Tuesday, October 29, 2019

Viral Stories

Down syndrome Awareness:

Look.

I don’t need my daughter to be Homecoming Royalty or an “honorary member” of a sports team or squad. Viral stories are a blip in what matters in the long run. My child shouldn’t be a charity act for another typical child. 

Obviously I can’t speak for the families whose students are “honored” in these viral stories - I’m certain it’s still a great feeling to see care for our kids - But I do want to know what happens the following week: Are students eating lunch with the girl with Down syndrome? Are students inviting the boy with autism to their sleepover or birthday party? THOSE are the events that truly matter.

Kindness is not a 1-and-done action.

I would rather my daughter have daily, meaningful moments of GENUINE friendship and inclusion than one big gesture that gets thousands of “Likes” and “Shares.”

Inclusion is not just for special occasions. Be kind and inclusive ALL the time.


Hannah’s Birthday Invite


Hannah had her first birthday party invite on Saturday that wasn’t a “whole class” invite. I was SO touched. The Mom said Birthday Girl asked to invite Hannah first. The Birthday Girl was SO sweet with Hannah; taking her hand, playing with her, telling her to sit next to her… it made me feel so LIGHT. The Mom and Grandmother knew Hannah and were so accommodating and lovely to Hannah, even when she was hesitant to sit, take a photo, or shy away from the high schooler dressed in a shark costume : D 

I’m thankful for sweet new friends. 

I’m also thankful we showed up halfway through when all the kids were exiting the pool so I didn’t have to get in with Hannah 😆


*Disclaimer: I was behind the phones making silly faces so Hannah would participate.

Monday, October 21, 2019

Sandwich Hag

My sister passed this story on to me - what a great duo! I wish Reyna Duong success in getting some Texas policy change for her brother’s ability to work! And I really want a banh mi!

Vietnamese Sandwich Shop Teaches Dallas How To Hire Differently


Shia LaBeouf on costar Zack Gottsagen:

This is an incredibly sweet interview with the stars of Peanut Butter Falcon, Shia LaBeouf and Zack Gottsagen. (4 minutes)

*Of note - in the UK, they use the term “Down’s syndrome” instead of the North American “Down syndrome.”

Shia and Zack


Invitations For Hannah

It’s hard as a working parent to get involved at school, let alone preschool – Mother’s Day program at 11am? I can’t! I don’t know many other kids or families and Hannah can’t communicate who her friends are. 

Then two rainbows popped up a couple weeks ago. 

First, a Mom reached out to me asking if I was Hannah’s Mom. Her daughter talks about playing with Hannah at school. The Mom suggested we make a playdate and I thanked her - what a big deal for us! Preschoolers do not see differences. 

Then the same week, Hannah received a birthday invitation - except this wasn’t an entire-class-invite. There were only two other kids invited. I had to message the Mother to even confirm that her daughter went to Milford preschool! The Mom told me her daughter named Hannah as her first friend she wanted to invite 💕


Now, this birthday party overlaps Ballet Moves and it’s at our swim school, so that means I have to put on a bathing suit to attend Hannah in the water. Normally I wouldn’t have even accepted this invite, but because Hannah was specifically asked among two other children, I’m going to pony up because this means a lot. 

I walked Hannah in to Extended Day after her eye appt this morning and everyone chimed “Hannah!!! as if she were Norm at Cheers. It always makes my heart swell. 



Friday, October 18, 2019

1:59 Marathon --> Down syndrome

For avid runners, we know “typical” marathons average around 4 1/2 hours - at a 10 minute pace.

When I ran the Flying Pig half marathon in 2013, I finished in about 2 hours and 20 minutes. As I came down the final half mile with the finish line in sight, the crowd cheering grew enormously. On my left in the marathon chute, the winner of the full marathon was passing me. It was surreal and super cool. He ran a full marathon in the time it takes me to run half that distance. Mindblowing. 


As time has gone on, marathoners have been inching closer and closer to breaking under two hours for a full marathon. It just happened last week. 


Nike has funded and trained a small trio of elite men (all from African countries) since 2014 to attempt this record. 


What most people don’t see are the scientists and engineers behind the scenes. Robby Ketchell is a performance scientist and a long distance runner. He also has an 18-month old son with Down syndrome. 





Robby is also virally famous for a photo taken of him carrying his son over the finish line of the 2018 NYC marathon




So proud of Robby and his connecting two of my loves: Running + Down syndrome! Keep up the advocacy, Robby! 

Thursday, October 10, 2019

Organ Transplant Discrimination


Did you know that people with Down syndrome and other disabilities can face significant barriers to life-saving organ transplants? Shocking, right? 

  • Some doctors may refuse an organ transplant for individuals with disabilities that need help to follow post-transplant treatment plans (even if they have already secured post-op support).
  • Some doctors may believe that individuals without a disability should have higher priority to organ transplant wait lists.

As the parent of a child born with both Down syndrome and a heart defect, Jackie Ward of Shelby Co, Ohio knew from the moment of diagnosis that she’d have to become an advocate for her daughter. “I had no idea that I would have to advocate to show the world that her life was worth living.”

Jackie and her husband, Brandon, brought 3-year-old Ellie to the Statehouse in 2017 to share their experience of inquiring about a heart transplant and to urge passage of a bill that aims to make sure people cannot be kept off organ-transplant waiting lists in Ohio solely because of their disability.

Ohio House Bill 332 was born, and then-Ohio Governor John Kasich signed the bill into law in June of 2018. 

Unfortunately, people are still being barred from organ transplants based on disabilities. You can start with your state representative. Tell them 7 other states have passed legislation UNANIMOUSLY. It’s a great bipartisan bill that makes sense. If they’re hesitant, reach out to your state’s Disability Rights Organization and see if they can help you lobby a legislator to introduce the bill. You can use the Ohio bill as a model bill for your state, and they can just tweak it for your state.





Wonderful Cincinnati Children's Video

Cincinnati Children's Department of Developmental and Behavioral Pediatrics just put out a promo video talking about their expertise - we are SO lucky to have them in town. 

Jenn Bekins was our first feeding therapist. I feel like I’d be friends with her in real life : ) 

Dr. Wiley is so patient and helpful. 

Grateful for our resources here!

See Me For Me