Friday, December 1, 2017

All The Latest on Hannah

Sleep Study

All kids with Ds are recommended to have a sleep study by age four to rule out sleep apnea. I can count at least five of just Hannah’s peers who have it / were on oxygen. Medical teams constantly ask if she’s a good sleeper (what does that entail?) and if she snores - not really. 

So we have an appointment on Dec 14th at the Upper Airway Clinic to get a look-over before scheduling the dreaded sleep study. The only saving grace is that Hannah is at the age she can be in a bed instead of a crib, so they may let us lay with her. 

The kids get all types of sensors glued to them and a nasal cannula put on. Shocking that it takes hours for these kids to fall asleep in a strange room with all this apparatus on them! :: sarcasm :: You’d think in 2017 they could invent a beanie with sensors or something of the like to take home and sleep in comfort. I digress... 


Monday Hannah had her regular bi-annual eye exam. We can cut down patching to every other day - woo hoo! Her prescription changed slightly and will be on our 3rd set of frames. Of course I’ll stick with pink because now it’s her signature look : )


I was nervous here. Kids with Ds can have delayed tooth eruption... but we’re past age three and still missing all canines and the bottom second teeth. 

I found a pediatric dentist in Milford that was recommended by other Moms in the Ds community - woo! They were all really great and examining her teeth went very well. Then came the actual cleaning - ugh. Hannah lost her mind and screamed the entire time - three of us were trying to soothe and restrain her while Dr. Kamp cleaned. He was fast and Hannah was fine seconds after the finished up - whew! 

Dr. Kamp did feel her canines which was good. He isn’t sure she even has her lower second teeth - ! Which he said could be beneficial if she has a crowded mouth - which is common for kids with Ds. 

So... nothing for now other than regular visits and good cleaning!

The arcade game at the dentist!


Yesterday our sitter told Tim that Hannah signed/said “potty” and actually went on the potty! Great news and makes me hopeful for the intensive training. Personally, if Hannah’s speech and potty-going are further ahead than her gross and fine motor skills, I’m okay with that - !

Neck X-ray

This is another “thing” that every child needs checked out. Kids with Ds are at an increased risk for atlantoaxial instability; excessive movement at the junction between C1 and C2 vertebrae, therefore would need corrected with surgery to prevent damage to the spinal cord - ! Sooooo hoping we have a clean xray when we do that - probably in early 2018. 

Thursday, November 30, 2017

Report Cards & School Photos

They came a while back and were very positive!

Hannah is progressing - speech is definitely her strength which I prefer. Being able to communicate I think is key to Hannah’s developing as a person. Though like a typical preschooler, she doesn’t always stay seated : ) 

She is getting better at stairs - so long as the rail is a bit lower. 

Nora’s report card was interesting. She is seen as a leader in her class. Nora also gets up from her seat but it’s because she finishes her work before everyone - ! So Mrs. Horner needs to re-direct Nora or have her help the other students. #proudmom

Mrs. Horner sent me these photos; during indoor recess, Nora decided to make sight words out of Legos - my girl!!

Also, I’m not sure school photos will get any better than this:

Wonder & Portraying the Disabled

I have not read the book, Wonder, nor will I likely see the the movie anytime soon. I watch four hours of TV tops, let alone get through a movie anymore! : ) Hopefully some day I will get to it!

From Rotten Tomatoes: Based on the New York Times bestseller, WONDER tells the inspiring and heartwarming story of August Pullman. Born with facial differences that, up until now, have prevented him from going to a mainstream school, Auggie becomes the most unlikely of heroes when he enters the local fifth grade. As his family, his new classmates, and the larger community all struggle to find their compassion and acceptance, Auggie's extraordinary journey will unite them all and prove you can't blend in when you were born to stand out.”

A local Mom, “Miggy,” (a well-known blogger in the special needs social media world) wrote up her thoughts on the movie. She has a daughter a bit older than Nora who has a limb difference. Her post cites a lot of disabled writers and their opinions on Hollywood’s (non)portrayal of the disabled. 

My Thoughts On Wonder

A big complaint I’ve read multiple times is that TV shows and movies don’t use actors who actually have the disability they portray. The show, Speechless, on ABC, nailed it; they have an actor who actually has Cerebral Palsy. “..shows that center characters with disabilities, feature actors with disabilities, and tell authentic and informed stories about disability are extremely rare.” 


In her summary, she feels a lot was cringe-worthy, but at least the subject of craniofacial difference is getting some awareness as well as a lesson in choosing kindness. 

if the disabled community were to write their own stories, are we ready to listen? A middle schooler with Cerebral Palsy tried to write a book about a disabled character, but she couldn't get it published because it wasn’t “sad enough. Hmmm. Do we want to hear the more nuanced, complicated stories about disabled lives? Or do we want to hear the same old “inspirational” stories over and over again, invoking a false empathy (in other words pity) so that we, the able-bodied majority, can continue to feel better about ourselves?

...Rather than holding the lens up to disabled characters like Auggie to see how they react to a world that treats them poorly and then calling them “brave” for not being filled with rage for all the ugliness thrown their way, let’s hold up the lens to the rest of the world that shows the lack of exposure to disabled bodies in the world around them (tv, books, media), the lack of education and therefore the lack compassion that leads to exclusion, ridicule and oppression...”

I think it’s a great read as someone who is able-bodied/typical! 

Tuesday, November 28, 2017

Breaking Boundaries - Miss Minnesota

This story was all over my news feed the past few days, so in case it doesn’t reach our friends and family, I wanted to share it: 

Mikayla Holmgren

Mikayla is the first person believed to be in any Miss America State pageant. She didn’t make it to the top 15, which isn’t even the point - she competed like any other typical contestant and sure did shine! 

I’d actually learned about Mikayla earlier this year when she received a scholarship through Ruby’s Rainbows - remember, the great organization that raises money to award to students with Ds who want further education? 

Ruby’s Rainbow - Mikayla Holmgren

Keep rocking Mikayla - break down those boundaries!

Thursday, November 16, 2017

Wednesday, November 8, 2017

Jeremy the Dud

Interesting plot for a movie!

Jeremy the Dud

“Jeremy the Dud is a comedy set in a world where everyone has a disability, and those that don't are treated with the same prejudice, stigma and condescending attitudes people with disabilities face in our own society. Jeremy (Nick Boshier - Soulmates, Bondi Hipsters, Trent from Punchy) is a dud, or “without specialty.” He has been living in assisted government housing his whole life after the death of his parents when he was young. Now, too old for assisted living, he is off to live with his Auntie and cousins and ready to make something of himself. The only trouble is the outside world isn't very accepting of “Duds.””

Wednesday, November 1, 2017

Halloween 2017

For a while Nora wanted to be Bode, the Rock Dog. Yeah, I know, you probably haven’t heard of Rock Dog. It’s cute.

I was a bit unsure, but was close to ordering a green beanie when she decided to swing over to Rapunzel. Cool, man. Just order two pieces off Amazon - done. Also two kids of the same gender means Hannah is recycled the Minnie Mouse costume! Woot!

Back in mid-October we’d actually gone to Sharon Woods (Haunted) Heritage Village with Nana & Papa and another family. It started fun and harmless. 

So excited to wear lipstick!

Then we came to the first house. Ghost Porch Lady didn’t communicate that we could choose our level of “scare.” And the creepy doll women in the house didn’t seem to think that if you have five year olds with you, you ought to take it down a notch. Heaven help us. 

Come ON woman! Do your JOB!
As soon as we stepped foot in - myself, Nana, Nora and friend - there was a loud slam and scream. The awful doll women creepily sang nursery rhymes, fell down, were dragged around, and were just generally scary, even for a grown woman like myself. 

Creepy doll-like women around the small house.

I shuffled us through as quickly as I could... at the end of the short hallway (which felt like an eternity) was a 7-foot white woman. I think it was a mannequin but didn’t want to look too long for fear she would spook me. It was something like this, only I think her face was veiled - I can’t remember, I was hurrying so fast!

As we exited, I looked behind me at Nana ushering poor Nora, who had a stone face like none I’ve ever seen on her. Poor thing was traumatized. Ruined the rest of the night for her - too afraid to do anything else other than paint her face. Her friend was chipper and had a delightful time - seemingly unfazed by the experience! Haha!


Halloween night was just okay. The tone was set by horrific traffic throughout the city. It took me 1.5 hours to get home (typically 35-ish). I arrived home with Hannah at 6pm, just as trick-or-treating started. It was a brisk 50˚ and I didn’t want to wrestle Hannah back into her Minnie costume, so I threw some cat ears on her. Nora didn’t want to put her Rapunzel hair on, so my kids didn’t really look “done up” and with all the scuttle, we didn’t get a photo. 

I was going to bring Hannah back since it was so cold, then Nora decided she was done, too. It was 6:30. I’m holding onto the fact my girls still think 4-5 houses is what trick-or-treat is all about!

Thankfully a friend whose son is also at preschool (and our sitter) captured some shots of Hannah!

It didn’t help that I was out all last week so just didn’t feel I had enough preparation to put effort into Halloween - maybe next year!

Friday, October 20, 2017

Pity vs Care & Concern

A blogger/advocate I’m fond of lives in the Cincy area and has three daughters, the middle happens to have a limb difference and uses a wheelchair to get around. 

I always enjoy her thought-filled posts. She highlights special needs families/individuals which I find very eye-opening. On social media today, she had a small blurb about pity versus care/concern:

Here’s the deal, pity may seem innocuous... and often times it is mistaken for empathy, but pity is actually quite harmful. Pity stems from judgment. Pity looks at someone else’s life and makes assumptions. ‘Oh, I feel bad for her, she’s in a wheelchair. That’s sad. Her life must be hard.’

Often pity is disguised as care and concern--in fact most people have the best of intentions and mean it in a really, really nice way. ‘Bless your heart. You are so BRAVE.’ People with disabilities don’t (necessarily) have a harder/worse/sadder life. And they are not brave for simply living life and being a part of the world. And when pity is placed on you week after week and year after year, it becomes a weight. Carrying the weight of pity is harder than having a disability, e.g. LIVING YOUR LIFE IN THE BODY YOU WERE GIVEN. 

And it’s not just the metaphorical weight of pity, because the repercussions of pity are real. Like when you’re afraid that pity will keep from being able to get a job. 

Today’s #specialneedsspotlight couple (my first couple interview ever!) Vin and Sara both talk about pity and their concerns as young, disabled adults about the enter the workforce. Vin says, ‘Pity is definitely becoming a big problem and concern for me as I enter the “real world” and begin my career in aviation. I’m really worried that when I’m working that people will not take me seriously and belittle me because of my disability. I’ve come into contact with people who pity me constantly, if I’m out at school or at the store, pretty much anywhere I go.’ I hope you guys take the time to read the spotlight today because it’s basically a two for 1 deal!”

Vin & Sarah

Wednesday, October 18, 2017

Disability Discrimination

It’s alive and it sucks. I have a friend who was quoted a higher rate for her daughter at a daycare for “special needs“ - this sweet girl did not need any extra care than another typical kid.

Another peer just this week was asked to discontinue swim lessons because the instructor had no special needs training... despite the boy’s father holding him the entire lesson. Thankfully the business acknowledged their mistake and were incredibly sorry.

And now, shame on you, United Airlines.... “had they bothered to ask, they would have learned that Sean is a very capable young man, and Eagle Scout, a graduate of the Mason LIFE program at George Mason University, an athlete, and an employee who lives on his own with roommates.” (link below)

If your business isn’t sure how to handle these situations, training DOES exist. DSAGC has an Outreach Coordinator who will come and train your staff on down syndrome and how it can positively affect you:

When I do presentations I try to tailor it a bit depending on the audience.  So if we’re talking to medical professionals I’m sure to talk about ways to give a sensitive diagnosis, with educators I may mix in classroom modifications for learning, or if it’s business owner and employees who are serving customers or clients with disabilities I will speak even more heavily about stigmas, avoiding assumptions, people-first language, etc. I’m always sure to share anecdotes about the children and adults I know through the DSAGC and what they are capable of.

Presentations typically cover these areas:

-        What the DSAGC does and how we support families
-        What IS Down syndrome
-        Common visible and invisible traits, strength and challenges
-        Common medical issues and how they may or may not influence interactions
-        Life expectancy and what people with Ds CAN do – learn, attend school, work,
          volunteer, vote, date, cook, live independently
-        Language, people-first language, what to say and NOT to say
-        Inclusion in many forms”

Mariclare Hulbert of DSAGC

Wednesday, October 11, 2017

Lately in Photos

Nothing too out of the ordinary lately. It’s been way to warm for mid-October in Cincinnati. Our A/C was turned BACK on on this weekend - booo. 

October is Down syndrome Awareness month, but I post so much Ds news and updates here, the pieces on social media are just redundant. I just hope people feel comfortable to ask questions - I’ll never stop educating! 

Hannah at her latest eye appointment. She looks so big!

Tim and I had a date night a few weeks ago thanks to my parents!
We ate at a local place then went to Target alone!

Little Peanut practicing her jumping! I love this face!!

Went to our local farm for pumpkins and a hayride!

Scary ooooooo!


Our good friend, the Nappy Wolf of Shaw Farms.

Laughed out loud at this while in (slow) traffic.

Nora has been “lonely” in her room and we finally agreed to let her sleep with Hannah. It’s actually been beneficial for us for the two weeks or so it’s been going on. We don’t stay with Hannah until she falls asleep. One of us gets a good extra hour to clean up or exercise. And Hannah has been sleeping through the night.Nora falls asleep first, then Hannah snuggles up beside - or ON - Nora and falls asleep. It’s very cute.