DAY Thirty: Out & About and Not So Much 

When Ada was little we went to plays, museums, restaurants…we were out and about a lot and loved it. As Ada’s needs change this aspect of our lives has also changed quite a bit. Logistical and sensory issues really make most outings quite tricky and sometimes just simply not enjoyable. So we try to create an oasis for Ada here at home and school to ensure that her comfortable spaces are challenging and full of richness. As we find ways to balance her sisters outings we again rely on our support staff to make scheduling possible. And relying on friends visiting and entering into Ada’s world in a gentle way unifies us as well.
Willa will start a new school next year so today was her transition visit…it was fantastic as was our fun outing afterwards. As Willa & Oona age and grow their worlds will get bigger in ways that Ada’s will not. But that’s why we will continue to cherish the depthful grounding, sense of calm and appreciation for genuine connection she creates. And we will facilitate each definition of happiness and fulfillment and respect the beauty in each.

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

DAY Twenty-Nine: Bangs for Ada

Chewing/mouthing are common with Phelan-McDermid and hair is a close and easy thing to grab and get in so we always need to be careful to have Ada’s hair out of her face. I often get a headache from ponytails so always having Ada’s hair tied up worries me that it maybe causing her discomfort. So today I decided to just start chopping!
Ada also really has a difficult time with the process of brushing/combing/fixing her hair so moving towards lower maintenance is always a good thing.
This photo isn’t great and I trimmed a bit more after I took this but I think she looks so grown up! The best part was is that it really seemed like she was looking at herself in her mirrors …checking out her new do! She expressed happiness with what she saw;)

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

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

Day Twenty-Seven: United Path of Friendship

I met the Carter’s when I first became a mom. Elizabeth’s youngest, Margret was the same age as my only at the time, Ada! I joined a moms group and while I often felt like I couldn’t relate to many of the mom convos, Elizabeth and I connected. Ada adored her girls and I loved how she acted like they were her pretend siblings;))) I have wonderful memories if baby Ada listening intently as Laura read to her long books…while the other babies zoomed and toddled around Ada was a very attentive and cuddly audience for big sis Laura;).
As the years go on and everybody gets so busy sometimes 6 months go by before texting or visiting or touching base BUT without fail we always pick right back up where we left off. With such an ease of deep friendship, these people show absolutely no hesitation in their comfort level with how to connect with Ada. Which means a ton because a lot of kids need prompting. During their visit they all stayed with Ada…if Ada left the room they went with her, Ada and Margret and Laura walked hand in hand, they held her up when she leaned on them with all her weight from a standing position, they did a musical performance and they just spent time simply enjoying each other’s company.
Since they met as babies Margret and Ada in many ways have developed very differently BUT their hearts remain on a united path.

#PMSF #PMSFAus #PMSFUK #mamabear #DisabilityRights
#PhelanLucky #OneIn5Million #WorldofMae #ThisIsUs #ThisIsPMS#PhelanMcDermidSyndrome #fairystrong #RideTheWave #KapowGrashow#protectors #LeanOnMe #cuddles #loveLanguage #hugTherapy #friendship

Day Twenty-Six: Affectionate Ada

Cuddle Bug…finding ways to connect figuratively & literally

Almost every school day Ada cuddles with her friend, Aubree’s mom, Christy Harvey-Warner😉 Ada meets her at the door and melts literally to the ground as Christy lovingly supports Ada. I love how Ada truly senses kindness with some sort of fairy radar;)

When Ada feels comfortable and wants to spend these close moments I share with the person that these actions seem to be part of her love language and that you really need to use your muscles to ensure safety cause girlfriend will literally throw herself on you. Ada’s music therapist calls this “cuddle talk”, her speech therapist calls it “hug therapy” it’s like a slow motion wrestle and before you know it, Ada’s got you pinned!

#PMSF #PMSFAus #PMSFUK #mamabear #DisabilityRights

#PhelanLucky #OneIn5Million #WorldofMae #ThisIsUs #ThisIsPMS #PhelanMcDermidSyndrome #fairystrong #RideTheWave #KapowGrashow #protectors #LeanOnMe #cuddles #loveLanguage #hugTherapy