Wednesday, November 28, 2012

I Caught Him!

I caught him!

In another for the "Atypical Kid Does Typical Naughty Thing And Mom Kvells" file, I caught Ryan looking around to see if I was nearby before doing something he knew he wasn't supposed to do.

Ryan loves playing with my garden shears. "Clippers!" he demands. He finds it soothing to clip tiny bits off branches, and since it's a good hand exercise for him, I allow him - but my rule is he can only cut brown stuff, not green stuff. For whatever reason, he prefers clipping green stuff; he knows this annoys me.

So this afternoon, I was watching from the kitchen window as he was clipping away at a dead branch. Then he started looking around. He took a few steps sideways, looked around some more, moved closer to a very-much-alive little tree, looked around some more. Then he started clipping green stuff.

Of course, I had to come out right at that moment and call him on it, but I'm thrilled about his perfectly-typical deception. It demonstrates an understanding of rules and expectations, and that a person can't see something if she's not there. This is the sort of thing that would have made his preschool teacher cheer.

Monday, November 19, 2012

And he's watching us all with the eyeeeeee....

Ryan tends to be something of a quitter. He gets easily frustrated when he can't make a toy stand up the way he wants to and cries, "YOU can do it." If he doesn't instantly see the item he wants, he has a meltdown, crying that the thing in question is "lost," but he won't participate in the act of looking for the missing object, even when reminded that looking for the missing thing might actually help him find it.

That said, he has moments of tremendous drive and ambition.

We went to our local Bounce U. It's an amazing indoor play place that has rooms and rooms of bouncy castles. Any inflatable plaything you can think of, it's there. After a two-hour open session there, Ryan actually put himself down for a three-hour nap.

Ryan had been there once before with a school trip, but it was my first visit. Man, I wish there had been something like that when I was a kid (and that I had been the kind of kid who would have enjoyed it the way I would now. Scratch that, I wish they had adult sessions.) They divide the open-bounce session in halves - the kids spend the first half in one room, and the second half in another room full of completely different bouncy stuff. During the first half, Ryan kept asking if it was time to go into the second room - over and over and over again. When the second room opened, he ran straight for this thing:

The bottom level is a trampoline, and the four layers above it are nylon webs. The kids have to climb straight up through all the webs to get to the top of a huge inflated slide. It was challenging for all of the kids - the nylon straps sag when you step on them, so it's hard to push off with your feet - but it was really challenging for Ryan. Really. Challenging. Kids were passing him left and right. Boys stepped on him on their way up. Kids on line were getting impatient because only four people were allowed in the tube at a time.

But Ryan kept trying.

I swear I'm not making this up: several minutes into his attempt to reach the second web level, this music came on the stereo:
Eye of the Tiger played all the way through and he still hadn't reached the second level. But he kept trying.

And after Lord-knows how long, he reached the second web.

And the third.

And the fourth.

And he went down the slide.

And after he had bounced on everything else in the room, he went back to the web thingy and did it again.

Thursday, November 15, 2012

The Nutcracker

One thing I really appreciate about our recent move is that there are far more opportunities for Ryan. Our town has an Adaptive Recreation program. For a small fee you can enroll your kids with special needs in adaptive ballet/musical theater, adaptive tennis, a social skills group, or a hang-out-with-other-kids-like-you session.

I signed Ryan up for Musical Theater, partly because I thought he would like it, and partly because being in musicals was the focus of my entire childhood. I was in or behind at least 2 shows a year from ages 5-21, and then I continued my behind-the-scenes theater career until Ryan was born. Everything I've ever needed to know I learned in theater: discipline; structure; the importance of practice; history; body awareness; public speaking; empathy; spacial awareness; storytelling; cooperation; tolerance; professionalism; responsibility; community; a sense of purpose.

So I signed Ryan up for Adaptive Musical Theater, which merged with Adaptive Ballet. The group will be performing its third annual Adaptive Nutcracker. I'm not a big fan of The Nutcracker, or of ballet in general, but I'm a big fan of this production. The steps are simple and poorly executed, and Clara has never been less graceful, but I'm thrilled that Ryan is involved.

Ryan is the youngest of the kids, by a lot - he's a full head shorter than anyone else involved. The rest of the kids are 12-18, and have all been involved with The Nutcracker for years. I don't know what their specific diagnoses are - some seem autistic, one shows signs of hyperactivity, there's a boy in a wheelchair, another who maybe has some sort of chromosomal thing going on (along with hyper flexibility), and some just seem Not Quite Right.

The group is lead by a retired ballerina and a gaggle of perky neurotypical high school-age girls from the New England Ballet. These girls act as mentors for the special needs kids, gently reminding them of the choreography and keeping them on task.

And if one of the dancers suddenly freaks out, everyone understands.

And if someone on the sidelines is giggling uncontrollably, that's ok.

And if the Mouse King needs a para on stage with him in the battle scene, the para gets his own sword and no one bats an eye.

Ryan seems to be having a wonderful time being a soldier. He may not do all the steps properly or at the right time, but his joy is contagious. And he's the baby of the group, so he gets extra attention from everyone.

I sit with the other moms and marvel that their kids, who have been dancing in this group together for a few years, are truly friends. They cheer for each other, treat each other respectfully regardless of ability, and hug each other goodbye.

It's an environment where everyone truly Understands.

I have a feeling we'll be sticking around.

Friday, November 9, 2012

He's lucky he's cute

In a sample of 1,200 children with autism, 49% had wandered, bolted or "eloped" at least once after age 4; 26% went missing long enough to cause their family concern. By comparison, only 13% of 1,076 siblings without autism had ever wandered off at or after age 4, developmentally the age when such behavior becomes less common, finds the study published today in Pediatrics. Among children with autism who went missing, 65% had close calls with traffic; 24% were in danger of drowning.

"Elopement is one of the very few problems in autism that is life-threatening," says pediatrician Paul Law.... "It is probably one of the leading, if not the leading, causes of death in children with autism," he says.

- USA Today 10/8/12
Thursday was a snow day. You know, because school being closed for a week for Frankenstorm and then again Tuesday for Election Day wasn't enough of a disruption to our routine. So Ryan was playing in the snow in our yard, and I was wandering in and out of the house, sometimes playing with him, sometimes enjoying being warm with a cup of tea like a civilized grown-up. I marveled at the fact that I could leave him in the yard to play on his own - a huge change from last winter, when we lived in a 9th floor apartment and I had to watch him constantly to make sure he wasn't running off somewhere.

So he's playing outside, and I suggested, "Would you like to go sledding? I'll go inside and look up where we can go, and then we can get your snow pants and go sledding later." I went to the computer, looked at maps, figured out a likely place to sled. I did a few of minutes of work, as long as Ryan was content playing outside. Then I went to check on him.

And he was gone.

I searched the back yard, the front yard, inside the house. I looked for footprints in the snow that would indicate where he had gone. No clues.

Then I noticed the sled was missing from the porch. And I realized that all Ryan had heard me say before was "Would you like to go sledding." So he had taken the sled in search of a hill.

I suppressed a heart attack and thought like Ryan. Wednesday afternoon, he and I had taken a walk around the neighborhood looking for someplace to go sledding; we found nothing, and we got pelted with icy wind the whole mile we ended up walking. So using Ryan logic, I figured he had probably taken off on the same route we had walked the previous day. I got in my car and drove slowly through the neighborhood, retracing our Wednesday steps.

And there he was, at the halfway point of the route, just hanging out on the side of the road with a sled.

I got out of the car and started shouting, "What the hell were you thinking?" while pulling him into a hug. He clearly had no idea he had done anything wrong.

"Sledding," he explained.

I threw his sled into the car and told him to get in.

"Where are my snow pants?" he asked.

"They're at home. Where you're supposed to be."

I made a speech about how he can't leave our yard without telling me where he's going; he ignored me and requested hot chocolate.

An hour later, I tried explaining the problem again.

"When you left home before, I didn't know where you were, and I was very worried."

Something about this registered with him. His face looked concerned and surprised, and he gave me the most sincere "I'm sorry, Mommy" he could muster.

But I know this won't stop him from going off on his own in the future. The police have brought him back to me before, and I won't be surprised if something similar happens again.

My mother suggested I have a RFID chip implanted in Ryan's ear. I'm investigating more realistic solutions first.

Wednesday, November 7, 2012

Why this election was important to me

[Note: I'm about to get really personal. There's stuff in this post I've only told to maybe half a dozen people. Ever. I'll probably alienate a bunch of readers and make family dinners even more akwkard, but I was raised to say what I think, and this post has been a long time coming. It has everything to do with me, and nothing to do with autism.]

My first two years of college, I was in an emotionally-abusive relationship. I was young and troubled and didn't think I deserved any better. He slept with my best friend for months, then convinced me to stay with him because really, they had just been trying to take the pressure off me because I hadn't felt ready to sleep with him myself. I thought I loved him. We talked about getting married someday. My former best friend accused him of having raped her. I stayed with him. He tried to convince me to move away with him and not tell my parents where I had gone.

Then, the second summer of our relationship, a condom broke.

And I had a choice to make.

I could choose to entwine my life with this jerk forever, or I could choose to stand up for myself and become stronger.

It was the best choice I've ever made.

If the government had reached into my home and forced me to carry that baby to term, I wouldn't have finished college.

Which means I wouldn't have had that internship where I met Stu's college roommate.

And I wouldn't have met Stu.

I wouldn't have gone to grad school.

I wouldn't have fulfilled my dream of starting a (short-lived) theater company.

And I wouldn't have had Ryan.

My life so far has been a fantastic journey toward self-acceptance and self-love, toward trust and empathy, toward walking the talk. And for me, the ability to make my own choices has been the whole game. Choosing is power, no matter what decision you make. Letting someone else decide your fate leaves you as an observer, not a participant in your own life.

For the past 18 years I have chosen to keep my most profound, life-changing experience largely to myself - I have dear friends I'm not sure if I've ever told about this. But I'm choosing to share this essential part of myself now because I'm finally at a place where I feel strong enough that I do not fear judgment from other people.

I don't want to start a debate about when life begins; I don't think any human is capable of answering that question with any authority. I feel as confident in my own belief on the subject as any mortal can, and I respect the various beliefs of other people. But I don't want our government to impose one man's belief on the subject on all 300,000,000 of us.

So I chose to vote to protect my right, and the right of all American women, to choose whether or not to bring an unwanted child into the world.

And I'm relieved millions of others chose to vote for Democratic Senators, Congressmen, and the President as well.

Saturday, November 3, 2012

Sandy: scenes from an autistic household

Tuesday evening, La Casa de Awesome.
Ryan:     Can I watch tv before the lights come on?

Mom:     No, baby, there's no electricity. The tv needs electricity.

Ryan:     I can not turn on the lights!

Mom:    No, baby, the storm blew down the power lines. When the wind stops, the workers will start fixing the lines and they'll make the electricity work again.

Ryan stares out the window at the eerie sky and the shadowy trees bending at unnatural angles. 

Ryan:    Go away, Wind! Go away! (pause) I can not make the wind stop!

Mom:   No, you can't. Wouldn't that be cool if you could?

Ryan:   Can I watch tv before the lights come on?

Wednesday night, Grandma Laurie's house. Ryan and Daddy have just returned from 15 minutes of trick-or-treating and half an hour of freaking out looking for a lost glove.

Ryan:    Can I have candy with no wheat in it? Does this candy has no wheat in it?

Friday evening, Grandma Alice's house.

Mom:   Hey, Ryan, I just got a call from Daddy: the power is back on at our house! We have heat and lights again!

Ryan:   The power is back on at our house?

Mom:   Yes, we have electricity again!

Ryan:   We have 'lectricity again? Can we go to the new house? Can we go there, can we go?

Mom:   Yes, but I want to wait until after rush hour. We'll go after dinner.

Ryan:   Can we go to the new house? Can we go and have e-lec-tic-tristity?

The Frankenstorm lived up to the hype. I hope all of you on the east coast are safe and that your families are well. Big thanks to the utility workers who got our power back up last night. These folks have been working hard and putting in long hours, and I'm mortified that some Connecticut residents have been less than patient.