Advocating

Advocating is hard work. It is draining, tiring, exhausting some days. I will however, continue to advocate for my sweet baby girl until the end of time. We have had a rough go at this.

We have had Early On tell us that despite her diagnosis she doesn't qualify for care. I have now talked to every possible person in a higher position and she will finally receive the therapy she deserves. I have a baby who can not see. Who is not any where near sitting up at just over 6 months. I have a sweet little girl who still holds her legs up to her chest like she is in a fetal position. She is no where near ready to start eating solids. She can not even see where the spoon is. Yet they were telling me she wasn't able to receive services.

I also came across a website that on their very main page said that their goal was to get Braille bibles into of children starting at a very young age so that as they learned Braille they would have a bible and be able to read those stories that most kids grow up reading. When I requested one of these for Kinsley they denied my request. They stated that only 10% of parents actually teach there child braille and that since she isn't reading yet they will not send her one. I was upset. On their made page they said they wanted to get them into the hands of children early. I was trying my best to get her a bible just as I have given my other children a bible at her age. I responded by saying just as you read to an infant and they look at the pictures should not by blind child be given a bible that I can read to her and she can feel?Our bible will be in the mail soon.

Advocating will be my liefs work from here on out. I need to stand up to those who only give my daughter 50%. Only give half an answer, half the time, and push her off because they are  not sure how to deal with reality. I can only imagine what I will endure once she starts school. I can only imagine what this life of advocating will be like. I have had my taste and it makes me tired. It is what she needs. It is what she deserves.