NDSC Boston, Saturday

The day dawned bright and early and Kathy and I worked more on our presentation, before attending a workshop by Susan Levine and Brian Skotko on sibling relationships. The talk was based on information they’ve gathered hosting workshops for kids–what kids wished their parents knew about them and their brothers and sisters.

The list includes (as best as I can remember): all sibling relationships are comprised of intense, shifting emotions, and siblings with special needs are no different; children know when something is wrong, and it’s best to address and discuss any concerns in an age-appropriate manner; when you’re unsure of what your child is trying to express, ask more questions, try to establish the context, but don’t jump to conclusions. Most often, children do not bring prejudice or loaded connotations to terms like Down syndrome–they are just curious. Our kids want us to take care of ourselves; they want us to know that it’s okay for us to do that.

Dr. Skotko also shared his own personal experiences within his family (he’s very funny!) and revealed, in part, the findings of some of the research on having a child with special needs in the family–which show that siblings are positively affected by the experience (they exhibit a higher level of maturity, a greater degree of empathy, and are more likely to enter the helping professions, like healthcare or social work or teaching, than similar-sex, similar-aged peers).  All this information and more will be available in an as-yet untitled book about siblings by Skotko and Levine, to be released by Woodbine House next year.

In the afternoon, Kathy and I gave our presentation, “New Parent’s Survival Guide.” The first half was a look at the baby–baby care, possible medical issues, Early Intervention, and a Parent’s Bill of Rights, which includes the right to prompt and professional treatment, the right to have all procedures and therapies explained in a way that you understand, the right to consider and weigh all options including the option of saying “No” or “Not at this time,” the right to fill your child’s life with people who support and encourage and love your family.

The second part focused on the family: the mother, and possible reactions to her newborn; the mother and father together and individually; the siblings; and extended friends and family. We closed the session with a plea for outreach and building community, and as an example, I read a short passage from my essay in Gifts, which speaks to the value of choosing our words with care.

Again, the session ran over. Too much to say, not enough time. As part of our contribution, Kathy and I had copies of both Road Map and Gifts to give out to any parent who wanted them. After our session we moved the books to the Exhibit area, and continued to pass them out there–Rebecca and Amy and Renee were fantastic, and it was one of the most fun moments of the conference for me–being able to share these resources with new parents, and doing it with my friends.

That evening was the Awards Banquet, and Kathy and I sat at the head table. The NDSC gave Road Map an award for Excellence in National Media, and I realized I was going to need to give a little speech, which I had not prepared. When the time came, I managed to get myself out of my chair, walk across the little runway, and down the three steps, all without tripping. I managed to keep myself together as I was introduced; I even made it to the podium okay. But then, I got very nervous. When this has happened to me in the past, I look out into the crowd and find a friendly face and speak directly to that person. But when I looked out into the crowd this time, all I could see was the shining glare of the spotlight, and then blackness.

I forged ahead: trying to say something about my indebtedness to Emily Perl Kingsley and all the parents who’d come before us–without them, there would be no NDSC or no books or no awards banquets. I wanted to say that after everything EPK had given me personally, all the support and the encouragement and the help with my manuscript, the only thing she asked in return was that I write a thank-you note to Sesame Street (which I of course did.) It was meant to be funny, but it all came out in a rush and I got about half of it said. (Note to self: no more extemporaneous speeches). I made it off the stage, then nearly tripped on the last step. I twirled around and had my photo taken and then went back to my seat at the table. When the ceremony was over, that friendly face I’d been seeking out appeared behind my seat. It was Michelle, who somehow knew I needed a hug.

The next morning, my flight left very early. I got to the airport, and made my way through security to my gate. All the while, without even knowing it, I was looking. Scanning the crowds, looking for my people, the families and adults and children and babies with Down syndrome. They weren’t there, and I realized I was alone.

It was as if the weekend showed me how the world could be: how inclusion and acceptance might work, if we only gave it a chance. And when it was gone, suddenly, and I was back in the real world, I saw how much I missed it. How empty and hollow and one-dimentional a world of same-ness was. How much work there is to be done, to make sure this doesn’t become our future. I felt it so strongly that I locked myself in a stall in the ladies room and cried.

It isn’t the first time being Avery’s mom has caused me to cry; I’m sure it won’t be the last. But I don’t want to end this post on a note of sadness, because that’s not really how it felt. The whole weekend felt like a priviledge–that I had been able to peek into a life that’s waiting for us, ahead. If I feel any sadness at all, it’s the urgency to close the gap. To make our world more like the place I visited that wonderful weekend in Boston.


9 thoughts on “NDSC Boston, Saturday

  1. Just a bit of encouragement here about that “gap.”

    Last week we were at the library here in town. My 4-year-old son wanted to play with the puppets in the little puppet theater that he loves in the children’s section.

    There was already a girl playing, but her mom encouraged her to make way for another puppeteer, and I encouraged Kyle to play nicely.

    She watched him play, and he watched her play. They fought over the mouse puppet that Kyle was hogging, and eventually he gave her a turn with it.

    The fact that she has Down syndrome didn’t change their play a bit. The kids have “got it.” If they can hold on to it through adulthood (as my daughter who is almost 10 seems to have done so far), the world WILL be a different place.

  2. No need to worry about acceptance speeches–your words in “Road Map” reveal so clearly who you are and all that matters to you…with the result that everyone who reads it loves your book and its author! Know that to be true!

  3. I do the same thing in the airport after the conferences–I keep looking at all of the families and wondering where their child with Down syndrome is…

    It would be a wonderful world!

  4. I know what you meant about walking through the airport and scanning for familiar faces. We left on Mon, so there were even less familiar faces by then, I think most people left on Sun. It was sad to not be surrounded by people with Ds everywhere I looked.

    I’m so glad I was able to meet you, albeit briefly, maybe next time we’ll be able to chat a little more 🙂

  5. Love to you, Jennifer. I am sure you represented all of us very well! I am jealous of all the IRL meetings that took place in Boston. Someday…

  6. awwww, you made me cry. 🙂 You sure did look like you needed a hug. Stop beating yourself up, you did FINE. Had to be pretty scary. I remember you hugging me SO hard, and feeling like I had just put a piece of my own heart into place, isnt it finny how much you can come to actually love a stranger on the internet? I feel like I watched your birth in a way, from those early days until now…and now you are so “there”!!! I am honoroed that you would include me in your story, and hope someday to have more time, and of course, to meet the boys. Im so proud of you, Jennifer.

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