Friday, March 24, 2017

Too Many Videos!

I just can’t keep up with all the awesome videos I’ve seen this past WDSD! 

Down syndrome Journey

I can't get 15 seconds into this one without crying:

Born This Way - WDSD

Wednesday, March 22, 2017

Great News from SCOTUS

Some outstanding news on the heels of World Down syndrome Day.

Most of you probably didn’t know this case was in the Supreme Court if you don’t have a child with special needs in school. 

In Favor of Special Education Students

Our community is relieved - to say the least - that the SCOTUS unanimously [!] voted in favor for disability rights in education. Especially since the current nominee, Neil Gorsuch, currently in his confirmation hearing, historically has not agreed with this.

In 8 of 10 hearings he’s been involved, Gorsuch’s opinions lean towards limiting the school’s responsibility. 

Under Gorsuch’s opinion in Luke P., a school district complies with the law so long as they provide educational benefits that “must merely be ‘more than de minimis.’” i.e. provide those students with a bit more than nothing.

I’m grateful and pleased the current justices went against this nominee’s stances for simple civil rights. 

Neil Gorsuch

Some choice quotes from the ruling:

“But that child’s educational program must be appropriately ambitious in light of his circumstances, just as advancement from grade to grade is appropriately ambitious for most children in the regular classroom. The goals may differ, but every child should have the chance to meet challenging objectives. This standard is more demanding than the “merely more than de minimis” test applied by the Tenth Circuit.”

“It cannot be the case that the Act [IDEA] typically aims for grade-level advancement for children with disabilities who can be educated in the regular classroom, but is satisfied with barely more than de minimis progress for those who cannot. When all is said and done, a student offered an educational program providing “merely more than de minimis” progress from year to year can hardly be said to have been offered an education at all. For children with disabilities, receiving instruction that aims so low would be tantamount to “sitting idly . . . awaiting the time when they were old enough to ‘drop out.’” Rowley, 458 U. S., at 179
(some internal quotation marks omitted). The IDEA demands more.”


Glad to see some something positive in the news!




Tuesday, March 21, 2017

Happy World Down syndrome Day!

Many people celebrate with “crazy socks” because while they may be a mismatched set, they still serve the same purpose as a matching set. Celebrating uniqueness. I prefer to push the education and inclusion myself : ) 

- So wear your mismatched socks.
- Wear your blue & yellow - representative colors for Ds.
- Perform a random act of kindness - because despite differences, abilities & beliefs, we can all be kind to one another. 

Or as me a question! I love shedding light for those who may not know enough about our goofy gal with the designer genes : ) 


Monday, March 20, 2017

More WDSD Links

I can’t even keep up with all the videos and articles I want to share! 

The Mom who wants to shine a light on those with disabilities to be better represented in marketing:

Changing the Face of Beauty

I do understand why these prom stories can be bothersome [though this woman seems super bothered!]. It shouldn’t be “special” news when a typical kid asks a non-typical kid. 

The Problem with Those Prom Stories

It’s disturbing enough that the US rate of terminating pregnancies with a Ds diagnosis is close to 70%. But in Iceland between 2008-2012 it was 100%?! Just heartbreaking. Some countries just don’t seem accepting or willing to educate that this group of individuals are not broken, undesirable, and really are more like you than you realize. 

First and Foremost I Am

Please continue to educate yourself and those you meet! And ask questions! 

Friday, March 17, 2017

WDSD 2017

Another great video highlighting those with Down syndrome. 

Not Special Needs

I always think about that term, too. Really, Hannah’s needs aren’t “special.” She needs extra help compared to her typical peers. And beyond those therapies and interventions... really, her needs are just like yours and mine. 

Very interesting video!

Thursday, March 16, 2017

Ruby's Rainbow + 3/21 Pledge

I’ve mentioned before - raising a child with Down syndrome has come leaps and bounds than a decade or more ago. So many more resources and programs to help our kids develop and achieve milestones and goals like their typical peers. 

Ruby’s Rainbow is a nonprofit that provides post-secondary scholarships to 35 individuals a year who have Down syndrome. Because some individuals with Ds do want further education! They also want a good quality of life, independence, and meaningful relationships. 

Ruby's Rainbow 3/21 Pledge

I really like watching that video because it gives me a glimpse into what could be Hannah’s future. Seeing adults with Down syndrome wanting the same things we all did at that age. Living life after high school just like we did... maybe without the occasional party [!].

I’m extremely happy that my alum, University of Cincinnati, has its own TAP program [Transition & Access Program] for these adults to have an authentic college experience:

UC TAP Program

Here’s to bright futures!

Tuesday, March 14, 2017

Lately - March

Things seem to have been somewhat calm [?] recently. 

Tim and I ran the Bockfest 5K - about 30˚ and snowy. The night prior Nana and Papa took the girls so Tim and I were able to have another date night - wow! That’s like two in one month - thanks family! Since it was such a magical time, I went to Target by myself and thought a basket would control my urges. It did not. I still ended up spending $80. Doh!








We also went to our favorite local joint, MJ’s, and got some appetizers and beer flights. I tried Great Lakes Chillwave for the first time - a double IPA that was super smooth [and 9.4% ABV!] - yum! 




I ran the Heart Mini 5K this past Sunday - about 30˚ and dry. We have the World Down syndrome Day 5K in about two weeks. I’m hoping it’s a BIT warmer - ! I think next year I’ll just add in the West Chester Shamrock Shuffle 10K and round out my March : )




The appointments with Hannah have eased up a bit. Working on stairs, steps, slides and uneven surfaces.

Little girly got a new prescription and lenses - Daddy picked a more obvious pink this round. 

Hannah is trying to say more - cracker, or “kah-kuh,” is a fun one. She’s calling Ailo “boyee” because that’s what Daddy calls him. She’s following directions but also clearly disregarding when she wants. 






Zero progress on home damage. Not sure when the contractor will start because Champion will not fix the siding until the deck is fixed. Sweet. 

And a few more photos to round out the boring post:


Made Nora her own craft drawer.

Delicious!

Every now and then I get glimpses of myself. Case in point: meticulous lining up of Memory cards.


Thursday, March 9, 2017

Number 47

World Down syndrome Day is approaching - do you remember the day? You should! Three copies of the 21st chromosome - 3/21!

From our favorite local family advocates, a sweet and clever article from Paul Daugherty:

Number 47

Monday, February 20, 2017

Runner With Ds

According to a peer of mine who is a runner and has a daughter with Ds, Kayleigh Williamson isn't the first person with Ds to finish a half marathon. But she is for the Austin Half Marathon. 

Kayleigh Williamson to Run Austin Half Marathon

Kayleigh Williamson Finishes Half Marathon

[photos link in the article]

Maybe Hannah will follow her Mama’s footsteps one day? : )

Friday, February 17, 2017

Lately - February

Our past two months have been a bit stressful. It seems to be easing but I don’t want to jinx us!

Tim has been juggling insurance and contractors for the damage of the felled tree on our house. Then we were told an ash tree between us and the neighbor needed to come down - with this “climate change” weather, who knows if it’ll come down in a February thunderstorm. Additionally, a tree on the OTHER side of the house is shading the home TOO much so there’s a huge moss patch which is a big bad thing (moisture!). So those two jerks are a huge financial blow.

We’ve had at least three appointments every week since the beginning of the year - as well as registering two children for new schools - !

Hannah was not herself early January and we finally took her in to discover a double ear infection. Maybe a week after finishing her antibiotic,  she and Nora both started coughing - Hannah had a low grade fever for about a week and didn’t eat for three days - which is enough to send me into a tailspin. We had to cancel a handful of appointments including Hannah’s annual cardiology appointment which is now pushed to April. 


Sick toddler : (




I still haven’t kicked the cough and Tim isn’t feeling 100%. 

One interesting event: Nora’s first professional haircut! We have a local place that sells playsets and the showroom is a huge indoor placespace for kids - very cool. Also inside is a kids’ hair salon. A friend recommended it so we tried it out. 

It was... okay. The staff were a bit rough around the edges. I thought I smelled some cigarette smoke. The owner/manager [?] gentleman hovered around me a little too much for my comfort. The cut itself was okay - days later I found uneven pieces. Then Nora’s hair was sprayed with some... scent?? Like a dog who was at the groomers. The experience was a little bizarre, but Nora loved it. Not sure I can convince her to try other places...




Yup. “First Haircut” certificate - Age 5. Haha!


After feeling pressure from late December into February, Aunt Stephanie was super sweet and offered to watch the girls for a few hours so Tim and I could get out alone for a bit. It was wonderful! We tried a newer Asian place in Milford that was delicious, then hit 50 West Brewery - of course. We were home by 8:30 to put the girls to bed. 





Hannah’s therapies have been going well. The only struggle is self-feeding. It doesn’t matter what spoon, what dish we use - the girl just isn’t interested sometimes. She’s acting like a two-year-old. Just wants to fart around. So then I end up feeding her so she gains some weight. It’s a terrible game of balancing her own self-teaching and getting her to actually EAT. 

Saw Hannah’s ophthamologist - continued patching. I guess it’s better than surgery. She has a new prescription and probably needs fitted for new Miraflexes. 

Yesterday we saw ENT as a follow up from TWO ear infections ago to see if she’s still holding fluid. She certainly is. ENT and Cardiology will coordinate to do the ear tube insertion while she’s under anesthesia and also do her annual echo at the same time - ! It’ll be a long day, but better than going under twice. And minor!


Starting to learn to jump! Kids with low muscle tone also have low join awareness - i.e. need to LEARN to jump.

Practicing shallow steps.