Sparky was 2 1/2 when I asked her physio therapist. “Of all the kids you know, whose Cerebral Palsy is the same severity as Sparky, how many ever walked?”
“Four” he said
He had been doing the job for thirty years. And considering how big case loads are, the odds were not good.
At that point we knew we had to take matters into our own hands. We dived onto the internet and joined yahoo groups of parents all around the globe who have children with Cerebral Palsy. We quickly learned that dissatisfaction with mainstream therapy was widespread. We listened carefully to the words of parents of older children.
What have you learned?
What would you do differently?
Parents have worked this much out:
Always get a second opinion
No one knows or cares about your child as much as you. Listen to the experts, but make your own decisions.
We climbed back into the driver’s seat of our child’s life. We commenced Advanced Biomechanical Rehabilitiation, a wonderful new therapy that turns the traditional understanding of Cerebral Palsy on its head.
We commenced the therapy, throwing a lot of money on the training and travel required. Despite having three 2 year olds to care for, we worked on Sparky’s little body for three hours a day.
After just three months her body was demonstrably changed. Her core strength was improved and her chest was less collapsed and more solid. Her breathing was deeper and she had gained weight.
Sparky’s therapists were ambivilant. We stopped asking their permission, and started telling them what we were doing, and inviting them to watch and learn. Eventually we cut ties with mainstream therapists altogether.
Physical therapy: we do it ourselves
Sparky can’t eat or drink with her mouth. She was fed formula through a tube. From the age of 18 months, Sparky experienced constant mucous secretions and usually vomited 4-8 times per day. She often vomited blood as her throat was raw, and always screamed in pain. Sparky had several respiratory infections each winter, often requiring hopitalisation, IV antibiotics and oxygen. She did not gain weight. Once she didn’t smile for 9 days straight. Not sure that we were able to either.
We had to rip up the vomit stained carpet. And we used towels, everywhere we went. Everything stank of the fake vanilla flavoured formula.
I asked the dietician if we could feed her real food instead of formula. She said
“You couldn’t possibly give her the right balance of nutrients”
Well, we do it for ourselves and our other children just fine.
I began reading more about nutrition and brain development and began to wonder whether formula was meeting all Sparky’s needs. We approached a total of six professionals before finding someone who agreed that maybe formula wasn’t good enough.
A full range of tests done revealed she was severely malnourished in several key areas, including nutrients crucial for brain development.
I began to realise that formula was only ever designed to sustain life; to keep people alive when in comas. It was never designed for children to THRIVE on, and certainly not to help their brains to CATCH UP! Sparky’s brain needed all the help it could get. I decided to never give her another drop of formula.
I bought a blender and began! I started feeding Sparky food, introducing foods one a at time, just like the process for a 6 month old baby. So I began with pumpkin and carrot, slowly adding rice, oats, fruit and veg and then meat, eggs fish, yoghurt and oils.
Within 2 days, Sparky stopped having all that mucous in her throat. Within 3 days she stopped vomiting.
I kicked myself so hard for putting her through two years of vomiting and pain, because I was too scared to “defy the experts.” I wish I had started earlier.
Healthy diet: we do it ourselves
What’s next? What area of Sparky’s life do we need to reclaim from experts who are at best ambivilant and at worst incompetant and discrimanatory? (With a few notable exceptions, for whom we are are very grateful)
I’m thinking…… education
After a number of frustrating years with institutionalised schooling options for Sparky, we have decided to do it ourselves. What will homeschooling look like for us? A whole new world of challenges and opportunities.
We are excited, prepared as always for hard work and on the look out for communities of like-minded families. Know anyone?
What do you find best to do yourself?