Thursday, January 16, 2020

Dentist Saga (Hannah)

I’m not sure I’ve continuously documented Hannah’s dental visits here, but they have been... disastrous. 

We’ve been going since she was three years old and every cleaning we end up restraining her and she loses her ever-loving mind, screaming. It’s awful. 

This week I even told the manager about Hannah’s phobia of the loud buzzing brush - they kindly adapted with a regular toothbrush with fluoride, and sat in my lap facing me, head back in the dentist’s lap (still a little weirded out by that) and I still ended up restraining her. 

I think she just doesn’t want people in her mouth - it’s a control issue. 

The current pediatric dentist is “fine.” Very nice, experienced dentist and staff... however, they are a bit older, so I’m not sure how savvy they are with a lot of kids who have sensory needs and what different strategies can be used. 

I will most likely look into other offices a bit further away who have been recommended and have various strategies for sensory issues; TVs, therapy dogs, etc. I’ve even heard of people laying on the floor for cleanings. 

At the very least we need to take baby steps and friendly visits to get Hannah to a comfortable level. I really don’t want my child to have a fear of the dentist. Nor need to be sedated. Hannah is already going to have several dental issues - small mouth, overcrowded teeth. The current dentist already mentioned expanding her palette. 

It makes me sad and anxious. 

In related news, dental students just now will be trained to care with those for special needs - !

The National Council on Disability helped push for the change in standards after publishing a report in 2017 showing that adults with developmental disabilities are at higher risk for poor oral health and face multiple barriers to accessing care, including a shortage of appropriately trained professionals.”

Something you never think about, huh?

Wednesday, January 15, 2020

TEDxCincinnati

TEDxCincinnati Women happened back in early December but the videos were just released - pretty great seeing women from Cincinnati tell their stories. Lots of great thought and fodder. 

One of my favorite speeches was from Jenn Jordan - she’s been the morning on-air talent for 102.9 for many many years. She also has a teenage son with autism, so I love that she has a public voice for not only autism, but kids with disabilities as a whole. 



To Love Under Any Condition

My other favorite speech was from Kara Ayers - some of my fellow DS Moms know her, and has a great speech for understanding ableism and parenting with a disability. 



Disabled Parenting in An Ableist World

I think Kara’s talk is eye-opening, even for me. 




Wednesday, December 18, 2019

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,”

💗

Monday, December 16, 2019

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 : ) 





Friday, November 15, 2019

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. 



Friday, November 1, 2019

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!