Empowered Moms

These days I don’t feel so empowered, at least not on a macro-scale. I feel good about what I can do, what I am doing, for Martin. I am pleased to see other biomed moms banding together and trying to provoke change—see, e.g., The Thinking Moms Revolution or The Canary Party. I am grateful that other biomed moms create on-line forums and Facebook groups in which I can participate. As for me, my own engagement in collective action is on hold, not really in the realm of “what I think I can handle right now.” I need to recover Martin. Then I’ll change the world.

That all being said, recently I have joined together with two local special-needs moms (not biomed) to get something done. Actually get something done! Last summer, we were lamenting that our kids don’t have much way to make friends, and practice keeping them, here in our small town. When we make play dates for our kids, they engage in parallel play more than interactive play. There are professional resources available, like the play program that Martin attends (and adores) in the City. Unfortunately, those programs draw participants from a wide geographic swath, making after-school or casual get-togethers impracticable for the kids, and the cost excludes many families.

We three moms decided that what our town needs are facilitated social-skills playgroups for special-education students. And then we decided that, if the need is to be filled—we’re on deck. We formed a playgroup of six kids, grades kindergarten-through-second (ours kids plus three more, none in the same school class); hired a facilitator (a master’s student in elementary special education); found a time that works (late Friday afternoon); and got started, rotating each week among the participants’ homes. The facilitator comes prepared with games and exercises designed to foster social skills like sharing, taking turns, greeting, and getting to know each other.

By the fourth meeting Martin had fallen in love with his new playgroup. He calls his fellow participants “my friends from town.” All week he looks forward to Friday. He talks about whose home we’ll be visiting that week; one morning, he even created his own “Friday play date” schedule, listing out each child and checking off the retrospective house. He asks questions about what his “friends from town” do on the other afternoons. He wants to join them.

When the other moms reported similar enthusiasm from their kids, we knew we were onto something. We put together a formal proposal to bring the social-skills playgroup under the auspices of the local special-education parent-teacher association, which would both help defray the facilitator’s fees and also publicize to other parents who might be interested. Then we coordinated with a local Girl Scouts troop whose young women are interested in working with special-needs kids. As part of seeking their Silver Awards, several Scouts are going to come each week and assist our playgroup facilitator with keeping the kids focused.

Getting this project up and running, when so much else is on our shoulders, feels like a big achievement. We were correct that our town needs social-skills playgroups. As of this writing, enough parents have contacted us that we will be able to fill two additional six-member playgroups when we start our spring term next February.

Yay for moms, making stuff happen.

Notes on a Wednesday

Wednesdays, of late, are exhausting days for me and Martin. He plays hooky from school. We start the morning by driving more than 50 miles to Wilton, Connecticut to visit Martin’s new homeopath and, if it’s an appointment week, his biomedical doctor.

(Note to careful readers: We switched biomedical doctors five months ago, because Martin’s former practitioner moved to the West Coast.)

From Wilton, when our appointments are through, we get back in the car and drive more than 60 miles, back into New York State, across Westchester County and across the Tappen Zee Bridge and Rockland County, at last dropping into New Jersey at Ringwood, where Martin participates in hippotherapy. We eat lunch in the car: a sandwich for me, and Dr. Cow tree nut cheese with rice crackers for Martin. Then, while Martin spends an hour riding horses, I hike to a tiny farm and buy eggs.

Around 3:15 pm Martin and I get back into the car to drive 45 miles home. (Are you keeping track of all these miles?) Although it is the shortest leg of our journey, this takes the longest, anywhere from 90 to 150 minutes, depending on traffic getting back into and through the City.

Last Wednesday, on the morning drive to Wilton, I spent 20 minutes on the phone—hands-free Bluetooth, of course! I respect all traffic laws—trying to negotiate a good deal on the purchase of an infrared sauna. (More on that in a future post.) Martin was supposed to be practicing “being quiet while Mommy’s on the phone.” Instead, he grew increasingly agitated until he was sobbing while repeating, “You’re going to get off the phone! No more phone! You’re done with the phone.” I apologized to the sauna representative and finally, when I could barely hear him over Martin’s shrieking, aborted the call. Meltdown.

So that sucked. But three very cool things that did not suck at all also happened last Wednesday:

The update for Daddy: At the office of the homeopath—“Miss Lauren,” as Martin calls her—is a pile of toys. I was talking with Lauren when Martin appeared with a toy mobile phone in this hand and said, “Mommy, I’ve got a phone.” I replied, “Oh? Would you please call Daddy and let him know we got here okay?” Without further prompting, Martin nodded, hit a few buttons on the toy phone, held it to his ear and said, “Hello, Adrian? But because we’re at Miss Lauren’s. Okay. ’Bye.” (Martin is in a phase wherein he calls Adrian by his first name instead of Daddy or Papá. “But because” is a verbal tic that Martin has.) Comprehending my request? Pretending? Following a direction? Yes, yes, and yes, thank you.

The hippotherapy superstar: Martin does hippotherapy with a speech-language pathologist. Hippotherapy requires body awareness, multisensory activity, and concentration. Martin’s performance varies widely from week to week. (Martin’s performance on just about anything can vary widely from week to week, day to day, or even hour to hour. That’s the nature of the biomedical beast.) Last Wednesday, when I came to claim Martin after his riding lesson, his speech pathologist said, “He was awesome today. Awesome. Can you bring this version of the kid every week?”

The gesture of support: Do you remember my post from last Tuesday, about the best ways to be supportive of a family wading through autism recovery? It ended with these lines:

That’s all we really want, any of us, right?

A little faith, and a cookie.

When Martin and I arrived home from our three-state extravaganza last Wednesday—one day after I posted about how to be supportive—I found a package waiting for me. Inside was a card quoting those two lines. Under them, handwritten by the friend who sent this card, were the words: “Some of us need a whole box of cookies. Prayers to you and your family. Always.” Enclosed with the card? Yep. A box of cookies.

I’ve been reading the Thinking Moms’ Revolution new book of essays. In one piece, the mother of a boy on the spectrum is asking, “Why did this happen to my baby? What did I do wrong? Is God mad at me?” Her mother, the boy’s grandmother, intervenes and points out that, if things had been different, she would not be asking, “Why did God give me a healthy child?”, so she doesn’t get to ask “Why?” now.

Sage advice, right? What happened to my son—the Pitocin, the C-section, the antibiotics, the vaccines, whatever combination caused this autism—happened. But it doesn’t mean my life doesn’t rock steady.

It doesn’t mean I don’t live in a world of blessings.

The Wanaque Resevoir in Ringwood, New Jersey, where I hike while Martin rides horses. I took this picture with my iPhone a couple weeks ago. Life is good.

The Monksville Resevoir in Ringwood, New Jersey, where I hike while Martin rides horses. I took this picture with my iPhone a couple weeks ago. Life is good.