“The future depends on what you do today.”
Gandhi
After years of research and struggle, we realised how much better Julian might have been, had the NHS done the ethical thing and given us what we asked for...all we wanted was information.
So here are the lists we compiled of everything they avoided telling us over the years ...
CP Treatment
Cerebral Palsy is a non-progressive condition. Non-progressive means that it does not get worse over time. Taking the definition of non-progressive at face value is not wise however. Just because CP is non-progressive does not mean that it should not be dealt with aggressively and constantly from the very beginning.
Since the beginning, we begged every medical professional to give us any information they could to help us help our son.
They told us to wait and see. And to avoid any commitment or expense, they offered us nothing but: physiotherapy, occupational therapy, speech therapy.
COMPLETELY UNACCEPTABLE!
All external CP treatments, including skin-contact methods (e.g., tape, garments) and activities that support core strength and mobility. Listed alphabetically.
All CP treatments involving physical activity, controlled exercise, or body manipulation. Listed alphabetically.
CP treatments that penetrate the skin or enter the body, such as oxygen therapy, acupuncture, or surgery. Listed alphabetically.
Only three things are needed in this lifelong battle with CP: dedication, determination, and information.
• Dedicate yourself to never becoming complacent in how you approach this viciously passive condition.
• Be determined to do everything possible to stay ahead of the condition.
• Always stay informed.
When it comes down to it, there is really nothing tricky about what needs to be done in the battle with CP. The goal should be driven by one simple mission: stay ahead of the condition. Help your child as he grows. Always try to push a little harder than you did yesterday, and constantly believe in the effort. It will most certainly lead to your child’s improved ability.
After stumbling face-first into the reality of a cerebral palsy diagnosis, with all the anxiety, uncertainty, and fear, it is impossible not to feel overwhelmed—immediately beaten. The strength needed to carry this weight and conquer the challenges of cerebral palsy often seems superhuman. But it isn’t.
The most important thing to do is to act early and decisively. Never allow anyone to say, “Let’s wait and see”—especially in the beginning. (Read about Neuroplasticity here)