Sensory gym and sleep

Its 2:22am and Charlie is up. Again. I finally got him to stop doing laps in the hallway. Now he sits in his bed, in the dark, flipping pages of board books I placed next to him. Occasionally, I hear him singing. There are no discernible words, but I can tell which song it is by the hand claps. He's doing B-I-N-G-O now.

I am so tired.

Charlie, without fail, decides he only needs 5 hours of sleep a night during the busy stretches. Maybe that's not an accident, that during more chaotic periods of family life he just cannot sleep more than that. But as the laws of parenting would have it, the times when we need sleep the most, we don't get it.

Charlie now attends a sensory gym twice a week. Imagine the best possible scenario for a room with padded walls. Some of the equipment looks a bit archaic and frankly, quite frightening, and yet it is the most stimulating/soothing (depending on your sensory thing) experience. There's the steamroller- padded dowels that look like an old fashioned clothes wringer, that one can roll over, or roll though, compressed between the dowels. I imagine Charlie sliding out looking like Flat Stanley. He loves it. He loves being pressed. He loves lying on the floor while someone takes a yoga ball and rolls it one top of him while pressing down with all of their weight. Then there's the bag of balls- a swing, really, filled with little plastic balls, that you sit in. And the bench swing with three chains so you can swing in a circle. Since Charlie just started, he doesn't have a routine yet. He zips from one station to the next, with his therapist trying to keep up with him.

The sensory gym is like a hidden gem, or, if one is feeling dower about their situation of parenting an autistic child, its a prescriptive, pubic health version of the large ultra-trendy urban indoor play spaces with child hair salons and mommy and me yoga. Charlie's gym is located in an office building near Columbus Circle, one of those relics with windows stained permanently from car exhaust on the outside and cigarette smoke on the inside. After signing in at the nondescript lobby, and taking the elevator to the nondescript 5th floor, we enter the nondescript waiting room. Linoleum floor tiles, and loads of chairs, but not a single thing a sensory-seeking or avoiding child would respond to. But behind the nondescript door... Charlie pounds on it when we show up. He rattles the door knob. He starts to do his little grunts and vocalizations. Until someone opens the door. He barrels his way in, so incredibly happy. That's how the therapist who works with him at the sensory gym describe him when they re-emerge in the waiting room 30 minutes later. "He is such a happy little boy!" she says. He really is. We are lucky. In the mix of everything, we have a very happy son. Now if he'd only sleep.....

Emi-ism Archive

I'm replacing Emi-isms with "Exchanges with Emi". So here's the Emi-ism archive:

Emi-ism #61: "Mommy, I don't know how to be nice. I want to be nice, but my body is not controlling myself."

Emi-ism #59: "Charlie and I are twins because you know why? When I smile, he smiles."

Emi-ism #56: "I have super powers, you know. But I never use them because they're really, really secret."

Emi-ism #55: "I had a beautiful dream about nails. That our nails were as long as monsters. And there was this magic water that made our nails long and a fairy had it and she said, 'No more short nails until tomorrow.'"

Emi-ism #50:"I have superpowers in my eyes. When I close my eyes, they tell me what I'm going to dream about and what I want for my birthday."

Emi-ism # 48: "Crying reminds me of the drawing I made that I erased before I got to show it to you."

Emi-ism #47: You can be the fairy happy mother. I'll be the fairy love mother."

Emi-ism #42:
"I'm just into sugar, mommy. That's who I am. And I like it."

Emi-ism #37:
"(Bike) pedals are like see-saws for my feet!"

Emi-ism #23:
"An umbrella is like a trampoline for raindrops."

Schools

Not Emi- Charlie. I've been visiting schools for Charlie for the fall. He's aging out of Early Intervention in August. His services get handed over to the Board of Education- but not before another round of evaluations and meetings. And then there's the school visits, open houses, school-specific observations of Charlie, applications, etc. These schools, which serve kids on the spectrum and with PDD-NOS (that's Charlie), are paid for by the Department of Education. If we went private, the tuition would be about $45k.

We're halfway through the evaluations. He charmed the pants off of the evaluators last week. His sense of humor is amazing. He communicates so much with his eyebrows! His attention span is impressive. He also showed them that while it appears that he can't stop moving around, he can also sit down with you for an extended period of time and do whatever you throw at him. The shapes puzzle? Not a problem. Want me to scribble? Give me that pen! Read a book with you? OK- but read quickly 'cuz I'm a fast page flipper! Stack blocks? How many you got?

I was reading over his September IFSP reports (progress notes from his last EI meeting with the city people) and his progress since then has been amazing. He couldn't stand up or sit down without assistance back then. I can hardly remember that. He also couldn't stack blocks very well. Or say the words he does now spontaneously. Back then, it was only "banana" and "bath". Now he says "More!" and "Again!"

By the way- Matt got Charlie to start saying "please" this weekend. I've been trying for months. Now Charlie says it whenever he's prompted by anyone. THANK YOU MATT!

By May 1st, we should know where both kids are heading to school in the fall. SHOULD. Might not. Keep your fingers crossed...

Soup Dumplings

I intended to knit a pair of chunky fingerless gloves this season. I finally bought the materials in mid-February. It is now mid-March. Still no gloves. Each time winter weather made a comeback I thought, "Great! I still have a chance to wear these things if I can just bang them out in a few days!" But this type of thinking is irrational. It implies free time, control over use of such time, and immunity from interruptions, invasions by sticky fingers, and cries for help from the bathroom or kitchen.

This past weekend Niki was in NY. Emi and I headed downtown to meet her and wander through Soho and Chinatown. My head starts filling with plans. A new lipstick at MAC! Perhaps a dress for Dylan's wedding? Something pretty and sparkly from a local artist hawking her wares on the sidewalk! I've had my heart set on Soup Dumplings from Joe's Shanghai ever since Jose sang their praises when we first moved back to NY. It was my secret agenda- once I knew we were heading to the vicinity of Grand and Lafayette, I thought it wouldn't mean much more trouble to get to Joe's and finally sip the broth out of a soup dumpling. I'm sure you can guess how this turned out. It was further away than I thought. And once there, I ordered the wrong dumplings. I didn't even see them on the menu, and yet every person sitting around us were slurping away on the little sacks of goodness. But really, I realized at the end of the meal, Emi wouldn't have eaten them. They would have been too hot and messy and I would've spent more energy helping her eat them that I wouldn't have enjoyed them myself. In the end, Emilia ate up the steamed pork dumplings we had. She thoroughly enjoyed herself. And Niki and I actually got to have a conversation. I didn't find a dress (we only hit one store, and Emilia showed off her inner 'Carrie' , delicately handling the expensive vintage shoes, trying to sell each pair to me like a pro. The salesgirl, so impressed, showered Emilia with forbidden bubblegum and a gobstopper, which she promised not to eat until she is 6 years old). but watching Emi in the Soho boutique, all charming and precocious (both the store AND Emi) was priceless. No lipstick. But Niki bestowed upon me a pair of funky earrings she bought from a local jewelry designer who hawks her wares at a Soho flea market. As a gift, these earrings are more beautiful than if I had bought them myself. Emi went seven hours without the stroller and barely complained. The day was full of moments that made me look at her in awe and admiration.

I'm flying to Barcelona in April, just me and Aaron. Perhaps I'll knit those gloves on the flight.

What can you do?

Yesterday Charlie ate a blue marker after breakfast. Then he ate a blue colored pencil after lunch. Tonight he devoured a red marker as an appetizer before dinner. So I took a photo. It was all I could do after a week like this one.

Emi's Improv

The Return of the Spiritual Warrior

I think I have some explaining to do. But that'll come later. First, I wanted to share something...

Years ago, I bought the book, When Things Fall Apart: Heart Advice for Difficult Times by Pema Chodron. I've carried it around in my bag, brought it on long weekends out of town, and kept it by my bedside at home, but I've never read it.

I picked it up again today. I read a chapter entitled, "This Very Moment is the Perfect Teacher". Chodron writes,

Each day, we're given many opportunities to open up or shut down. The most precious opportunity presents itself when we come to the place where we think we can't handle whatever is happening. It's too much. It's gone too far. We feel bad about ourselves... Basically, life has nailed us.

These opportunities, or 'moments', as she also refers to them, can stir up feelings of anger, resentment, embarrassment, disappointment and fear. We do not feel in control of what is happening to us. We reach our limit, and fall apart.

But wait- this is Buddhism after all, so there must be something wonderfully valuable about feeling like crap.

These moments are when the spiritual warriors within us emerge. We look at the things that are challenging us as messengers "telling us we're about to go into unknown territory." Just don't freeze. Don't stop moving forward. Step beyond fear and hope and see this place as a "doorway to sanity." (I love the way this Buddhist nun writes!)

The egolessness of Buddhism aside, I know I'm a spiritual warrior. Years ago I learned that confronting difficult moments head on comes pretty easily to me. I somehow knew that it was the fastest and easiest route to happiness and to learning something from an otherwise icky situation. But a person doesn't build up a tolerance for confronting difficult situations. You cannot get numb to it, like slaughtering chickens, (just finished reading that part in Michael Pollan's Omnivore's Dilemma). That's not being a Spiritual Warrior. That's being a fraud. Besides, as Chodron writes,

We might think, as we become more open, that it's going to take bigger catastrophes for us to reach or limit. The interesting thing is that, as we open more and more, it's the big ones that immediately wake us up and the little things that catch us off our guard. However, no matter what the size, color or shape is, the point is still to lean toward the discomfort of life and see it clearly rather than to protect ourselves from it.

And just because I know I can get through something, and that there are spiritual and emotional gains to the experience, there have been several times when I have chosen to run. Or avoid. Or refuse to accept when I have reached my limit.

When I started this blog and wrote the e-mail to my friends and family, it was the first time that I referred to Charlie as autistic. Doesn't matter if he's 'mildly autistic' or 'high functioning' or 'non-verbal'- as recipients of the news, we all have different limits. Mild can hit just as hard as... not so mild. And what I was saying in the e-mail wasn't just that Charlie is autistic, but that I have an autistic son.

So if the news raised feelings of anger, embarrassment, fear, failure, loss of control, think of these feelings as gifts. Sit with these feelings for a while. Examine them. Settle in with them. And see where they lead you.

Start a blog.