Thursday, June 25, 2009
Amongst a group of professionals discussions came up regarding why so much funding is allocated to children with Autism Spectrum Disorders and not to children with physical disabilities. Many hypothesis's were mentioned but one stung me and left me speechless; parents with children with developmental disabilities need to 'face reality' there is no cure.
I do agree there is no cure; my daughter will always be disabled (I can type this but I am not even close to uttering these words) but I strongly believe there are things we can do to improve her outcome. I do believe in neuronal regeneration and that early intervention is the KEY in improving the quality of life for our children. I do believe that all the early intervention and stimulation for Elizabeth has repaired some of the damage to her brain caused by her prematurity. I do believe that through CME therapy we have enabled our daughter to walk without a walker. I do believe that Auditory Verbal Therapy has given Elizabeth the language she has today. I do believe that Therapeutic Riding has enabled Elizabeth to sit in a chair independently. I do believe that with aggressive sensory stimulation Elizabeth's oral/tactile aversions are minimal.
Despite all of Elizabeth's accomplishments I still get that 'look' when I tell a professional that we have just completed a block of CME therapy, that look is followed by a 'hmmm' and if I could climb in their brain I am sure there is talk of denial, wasting time and money. I think it is such a shame that when a parent asks what can I do for my child that the response is 'nothing, no amount of therapy will help' it is crushing and heartbreaking because as a parent we all need hope for our children.
As for facing reality we face Elizabeth's limitations daily and she gets older she is becoming aware of her limitations. We are not in denial of Elizabeth's disability we know we will not cure her but if we can make life for her just a bit easier it is worth it.