December Birthdays

Nora had seven pals over for her 8th birthday. Turning 40 doesn’t make me feel old, but having an 8-year-old does! 

The girls were al well-behaved and it was a bit loud and boisterous, but all good!

Oh yeah - I also turned 40 this year. I haven’t be dreading it; I don’t *feel* 40... maybe like 34 still. We had one good evening to celebrate. Dinner with Tim at 20 Brix in Milford; prosecco and scallops - yum!

Afterwards we hit Bishop’s Quarters; a 3-level bar in Loveland. Such a neat space, however the 3rd floor was closed for a private party AND they kicked us out of the 2nd floor unexpectedly to an over-booked party. The bar covered our floor 2 drinks and gave us appetizers, so I supposed that made up for it. 

Nearly all my good friends showed up for a drink which was fantastic. 

I’m grateful for my health and my body and looking forward to a new decade; not everyone makes it this far 🌈✨

Thanksgiving 2019

Geezum - Thanksgiving flew by. It always goes too fast. Nora received a few gifts. The llama pajamas have been a bigger hit than the Barbies 😄

Nice quiet time at my parents with siblings and partners.
Lots of buzzing at the Krons with people all about.

Hannah with pals Ewan and Ellie

Pope Francis & People with Disabilities

December 3rd was International Day of Persons with Disabilities.

I do not tie myself tightly to any particular religion at this time, however Pope Francis released a great statement to commemorate the day. 

One highlight: 
“Making good laws and breaking down physical barriers is important," the pope wrote, "but it is not enough if the mentality does not change, if we do not overcome a widespread culture that continues to produce inequalities and prevents people with disabilities from actively participating in ordinary life.”

“A person with disabilities, in order to build himself or herself up, needs not only to exist but also to belong to a community,”

💗

True Inclusion in Sports

A great article about a high school student who is truly included: 

“Someone with a disability wants a job. A local business hires them. The media goes wild.

Someone with a disability wins homecoming king or queen. The media goes wild.

Someone with a disability is a manager, mascot, or token player on a team. A huge deal is made, awards are given and the media goes wild.

...But these stories do trouble me, because I see very low expectations. ...But the reality is that getting a job or being on a team should be the norm, not the news. 

...Because this is a real story of a young man who earned his spot as a kicker on the varsity team with his ability. There were no “staged plays” for him, or last-minute substitutions when the score showed a solid lead. He played often in some games, and less often in others — just like many other players. He was not only a solid player for his team, he actively encouraged his team and the crowds. He is a very real and integral part of his school. For all those reasons, he won Homecoming King — not because he has Down syndrome. Because he is the one and only Caden Cox. Someday I hope and believe this will be the norm. As of now, in December 2019, this is not the norm. But it certainly gives us a higher bar to aspire to.”

Ballet Moves

Well we wrapped our first session of Ballet Moves with Cincinnati Ballet this past Saturday. It was such a great program - Hannah really enjoyed it. I enjoyed seeing the kids & parents every week, too!

We may try a new dance/tumble class in Loveland starting in January; closer to home : ) 

2019-20 School Photos

Here they are!!

Making Google Better

The future is voice-first, but not for everyone. Because of their unique speech patterns, voice technology doesn’t always understand people with Down syndrome. Project Understood is ensuring the future of voice technology includes people with Down syndrome. The Canadian Down Syndrome Society is working with Google to collect voice samples from the adult Down syndrome community to create a database that can help train Google's technology to better understand people with Down syndrome. The more voice samples we have, the more likely Google will be able to eventually improve speech recognition for everyone.

Project Understood

Teaching Google to understand people with Down syndrome, one voice at a time. 

Halloween 2019

Nora was “Mal,” from Disney’s The Descendants and Hannah was her favorite song, Baby Shark : ) 

The weather was typical Ohio: plummeted to 37˚ and blustery. 

Tim ventured out with the girls next door. Hannah received one piece of candy and amid the barking dogs and cold, said “Home!” Thankfully the neighbors were meeting up to trick-or-treat and took Nora with them. 

We didn’t see Nora until 7pm when she came to dump her bucket, put on a winter coat and go back out - !! She came home at 7:30pm with another full bucket. This child used to last five houses the past five years. We are ruined! Now she knows the haul she can really get if she stays out! 

Haha!

Annual Farm Trip

Our annual trip to the local farm, Shaw Farm, was quite nice. Finally cooled off and we went at 9:30 on a Sunday when the crowd was low. 

We ran into the girls’ little friend, Ruby, from the past babysitter. 

We love our spooky hayride every year!

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.

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. 

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! 

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.

Organ Transplant Discrimination

Should Disability Affect Who Gets Organ Transplants?

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

Two Decades with Friends

I’ve had two really good college friends since about sophomore year at UC (DAAP); 1999. Both of their spouses were dating them at the time. Once we all graduated, we all stuck in Cincinnati and made a point to get together every couple months or so ... it’s now 20 years later (!!!) and we still keep this up. I love it. 

Last Saturday the six of us went out - without children - for the first time since college. Mindblowing. 

My friends had suggested a tour at New Riff with Stephanie - I worked out everyone’s schedules and we made it work! A really neat tour with Stephanie and she let us hang out in the Sensory Room where we sampled the goods! 

Afterwards, we went to La Mexicana in Newport - crazy good authentic Mexican food. 

Tim and I were first to leave at 8:30pm - five hours gone with a first-time sitter! 

Such a fun evening!!

Hannah’s 1st Dance Class

A good friend in the Ds community wised me up to an amazing program put on by the Cincinnati Ballet. Ballet Moves is an inclusive dance/movement program for kids with specific needs. 

The kids are in classes with similar ages. Each child is paired with a physical therapy student - !!! How. Awesome. 

The first class was a little chaotic for Hannah; it’s her first organized class and with mirrored walls, well, she was more interested in watching herself than sitting in the group circle. The PT was super helpful and they understand it’s Hannah’s 1st time. 

I’m hopeful that with each week Hannah gets more comfortable and understands the group setting and participates : ) 

*Jack Barlow is a couple years older than Hannah and has already made quite an impression at the Cincinnati Ballet 💗

Age 5 Growing Pains

Man, we got too comfortable with Hannah’s behavior... 

Literally right after she turns 5, the school reports trickle in...

First were some concerns from her therapists: 

• Hannah was chewing her fingers which is new behavior – and is a health risk (germs)
• Hannah has been toe-walking – not great, we want her to have a typical gait

We were able to look into Hannah’s mouth and found that one of her missing incisors (#3 in the top row) was coming in finally - ouch! That may explain the finger chewing. 

Her therapists gave her a “chewy” – it’s super common for kids with sensory needs. The most common one looks like a silicone lego that kids chew on to keep busy. 

Hannah sort of uses it, but we need to make it more regular to see if she really needs it or it’s a temporary “teething” need.

Then there were some reports of just plain ornery-ness; taking shoes off, throwing glasses off and darting out of the classroom. What the heck Hannah! I followed up with the best we can try; distraction, redirection and praise for good behavior. Reprimanding Hannah and reacting to negative behavior only reinforces the bad behavior. 

There was a 3rd report, but I don’t want to publish it for Hannah’s future privacy sake. Let’s just say it was more sensory exploration that should be done alone in her bedroom - sheesh. Actually quite common at this age for kids with Ds. I’m just not sure if she understand it’s not a public activity. 🙈

Hoping this phase passes quickly - !!

Hannah's 5th Birthday

Wow - blogging is becoming a past time - life is busy with work, two kids in school, and housekeeping all wrapped up in a bow!

Our Little Warrior turned 5 on September 1st. We had a large birthday party since we decided to chill out on the Buddy Walk this year; the two events always butt up to each other which overwhelms me. 

We had family and friends over. Probably the last BIG party for Hannah - I want to reduce to just a few friends next year 😀

I steered away from gifts - mainly b.c she has most of what she needs and doesn’t really take to toys – Hannah prefers playing with you or just being plain active. 

The appointments and procedures have slowed down as age five is on us. Therapies happen at school. Hannah is ultimately potty trained which I’m thrilled and proud of. 

She is mostly a happy kid but definitely gets frustrated when she doesn’t get what she wants - like any typical child. 

We love you Hannah Banana! 

2019-2020 School Year!

One more year with Hannah in her safe preschool bubble 😭
The girls are excited for 2nd grade and 3rd year of preschool!