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.