In doing research, I came across three books written by adults who have CP. They all had similar stories, such as being told that they were non-verbal or mentally delayed (and later learning that this is not true), experiencing the traumatizing and agonizing therapies that were attempted to correct their symptoms (forceful movements that resulted in severe pain, as well as some useless surgeries), and harsh bullying that they went through. They also shared what helped them most physically and emotionally in dealing some of the challenges with CP. Out of the three books, the one that drew me in the most is called, "Ways out of cerebral palsy during infancy and early childhood with the Feldenkrais Method," by Paul Doron Doroftei.
In his book, Mr. Doroftei shares the incredible testimonial of a method that helped him get out of a wheelchair, increase mobility and reduce most of his CP symptoms over many months and years. At age 60, he says that he now walks better than most people his age because of the techniques that he learned through the Feldenkrais method! He explains that, when someone has CP, it is only the brain that is damaged- not the muscles or nerves in the limbs. Various cells of the brain that would normally communicate slow and steady movements to the extremities are deadened (often through a trauma at the child's birth), which results in spastic, or competing, muscular movements. This is a result of opposing expanding and contracting muscular signals (parasitic messages) being sent at the same time- resulting in hypertonicity or paralysis in the majority of people with CP. (Yana's form, athetoid, sometimes does not have this spasticity, but, rather, flailing, repetitive movements.)
The Feldenkrais Method suggests that, if you can restore proper communication between the brain and these muscles/nerves, eliminating the parasitic messages that are being sent, then more fluid movement and muscle relaxation can occur. I think of it like the "Oregon Trail" game that we all played in elementary school. Imagine that an enormous boulder has suddenly blocked the trail that leads to your destination. You must blaze a new trail to get around this obstacle, which will likely forever be used by future travelers. Similarly, once these correct paths are created in the brain, they are available permanently!
I went on to research the Feldenkrais Method further and frequently came across a related method called the Anat Baniel Method (ABM). Anat Baniel was a student of Dr. Feldenkrais (now deceased) and adapted his technique to improve the outcomes of children and adults using this therapy. She uses it for autism, CP, chronic pain, and even improving flexibility for ballet dancers! The treatments can be very costly and time consuming (I have looked locally and it is $75 for a 45-minute session), but the movements are simple enough for parents to learn and apply to their own special needs kids. In fact, Mr. Doroftei recommends this!
I ordered the ABM training video for special needs kids and am excited to start learning the techniques in the coming weeks. They are very gentle movements and the children remain calm and relaxed throughout the process (some even fall asleep). There are numerous YouTube videos online that show this, but this one is my favorite- since the child has Yana's form of CP and begins walking after just 6 sessions!
As I researched more about therapies for CP, I came across another simple option for children with CP. This involves using a compression garment called the SPIO garment. The clinic in the video below uses this garment, along with a number of therapeutic techniques, and you can see amazing results in this girl (also with Athetoid CP) in just 5 days!
I hesitated to share the below picture of Yana before because it clearly shows drool, so it is not the most flattering picture of our sweet girl. Drooling occurs in about 30% of individuals with CP, indicating an inability to swallow the normal amount of saliva the body produces. I share this now because I have learned that the Feldenkrais Method can even be used to restore connections between the brain and the swallowing muscles, so that she can learn to swallow normally! (You can read about it in the book by Mr. Doroftei.)
With a combination of therapy, and lots of love and prayer, we are very hopeful about Yana's future. Plus, she will have her big brother, Payton, encouraging her along the way. (Payton was not walking at 8 years old and now runs and even likes to play soccer!)
We can't wait to see Yana freed from her stroller and out exploring the world around her! Please keep her and Payton in your prayers.