The first question I’m always asked about ABR is: “Where does ABR fit into the therapy constellation for Cerebral Palsy?”
I have come up with a basic therapy map that helps create context for the uninitiated. I remember the hours I spent scouring the internet for “answers” just after Emma was diagnosed. It was awful! All my searches led me to websites that falsely lured me with supposed information on Cerebral Palsy. When I clicked to read more I was dismayed to find it was only a legal practice or organisation offering superficial information, and really looking to gain me as a client to sue the doctor for negligence.
My own paediatrician was of no help, because doctors are not therapists and they only learn and support what is “approved” through the allopathic medical system. I know of few colleagues who have actually spent adequate time with therapists and have tried out the therapy on themselves to see what it’s all about.
And if you turn to alternative therapies, they can only tell you about themselves and not about how they relate or compare to other therapies. I felt confused, with no idea where to begin. So, initially, I leaned on my doctor. As a fellow doctor, it felt like sturdy ground. But the progress was slow … too slow. I grew so frustrated that I started unpacking the medical literature myself, and this gave me the confidence to start experimenting with the therapy options available. I used my existing medical knowledge to help plan treatment combinations, see what worked or didn’t, and then plan the next steps.
Anyone who has been in this situation knows that medical insurance doesn’t fully cover CP treatments. A fellow mother of child with CP said to me the other day: “I have to pay for everything that actually helps my child.” So, we have to be clever with our approach to therapy and also with how we use our time. So, here’s a map; that I’ve created. It really helped give me perspective and showed me which approach I could afford.
Many therapies claim to do many things, but that is not always the truth. I find that one type of therapy per group is a good minimum approach. In our Case ABR counts for two groups and we add Nutrition and Diet too.
I divide therapy into three rough categories:
Those that aim to teach the brain new pathways
Those that change the structure, and
Those that support development and change (and thereby the other therapies) through the metabolism and biochemical pathways.
There are MANY things that can train the brain. How these are different and which one to do is a contentious topic. It has not been well researched and it’s therefore a hard field to negotiate. I do not claim to have tried all of these out. Typically one can at least get NDT/Bobath covered by health insurance and we did this for two years with little success. But we also made no progress with Conductive Education during the same time period. It was only after focussing on ABR for two years that Emma started in a school for Conductive Education and here she was able to learn new things because her structure was then more developed.
So here’s what I did: I started globally, by addressing Emma’s structure with ABR. At the same time, I gave metabolic support through optimised nutrition and ABR (I promise I’ll say more about this in a future post). This was my foundation, I wanted Emma to have something to build on. I only started training the brain (using Conductive Education) after the other blocks were in place and I could see progress.
My experience has shown me that it’s pointless investing time and money into brain targeting therapies if you are dealing with a severely affected structure and compromised metabolism. And, in case you are wondering, the structure is very much affected by Cerebral Palsy.
We know Botulinum toxin and surgery have their own issues and side effects, and so, up to now, they were never options for my child.
As a parent, I wanted non-invasive methods that targeted the whole structure as a first line treatment.In addition, severely affected kids, like Emma, who have no neck control or poor posture cannot be corrected surgically or with Botulinum toxin injections. So there wasn’t “really” a choice. ABR is the only structural changing therapy in this class designed with Cerebral Palsy in mind.
As we changed Emma’s structure, she changed as a person. It was as if we released her from a prison. She was more aware and focused. She was more interactive and expressive, she gained weight, she slept better and then also had significant motor gains. ABR changes the conditions of the tissue of the whole body (even the brain!) and this helps to energise the child.
Another major benefit was that all the other therapies I tried required a lot of effort and co-operation from her, which was exhausting. With ABR, Emma just lies down and relaxes while I do all the work. I found it amazing that real progress came when Emma did nothing, she lay there peaceful and content. This was a world away from all those years of doing which resulted in failure after failure.