This is all new to us...the blogging and the fighting for what is right for our son. Seemingly odd enough none of the news papers are biting on our story...so we will take it on...starting here, and maybe just maybe someone will become interested enough to help or to join our fight. We know we are not alone...
A little back history....we have a 12 year old son who was born prematurely at 31 weeks and 6 days. He spent a LONG time in the NICU, coming out of it with what we thought were little to no ill effects. We were wrong. At 18 months this boy did not walk or talk....he screamed or he laughed, but he did not talk. Allergies to both food and medicine were coming out of the woodwork faster than we could count. He was constantly sick, RSV, pneumonia, ear infections, sinus infections....if it was catchable, he caught it. I quit my job and started sewing from home because, though my employer had been gracious enough to allow me to bring my boy to my job, it was increasingly clear he needed much more attention, and my job also needed more attention. It was an easy transition that also allowed me to be more involved in my other boys schooling at the time too which was a good thing in the long run. At the ripe old age of three, we learned some heart wrenching news...my boy was labeled with Atypical Autism...but the Chief of Neuropsychiatry didn't thing that was all....so an MRI was ordered...and yet another tear into this momma's heart... My boy had suffered a stroke prior to being born and was diagnosed with PVL...periventricular leukomalacia...the brain damage that causes Cerebral Palsy. By three, we had been in speech therapy for over a year, so there was language, so there was hope.....you know that string you tie a knot at the end of and hang onto with dear life...that was my hope. More therapists and more therapists and specialist after specialist....and then we moved. We moved to where we were led to believe that we would be able to get the best services available for this ball of non-stop rollercoaster emotional filled little man.
We were wrong. Since our move, it has been nothing short of a battle to get the appropriate services. You see...this little man was also diagnosed at 4 with Early Onset Bi-Polar disorder. There is alot of debate on diagnosing children of this age with "this" disorder... My response...live with it and you KNOW. The school system fights us, the insurance companies fight us, and the therapists turn us away because he is in their words "too complex". Trust me, I know...I've lived with him...but they go to school for this...they should know how to help. We are not asking for a miracle cure....we are asking for someone to give us the right balance of medication and to help teach him the right tools so that he can somehow learn to cope in "normal" society.... but we have learned....budget cuts have all but taken away that chance. They are the reason that our son is sitting in a mental hospital at the moment thinking we don't want him. We do want him...but we all want to be safe...and we want him safe too. That won't happen at home because the programs have been ended that made it possible for a number of years to him to successfully live at home.
Oh how I could go on and on about how the budget cuts have hurt not only my son but thousands of other across this great state we live in....the legislators don't get it...they don't live it. My challenge...come live a day in my life....live a day in my son's life...then tell me it's still fair that all the programs that enabled him to live safely at home have been cut...
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