Saturday, April 29, 2017

Mother's Cheek

No, this isn’t a sweet sentiment. This is finally a “diagnosis” for my constant biting on the inside of my cheeks - nice, huh? The constant worry and in my case, added stress of work, taking a toll on the inside of my mouth with constant chewing on my inner cheeks: Mother’s Cheek. Glad I have a name for it now after over five year : )

Mother’s Cheek

Wednesday, April 12, 2017

“Special” Prom?

I follow Milford Schools on Facebook - a very handy way to see what’s happening in my girls’ soon-to-be district. 

They recently posted some photos from their first ever “special prom.” Quoting their post:

At this special prom, Milford High School students and staff created a true sense of community for students with disabilities from Milford and other local schools making our special guests feel both honored and accepted.



“Milford prides itself on providing our students with disabilities as many experiences as possible to learn to grow and become an active part of the community,” said Milford’s Director of Special Education, Jennie Berkley. “The Special Education Department is so very proud to both highlight our special students and help facilitate these lifelong memories, friendships and opportunities.””

This actually became a hot topic with a group of Moms who have children with Ds on Facebook. One particular Mom was quite upset because this was the opposite of inclusion and suggests that kids with special needs aren’t as welcome at the “regular” prom. Our kids should feel just as welcome at the annual prom. 

If my son wants to go to the Prom he can. If I want a special needs dance, then I will go to DSAGC or stepping stones etc.”

I want life as “normal” as possible. I and my kids need to explore the forest outside of these worlds to keep a balance (inclusion) with what exists outside of these organizations. I want them to be included, not identified then isolated based upon their diagnosis just to make them feel special.”

Other Moms were not as bothered by it: As much as we hope our kids are included in everything they might not be, so a night just for them to feel special seems alright to me.” 

Many thought our kids should feel they can attend both, or just one if they wanted - whichever made their child feel more comfortable.   Another Mom felt it’s okay for our kids to have a special night with their peers. 

I found it an interesting discussion... I can see both sides to the story. I will admit, my first reaction was, “Why do they need a separate dance? Shouldn’t the annual prom be inviting and inclusive to all students?”

A good point brought up is that our kids [with Ds] can still most likely make their own choices - which type of even they want to attend. That’s what makes this such a unique discussion - there are many other kids who have more difficult conditions who might not have this choice - the “special prom” might be the only choice. 

 I think our kids are on the fence. By that I mean they fit in with their peers fairly well and in things like the regular Prom, can pretty much hold their own. So why would they go to a special Prom. Because it's fun, not because it's their only alternative. ”

Regardless, it was an interesting conversation and one that my opinion may ebb and flow as Hannah grows up... 

And in Tim’s opinion everyone needs to stop being offended by everything : )

Tuesday, April 11, 2017

Photo Dump - Spring '17


Ragamuffin with no pants, dirty shirt and unique “shoes.”

Hannah’s April Fool to Nora - wearing her swimsuit.


This is unnecessary. It’s preschool. I refuse to pay for “graduation” photos. :: eyeroll ::

Successfully donated last Friday. Popping iron pills for a few days prior helped me out!
My blood flow is super fast [?] and the technician commented how I was faster than both the men before me.

Mini Christine vacuums under the couch cushions - YEESSSS!

Hannah rocking Aunt Molly’s overalls from the 80s!



My awesome sisters watched the girls while Tim and I had a date night dinner at 50 West.

Delicious beer flights! 

The cutest cutie pretending to ride her tricycle. Another physical challenge we’ll conquer.

 
Nora, Chicken. Chicken, Nora.

Wednesday, April 5, 2017

Baseball & Bedtime

Unlike a stereotypical Monday, I was in such a good mood yesterday - not only did I feel good, but it was Opening Day! 

For those not in Cincinnati, it’s a Big Deal. Historically, the Reds have always been the literal first game of the MLB season until a few years back [?] when we were pushed to the 4:10pm time slot, so now we are not. The Cincinnati Reds were also the sport’s first professional team. 


Opening Day @ The Banks

Loads of people take the day off to enjoy the parade and festivities. The parade always starts at Findlay Market and goes down Race Street - the street I worked on for 11 years at Landor and now 3 years at goDutch. And every year I look longingly out my office window wishing I could have a day out. 

My coworker Mike captured my FOMO. 

video


At least we have a festive lunch full of baseball staples - NOM! So much bread and nacho cheese : )

On top of feeling great, we’ve been getting more sleep! The transition to a full size mattress has helped keep Hannah asleep at night! Our theory was right. However - getting her to fall asleep is the real challenge. 

We aren’t ones to lay with our kids until they fall asleep - we believe our girls need to learn how to fall asleep on their own. However, with this transition, we are taking time to settle Hannah down. 

Phase One: have a walkabout in her room, play with curtains, dolls, etc. 
Phase Two: lie down and toss and turn until she sleepily starts babbling
Phase Three: hear her breathing slow and finally fall asleep

This process averages one hour but we’ve both had 1.5 hours of this process also. I think once we get into a groove, we need to start leaving her in there to figure out she needs to lie down without our assistance... We’ll see how long it takes us to get there - !


Monday, March 27, 2017

Walkin', Rollin' & Sleepin'

What a week!

Wednesday evening I was blindsided with aches and chills. Second time this “winter?” I missed work Thursday and Friday which I’m not sure has ever happened in my entire 15 year career?? Aches, chills, fever, fatigue. No stomach issues - thankfully? 

*I’d also worked from home the previous Friday because we woke up and the thermostat was at 58˚ - ! I stayed home for Recker & Boerger to arrive only to find out we simply needed to change the batteries in our thermostat - !! #adultlessons




Saturday AM I woke up with Hannah at 6:45am. I thought I was good... we *had* to get Hannah a mattress at IKEA. But the aches and fatigue were not leaving. I powered through [because that’s what women do] and we made it through the hell that is IKEA on a Saturday. 

I was pretty much laid out the rest of Saturday. It was over 70˚ outside and I was shivering from the chills/100˚ fever. Popped an ibuprofen which I love... once it kicked in I started overheating! Felt so much better - ! 

Woke up Sunday much better - good start for our annual World Down syndrome Day 5K! The past two years have hovered around 30˚ and dry. This year: 60˚ and rainy. I think most preferred this year’s weather! 






I chose not to run obviously because I was getting over the flu [?]. I didn’t mind, I enjoyed the time with my sisters. The rain held out until halfway, then it started sprinkling. Everyone was a champ and I smartly packed everyone extra clothes. 

Our afternoon was spent transitioning Hannah’s room! Out with the crib, in with a full mattress on the floor. Girlfriend rolls a lot at night, so we knew we’d start on the floor.




video


She did great! Lots of rolling, but no waking!

I, on the other hand, slept like garbage and woke at 3am with chills again - noooooo! I felt good Sunday - !? So this is probably Day Five of the flu... I will be going to see if Tamiflu is administered this late in the game : (


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!