It usually starts with the doctors upon diagnosis.
We have to fight for their life and the decision to continue the pregnancy!
Crazy, but it happened to us.
Then we have to fight the first stares we get when we go out in public.
I usually take that battle by informing the clueless stares and pointing fingers.
Educate the unknown.
When we applied for disability for Oliver, I never thought I would have to fight that.
Our first denial claimed that he was not disabled.
We appealed that with records showing that being born with spina bifida, hydrocephalus and clubbed feet which has caused paralysis does indeed fit the disability criteria.
Then we were hit with a second denial. “Although your son is disabled, it does not interfere with his daily life.” I quote that one, because it is my favorite.
Even though Oliver was only 9 months at the time of that denial, how could someone who does not know our daily life claim his disability does not interfere with it.
They are not there every three hours when I have to cath my son because his paralysis affects his bowel and bladder.
They did not understand that when I appealed the second denial, Oliver was now 14 months and still unable to crawl or walk.
Oliver was three months when we first applied for disability and was 20 months when I finally got a hearing for him.
The next battle within this war, came with finding a representative.
I argued with myself that I really did not need one, and after failing to find someone who would represent an infant, I decided it was the only way to go.
I told the judge I believed and felt fully confident in my ability to explain all his medical history as I was the one who took him to every single therapy and appointment.
The hearing proceeded the best way it could, and only addressed his medical issues and necessities.
One month later and I have finally received my letter that we are approved!
The approval was like a cake with extra yummy frosting, but the cherry on that cake came within the letter.
In just a couple of sentences the judge mentioned how great of a job I was doing for my son, and how the state failed to realize that my son indeed did have a disability that interfered with his life on a daily basis.
Hearing from someone else that could have turned us down that I have done a great job for my baby and fighting for him was almost just enough for me.
If only that was enough to help pay for his medical equipment and therapies, lol.
All in all, I am glad that I put in the fight for him and remained strong when I was almost knocked down twice.
Fighting for him, when he has yet to have a voice for himself is so important to me.
Whether we are advocating or fighting the system for our children - never give up hope!