We know it’s not polite to talk money. But we like to keep things real here at the Center for Family Involvement.
Raising a child with a disability is expensive.
It doesn’t really matter what your income is. Even those making what’s considered “good money” can struggle to get their child everything that they need. Medical expenses, tutoring, speech therapy, occupational therapy, physical therapy, “fill-in-the-blank” therapy, adaptive lessons, adaptive equipment, communication devices, special apps, weighted blankets, yogibos, the list goes on and on.
That’s why the Co-Director of the CFI, Flip Grey, wanted to share how she has worked to leverage funds for her daughter to not only get a bike, but learn how to ride it as well.
Flip utilized IFSP funds to pay for a week long iCan Bike session for her 16-year-old daughter Ciara. Ciara has been on the waiting list for the DD waiver for about 8 years. For those not familiar, the Individual and Family Support Program (IFSP) assists individuals with development disabilities and their families with accessing person-centered and family-centered resources, supports, services, and other assistance. The application process opens up annually. Individuals on a waiver waiting list can apply for up to $1000 to use at their discretion within the parameters laid out by the state.
iCan Shine is an international non profit organization that operates 5 day “iCan” programs across the United States and in Canada. iCan Shine focuses on dancing, swimming, and biking. This session of iCan Bike cost $150, which Flip paid for with Ciara’s IFSP budget.
During the week of iCan Bike camp, Flip and Ciara visited a local bike shop where Ciara chose a pink cruiser bike. While the order was being placed, the owner made a call to a friend and frequent customer of the bike shop who works at the local Community Services Board. This phone call led to the CSB submitting a request to the county to cover the purchase of Ciara’s bike.
Both Ciara and Flip were ecstatic to participate in the camp. Flip documented Ciara’s progress on Facebook. She wanted to share a summary of their experience.
“So excited! Ciara will be riding her very own cruiser bike by the end of the week. Pure determination. Pure joy.”
“Ciara gets pedaling on a 2 wheel cruiser bike!!!”
“So many ups and downs. Victories happened with the struggle of challenge. Ciara is a speed racer!
She came in with expectations to ride a 2 wheel outside but the weather had something else in mind. Flexibility for the unexpected is hard for her. She told me how excited she was to ride outside today. She had set expectations.
Ciara’s Issue #1: The bike tech changed her practice bike from the one she rode the first 3 days to one with handle bars and seat like her cruiser on order. She was aware of the change and vocal about wanting her “blue bike” back.
Ciara’s Issue #2: The practice bike was still on a roller, not a 2 wheel.
Ciara’s Issue #3: She wasn’t outside while watching 2 other riders leave the gym for the track outside.
Ciara’s Issue #4: Severe storms swept through closing the outdoors before she had a chance and bringing thunder.
Ciara’s Issue #5: A crowded gym to navigate at high speed without brake control. Ciara took a tumble this session and got a minor scrape on her leg.
There was a lot going on today, yet she persevered all these obstacles – with protest.
She overcame despite the issues. We are going to need an Olympic distance speed runner to keep up with her.“
“Ciara’s progress and that of her fellow riders has been a pure joy to watch. Her bike is in the shop getting its final touches. Then we continue practicing so she is a confident rider and we can go for family rides.”
“Her customized bike is home and she’s out cruising whenever we have the chance.”