Our daughter Cady was born with a genetic condition which has affected her development in all areas. We don’t know exactly what condition she has as the gene responsible hasn’t been identified yet. But at two months shy of two years of age, she couldn’t sit up by herself, crawl or pull up to stand. Walking seemed a long, long way off!
That’s when we first attended the Brainwave Centre, a charity which designs home therapy programmes based on the specific skills and challenges of each child. She spent two full days being assessed (in a fun way!) and working through the exercises that we would carry out with her at home. Within three weeks of that first visit, she was sitting up, and shortly after her second birthday she crawled for the first time. We continued to visit Brainwave two or three times a year and the therapists there would tweak her programme, recognising her achievements and adding new exercises to keep her moving forward.
At three years, three months and 19 days (not that I was counting!), she took her first independent steps. Today, at five years old, she walks primarily with a walker outdoors, but is walking more and more on her own at home and at school. She grows stronger and stronger every day, in no small part thanks to the Brainwave programme.
As her mobility has improved, we have turned our focus to other aspects of her development. Aside from her mobility challenges, she struggles with fine motor movements and has no verbal speech. She communicates via an alternative and augmentative communication (AAC) device which acts as her voice. She also has an intellectual disability, but it hasn’t stopped her learning her alphabet this year, and she loves counting and watching Sesame Street videos on YouTube!
We were very excited to learn about the Super Sensory 1km event at Parallel London, for several reasons. First of all, for the first time ever, Cady will be completing a walk by herself! We will be there to help guide her, but she’ll be doing the whole thing on her own two feet. The 1 kilometre distance is just about perfect for her – we hope she will be able to walk most of it with her walker and possibly even some of it on her own! Second, it gives us a chance to raise some money for Brainwave, which has been such an instrumental part of Cady’s journey so far. And third, she also has some sensory sensitivities associated with her condition, so the various sensory stations along the route will be great for her to explore and give her some short-term targets during the walk.
We have been out walking in our local parks to prepare for the event and we are very much looking forward to the day!