Ada Mae’s deep history with water…
On the eve of Ada’s birth, I felt the need to be in water. Throughout her pregnancy I had been drawn to water births and as she was about to join us Earthside we listened to her as I stayed in a constant flow of water. I will never be able to explain it as it was a force I did not experience with my other two births. I know now that this was the first time Ada clearly and very effectively found some sort of universal way to communicate and guide us. Ada has always been our mermaid, even before Wilhelmina proclaimed her as our fairy, and as time goes by she has consistently shown such joy and peace in water. At the first school we started, every time I set up the water table during our summer session, Ada climbed up into the table and submerged herself in the water while the other kids stood and played.
Over the years as Ada’s functionality has decreased and she has become more fragile in many ways, we find hope in the fact that water has ALWAYS proven to be therapeutic for her medical needs (reflux, constipation, motor planning, cognitive skills, muscle tone and strength, and proprioceptive and sensory sensitivities) as well as something that seems to nourish her soul. She tends to sing a TON while in the water and it’s also when we see her smile the most. Water provides the opportunity for Ada to just be a kid and PLAY WITH her sisters and friends WHILE getting the vital care and upkeep she desperately needs.
Why can’t Ada just go to an outdoor pool?
Ada is not able to sweat so she gets overheated very easily which causes her to faint and could also lead to seizures (which is common for people with Phelan-McDermid Syndrome). SHADE is our best friend! We haven’t been able to find an outdoor pool that is in the shade. Ada has vision issues and is very sensitive to the sunlight in that respect as well. This combination of sensitivities sends Ada into almost like a “skipping CD” mode (I’m showing my age!) in which she starts to pace, becomes stressed and acts like she needs to escape. Also an indoor pool setting would provide full year use which is necessary for consistent exercise necessary to fight her hypotonia and atrophy. We know what it is like for Ada to lose the ability to walk and even sit up…we want to be as proactive as possible to ensure that she remains as functional as possible for as much of her life as possible.
Why does Ada need therapeutic water temperatures?
Therapy pool temperatures range from 89-94. Click this link to read further about the extensive medical benefits this provides for Ada: https://guidedoc.com/aquatic-therapy-benefits
Why can’t we travel to an already existing therapy pool in our area?
Ada used to get water therapy through physical and occupational therapies covered by insurance. However, the medical model of insurance says that if a patient isn’t “progressing fast enough” than that therapy must not be working and they no longer cover it. Phelan-McDermid Syndrome makes it so that maintaining functionality is our version of success most of the time. If progress IS made, that is an added bonus. It is NOT due to a lack of hard work on Ada’s part…it’s just the reality of her abilities scientifically.
We also used to go to a Elderly Residence but the management decided to no longer welcome non residents.
We are welcome at a wonderful place that is a 40 minute drive from our home which is logistically tricky because we can not go unless Ada has had a bowel movement already that day and often she doesn’t go in time to line up with their open swim schedule. More often than not this becomes a Catch 22 situation in which Ada misses the opportunity to get a pool session in and then becomes even more constipated which then makes her reflux worse…it’s a fast and unpleasant domino effect that is really heartbreaking to see your child suffer through. This lack of consistency and frequency simply leaves her in the dust of getting what we know she clearly needs.
After years of trying to make various possibilities work, we are now at a pivotal moment in which we have the chance to truly create something very special. We are so touched by the manner in which people have popped out of the woodwork and rallied around us throughout Ada’s journey so far. We are excited for this new chapter and are thankful to all who will join us in making consistent water therapy here at home for Ada possible! We look forward to sharing more specific details in the coming months and please feel free to share our story far and wide. xoxoxo
Much Love, The Grashow Family