* tells the tale of a time her then-seven-year-old her daughter, Little Miss, had to be hooked up to an IV. Little Miss has huge sensory integration problems and a hair-trigger startle reflex when confronted by sounds she can't handle. All of this is written up in her medical paperwork.

So, one day she had to have an IV. Like any child would be, she was anxious, so the medical professionals in the room were trying to be gentle and encouraging as they stabbed her in the arm. When the needle had been inserted, one of them cheered "Woo-hoo!," whereupon Little Miss immediately punched the nearest nurse.

"What was that?!?" cried the nurse.

"You woo-hooed." stated Missy calmly. "You can't woo-hoo."

A bunch of us agreed we would love to watch a sit-com based on our lives, but nobody would ever allow such a show to be made. I can only imagine the uproar: You're making fun of handicapped children! You're terrible people! Where are some pearls I can clutch?!

Obviously disabled people should be treated with the same dignity as "typical" people. But the caregivers' lived experiences matter, too. So often we are kept segregated from the general population - if our children can not participate in the activities enjoyed by typical families, we're off on our own. Even if our children spend part of the school day in an integrated setting, their names often won't be printed on the class list, so they're unlikely to ever be invited to typical kids' birthday parties or play dates. Children with disabilities tend to be relegated to society's shadows, and we, their parents, are largely hidden from the public view, unless we're fighting for something for our kids.

Caregiving is important. Our lives are real, our experiences matter, and our stories can be dramatic, touching, funny, even scandalous. But at this point we're just swapping these stories amongst ourselves, because we doubt anyone else could handle them.

* no real names from here on down

Friday, June 3, 2016

World's Saddest Tiger

When Ryan came home from his school's Field Day wearing full face paint, it was a Big Deal. I think about a year ago he let someone paint a ladybug on the back of his hand and resisted washing it off for several minutes, but that might have been his only previous experience willingly wearing the sort of makeup children tend to clamor for at birthday parties and carnivals.

When Ryan stepped off the school bus with his tiger makeup, he was crying. He was crying because he doesn't understand how raffles work, and he thought the teachers running Field Day had skipped his ticket number on purpose and that this was a terrible personal slight. I tried to comfort him, praising him for telling me "I am feeling sad." 

But mostly, I was dying to ask him about the face paint. Because it was a Big Deal. 

I oohed and aahed enthusiastically about how great he looked as a tiger, and how proud I was that he had stepped so far out of his comfort zone. He indicated it was time to wash his face. It was hard at that moment to tell if his crying was in any way related to the face paint.

"Should we take a picture before we wash it off?" I asked.

Through his tears, he agreed.

Thus, I present to you, the world's saddest tiger:
sad boy in tiger face paint
The plastic party fedora on top of the baseball cap is just standard tiger apparel.
As soon as his face was clean, he stopped crying and went out to play.

Tuesday, May 24, 2016

Quack of the Month: Sweat Therapy

There's a story going around about a preschooler in Guangzhou, China who died after experiencing Xia Dejun's unique treatment for autism: sweating it out.

I asked some friends who are fluent in Chinese to help me interpret the treatment center's website because Google Translate just left me with more questions than answers (like, what is the "cerebral palsy buffet network" and what does it have to do with treating autistic behaviors?). 

Xia Dejun says autism is a disease for the rich and lazy, so the cure is to un-spoil the children and take a significant payment from the parents. His treatment requires parents to leave their child at his facility 24/7 for two years and cut off all contact. The child is put into a "right living environment," undergoing "militarization management" to "strengthen the constitution." The child is put through a vigorous regimen of exercises, including weightlifting and walking 10-20 km per day while wearing heavy clothes to promote sweating "to increase the body's energy, eliminating toxins." They also spend time lying in incubators, to further promote sweating.

Mr. Xia has no medical training, and there is no scientific evidence backing up this sweat-out-the-autism treatment. The center is currently under investigation.

Exercise is a terrific treatment for just about everything; dehydration and heat stroke are not.

Monday, May 23, 2016

Sand Art is Back

Ryan's fifth grade dance had a carnival theme. Face painting, ring toss, stick your face in a hole and take a picture of yourself as a clown, sand art, snow cones. The kids jumped around the school's all-purpose room to pop songs played by the world's loudest DJ while Ryan and his bestie clapped their hands over their ears.

For most of the kids this was a drop-off affair - ten of the girls actually got picked up at the end in a white stretch freaking limo. Stu and I provided a bare minimum of support for Ryan. At first this meant walking into the school with him, pointing him in the direction of games, letting him cover his ears with our hands (sometimes one's own hands just don't cut it, I guess). A group of girls approached Ryan and said hi; we alerted Ryan to their presence and encouraged him to say hello.

We watched from afar as Ryan stood awkwardly near some boys who were playing some sort of ball game - positioning himself between children who were throwing and catching but not in a way set him up to participate. Then, we witnessed the magic of Inclusion as the boys took him by the arm and patiently showed him where to stand and how to play, going so far as to put the ball in his hands and encourage him to throw it to a particular kid.

I had to excuse myself for a moment.

By the second half of the evening he was navigating the party mostly on his own. Eventually Stu and I positioned ourselves outside the main entrance, watching kids put their empty cotton candy cones on their heads and declaring themselves to be narwhals, and scolding the occasional child to get out of the parking lot. A PTA mom manned a hairspray station, coloring kids hair in various unnatural and glittering colors on demand.

Ryan had a glorious time in his own way. He played carnival games and won tons of prizes (pencil sharpeners! fancy straws! scented bookmarks!). He drank lemonade - something he has never previously enjoyed. He tasted cotton candy, scrunched up his face in confusion and asked, "Is this food?"

Then, in a move that truly stunned both of us, Ryan asked the PTA mom to spray his hair blue. This is a child who has zero tolerance for marker on his fingers or any sort of makeup on my face, a child who will freak out if someone has a zit and will not cover it with a bandaid. But there he was, delighting in having sparkly blue hair. Later he returned and insisted on having red sprayed on top of the blue "to make purple."

Things were exceeding our expectations until the final moment of the party, when the DJ called off the winning raffle number (I have no idea what was being raffled). It seems that Ryan does not understand how raffles work, and was devastated that "they did not remember my number!" Averting a meltdown, the PTA mom exchanged Ryan's raffle ticket for most of a can of green hairspray.

I'm proud of how much Ryan has grown in the last three years, and tremendously proud of his neurotypical classmates, who go out of their way to be kind to him and include him even when no teachers are watching them.

Wednesday, May 18, 2016

Challenger League

Ryan just started playing Challenger League baseball.

And it's hilarious.
Ryan playing shortstop? Maybe second base? It's all very fluid.
The league is for kids of all ages with any special needs, so you'll have a tiny six-year-old girl playing alongside a boy in his third year of high school, or a kid inching along in a power wheelchair that wasn't designed for off-road use sharing the field with a hyperactive autistic kid who feels compelled to run back and forth between third base and home plate several times while his teammate is still at bat.

The game play itself doesn't appear to have any rules, but the cheering is hearty and pure. A kid can swing at the ball 15 times during a single at-bat and all the parents on the sidelines will clap and voice their encouragement for every one of those swings; kid makes any contact with the ball at all, the parents erupt in cheers. If the coach (who pitches from about five feet away from home plate) catches the ball, he chucks it backward through his legs so someone can field a grounder. Instead of having traditional innings, every kid on the bench gets one turn at bat.

Ryan seems very happy with the whole affair. He seems proud to put on his uniform and loves running around the bases. And I'm enjoying hanging out with the other moms and cheering on all the kids. His youngest teammates include some of the most joyous children I've ever seen - their smiles are truly infectious. And no one bats an eye when the girl on third base randomly books it for the fence instead of running toward home - the nearest parent just picks her up sideways and runs comically carrying her back toward the infield.

Friday, April 15, 2016

Transparent Dreams

I dreamed I was a vendor at a craft fair. My assigned place was a card table on a sidewalk. The other vendors were in a row of ten-foot-long folding tables on the street; we were separated by a wide grass median and a line of parked cars.

As soon as I unfolded my table, an old, toothless woman appeared and began berating me about the futility of those nylon straps that tether a baby's toy to her stroller. "I don't make those," I told her. As I laid out my first quilt - a pink and white queen-sized quilt with a hand-appliqued alphabet, priced at $99 - the toothless lady said it was nice but far too expensive. I calmly told her I thought it was reasonable for me to expect to take home $1 per hour of work. Look at all those tiny stitches!

Many people crowded around, simultaneously admiring my work and getting in my way, putting their drinks and large boxes on my table, but none of them stood up to the old lady who kept yelling at me.


I dreamed I was traveling alone in India. I picked up a package of food or something and noticed that the label listed every company who had put money into the manufacturing of that product and ever individual who had labored to create it. I thought this was a brilliant, progressive approach to packaging - one that I would like to see applied to American politics - but I had nobody to share that idea with.

At that moment I looked around for a restroom and saw a sign for one on a nearby door. That door actually led to a hotel pool deck where college students were celebrating spring break; it was 6am, so it must have been the tail end of the evening. A policeman directed me back out that first door and told me to make a sharp left to find the restroom.

Through another door, also marked Women's, was a beautiful hiking trail along a reservoir. This brought me to a small concrete plaza with two staircases: the Up staircase led to a pedestrian bridge to lower Manhattan, the Down staircase led to several lines of the NYC subway system. As I tried to plot the cheapest and most efficient route to get to East 63rd Street, a tourist appeared, desperately confused as to how she would go north. I didn't really know where I was, but I knew that the A train goes uptown, so I confidently told her to head for the train station. Then I went back to figuring out if I would have to pay for a subway ride when I eventually crossed the pedestrian bridge, and if it would therefore be pointless to walk across.

I never found the ladies' room.