Speaking Up for Masks

 After our never-ending COVID quarantine experience, I started to think how this would affect our school year. Back when numbers were low, most officials agreed masks could come off or be optional, including schools. Of course people always forget about the kids and the fact that they don’t have the option to be vaccinated yet. 

Our district announced prematurely that masks would be optional for school. Well, the Delta variant doesn’t care what you think and has come back full force and has a good amount of us worried. 

We still don’t know if our girls had COVID. Their antibody tests came back negative but my PCP told me those tests are not accurate at all. This whole pandemic is full of uncertainty. 

A group of parents organized ourselves to speak up for a masking mandate at our elementary schools (re: unvaccinated) at an emergency School Board meeting. 

And yes, kids may be fine if they contract the virus. But my child can’t wear a mask well due to her disabilities and features. So I’m being asked to toss my child into the deep end where other families don’t want to mask at school. No mask = quarantine. Mask = no quarantine. You see where I’m going? If Hannah is constantly exposed at school, her education is fractured and she’s already delayed as is. Not to mention the disruption quarantining is for working parents. 

We’ve seen countless states open up schools only to immediately mask up or go virtual after a week or two because so many students are infected.

So I got my speech ready and presented my case to our School Board. The meeting went on for four hours. It was standing room only and heated - mainly from parents who didn’t want their kids masked. 

Looking back now, it’s interesting how much of us “Pro Masking” parents used the words “we/us/our” and the “Parent Choice” parents used the words “me/my/I.” 

Our School Board voted 4-1 to mandate masks in the elementary schools. The 1 man who voted “No” is trying to save his voter base and spot on the Board for re-election  :: eyeball ::

The Board will revisit the subject every month to reassess. 

Even though our group “won,” we didn’t feel good - the amount of hate and vitriol from parents is absurd. One Board member asked for a police escort to her car, Board members have had threats against them and their families. Over wanting to keep kids in the classroom.

Advocating is hard work. 

COVID Ruins Everything

We went into this summer optimistic and feeling a little safer. Tim and I are fully vaccinated, infections had gone down. We signed the girls up for Summer Camp - finally some socializing! I was unhappy about the administration taking away any mask mandate, but we were willing to take the risk with summer camp since numbers were down. 

We had started hearing about the Delta variant in July and on a Wednesday, July 14th, Hannah had a really bad cold; stuffy, minor cough, a little snot. A typical Hannah cold. Tim also started getting a sore throat. When the weekend hit, Nora had a barky cough that moved to a wet cough. On Monday I woke up with a raging sore throat. Tim went into what seemed like a normal sinus infection for him. I was sniffly and congested. Then on Thursday, July 22nd I felt like I was hit by a bus of fatigue. I couldn't sit up. This fatigue was like nothing I’d had before and came out of the blue. I was thankfully WFH and thought “Geez, maybe I should get a COVID test?”

I found an Urgent Care with rapid tests. After waiting for 15 minutes after my swab, the doctor on call stood in the corner of the room and immediately asked if I was vaccinated. “Yes?” Her face fell and she tossed her papers in the air with a look of defeat: “I don’t know what to do anymore.” My test was positive. I left in shock then anger and called Tim and my Mom sobbing and angry. We have been doing everything to be a team player this entire pandemic and now we were infected. 

Tim tested hours after me and was also positive - all his symptoms had resided. 

We were quarantined for 10 days after our first symptoms. The next day we got the girls both rapid and PCR tests - both came back negative which baffled us. Was their viral load less b.c they were younger? Had we waited too long to test them? 

Unfortunately, because they tested negative, the girls’ quarantine of 10 days didn’t start until mine was over. The county health dept assumes that they can still catch it from me on my last day of quarantine. Our poor girls were home for 17 days. 

We had to cancel a large friend’s camping trip, a concert night, I had to cancel a Mom’s Night Out. It truly ruined the end of our summer. 

They went back to their summer camp on Monday August 9th. On Tuesday Aug 10th I got a call from Summer Camp that Hannah’s aide had tested positive and to come pick her up and quarantine her for another 10 days. 

I lost my shit. I screamed and cried and was inconsolable for an hour. My child needs socialization and it keeps getting yanked from her. Is this how school was going to go if she can’t wear a mask well? Just a constant stream of exposure quarantines that completely disrupt her education and our work days? (This will be a story for another time)

Hannah showed no signs and thankfully tested negative - this got her out of quarantine in 7 days instead of 10 and she was able to start on the 1st day of school. 

Hannah has been in quarantine for 24 days in the past month. We are tired of being home.

Annual Cardiology Appt

 Hannah had her annual checkup - she’s in good shape, so no changes for a year. However, she hasn’t gained any weight in a year 😬 Story of her life... So I need to figure out how to get her to eat more, or more calories.

We also did a 6-month follow up lab work from her low WBC back in fall. I saw her results and they are still low, even with some immunity exposure at summer camp - unless that takes a bit more time. We should be following up with Hematology this fall, so we’ll see if there are any steps to take.

An Unmet Need

Hi friends & family. I’d like to plant a seed.

AN UNMET NEED!

I have a good friend who has to pull her son from our summer camp because of his “bad” behavior. Here’s the thing. Kids with Down syndrome can act out when they aren’t being stimulated in a directed way, or if there isn’t enough structure. Some kids with DS want to play with others and when the other kids ignore, kids with DS can hit and push. My friend is frustrated because our summer camp doesn’t have educated employees who know how to maneuver this. Instead, kids with DS tend to be pushed out or never let into camps in the first place.

I know families who were straight up told their children with DS were a liability. I have countless Moms tell me this is an unmet need and no solutions. Every family seems to have a horrible story of exclusion from childcare, me included. 

It makes my heart ache how every year I see handfuls of families ask where they can take their child with disabilities for summer care for working parents. We are turned away because our kids aren’t potty trained. We are turned away because their behavior is “bad.” Spoiler alert: it’s not bad behavior, it’s an environment that isn’t quite structured enough or staff who aren’t educated on disabilities. We are turned away because “we just don’t have the staff to have an extra eye on your child.”

I’m tired of feeling sad and helpless for our kids. These aren’t special needs - these are human needs. My friends and I dream of a day where our kids aren’t turned away. We dream of organizations who have one-on-one attention for our kids. Maybe the staff gets college credit? Maybe the organization is funded by the state? Can our county train organizations and employees? I don’t know the answer, but I hope to start making steps towards truer inclusive childcare.

Thanks for coming to my TED Talk. I hope this seed can grow.

Filling Our Cups

 ...literally with beer and with friend time!

One of our closest friends works at Highbrain brewery in Silverton, OH. Great beers, food, and a sustainable business goal. They had a 2-year anniversary celebration this past weekend with popsicles, food, music, and games. We met up with a core group of friends and it was so nice to be together as a whole group. 

The following day, the same group got together again for one of the kids’ 9th birthday. The weather was drizzly at first then opened up. We spent five hours there - which was lovely since the kids were occupied with water activities and the adults could focus on catching up 💗

Recharging at Grammy & Grandpa’s

 We had a week gap between the end of school and the beginning of summer camp. Our school holds summer camp - 6:30am-6:30pm - which is so wonderful for working families. So I took the week off and we went to my parents for a couple days. The first day was beautiful - we went to a local Nature Center where they had animals in rehabilitation. Until birds starting cawing and Hannah saw the animals and noted right out of there. Grammy sat with Hannah until we enjoyed all the animals; coyote, owls, crows, fox, hawks and even a bald eagle! 

The Center was cute and gave something for the girls to explore. Then we hit Fulton Farms in Troy as well - it’s probably been decades since I’d been there - adorable market inside the barn.

Day 2 was super rainy and slow. We did hit my Mom’s favorite primitive decor store which was closing (retirement), the local five-and-dime where the girls picked out some toys, and then my Mom’s thrift store where Nora hit the jackpot! 

Making lemon scones w Grammy

Nora’s dime-store find

Nora’s sweet taco-cat find

End of School Year & Re-Entering

We have been ramping up our social dates lately - with family and friends - it’s been really great and needed on all fronts. 

We mostly stay outside because the kids aren’t vaccinated yet. I feel like the entire culture thinks we’re back to normal but forget the kids are not vaccinated yet. 25% of COVID cases are children now. 

 We’ve already had lots of water time at home. And Hannah got new glasses! Now she has a nose piece! She also lost another tooth!

We made it to the end of the school year - Hallelujah and Amen!! Weird emotions - I made sure to send thank yous to the teachers who taught our remote children. The kids made it through this odd and difficult year. 

We had an emotional thank you with our sitter/aide who helped Hannah with her school work all year. Hannah thrived thanks to the 1-on-1 attention. Hannah even attended Field Day with Miss Hannah and had a blast. 

Because Nora stuck with her assignments, nothing was late, and she agreed to working on her multiplication and reading chapter books, we got her an IKEA loft bed. She loves it and feels less scared at night now - I guess because she’s away from the “scary” things down low??

We hit a local Farm, Berries & Blooms - it was beautiful but Nora is having trouble being around crowds anymore. This started before the pandemic and just seems to be getting a touch harder. She doesn’t like being around people she doesn’t know. We are trying to nudge her out because she has to acclimate a bit - we can’t just stay home all the time. 

Nora also joined about five other kids in the neighborhood with some historic crafts - one Mom took two days to teach them how to make Possible Bags and Sun Sandal Moccasins! Nora even has a beaver pelt on her bag!