Joe was a gorgeous little boy with an insatiable appetite for life, and beautifully gentle nature. He was enthralled by every little detail that his environment gave him. The wind in his hair, the waves against his legs, messing around in dry leaves, just like many other children do too.
However, Joe was also severely autistic and his prognosis was not great. Just after he turned one, we were told Joe would be unlikely to walk or talk, or have the life of a ‘normal’ child. We were also advised to start applying for funds for a wheelchair.
As Joe ‘s parents, we refused to accept this and felt compelled to find another future for him. Diving headfirst into the mountain of confusing material that surrounds early intervention approaches for children with autism. We discovered an approach called Applied Behavioral Analysis (ABA), an approach which had delivered startlingly positive results for children like Joe. Unlike so many other countries including The US, ABA is not funded by the NHS or Local Education Authorities, it was clear we would somehow have to fund it ourselves. We pillaged our savings and borrowed every last penny we could to start and maintain this therapy.
Joe embarked on his ABA programme shortly before turning 2. He was at the time one of the youngest children in the UK on an ABA programme. He learnt to walk within the first month, and within six months he was starting to talk and use basic language appropriately. At this point we came close to losing everything including our home. We could no longer afford to sustain the ABA therapy ourselves. So we endeavoured to putting a legal case together, compiling compelling evidence proving the therapy was more than successful, and Joe was learning to do many of the things we were told he wouldn’t. The battle with our LEA (local education authority) was far tougher and brutal than we ever anticipated and dragged on and on. During which time we had to beg for financial help from anywhere we could. An experience I would wish on no family.
Meanwhile, Joe was singing songs, reciting nursery rhymes and stringing words together into sentences. His personality was developing and he was cheeky, clever and had a wicked sense of humor. He actively sought out attention rather than preferring to isolate himself.
Joe eventually began a slow integration into a local mainstream school, dividing his therapy time between the home and the school environment. He settled in to school well and had great ‘neuro-typical ‘ friends. Another scenario we were told would never happen for Joe.
Our beautiful son Joe Willem Noakes passed away suddenly and unexpectedly in his sleep on the 6th April 2012, a week after we joyfully celebrated his 4th birthday.
Losing him was and will always be beyond devastating, something we may never come to terms with. However, Joe worked so incredibly hard to get where he did, and he loved every moment of his learning. His determination and strength was truly inspiring. We wanted to honour our little boy by putting our energy into helping other families who have found themselves in a similar situation but for financial reasons cannot access this therapy.
We have formed a charity that aims to support families in the South East with children between the ages of 2-5 and on the autistic spectrum, to enable them to access ABA.
ABA is not a therapy that should only be available to the privileged. We endeavour to raise the profile of ABA and to support the efforts to bring ABA into the mainstream.
Every child is entitled to reach their full potential.