Dup 15q Syndrome

Join the Conversation on
Dup 15q Syndrome
1.1K people
0 stories
87 posts
  • About Dup 15q Syndrome
  • Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
  • Explore Our Newsletters
  • What's New in Dup 15q Syndrome
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Community Voices

    Crushing it

    <p>Crushing it</p>
    7 people are talking about this
    Community Voices

    Kindness wins

    <p>Kindness wins</p>
    9 people are talking about this
    Community Voices

    Mighty moment

    <p>Mighty moment</p>
    6 people are talking about this
    Community Voices

    My new habit

    I have a new habit that sends me to sleep feeling very good. I wish I would have started this years ago.

    My daughter's day is mapped out in two hour blocks. In each period, I write down what problem behaviors she has had, their frequency and intensity. It's not my favorite part of her autism program, but an important one. It got me thinking: If I'm tracking her behaviors, shouldn't I be tracking mine -- how I'm trying to help her?

    So these are the five questions I write answers to every night:
    1. How did I show her love today?
    2. How did I bring her joy today?
    3. What did I teach her today?
    4. How did I make her feel heard today?

    I shared this with a new friend (I like making new friends!) and he suggested a fifth question, which is actually quite motivating:
    5. How can I do a little bit better tomorrow?

    I wish it hadn't taken me 15 years, now as a parent of four kids, to start doing this, but I think it's a habit that will stick. It just takes a few minutes and I like falling asleep with that last one lingering -- how can I do a little bit better tomorrow.
    #Autism #Parenting #RareDisease #Dup15qSyndrome #MentalHealth #Anxiety #Depression #ChronicIllness #ChronicPain #MightyTogether

    16 people are talking about this
    Community Voices

    Full circle

    <p>Full circle</p>
    12 people are talking about this

    Taking a Road Trip With My Daughter on the Autism Spectrum

    It’s raining in South Georgia and traffic is backed up for miles. Anxiety mounts as I check to see if our daughter and sole passenger is still napping in the back.  When traveling with Erin, who has autism, moments of peace like this are gold dust, which on a 1200 mile journey, you hate to squander standing still. I’m at the wheel which I stole from Bill at the last pit stop, slipping into the driver’s seat as he waited for a Happy Meal. An earlier music search caused Erin to stir so we’ve settled on silence as we study the tall pine trees that line I-95. Every now and then as the traffic eases and I speed up Bill raises his hands dramatically as if bracing for a crash. Given the silent game, I can’t respond as I’d like.  Instead, I suggest he close his eyes. He pretends to relax but he’s not comfortable with this arrangement. After 22 years, we have our roles and routine. He drives. I play copilot, DJ, sharer of fun facts from random reading material and purveyor of snacks. For a long time, this worked fine. Early in our marriage, we lived in London and spent most weekends exploring the countryside. British accents, idioms and earnest-sounding weathermen were a novelty. We couldn’t get enough of the BBC’s news, interviews, game shows — and “ Babylon” by David Gray. We spent half our time meandering down uncharted paths, slowing down for sheep crossing and the occasional tractor. I’d sprawl colorful maps across the dashboard, reciting the names and history of tiny towns, ancient ruins and rolling terrain from our Fodor’s and Lonely Planet travel guides, all the while reminding him to keep on the right side of the road. “ Turn here. No the second exit off the roundabout. I think we’ve gone too far — but look! This pub is adorable. Let’s stop here.” And we would. We had nowhere to be — and no car seat in the back. So we’d linger over a pint or two and wonder what the rest of our day and days might bring. When Erin and her three younger brothers eventually arrived in surprisingly quick succession, copilot duties expanded to keeping the little people fed, dry and happy. While the boys can now pretty much manage this on their own, Erin, who also has a seizure condition, still requires close surveillance — which adds to the allure of driving.  More in sync with her moods and preferences, I’m frequently in the hot seat, but I find it a welcome and admittedly amusing switch to see Bill take my place. When Erin wakes, he parcels out the contents of the Happy Meal one by one, including a stuffed, unidentifiable object from the movie “Soul.” He contorts to clean ketchup from her face, fingers and chair while she fires off requests for her favorite songs. “Dynamite by BTS, Dad! American Girl! Let it Go!” Bill scans my phone for her selections. Struggling, he tries to distract by pointing out a Target truck. He suggests we switch seats. I decline. Eventually, though, we have to stop, get gas and trade places. I dole out popcorn and Peanut M&Ms as we begin to make up time in the Carolinas. I start to doze off listening to Bill pepper Erin with questions about the Puppy Dog Pals and passing cars. She tugs on my shoulder every few minutes to ensure we are both fully alive and engaged — and the snacks have not run dry. We couldn’t be further from the English countryside and an impromptu pub lunch. I wish we could pay those two kids a visit, pull up a chair and order a pint. I’m not sure where I’d begin or whether any of this should be shared. I guess I’d just tell them to turn up the volume while they can, switch seats every now and then and enjoy the ride.

    Community Voices
    Community Voices
    5 people are talking about this
    Community Voices

    Happy Halloween!

    <p>Happy Halloween!</p>
    12 people are talking about this
    Community Voices

    Social distancing

    <p>Social distancing</p>
    7 people are talking about this