Tuesday, March 26, 2013

The best therapy for special needs moms


I spend a fair amount of time connecting with other moms in cyberspace—here, on Facebook and Twitter, by email. I hardly ever meet up with special needs moms in real life, except for a once-a-month girls night out that I get to every so often. But I was reminded of how key it is at the Blissdom conference, which I went to last week in Dallas to be a parenting/special needs community leader.

Blissdom is generally known for having a welcoming vibe, excellent information, loads of inspiration and sparkles—lots of sparkles. Katy from Bird on the Street (that's her above) roomed with me for a couple of days; her son Charlie also has cerebral palsy. Katy awed me by the fact that: 1) she is every bit as sharp and sane as she was when I met her in person years ago, even though she now has four kids under 5 and 1/2, and 2) she gets plenty of sleep because she believes in naps and valerian root. We giggled, laughed, cackled and generally cracked up from early morning to late at night. So much so that once the people next door called Security on us. Oopsie.

At the conference, I met Jessica of Don't Mind The Mess, mom to a three-year-old with PDD-NOS, and Sarah of Our Sonshines, who recently found out that her child could be a good candidate for selective dorsal rhizotomy. Hours before, a Blissdom staffer told me that her son with CP had the same operation, and it was a success; he'd gone from not being to support himself on his inward-turning legs to walking with DAFOs. I told Sarah about that as the buzz of chatting women surrounded us, just two moms connecting over CP.

Then I had late-night coffee with jewelry designer/blogger Lisa Leonard. Her son David, who's 10, has cornelia de lange syndrome. We talked a lot about our boys—how funny they are, the challenges they face, the scary medical stuff. We told their birth stories. I teared up. It was intense and inspiring and I went back to the room and fell into the deepest sleep.

Blissdom was a reminder of the power of heart-to-hearts and real-life laughs and being able to drink your a.m. coffee without anyone demanding to watch Cars 2 or begging you to let her wear a dirty shirt in the laundry. It's a reminder that I need to get to Girls Night Out more often. As much of a lifeline as our online special needs community is, there's nothing like actual meet-ups with other moms who get your highest highs and lowest lows. (Shout out to Allie of No Time For Flash Cards, Elaine of The Miss Elaine-ous Life and Jennifer P. Williams, who are also full of awesome.) Thank you, ladies: I feel so revived. Although come to think of it I could use a nap; Katy, can you lend me one?

Photo/Elaine Alguire

14 comments:

  1. Loved hearing about all these connections you made!

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  2. One of these days I will get to one of these amazing conferences. I will. I. Will.

    And by the way, you look lovely in green, Miss Ellen! :)

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  3. I am so glad I got to meet you and chat with you! You are seriously so sweet. Thanks for the shout out.

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  4. I really would have loved to giggle & chat with you all too. Hopefully Blissdom 2014 :)

    Glad you had a good time. And glad you met Jessica of Don't Mind the Mess - she's fun!!!

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  5. It was so great to talk to you and get to know you better this time at Blissdom! And I do like that photo of you two crazy girls! hee hee! Hope to see you again next year, Ellen!

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  6. It's good to meet other moms sometimes I feel like my mom feels alone in everything she has to do to help me other parents talk about how well their kids are doing in college my mom can't exactly say "my daughter she just turned 22 she's learning how to wipe herself in the bathroom" it just sounds weird.

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  7. Ellen, what a fabulous opportunity for you all xx

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  8. Love this.

    I once watched a documentary on stress, and part of it detailed how mothers of kids with disabilities endure so much stress that they begin to literally unravel on a cellular level.

    A great way to repair that damage, researchers found, is for these women to maintain relationships with women in the same boat.

    Amazing ... I knew it felt good to bond with mamas like me, but it was awesome to see the science behind that.

    You can watch that portion here, starting at 39:40 ...
    http://www.youtube.com/watch?v=eYG0ZuTv5rs

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  9. I'd love to lend you a nap, but I seem to be using all of mine at the moment! Although I swear if I take that Valeria root I sleep so well I'm not sure I need a nap.

    There is something about getting to hang out with other people who "get" what our lives are like--and who already know what SDR is! I had a fabulous time rooming with you and we should do it again soon.

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  10. I'm so glad I got to meet you, too! I'm not sure what it is about special needs parents but they are always the most awesome people to hang out with. I had so much fun with you guys.

    And, you know, it's nice to be able to tell someone that you just saw your kid using social skills that wowed you and they don't care when you start weeping.

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  11. Also, you're my favorite photo bomber ever.

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  12. I loved meeting you so much. It was honestly one of the highlights of going to Blissdom. See you in July in Chicago. ;)

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  13. I wish I would have had the opportunity to talk with you more - but it was nice running into you a few times :) You always had a welcoming smile and baby X liked it too.

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  14. So enjoyed our short visit and your enthusiasm and smile! :) Loved seeing you at Blissdom. I love the picture I got of you in the coffee shop - it's on the Blissdom Flickr set!

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Thanks for sharing!



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