Wednesday, April 2, 2014

Autism awareness

April 2...I honestly never associated this day with anything. Social networking is blowing up today because it is Autism Awareness day. Light it up blue, wear blue, facts streaming, one in 68 children now, yada yada yada. Maybe I'm a jerk, but my daughter is more than a label, she is my daughter. She is 6, funny, loves music, books, and going to school. She is not Autism. She has a diagnosis, yes, but I'm one of a few, I suppose that isn't ready to embrace the whole wear it proud ideal. I hate Autism. I hate that we can't go places because she becomes overstimulated, I hate that Grace can't communicate to me with words to describe her world. I hate Autism.
I thought that by now that I would have accepted this, but as of today, maybe not. Due to her late dx, did she miss out on interventions and therapies that would have changed her abilities? I don't know this answer. She had and still has a great team of therapists working with her, starting at 15 months. Some of the great therapies that I know about now might have put her in a better advantage if she would have started them five years ago. ABA, AAC...but these were not an option to her because of the lack of diagnosis.
With that being said, raising awareness is important, early intervention is important, just remember to treat the symptoms, not the child. This diagnosis did not change Grace or our family, only gave it a name.
Insurance still doesn't cover all of the things she needs, so what was the point of getting a dx? I thought it would help her. I'm still continuing to fight for her, for her rights, for things that will help her out in this world.
On a positive note, she has been approved for the CES Waiver, which also grants her Medicaid. Her caseworker told me this week, funding will start rolling in sometime in late July or early August! She will have more options to more effective therapies and opportunities.

1 comment:

  1. Blessing to you and yours. Love you all. Keep on keeping on,
    Connie Voss