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Wednesday, August 11, 2010

Never back a mother into a corner

I usually keep my mouth shut during political conversations among friends and family. Everyone is entitled to their own opinion, even if they do not have all the facts. I will more often than not keep my mouth shut, unless it is directed at me or my children. I am a passionate advocate for Sensory Processing Disorder and Tourette Syndrome as they have invaded and settled into my life through my children. These are the two things I am most vocal about when not even prompted.

The last two weeks have ignited a fire in me that I have not known before. It's taken years to get diagnosis for DW and we are just starting to get some help for JD's issues. I finally felt like there was hope for my boys, we were getting somewhere.

I know that there are differing opinions on medicaid and why you or your children should be on it but, when you've a child with special needs who requires loads of different doctors, different meds that can run thousands of dollars a month as well as physical, occupational and/or speech therapy that can also run thousands of dollars, you really end up with little or no choice.


For the first time in ages, I finally felt like my boys were getting the help they needed. JD was starting to talk more, make more noises, attempt words. The SLPs think he might have Childhood Apraxia of Speech. Which takes several weeks, sometimes months of visits to figure out.

DW was getting OT 3x a week and was actually able to tolerate being in the room with certain foods. He was learning how to regulate himself and I was learning things to do to help him at home.

Things were looking up, or so I thought.

The state changed health insurance companies. Suddenly, my two year old who cannot even say momma nor mommy is denied speech therapy on the basis that because he does not have a brain injury or a specific disease responsible for the speech delay! So, what does this mean for his future? In order for him to be functional in life or his future, I have to dish out thousands of dollars I do not have to help him or I'm a failure as a parent?! I'm angry, very angry.

Then they cut DW's therapy in half too! He is full on in the middle of getting his aids and orthotics to fix his feet, ankles and knees and now I'm fully angry! What does this mean for him?? I spent two weeks on the phone with the insurance company and then corroborating with the therapy center. We got 8 OT visits instead of the recommended 12 a month, so it's a small victory but, JD is still shut out.

I'm not the only mother they've done this too either! Hundreds of kids are now without speech therapy and it is not ok and it is not good. So, several of us have banded together to get help, we've called, written to the state insurance program and contacted the local television stations. Given them interviews and are prepared to go all the way up the state chain of command and then to the capital if need be.

You can yank me around all you want but, this is our children we're talking about here! Never back a mother into a corner who is protecting her baby, they never back down!

1 comment:

  1. I admire you for fighting for you children. I thank God everyday that I have good insurance. Good luck.

    ReplyDelete