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.
9 comments:
Yes that comment does hurt and there is so much hope.
If you haven't read this book "The Brian that changes itself" by Norman Doidge the book talks about leading edge therapies and how the brain can respond with the kind of stimulation. The author is from UofT so there is a number of Canadian stories. The stories are all so hopefully and inspiring. I loved it. The author could have included a whole chapter on CME.
Ouch! That post took my breath away. I wonder why? Am I still looking for a cure?
Just because these guys have certain "letters" in front of their names, doesn't mean their right. Just keep doing what you have always done.
Elizabeth has come so far and it's not because of what they have done, it's what YOU have done.
What an amazing post. I couldn't agree more with every single thing you said.
You know I agree with everything you said here. I see Hallie's therapy in much the same way as you see Elizabeth's. Sharon and I have a mantra about wanting to help Hallie be the best possible Hallie she can be, and that hard work is paying off, as is yours with Elizabeth. One has to wonder what all of these so-called experts would do if they walked a mile (or a foot/meter) in our shoes.
Wow! That is a shocking comment by the team that is supposed to help Elizabeth. It is exactly this type of thinking that has me very scared about the health care changes we are embarking on in our nation. Will our children still receive aid from health care to pay for therapy if they consider the children "incurable?" It's a real fear I have and I suspect many of us have. I plan to discuss this with my representatives in Washington. I will even ask Joe Biden since he hails from our great state of DE (where I currently live).
As for why ASD has so much funding, I wonder if it is due to the great efforts of the parents pulling together and lobbying for the money/effort? I think those of us with children with developmental/physical delays have so many different challenges that perhaps we haven't pulled together enough to get the spotlight shone on our children? I'd love to hear your thoughts on this as it's just something I"ve been thinking about lately.
Kristina
Well said! I often feel Nathan is pushed to the side by the system. He maybe gets PT twice a month if we are lucky. Ridiculous! I guess they feel there isn't much else they can do for him.
I am hoping to get him into some other programs now that we are settled in the new house and things have calmed down a bit.
There is a lot to be said for expectations - if you set a goal for you and your child with the full
expectation that it will be met and the enthusiasm that touches others you make the job easier to reach. Forget about comparisons with other parents or kids. There is no future in it. Children and adults learn best in a loving,stress free (as much as possible)atmosphere.
When life is an adventure you are free to explore your surroundings and just soak it all in...
There is a lot to be said for expectations - if you set a goal for you and your child with the full
expectation that it will be met and the enthusiasm that touches others you make the job easier to reach. Forget about comparisons with other parents or kids. There is no future in it. Children and adults learn best in a loving,stress free (as much as possible)atmosphere.
When life is an adventure you are free to explore your surroundings and just soak it all in...
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