"Mummy, I want to be a 'real boy'".
These words will resonate throughout my soul forever more. I knew the day would come when Stanley realised he was different but had not yet learnt to embrace it.
Stanley started school in September and is thriving, spurred on by his insatiable appetite for learning, questioning and analysing. Trouble is, his gift-like academic ability has opened the floodgates emotionally as far as his cerebral palsy is concerned. He has learnt he is different, is questioning why other children with his diagnosis are able to have surgery to help them walk but he can't (his CP wouldn't respond to SDR surgery) and is analysing his place within his peer group, family and society both now and in the future. Some of the things he says are truly heartbreaking: "Mummy, please let me have the walking operation" "My legs won't listen to me - make them listen!"
That said, he also shares some positive quips - "It's good I'm disabled, we can park in this big space!" and "Mummy, people love Wilbur (his wheelchair) I do too, I can go super fast!" It's this positivity we are so desperate to promote. It's so critical to him growing into a happy chap who will reach his potential (and then some!).
Stanley was diagnosed with cerebral palsy at 8 months old; since then the number one thing that has made a difference to Stanley is hydrotherapy. For the rest of the day he is like a different child both physically and emotionally. In the water he feels free, relaxed and empowered. He is able to perform physical actions he never has on land. The thought is that repeating these movements may in fact help him replicate them out of the water (Stanley has never even taken a step).
Aside from the therapy aspect of hydrotherapy, it also plays a big part in prevention of potential surgery, deformity and pain as he gets older. The warm water is proven to reduce the spasticity of his limbs. Currently his hips are 30% out of their sockets - a direct result of the high tone in his legs pulling in the wrong direction.
Perhaps unsurprisingly, NHS funding for therapy is scarce and so allocation of sessions to Stanley are few and far between. Therefore we are looking to utilise our garage turn it into Stanley's Hydro House - consisting of a small therapy pool, changing bed, hoist, toilet, shower and basin. The highly insulated room will become a haven for daily therapy for Stanley. We would also be delighted to share it with other extra special children we've met on this crazy ride.
The natural instinct of any mother is to help her child. As a special needs mummy this need is intensified and much time is used researching possible options to help your child in some way. Recently I came across this on cerebralpalsy.org:
Aqua therapy is one of the best environments for a child with cerebral palsy to improve physical functioning, especially if the child is not ambulatory. What sets aquatic therapy apart from traditional physical therapy is that the water – which in and of itself is known for restorative and detoxifying properties – provides buoyancy that makes aerobic and anaerobic exercises easy to perform effectively, and safely. Additionally, if the water is warm, it has a massage effect on muscles, joints and ligaments that often times are over-used and in pain.
The article goes on to add the benefits of hydrotherapy and further fuel our passion to make a pool at home a reality:
Improve physical function
Develop and maintaining physical control
Improve psychological outlook
Enhance self-concept and confidence
Increase independence and quality of life
We have to go a long way to raise the money needed to achieve the goal we've set ourselves BUT doing nothing in the face of not being eligible for surgery just isn't an option. Regular hydrotherapy is the next best thing and something we're determined to make happen!
If you are able to donate, even a little, to the cause, Stanley and other local disabled children would be beyond grateful.
Thank you for reading.
12th January 2017 Thrilled to say that the pool itself has now been bought, shipped and delivered at a cost of £15,955. Heartfelt thanks to all who helped us get this first purchase!
13th February 2017 Great news - deposit has been paid for the actual 'house' part of Stanley's Hydro House. We are using SIPS (structurally insulated panels) to build it. Once we have signed off the plans the panels will be fabricated in a factory ready for delivery to site.