NDSC Boston, Friday

My plane arrived late Thursday night, after delays due to bad weather. The airport was nearly deserted, and as I was walking toward baggage claim and the area for ground transportation, I passed a woman from a car service holding a sign that read, “GRAF.” Confused, for a moment I thought the sign was meant for me and a little thrill went up my spine. A car service, waiting for me! This is the life, I thought.

Of course, had I kept my wits about me, I would have remembered that my name is “GRONEBERG.” The car didn’t belong to me, but to Robert Graf. Hi Robert!

I took a yellow cab which drove beneath a great, long tunnel and when it emerged, there was the city of Boston, bright and clear. The night air was soft and smelled like the ocean. The cab driver deposited me safely in front of the Renaissance Hotel. My room was on the 18th floor and from it, you could see the city and boats in the harbor and farther out, the blinking lights of the airport.

I shared the room with Kathy Soper, who arrived even later than I did. We stayed up talking about everything you might imagine: first, travel plans and flights and delays; then the conference and our presentation; then kids and families; finally, religion and philosophy and life.

Friday was my first work-day. I hosted a Sharing Session for Mothers Only, Birth-Age 2. Right before the session, I met Rebecca and Miss E and Amy Flege and Miss Mayson for the first time (in person)–both ladies are kinder and sweeter and funnier in real life than I realized, and their children are so beautiful and amazing.

In the beginning, there were just a few moms at my session, so I didn’t use the microphone or the dry erase board, which might have been a mistake. One by one, moms arrived, some with their babies in tow. Within the first half hour, the seats were filled, and moms began sitting on the floor.

The chairs were arranged in a circle and we went around the room, introducing ourselves by first name, ages of our children, and what we’d like to talk about that afternoon. As the women spoke, it became clear that there were three main things on their minds: balancing work/home life/therapies/relationships; preparing for an upcoming heart surgery; and making the transition from home to preschools.

We dove into these subjects, and I mostly went from person to person and indicated whose turn it was to speak. Points that were raised for each concern (as best as I can remember them) included:

Balance–these are questions of motherhood, in general, too, and not just related to special needs motherhood. There are no right answers, in terms of amount of therapy or frequency. Each child is unique, and the child’s needs will grow and change over time, too. Therapy isn’t like a bus that you either catch or you miss–you can begin any time, you can change it when you need to, and you might take breaks from it, also, as seems fitting. There was a discussion about the pressures we put upon ourselves, too–and realizing that our children are who they are, and that it’s not up to us to change them, but to provide opportunities to help them reach their potential. This part of the talk seemed difficult for some of the moms to hear; women who believe that their child will be the child to set all the records and beat all the odds, as I once did, too.

The second part of the discussion focused on finding support for a family whose daughter was about to undergo open heart surgery. Names and resources were shared. One mom spoke about her personal experience with a similar surgery, and offered these suggestions: speak up, ask a lot of questions. Don’t be embarrassed to be pushy; the squeaky wheel gets the grease. Stay by your child’s side and room-in whenever possible. Double check everything–you don’t have to be a doctor to be your child’s advocate. You are the expert on your child and if anything at all doesn’t seem right, say so. Trust your instincts.

The final part of the conversation was about making transitions to preschools, which is something I’m not particularly qualified to talk about, since we homeschool. Other mothers spoke to this point, and these tips were offered: stay active and involved in whatever ways you can manage; the expectations you have for your child should be high, and you should hold others to them also; IEPs are not necessarily something to be dreaded, and if done well, they can be an effective tool for communication between all the members of your child’s team.  A life book can be made for each child, which is a binder of information including photos, any medical information, an introduction to the child from the family, from the PT and OT and ST, as is appropriate–anything that might better help a teacher or aide come to know your child. The life book follows the child throughout his school years, with teachers and other students adding in pages as the child grows.

Several twin moms were in the room, and the idea of building a support group for twins was raised. The session went over our time limit.

While this was happening, there was a Downsyn.com meet-up, which I was very sad to miss. But I was able to attend the opening keynote address, given by Emily Perl Kingsley, titled, “Still Traveling.” She shared a brief recollection of her early days as Jason’s mom, and of her efforts at Sesame Street. Then she revealed she’s working on a new metaphor for explaining life as the mother of a child with Down syndrome: this one is about a boat. We’re all in this boat, she explained, and it may not be the boat you thought you’d be on (the one with the climbing wall and the margaritas) but it’s a good boat, anyway.  It doesn’t matter where you are in the boat–front, back, middle.  Just pick up an oar.  And if we all pull together, we can go places, too. 

Later in the year, she’s the keynote speaker at the Buddy Cruise (on a boat like the ones with climbing walls and margaritas!).

After, I stood in line with the dozens of other people to meet her. She gave me a big hug and it was as if a circled had closed around my life, around her and me.  I was able to thank her, for her courage, for her honesty, and for the example of her life.  It was one of the best moments I’ve known.

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