Today we’d like to introduce you to Lulu Jones.
Hi Lulu, please kick things off for us with an introduction to yourself and your story.
19 years ago my son Sam was born. At the time we did not know he had Down Syndrome- he was early and only weighed 2 1/2 pounds. On day 5 we learned he had Down Syndrome and multiple heart defects. We were thrust into this new world of raising a child with a developmental disability. We learned early that therapies were the way to support him to be the most amazing individual he can be- but we also learned it wasn’t easy. Wait lists, insurance challenges were among the greatest challenges we faced. We did find therapies, we did figure out how to make it work and how to pay for it. Along the way I wanted to create a program that could help other families on similar journeys- to create a space where they are welcomed and where their kids are valued and families can make connections with other families as their children have amazing professionals work with them to achieve the next milestone. So in 2016 I formed our non-profit called Texas Institute of Developmental Pediatrics dba Sam’s Adventure Camp. We started with kids ages 1-4 years old. Kids rotate through occupational therapy, physical therapy, speech therapy and music therapy and work on a set of 3 goals. My little passion project then started to grow and grow and now we serve children 1-19 yrs old in several intense therapy programs. Our older kids 5-19 enjoy a week down in Galveston as part of our family retreat model. Parents and caregivers get an opportunity to have respite as their kids participate in our program. We add Recreational therapy and Aqua therapy to the model. Other groups enjoy a therapy on the go model and get to put some of their skills to work as they navigate the community with support of a therapy team. This summer we will serve 42 families!! We will also be celebrating our 10th year of being an organization!! In addition we host community events for all families living with individuals who have a disability- so movie nights, game nights, pool parties, dance parties- we love to come together with this community we have built to enjoy our local communities and all they have to offer.
Would you say it’s been a smooth road, and if not what are some of the biggest challenges you’ve faced along the way?
It has not been a smooth road at all. When we started Sam’s Adventure Camp we had no idea about the true adventure of starting and running a successful organization. Fundraising is one of our biggest challenges- its a never ending task, but we need to raise the funds to run the programs- pay our therapist, pay for the facilities, pay for the activities and supplies. Hiring is always a challenge as we are not a full time position so we are looking for contract therapists…not easy. Grant writing is also a challenge.
Thanks – so what else should our readers know about your work and what you’re currently focused on?
My work is my passion. Raising children with developmental disabilities is an uncharted journey like no other. There are challenges ,but so many rewards. Supporting them to achieve goals and seeing them accomplish them is an awesome thing to witness. And now with our organization we can be the hope and the support for other families on similar journeys. Although our kids may have different diagnosis there have similar paths.
I work hard to bring a great program to our families- this means every day I am out there doing something for the program- fundraising, networking so I can fundraise better:) , presenting and sharing our program to therapists, young pre professional health students, business owners. Running a non-profit is not for the weak. But- when you see the impact you are making it ignites the passion and I just want to keep going to do the best I can for all of our families.
I am proud that we are celebrating 10 years of our program and the number of families and individuals we have served. The number of relationships and connections we have created to build our own little community and that families look forward to joining our events and programs. I am also so very proud of Sam and all of the achievements he has made and all of the obstacles he has overcome. He is our joy and keeps us on our toes.
What are your plans for the future?
Always planning for the future!! We plan to keep going strong- we want to grow a little more, but we are mindful of keeping our programs intimate where we know our families and their stories. Our hope is to be able to add staff to help with all of the things- we want to continue to bring more community events and bring all our communities together to grow an inclusive network all while having fun and enjoying the amazing abilities of our individuals with disabilities and their families. We also plan to keep sharing our story and the stories of our families to bring awareness and to celebrate the accomplishments.
Pricing:
- our intense therapy programs are tuition based, but we do offer scholarships and have partnerships with a few organizations for grants.
Contact Info:
- Website: https://www.samsadventurecamp.org
- Instagram: https://www.instagram.com/samsadventurecamp/
- Facebook: https://www.facebook.com/samsadventurecamp
Image Credits
Photo’s by Sam’s Adventure Camp
