Why I support Challengers - this one's personal
Lizzie was born on 3rd June 2000. A "normal" few months was followed by a period of regression, and Lizzie was formally diagnosed with Rett Syndrome in
February 2003. (see Rett Syndrome)
Lizzie will always be totally dependent on others for everything. Developmentally she is a toddler, with no speech or other communication skills,
and no ability to move any part of her body at will. She is doubly incontinent, and has worn a Spinal brace for Scoliosis from the age of two. She is a wheelchair user.
We discovered Challengers, a specialist play provider for children and young people with disabilities, in 2007 when Lizzie was still a petite and engaging
little 7 year old.
Lizzie loves to be engaged by bright, energetic and smiley people, and that's just what Challengers has - bright and lively young play-workers with a
"can-do" attitude and a fun approach.
Placing Lizzie at Challengers was a huge leap of faith. How could she express herself, when she could not speak? How would Challengers read her needs, or
cope with her Epileptic seizures?
Over time, staff grew to understand Lizzie's ways. Seizures increased and her health declined into 2009. In May that year Lizzie underwent a
Gastrostomy operation, for tube feeding directly into her stomach. Lizzie started to thrive again, and became a willing assistant for the new type of medical training her play-workers needed, enjoying the attention
from this new experience.
Respite for our family from 24 hour care was gratefully received, particularly as Lizzie grew up and gained weight. The Challengers team created more fun
opportunities for her. She experienced Wheelchair Abseiling at Runways End in Farnborough. Challengers did their own Risk Assessments for her, so her fun was safe.
Lizzie's complex health issues were changing, requiring emergency Oxygen supply with her at all times. Local Authority funding was agreed in early 2013,
and Lizzie was placed in her 1st out-of-county specialist Residential Placement in Devon in August 2013.
We missed Lizzie very much, and our regular support from Challengers. We booked for Lizzie to come home for a week of Challengers play-scheme activity in
Life doesn't always go according to plan- particularly for children with disabilities! A week before her planned home visit our Social Worker phoned,
telling us that her new care home had to close with immediate effect, and that Lizzie needed to be taken back home that same day. We were in a state of shock as we ferried her and all her possessions back to Hook
with no idea what to expect for Lizzie, and no idea how we would cope with this dramatic change of events.
Lizzies Social worker and the Challengers team stepped in. During the day Challengers found space for her at the holiday schemes with staff who knew
her well. This gave us time to catch up on sleep, as we were hands-on with her care overnight. This was a life-saver! We re-planned Lizzie's long-term future with her social worker, and in September 2014 Lizzie
moved to her Surrey residential placement.
In September 2016 Lizzie underwent Spinal Re-alignment surgery, gaining 5 inches in height. As a result of this she no longer wears a Spinal brace.
Lizzie will be 19 this year when her education ceases. She will need to move again to an appropriate adult care provision,
which may be in another area of the country, and geographically far from Challengers base in Surrey and Hampshire.
Challengers provision is a rare and precious play and respite service to families like ours. I
guess you have to experience it from a parent's point of view to fully appreciate just how much its continued presence means.