Friday, July 31, 2009

Don't push me

I'm sort of regretting that vacation. It was too relaxing. Now, back to real life, my patience is nil. Crap I barely would have noticed last week is just pissing me off, just because I'm out of practice. Tonight, I wanted to beat the child during bedtime. He was lying on the couch in his room, reciting some episode of Clifford. It was time to put on his overnight diaper and jammies.

"Ryan, stand up, please."

No reaction.

"Stand up, please."


"Stand up. Stand. On your feet. That's the opposite of standing. Ryan! Stand. Up. Please."

Then Stu tried, "Goodnight, Mommy." Predictably, Ryan snapped to attention, asking me to stay. But he was still rolling around on the couch.

"Stand up or I'm going to bed now," I warned. He mostly stood up - his chest was still on the couch, but at least his feet were on the floor.

I started to put the diaper on him (ever since he figured out how to stand, all diaper changes have occurred while standing). But he's in full sensory-defensive mode, and my touching him tickles him. He dissolves in giggles, falls to the floor, jumps up and down.

"Stand still, please. Stop. Just stop. Relax. Let's count to ten. Stop. Ryan! Stand up!"

Eventually I got the diaper on him. Stu held Ryan up and grabbed his hands while I tried to close the tabs without touching Ryan's skin.

This is not an unusual situation, and normally, this episode would not be cause for undue frustration. On a more patient day, I would have manhandled him into the diaper, perhaps headed off the ticklish part altogether with either preemptive wrestling or massage or (less likely) the Wilbarger Brushing Protocol. (I think it's been months since I actually went through the effort to brush him at all, and even when I was doing it regularly, I did it only once or twice a day, and poorly.) But tonight, it was all I could do not to bark at him, "What the hell is your problem? Let's get this over with so I can eat my dinner and not deal with your crap!"

This week, I've become acutely aware that my day is filled with similar moments. Normally, I'm numb to it and don't notice how much work it can be to get Ryan from the house to the car or to get him to eat dinner. I hope I'm back into that numb rhythm by next week.

My level of patience has not been helped by my paranoia about The Caterpillars. [warning: this section is not for the faint of heart.] Yesterday I discovered that tiny moths had laid eggs in my pantry, because I saw dozens of gross white caterpillars crawling all over my ceiling. We spent several hours last night throwing away infested food, cleaning shelves, caulking holes in the wall, trying not to throw up. I am happy to report that I haven't seen a caterpillar in several hours, and most of our food is now safely hidden away in airtight containers.

And I must give the buggers credit for their intelligence: they avoided all the wheat-free crap in the closet, and helped themselves to my private stash of dark chocolate-dipped Altoids.

Wednesday, July 29, 2009

Viva Mexico!

Stu and I have returned from three childless nights in Cancun. It was blissfully relaxing. We stayed at an all-inclusive, adults-only, beachfront resort. We slept soundly, did a lot of lounging, floated about in the Caribbean Sea, drank fruity daiquiris, ate good food, snorkeled, zipped down water slides, and swam with dolphins. And we had practically zero responsibility. I didn't have to make bologna sandwiches on rice bread, clean up puddles of pee, ease tantrums, pack bags full of contingency items, or make plans based on naps and bedtime.

One of my favorite things about this trip was that it was a total vacation from autism. When making casual conversation with folks around the pool, we could just say "We're taking a break from our son" without getting into anything about his abilities and challenges. It was a break from making excuses or apologies for strange behavior at the playground, from keeping track of what tv show Ryan is referencing, from worrying. It felt great to walk around thinking nobody knows anything about me. Nobody knows my life is anything but typical.

So I wandered the touristy strip of downtown Playa del Carmen, sank my toes into powdery sand that never gets hot, and marveled at what a hearty people the Mexicans are. They shun the sorts of government regulation that have made Americans so soft. Small children ride on their parents' motor scooters or on laps in the front seats of cars, without seat belts. They swim among the boats in the marina, and in the path of moving jet skis. They populate the playgrounds at all hours of the evening with no visible supervision. They have vigorous sand-throwing fights. I saw one eating sand. And they appear healthy and happy. There's a lesson in that.

Tuesday, July 21, 2009

While we're away...

Thanks, Mom and Dad, for volunteering to take care of the boy while Stu and I escape to Cancun for 4 days. You have no idea how much we appreciate it. Here are some tips for your special time with him:

Morning: Ignore him until 6am. If he starts making noise before 5am, try to encourage him to go back to sleep; otherwise, ignore.

Naps: Rarely happen. If he does nap, don't let him sleep past 3:30, or bedtime will suck.

Bedtime: Lights out by 8pm, but if he doesn't nap, it will be closer to 7pm. Make sure he has all 4 bears and both blankets. Tuck him in with the blue fleece blanket, even if it's 80 degrees and you can't imagine sleeping under a heavy fleece blanket.

Potty training: We have most success at home when Ryan is naked. Sometimes he'll go of his own accord, but usually you have to remind him to go. When he's naked, you'll get a... er... visual cue he needs to pee; it's much harder to divine this when he's dressed. He will never tell you verbally that he needs to go. I'm leaving you with a spray bottle of pet stain remover that is safe for most carpeting and upholstery. Put a diaper on him when he's sleeping or when you're in the car, otherwise carry a few changes of underwear and pants at all times. Ha ha ha ha ha ha!!!

Food: No wheat. Surprising sources of wheat include Twizzlers, soy sauce, and any margarine container you've ever double-dipped your knife in. Ryan will live on bananas and cheese if you let him; please don't let him.

Behavior: If he throws something out of anger, IGNORE it, then when he's calm, make him clean up whatever he threw. If he tells you to "go away," ignore it, or model more appropriate language. If he requests "Milk," model a more appropriate, "I want milk" or "Can I have some milk?" The want is more important than please. When you're about to leave the house and he starts chanting "Milk! Juice! Fruit bar!," calmly reassure him that you have a supply of snacks in your bag and that he can have them when you get to the car/wherever you're going if he still wants them. Encourage him to finish one thing before he starts another (ie, if he dumps out all the pieces of a puzzle, he has to actually DO the puzzle before he runs away.)

Glossary: Following is a very partial guide to Ryanisms that are totally obvious to me, but which might be less obvious to you:
- "Rectangle cheese" is an individually-wrapped cheddar snack.
- "Dissent! Dissent!" means "Please skip this part of the tv show, I want to see something different."
- "Milk" - when said in the evening, means "I'm ready to start the bedtime routine."
- "Watch George" means "I want to watch tv" - it does not necessarily mean he wants to watch Curious George.
- "Play a game" means "I want to play a computer game."
- "Wunch" literally means "Lunch," actually means "I'm hungry, I want whatever meal is appropriate at this time."

Scripting: Pretty much any time he's talking to himself in something that sounds like real sentences, he's just quoting a tv show or a book. Try to get involved and riff on what he's saying, encouraging language use beyond the script. You won't get the references; do not be discouraged, and resist the urge to ask him "What the hell are you talking about?"

Thanks! We'll come scrape you off the floor on Tuesday!

Shorties: The Naked Circus

Ryan recently taught himself to do somersaults and headstands. Mostly he does these on the sofa. Yesterday, when I asked him if he had to use the potty, he sat on the potty briefly, then somersaulted off it. Naked. It was awesome. I said "Do another somersault!" So he sat on the potty and tumbled off it again.

Saturday, July 11, 2009

A Day at the Beach

What a difference two weeks can make.

Yesterday I brought Ryan back to Harbor Island. "Sprinkler!" he demanded. I grabbed the towel I happened to have stashed in the car and we headed for the sprinkler park on the beach. I hadn't brought swimsuits, but I figured Hey, how wet do we ever get at the sprinklers?

First, we found some rocks and threw them into the ocean. I asked Ryan if he wanted to take off his sneakers and socks. "Take off your shoes," he agreed. Shock #1.

He asked me to carry him so his feet wouldn't have to touch the sand. I picked him up and waded out into the water. I made a game of dipping his feet in the water; he enjoyed it. Shock #2.

Through a series of baby steps, Ryan wound up playing independently in the ocean. Barefoot. Naked, except for a pull-up (and later underwear when I thought better of it). Collecting slimy sheets of seaweed and piling them on a buoy. Pushing me out of the water, then grabbing handfuls of wet sand and burying my feet with them. Running up and down the beach barefoot. Having a fantastic time, like a regular kid. Shocks #3 - 50.

A bratty 4-year-old girl tried to burst my bubble. She saw me holding a pull-up-clad Ryan out of the water, and she asked me, "Is he a baby?" No, he's not. "Then why is he wearing a diaper?" I never know how much I should bother engaging the brat in these encounters; I opted for minimally.

When Ryan ran barefoot all the way back to our towel, and then wandered over to the sprinkler park, I couldn't contain my pride. And I was alone - no camera, no phone, no one to brag to. So I babbled for a moment at the nearest grandmother; she graciously made like she understood why I was so excited.

Today, to reinforce the "yay, this is fun" thing, Stu and I brought Ryan to Harbor Island again, this time slightly better prepared. Again, he truly enjoyed splashing in the water, walking on the sand, picking up seaweed. He even walked barefoot on some very rough concrete that I found uncomfortable to stand on. We watched a kite flying. He chased seagulls. I showed him dead crabs, which he grabbed from me and threw into the sea. I wrote his name in the sand and he "erased" the letters with his hand.

It was a perfect beach day, one that I didn't think we would ever be lucky enough to enjoy.

Monday, July 6, 2009

The God Connection, Chapter 3

I put down Autism and the God Connection for a few days and came back to it last night. Chapter 3 details various paranormal experiences that autistic kids have had: a boy to whom cows are inexplicably drawn; a girl who predicted the Concorde would explode over Paris two days before it did; a horse whisperer; nonverbal children who communicate with telepathy. The author's implication is that these are special spiritual gifts bestowed upon some people on the spectrum.

Maybe they are. I've noticed that Ryan is drawn to other atypical kids, and they are often drawn to him. Ryan feels the need to follow a severely-retarded teenager around our local playground, and an obviously-autistic boy is constantly pursuing Ryan at a park near my parents' house. Is this due to paranormal activity? Is it like gaydar? I don't know.

I'm not a traditionally religious person. I was raised in an atheistic Jewish home, celebrating commercial Christmas in addition to secularized versions of the various Jewish holidays. In college, I wound up majoring in Religious Studies, because I found the subject academically fascinating, even if not personally meaningful to me.

That said, I believe that I have personally experienced God three times. And I'm still not sure what I believe.

The first time, while rushing through Grand Central Station, I looked up and saw God on one of the high arched windows. It looked like a bright, misty light, and felt like utter stillness.

Another time, I was sort of praying, which is strange because I don't think I believe in prayer, because I don't think there's a Conscious Force to be persuaded by human wishes. It was a clear evening, and I was sitting on a bench outside my apartment, trying to come to terms with The Diagnosis. I wished for a sign that everything would turn out alright. At that moment, I heard a low rumble and saw heat lightning, directly over my building. I said, "Is that the sign I was looking for?" and it happened a second and final time.

My most significant experience of God came the day before Ryan was born. Throughout the last couple of months of my pregnancy I had been plagued by a horrible itchiness. My skin crawled 24 hours a day, and nothing helped - I tried oatmeal baths, every anti-itch cream at the drug store, deep breathing... Blood tests had revealed nothing. Anyway, 38 weeks pregnant, I went for my weekly ob/gyn checkup. I parked at a 30-minute meter, thinking I would be in and out quickly, but she kept me in the waiting room for half an hour. As I headed over to my car to feed the meter, I saw a cop writing me a ticket. I started to run across the street to try to stop him, but I tripped and fell on my belly. My doctor sent me to the hospital for observation, and hey, as long as I was going to be there, why not do another blood test for the itchiness thing? The fall had not caused Ryan any injury, but the blood test revealed a liver imbalance that can cause stillbirth if delivery is not induced, preferably before the 38th week.

So thanks to Divine Intervention, my baby survived - he wasn't breathing and had to spend his first few days in NICU, but he survived. I carry a scar on my left elbow (check out that bandage!) as a constant reminder that everything happens for a reason, even if I can't figure out what that reason might be.