When Aaron was first diagnosed, we were directed to our early intervention program called First Steps. I am very grateful for this organization. The coordinators and therapists were so kind, proactive, and thoughtful. They helped us navigate through a lot of paperwork and set Aaron up with PT(Physical Therapy) and OT(Occupational Therapy) almost immediately. He was only 5 weeks old and that was huge. But I still felt that something was missing and there was so much more to be investigated. One of the things with 1p36 is severely delayed mobility. You would think this is not much of a big deal as long as they eventually walk. The information we were given stated that walking would occur from three to eight years old. I don't recall any information about them ever crawling. Anyway, when I went to a 3 day seminar March 2009 by the
Family Hope Center called
"How to Help Your Child with Special Needs" I found out that creeping and crawling for babies is huge. Seventy-Five percent of brain growth happens in the first two years of life and most of it is accomplished by movement, crawling (comando style), and creeping (up on all fours). It seemed to me that this mobility delay is one of the direct causes of severe to profound cognitive delay. After literally hours of researching on-line, I found an old post from a message board in 2007. It was from a message board of mostly mothers of children with CP discussing and debating the different therapies that worked for their chilren. Why would I be looking up information about cerebral palsy when Aaron has 1p36? Well CP is a generic term for any condition involving a brain injury or neurological problem. One of the symptoms of Aarons genetic disorder is hypotonia or low muscle tone which is also a form of CP. 1p36 is still very new and there is not very much information about what therapies work best for his condition. So I figured that since CP has been around for sometime, maybe I could learn from other CP moms who have lots of experience with children with special needs. Anyway, after litterally months of research, I learned about
ABR-Advanced Bio-Mechanical Rehabilitation. Its quite difficult to explain in simple terms but I will do my best. Everyone has a weblike connective tissue that surrounds all of our organs, muscles, bones, etc call myofascia. It looks like this:
I'm not exactly sure why, but many children with CP or other neurological problems like genetic abnormalities, have myofascia that is lacking in volume, tone, and strength. This tissue is the foundation for everything and causes our muskoskeletal sytem, muscles, organs, etc to be in proper alignment and shape. This deficiency contributes to may distortions like high tone, low tone, dismorfic features, reflux, constipation, speech, and a lot of other things. We started this therapy at the end of April. Here we are during our second mandatory training.
Aaron has several other therapies, but right now this is the one that we spend the most time on. Its suggested that we do 21 hours a week and we strive for that unless he has an appointment. So far we have accomplished 154 manual hours and 351 machine hours. Its been quite a blessing because he has responded fairly quickly. His trunk strength has improved a lot which will help in sitting up and rolling over. I can't wait until the next training at the beginning of November because he will be evaluated and all of his improvements will be photographed and documented. Well that's all for now. Stay tuned for the adventures of Aaron with 1p36!
