Dup 15q Syndrome

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Dup 15q Syndrome
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    Crushing it

    My kid is on fire this morning. Flying through her schedule. High fives for her and for whatever you are accomplishing too. #Autism #Parenting #Anxiety #Depression #Dup15qSyndrome #MightyTogether #MentalHealth

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    Kindness wins

    Two weeks ago I wrote a post on LinkedIn about a special moment I had with my daughter during one of her trips to CVS, which we visit every day after her autism program (I shared it here too). To my surprise the post was viewed over 100,000 times and reached the CEO of CVS Health who took the time to leave a thoughtful comment.

    But it gets better. Last night my daughter received a package filled with goodies from the CVS Pharmacy team and this handwritten note. Our team at The Mighty serves millions of people managing health challenges and disabilities and we talk a lot about the human side of health, about how healthcare should feel. It should feel like this.

    Today Annabel will head into our local store with her new CVS cap on and we’ll have a nice story for the employees who always have a kind word for us. This team has become an extension of our community. Thank you, CVS. #Autism #Dup15qSyndrome #MentalHealth #Parenting #CVS

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    Mighty moment

    Most days when I pick up my daughter from her autism program, the first thing out of her mouth is three letters: “CVS.” She repeats them over and over. She wants to stop at the drugstore to pick out a treat, which just may be the highlight of her day. I give her a high five. “OK, let’s go to CVS.”

    We pull up and park in a handicap spot. I feel a little guilty as I hang the placard over the rearview mirror because as slow as Annabel walks, she can get there. If I’m being honest, I park here because it’s 50 feet less space between the store and the car where she might drop and have a meltdown.

    She paces the candy aisle, pointing at a bag of cinnamon bears and looking up at me, her way of asking me to tell her about the treat. Some days this selection process takes 5 minutes and others it may take 15. She has taught me patience. Today she selects a lollipop that fits within a plastic Baby Yoda figure. $6.99 for a $0.25 sucker. Ridiculous, but impressive marketing.

    As we pay for it, she points to Baby Yoda’s brown eyes and says, “chocolate eyes,” which surprises me. “What color eyes do you have?” I ask. “Chocolate eyes,” she says. “What color eyes does daddy have?” Without hesitation she looks up with a knowing smile and says, “blueberry eyes.” This spark of imagination means everything. To see her light up brings joy, pride and love. This is why we do what we do. Parenting at its best.

    (recent picture of Annabel at Atlanta's botanical gardens)

    #Autism #Dup15qSyndrome #Parenting #MightyTogether #MentalHealth

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    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

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    Full circle

    The Mighty has come full circle for me. We built it for all of you but now I need this community more than ever.

    We've all struggled during the pandemic, but it's been particularly difficult on kids with intellectual and developmental disabilities like my daughter. Losing therapy services, in-person school, routines and so much more sent her into a tailspin that she hasn't recovered from.

    Several of our daughter's doctors recommended she attend a program at the Marcus Autism Center in Atlanta for the next 3-6 months. A few weeks ago, I moved here with Annabel, leaving my wife and 3 boys back in Los Angeles.

    It's already clear that this was the right decision, but it doesn't make the transition any easier.

    Fortunately, the pandemic also taught us all how to become more resilient. We all had to find support in other places. For me, one of those places is increasingly The Mighty community.

    Above you can see Annabel flipping through laminated photos of our favorite people back home. She finds comfort in them. When I can't talk to them, I know I can tap into my Mighties. I find comfort in you all too.

    Thank you to all our writers, community leaders and partners for helping build this community. I'm so grateful to have genuine support in my pocket.

    #Autism #RareDisease #MentalHealth #Anxiety #Depression #Dup15qSyndrome #MightyTogether

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    Rare disease day

    Today is Rare Disease Day. I am fortunate to work with so many people and organizations that help those living with rare diseases, but today I am mostly celebrating this girl. This past year brought her more setbacks than we could have ever imagined. Still, she finds moments of joy. Her courage and strength are astounding. The pandemic brought isolation to us all but it also stole so many important services and therapies from people who really needed them. Let today be a reminder to check in on a friend, family member or coworker who may be dealing with a rare disease or any health issue for that matter. Show them a little love. You will make them feel like this. #Dup15qSyndrome #RareDisease #Autism #MightyTogether #MentalHealth

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    Happy Halloween!

    Hope you all enjoy a few treats tonight.

    #RareDisease #Autism #Parenting #MentalHealth #ChronicPain #Dup15qSyndrome

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    Social distancing

    How are you all coping with this isolation? We have 4 kids in a small house. This weekend a couple of them set up our tent. It was a chilly night but a fun adventure. I’m curious - what is helping you manage through these challenging times? #COVID19 #MentalHealth #Depression #RareDisease #Autism #Parenting #Dup15qSyndrome #MightyTogether

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