[I wrote this for our local Down syndrome group's blog here; just re-posting for my own records. Carry on... :) ]
My daughter was diagnosed with Down syndrome in utero, right after they found a massive hole in her heart. I spent the last few months of my pregnancy reading everything I could find but I was never much one for groups so I stayed quiet on the message boards, never left any comments on the blogs I stumbled across, and was still blissfully Facebook free. I was also distracted by the fact that several months hence someone was going to slice my child’s chest open – “community” isn’t on the radar when you’re busy studying survival statistics.
I was also a little alarmed by the vast spectrum of people out there – angry, religious, atheist, grieving, perky, happy, sad, you name it. It was overwhelming and I doubted whether a little chromosome was reason enough to wade into that mess. It took years before I started blogging myself and then another couple before I finally conceded to the lovely monstrosity that is Facebook. Along the way I did latch on to a few like-minded moms but I didn’t attend the NDSC convention, the mother of all groups, until last year. And I – an admitted introvert – was sold. Hard. And now I want to sell you:
First, there is a ton of information. They do an awesome job of offering something for every age range and interest – from babies, to school, to independent living. There are talks about finances, science and research, computer apps, and pretty much anything else you’d fancy. Even if you can’t go every year, you should go just once to listen to Dr. Skotko talk about siblings and Libby Kumin on speech. This isn’t information you can pick up in an internet article or a textbook, this is why and how, at its best.
This year, for example, after a surprising decision to send my girl to kindergarten early, I attended a talk on inclusion by Patti McVay and it was revelatory. I understood it to be the preferred practice, understood the theory of peer modeling, and have cheered and consoled friends as they wrangled with their schools, but it wasn’t a reality for us yet and I remained a bit fuzzy on the logistics. I worried about bullies and my girl ending up in the corner, ignored. But I left that workshop weeping, full of hope, and I am NOT a crier. This alone was worth the trip.
Second, it’s euphoric. Just imagine a weekend surrounded by people who get it. Who won’t accidently let slip the “R” word, who intuitively understand that kids come in all packages, and who only express pity when you tell them about that crazy shuttle ride, not when chatting about your child’s latest ups and, um, downs. Plus, you can meet your computer friends in real life, turn them real friends, and it becomes much less weird to explain your social circle to the in laws. And did I mention I’m not a people person? If you normally like people, it might be even better.
Third, it’s a great opportunity for the kids. We actually left mine with the grandparents this year because the kids’ camps fill up faster than I can plan, but ignore the hypocrisy. Yes, inclusion is awesome – the other 362 days of the year. My daughter will learn to live in, navigate, and find happiness in this world just like her typical brother. But I’m not naive enough to think it will always be easy for her. I want to offer my daughter a fun weekend where she can relax and compare notes with her peers, complain about her over-protective parents, and cut loose on the dance floor, free of high school prom politics. (Did I mention there was dancing? There’s dancing!) There’s an entirely separate track for self advocates over 15 – a space just for my girl and her friends.
There’s also a sibling track for 6th graders and up. As great as my two kids are together now, and as open as we try to be about it, I’m also not so naïve as to think my son might not want to touch base with other kids who have to sit in SLP waiting rooms. He might even want to let off a little steam about his goofy parents or atypical sister, without it turning into A Thing.
Even if classes make you yawn and your kids never complain, last year I was waiting in the lobby for my husband when I saw a teenage boy do what teenage boys do the world over – he walked past a girl dressed to the nines for the dance, did an abrupt about face, walked up and introduced himself. My husband arrived and we left to the sound of the girl giggling. Both had Down syndrome. My heart melted.
I know it can be expensive. My husband works for an airline, we fly for free, and it’s still expensive. But after the first year I swore I’d go even if meant three days of top ramen and park benches (happily for my back, we were able to avoid that this year). And lucky for YOU, next year’s conference is in Indianapolis, a mere 4 hour drive from St. Louis. If the budget looks daunting, don’t despair:
Skip the meal plan. We’ve never done it. Most hotels have mini-fridges now. Swing by a grocery store and pick up a couple staples before you check in – yogurt, cereal, PB&J, top ramen, whatever floats your boat.
Skip the big award dinner. We had a pizza party in our room that night instead. Just as awesome, no crowds, no rubbery convention chicken. The dance after is always free and there’s no dress code. You see everything from shorts to prom dresses.
You don’t HAVE to stay in the designated hotel. If you can find a cheaper hotel nearby, book it. Someone else will invite you to their room for pizza and nobody will notice or care where you slept.
If you’re still skeptical, come the first year kidless, even spouseless, to check it out before you multiply your costs by a few mouths. You’ll get the presenter’s power points as part of your fee and can report back. Some of the presentations are even available by video later.
Split a room – there are always others traveling solo. FB is great for cost sharing hotels, cabs, etc.
Community, information, and dancing – what’s not to love? It’s a short drive next year, and who knows? If you come, I may even invite you over for pizza.