Can early intervention of behavioral strategies change the lifetime trajectory of a child with Down syndrome? If it can change the trajectory of a child with Down syndrome, can it also change the trajectory of children with various developmental diagnosis? If the intervention is focused on engagement, modeling behavior, personal interaction with a trusted care giver (likely a parent) and consistent, can it change the dynamic of a family? If regulating behaviors through intentional play means regulating emotions, does this type of therapy have the potential to change the trajectory of relationships? If it increases cognitive, linguistic and social/emotional skills, does it have the power to change a child’s academic course? I believe it can and it does. I’ve seen the incredible impact this type of therapy has had on Mae. However, it’s not enough for Mae and a handful of peers to benefit. We have to make these therapies accessible and scalable. Guess what?!!! That’s exactly what we are doing!!
I’m beyond excited to raise money to support the expansion of the JASPER program at Boston Children’s Hospital. Five years ago, the Tapley Family Fund funded the pilot program for JASPER. Today, we’re taking it global!!! We’re doing with JASPER what we did with Mae’s Market - extending it beyond the reach of the Down Syndrome Program. JASPER is a behavior therapy that fosters self regulation, encourages desirable behavior and interactions, increases cognitive and language ability - all through play. As we all know, the way to child’s heart is through play.
Instead of going to BCH to receive this therapy by a provider, we are taking it into the child’s home. We are developing a platform to train the parent or caregiver, to empower them with the tools necessary to help their child thrive. We’re forming a support structure for parents so it’s sustainable. Because no matter how great the tools, without sustainability and ease of implementation, we are dead in the water. No parent needs another item on their “to do” list. They need real, practical skills that will enhance their family life, enhance their relationship with their child, enhance their child’s school experience and ultimately serve the whole community in which that child grows.
It’s hard enough to manage behavior with typically developing children. Add in the many layers that developmental delays can present and so many parents find themselves at a loss. Together, with the team at Boston Children’s Developmental Medicine and Brain Center, we aim to mitigate that feeling of overwhelm and provide real, transferable skills.
In our house, we treat the root cause. We get to the heart of the issue and we work from the inside out. It is a great honor and privilege to have a medical community that operates from the same mindset. Every penny we raise for this years walk will go towards taking JASPER into the homes of children across the developmental spectrum. The program is rooted in empowerment. The original program was designed for children 24-48 months old. Not only are we expanding our reach, we’re expanding the program to include children ages, 5, 6, 7 and hopefully beyond.
The need has never been greater. This pandemic continues to shine a spotlight on the grave inequities within education, medicine and developmental medicine. It has been my belief from the start of this pandemic that my children, who have been trauma free, who have moved to a farm and are in nature, in community and in school with their peers - that they will be the ones responsible for reaching back and extending a hand to their peers who have not had the same experience. This is the first step. Opening up resources, stepping into homes, recognizing a need, forming a plan, and empowering parents with tangible skills that with alter the trajectory of their child’s lives is the start of that reach back. Children who are able to self regulate, and engage with peers and adults are far more likely to lead meaningful, rich lives, paved with opportunity.
It is my great hope, that once again, you will join us on this mission. This community has changed the course of the Down Syndrome Program in the past six years since Mae arrived. Now we’re going to change the course of Developmental Medicine. You have my word that every penny goes to serve the greater good.
My heart continues to burst with your love and generosity. Thank you friends.
Love, Susie, Andrew, Drew, Mae & Ellie