Day Twenty-Eight: School is Cool

At Ada’s school, children show they are present for the day by taking their photo card from the cubbies and placing it on the magnet wall. This week Ada grabbed her photo card all by herself and walked right across the room and placed it very close to the magnet wall! She’s working so hard at school and flourishing among friends.

So many fams with Phelan-McDermid face this constant balancing act to create/find a consistent place to belong that is a respectful, stimulating, safe and empowering setting considering the layers of challenges.  Another huge challenge is how fragile her body is and how hard she gets hit by germs.  If Ada has to go on an antibiotic is takes her body at least a few months to recover.  Regressions are common when she’s sick which can feel demoralizing as she works tooth and nail for every gain.  Within a group school setting we must be on high alert to prevent germ spreading as much as possible which is super tricky with little munchkins but like with everything, we just do the best we can:)

In this photo below Ada was out exploring the yard for the first time this spring with her schoolmates.

#PMSF #PMSFAus #PMSFUK #mamabear #DisabilityRights #studious 
#PhelanLucky #OneIn5Million #WorldofMae #ThisIsUs #ThisIsPMS#PhelanMcDermidSyndrome #fairystrong #RideTheWave #KapowGrashow#protectors #LeanOnMe #coolschool #fairyqueen

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