The inspiration for Out Our Front Door’s Adaptive Program was long time volunteer and board member Bradley Fisher’s daughter Lilia, who was born with an extremely rare genetic disease called GATAD2B-Associated Neuro-developmental Disorder, also known as Gand, which is a syndrome that causes intellectual disability, low muscle tone, fine and gross motor disabilities, as well as Childhood Apraxia of Speech, a rare speech disorder. Maybe not someone you would expect to ever ride a bike, much less become an adventurous bike tourer and camper, and a leader by example to others with disabilities.
Having a child with a disability or special needs obviously comes with its share of challenges, one of which has been inclusion. Most programs do not offer activities in which the family member with adaptive needs can participate with their typically developing family members and friends. Bradley and Lilia found such inclusion by taking part in Out Our Front Door’s Family Bike Camping Program in 2019. From those rides, the idea of building an OOFD Adaptive Program was born to continue to push our org towards more radical inclusivity.
With some delays due to Covid, we launched our first season of “Bike Camping For Everyone!” in 2021 in partnership with Adaptive Adventures. We worked with 9 families who had a child with a disability. Whole families participated, parents, siblings, in some cases extended family members, grandparents, etc. For many families, it was the first time they were able to participate in a high quality outdoor adventure all together. Some of our Facebook posts from the program show our three training rides (one, two, three and some fun from our partners with Adaptive Adventures), and our culminating bike overnight at South Shore Cultural Center.
In 2022, with a generous grant from the Skokie Community Foundation, we ran a week long bike camping program for teens who struggled with social isolation, loneliness and depression, often caused or exacerbated by the Pandemic. The group included teens both with and without disabilities. Our week culminated in a bike camping overnight from Skokie to Camp Dan Beard in Northbrook. We made lots of great memories. This photo album of the program is filled with gems and smiles and a glimpse at what a truly inclusive outdoor adventure program can look like..
There were some wonderful stories that came out of this program. Eli was one of our campers with special needs. His dad and grandma rode with us on Saturday for the first few miles from Emily Oaks in Skokie to the campsite.
Eli was an absolute beast on our adaptive tandem. There were points when his adult co-rider would lift his feet off the pedals, and Eli, who weighs less than 100 lbs, would pedal the whole, with him and his adult guide on it, by himself at about 15 miles an hour. He NEVER stopped pedaling. Even though he's minimally verbal, he would often sing on the bike and at camp as well. Here's a note from Eli's mother Becky about their experience:
"Youth Unbound Camp was the highlight of Eli's summer. He was so excited to be out riding bikes and hanging out at the nature center with his friends each day. This really opened our eyes to the possibility that bike riding for Eli could be so much more than just rides around our neighborhood. We are looking forward to growing this new hobby and will hopefully be going on a family bike camping event soon. We are so grateful Eli had the opportunity to participate in this camp and campout. Becky"
Eli has a medically complex disability, including multiple ports in his stomach. This campout was literally the first night he spent away from his family. His mom told us that even overnight visits with the grandparents happen at his home with the parents present. We were so happy that we could facilitate this experience for Eli and his family. Our guide Joseph, who served as Eli's ride buddy, is an experienced special education teacher and coach for Special Olympics and was instrumental in providing the necessary support to facilitate Eli's participation.
Thanks to our partnership with Working Bikes, we were able to provide another camp participant with a bike and an OOFD volunteer even donated an adaptive bike for another one of the participants.
Some families in our Adaptive Programs have continued to cycle and do other amazing things both with Out Our Front Door and on their own. Alexis and her dad Luke were part of the 2021 Adaptive Program, and the following year the whole family, including siblings, joined us on one of our family ride programs Bike Camping In The City. Alexis suffers from intractable epilepsy, and underwent a hemispherectomy to disconnect the part of the brain causing the seizures. Her seizures are better controlled now, and she’s doing amazingly well. She’s incredibly social and friendly. The operation caused weakness similar to a stroke on one side of her body. Later that summer, Alexis and Luke used one of our adaptive tandems to participate and complete the Chicago triathlon in the adaptive division.
These are just a few examples of the lives we’ve impacted through our program, and we’re looking forward to growing our program in the coming years. Of course, major thanks to the Skokie Community Foundation who provided the grant money to execute the program as well as thanks to the staff at Emily Oaks and all the volunteers at OOFD who made it happen. And biggest thanks of all to Bradley and Lilia Fisher for being the inspiration and impetus to make this amazing program happen!
And as OOFD continues to push the boundaries of what radical inclusion can look like in local bike adventures, we are building out the knowledge, policies, trainings and capacity to have all of our programs be set up to support riders with adaptive needs. In 2023, we plan to have more than 5 families with a member with adaptive needs join in on our Family Bike Camping trips. If you know a family that might be interested, please send them our way!
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