Day Twenty-Two

Friends, Music & Mother Nature

Our dear friend Ashley has started joining us for lunch on Thursdays between PT & speech therapies. Ada loved Ashley singing for her today and later they shared a reciprocal musical conversation that moved Ashley to tears. Music is so healing and universal!

Ashley has also been sharing lessons about the Igbo language of her Nigerian descent.  I love learning about cultures and I feel like Ada’s fairy ways are like learning a foreign culture. As Ashley explained her sense of deep rooted culture that creates such strong family bonds it made me hope that as Ada’s family we represent and share her ways in a manner that allows her to feel just as strong of a sense of belonging & honor.
  On our way to pick up Willa we stopped quickly at our friend Jeanne Buckholtz- Lewis’s amazing spot, A Fare to Remember @Home to get some yummy food AND her beautiful brand of lovin! As she greeted us it made me think of an insight Ashley shared about w


hat makes true friends of ours so special. She said that they understand that to fit into our lives it must be on Ada’s terms and that is OK and not to be apologized for. That level of acceptance for a PMS fam like ours is everything!!
  After getting back home Ada spent a long while outside with one of our loving home health aides, Kristen Gulakowski.  As Ada let chickens out, ran around & swung she got to enjoy the view of woods, the crisp air, the warmth of the sun, and the singing birds. Nature provides such rich sensory experiences that sooth & enrich. #PMSF #PMSFAus #PMSFUK #foreverFriends#PhelanLucky #OneIn5Million #WorldofMae #ThisIsUs #ThisIsPMS #5k #treehuggers #hartwoodacres #PhelanMcDermidSyndrome #fairystrong #RideTheWave #KapowGrashow #protector #LeanOnMe #heartsong

Day Twenty-One

Last year on this date we announced details for our annual Festival. To decrease confusion, I’ve updated the post to include this years details.  If you are anywhere close to Pittsburgh Pennsylvania and you enjoy a peaceful, celebratory setting, surrounded by autumn beauty, please: JOIN US!


WOM Festival 10.6.18

World of Mae 5K & 1Mile FunRun Registration NOW open at

Celebrating the uniqueness in us ALL within an inclusive and naturally scenic atmosphere full of music and whimsy!  We’ve got great event shirts to purchase, free face painting, henna tattooing, interactive hula hooping, star wars friends, and more!

One of our most unique features are the live musicians playing wonderful tunes every half mile along each course.  Click these words to hear one of our Fairy Land Faves.

#PhelanLucky #OneIn5Million #WorldofMae #ThisIsUs #ThisIsPMS #5k#treehuggers #hartwoodacres #PhelanMcDermidSyndrome #fairystrong#RideTheWave #KapowGrashow #protector #LeanOnMe

Day Twenty

Willa, Eliana and Oona exemplify the beauty of growing up in the world of special needs. From day one, these siblings learn to translate between typical and non typical people.  They literally live in two different worlds and juggle it all with grace. They are bridges. They learn and teach true patience. They are protectors. They are insightful, thoughtful, and natural leaders. They are empathetic and realistic and wise beyond their years. They are forced to be creative and look at life through a unique lens full of possibility and hope. As they grow into adults they will be game changers for the world.

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#connectedness #PMSF #PMSFAus#PMSFUK #oona #skye
#PhelanLucky #OneIn5Million #WorldofMae #ThisIsUs #ThisIsPMS#sisterhood #PhelanMcDermidSyndrome #fairystrong #RideTheWave#KapowGrashow #protector #LeanOnMe #wilhelmina #bridge

Day Nineteen

Written March, 2017…

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Happy Spring!
People with Phelan McDermid have difficulty with gross motor from one moment to the next. One minute Ada’s body might be able to sprint and the next it is not able to stand or sit up. SHANK 3 is the compromised gene effected to have the diagnosis of PMS. Ada is missing the base of hers.
Some people with PMS are missing their entire SHANK 3 gene. Some people are missing their entire SHANK 3 and other genes within the 22nd chromosome. And to say that if you are missing just part so that means you have a “mild case” sounds rational BUT completely not the case. SHANK 3 is responsible for many aspects of functionality including speech, motor functioning and it also makes a protein that feeds brain synapsis. Because Ada’s body does not produce as much of this protein she exhausts easily since she’s working her butt off for so many functions that we take for granted that our body’s just do.
We also know that this effects Ada so that if someone is crying or if she hears a sound that makes her laugh we need to be extra careful cause she literally melts:) When she gets overwhelmed with emotion, her gross motor goes out the window and she wants to sprint around and jump jump jump like a bunny but she also flops her entire body back with no understanding of safety awareness. Needless to say its ALWAYS exciting and I’m convinced PMS parents turn into stealth ninjas!
PMS is also an umbrella diagnosis; as it is often the root cause of MANY other diagnoses such as: autism symptoms, hypotonia, CVI, pica, intellectual disabilities, g.i. complications, poor sleep, OCD tendencies, and epilepsie.  Living with just ONE of those diagnoies is challenging, so needless to say, PMS is a DAUNTING reality.
We must be very careful knowing the way Ada’s brain and body work and do not work since so many therapies are behavior based. IF Ada is able to do something one minute and the next minute she can’t it is not because she’s being “lazy” or “bad” or not a good listener or direction follower. IF Ada is with someone who works from a very behavioral standpoint Ada then gets very anxious and sad. Which really who wouldn’t if you are being pushed beyond what is appropriate?! This also is why repetition is so vital to Ada…to make up for the times the synapsis just don’t work.
People with PMS are amazing examples of patience, courage, determination and overall badassery:)
#benotdo #connectedness #PMSF #PMSFAus #PMSFUK #leanonme
#PhelanLucky #OneIn5Million #WorldofMae #ThisIsUs #ThisIsPMS#sisterhood #PhelanMcDermidSyndrome #fairystrong #RideTheWave#KapowGrashow #protector #LeanOnMe #tortoiseandhare

Day Eighteen

When Oona and I walked into Ada’s room to say good morning we found Jon and Ada laying side by side on the floor sweetly as if gazing up at the stars, sharing cool ideas. Moments like these, when joining Ada in her norm creates such meaningful connectedness…are ABSOLUTE MAGIC
So me and Oonsy joined them! I gave Oonsy to Jon and laid next to Ada on the other side. Ada soon popped up in the excitment of hearing Oona noises. She sat up still in floppy morning grogginess that because of hypotonia lasts all day long everyday. People ask her ALL the time if she’s tired but it’s just her reality and I truly believe she needs this down time in order to have the strong bursts she’s now capable of.
So we read Ada’s cues…we sit with her, and flow WITH her and listen for ways to connect. Ada’s music therapist calls this “cuddle talk”.  I mimic sounds she makes, I respond with the same sounds then after some reciprocal repetition the sound morphs and we turn it into a little ditty. It sounds like she says the “b” sound so I ask her if she wants to read the bear book sitting close by. We tap together and sing “bear bear bear, I give a care…it’s fun to share”…changing my tone and using just plain silliness but slow and gentle and always listening for her to direct and shape my moves and decisions in a peaceful and respectful way. This is fairy talk. This is the alternate world she creates IF you give her the time and patience and build a strong heart foundation. We continued to read sing and stay connected for about 45mins…while Willa and Oona had their own sweet parallel reading time together. Willa beefed us up with 5 more books as Ada helped turn pages and remained very engaged. There wasn’t one moment of even feeling like I might need to redirect or keep her attention. With Ada you learn that by walking into an experience completely free of expectation and control you become vulnerable and open to just being and sharing and feeling truly connected. I walked in and hit the floor thinking I just want her to feel loved and heard and to know that she has a legit play partner in me. This is why I was “successful.”

She is a teacher with wisdom so deep it’s foreign to most humans.
Btw mamas getting a shower then it’s official day 18 photo taking time!
#benotdo #connectedness #read5books #bookworm
#PhelanLucky #OneIn5Million #WorldofMae #ThisIsUs #ThisIsPMS#sisterhood #PhelanMcDermidSyndrome #fairystrong #RideTheWave#KapowGrashow #protector #LeanOnMe #happiness


I’m sporting our tortoise & hare World of Mae 5k shirts…
Because we celebrate EVERY pace!
#benotdo #connectedness #PMSF #PMSFAus #PMSFUK
#PhelanLucky #OneIn5Million #WorldofMae #ThisIsUs #ThisIsPMS#sisterhood #PhelanMcDermidSyndrome #fairystrong #RideTheWave#KapowGrashow #protector #LeanOnMe #tortoiseandhare