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.