Wednesday, November 30, 2016

Pro: Amazing Memory. Con: Amazing Memory.

Ryan, like many on the spectrum, has a fantastic memory. To clarify: he has a fantastic memory for certain types of details, like the length of each track on a CD, or the order in which we picked up groceries, or all the words to every movie he's ever seen.  Ask him where he left his toys or to identify his own grandmother by name, though, and you're on your own.

This kind of memory is known as Declarative Memory, and a strong declarative memory can help compensate for some deficits that go hand in hand with autism, like learning a script of what one should say in a specific social situation.

I think the brain wiring behind the awesome memory has something to do with keeping the memories readily accessible for longer than usual, rather than overwriting and pruning the neural connections. Don't quote me, this is just my hypothesis: I'm not a brain scientist, and I'm totally making this up.

My anecdotal supporting evidence is rooted in my observations of how Ryan seems to experience time. For Ryan, something that happened months ago is just as current as something that happened five minutes ago.

Today for example, we were having a perfectly relaxed evening, playing checkers and looking up cookie recipes, when Ryan suddenly flew into a panic, bordering on a meltdown. His heart was racing, his face crumpled with anguish. He shrieked, "We will not see Hard Red any day this year!?!"

Several minutes of interrogation and calming strategies later, we figured out that he meant that he had lost a tiny plastic Angry Birds toy (the red bird) somewhere in the basement... at some point in 2015. This was the first Stu or I remembered hearing that it was missing.

In Ryan's head, last year might as well be yesterday. When this memory surfaced for Ryan, he experienced it with all the urgency we would expect to see if he had lost that toy today. (Side note: I found Hard Red within 5 minutes of learning that it had gone missing. I am just that good.) Today, last month, that one afternoon when he was seven, it's all the same to him, and it's all fresh.

His memory is a blessing and a curse.

Sunday, November 27, 2016

Missing

I had a close friend, and because we spent a lot of time together, our kids spent a lot of time playing together. Earlier this year the friendship ended. 

When Ryan noticed he wasn't seeing those kids anymore, he started asking for play dates with them; he was rejected. He insisted on inviting them to his birthday party; they had other plans. Stu eventually set up a play date through their dad, but then he got sick and had to postpone. 

Today, seemingly out of the blue, Ryan started sobbing. He said he was crying because he missed his friends "so much." In theory they have plans to get together in a couple of weeks, but Ryan wanted to play with his friends Right. Now. And he found it completely unacceptable that he would "see them only one time this YEAR." 

Unfortunately, the play date is just going to have to wait a few weeks. Still crying, Ryan asked if he could call them Right. Now. I suggested he make them a card. He immediately sat down and wrote them a (barely legible) note: 
Dear _____,

I miss you so much!

Love, Ryan

My heart hurts for him.

"I miss them, too," I told him.

Tuesday, November 22, 2016

The one thing that almost humanized Donald for me. Almost.

I've had so many thoughts about the results of the presidential election but neither the words nor the stomach to articulate them. Combinations of Heartbreak and Terror swirl around with good measures of Disgust and violent impulses aimed at stomping the patriarchy into the floor.

Amid news reports of how the American taxpayers are going to have to pay for double protection of the presidential family and New Yorkers are going to have to add hours to their commutes because Melania and Barron will be staying in New York through the end of the school year (New Yorkers might have to pay $1 million per day!), I started reading rumors that Barron is autistic, and that his mother is understandably wary of disrupting his routine.

As the mother of an autistic child, I thought that would help humanize the Trump family to me. But it's only made Donald seem more alien to me because of how he has chosen to handle - or not handle - the subject.

Assuming Barron actually is on the spectrum (again, I have no inside info on this), I would have expected that at some point during his presidential campaign his father would have talked about autism and the needs of autistic children and adults. Maybe he would have said something like, "Our schools are a disaster. They can't handle all the kids with autism. Can't handle them! And once they graduate, they can't afford any services at all! This is a huge problem. Huge, believe me. My son, he gets the best therapists. The best. But here in Pandersville, you can't afford an OT, you can't afford speech, because Obamacare doesn't cover that!"

Instead, Donald tweets garbage about vaccines causing autism, mocks a disabled reporter, and says nothing of his family's personal experience, as if admitting that his own son were autistic would somehow reflect poorly on him. He shows no compassion, no empathy, no policy-based solutions for the challenges the autistic community face. He promotes junk science - crap that has been debunked again and again. And he doesn't use any of his countless hours of public attention to promote an agenda that supports individuals on the spectrum.

I didn't expect any better. I had just been hoping to be surprised.


Tuesday, November 1, 2016

I feel all the emotions at the same time.

We just got some academic testing results from last March - something or other about 5th grade science and how independently Ryan can "explain how senses let you know fire is nearby" or "Describe Earth movement for night/day." I marveled that Ryan managed an overall score of "Independent" - the lowest threshold of the top category, but hey, he was able to answer enough test questions "independently and consistently."

"This makes me feel hopeful," I said to Stu. "Maybe he's going to become a fully functioning member of society."

Then I looked out the window and saw Ryan twirling maniacally in the backyard, arms out, head back, bringing himself to the brink of falling over but managing to stay on his feet.

I felt all the emotions at the same time.

Pride, fear, hopefulness, anxiety.

My baby finally has the ability to ask questions. But he asks the same nonsensical question over and over.

He can operate a web browser, but he chooses to use it to find videos of the Teletubbies.

He can remember everything that has ever happened, except where he left the toy he was just playing with.

He goes to a wonderful public school that hired a para so he could be in the school play. But he needs a para to participate in the school play.

I feel all the emotions at the same time.

I try to focus on the positives, on the progress - and there are so many positives, so much progress - but my depressive brain fixates on the negatives. I try to refocus myself, but I find it easier to try to turn off all my feelings.

Because feeling nothing is easier than feeling everything at once.

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.