Monday, November 24, 2008

A moment to vent

I must finally share a situation that has been going in our life for a few weeks. I have not shared this on line, because a friend who reads this blog was not aware of this situation and I did not want to be the one to inform her. (Hi Melinda)

Anyway, we found out in October that Emma's diagnoses of VACTERL was taken off the list of disabilities for her Tennessee Early Intervention. This is the organization that takes care of birth till three and helps them get therapies and schooling before they are old enough to be in the Metro schools. Anyway, when she was referred to the TEIS (short for the Tennessee Early Intervention) she was automatically accepted due to her diagnoses. She did not have to be tested and all of that. Well, this year they cut her diagnoses off the list, and we had to go through more testing to continue with her therapies and such.

I was very angry with this and the undue stress it caused to worry about her qualifying again. Here my child does not walk or talk, and I am being told that she may or may not continue with her therapies. How can the state say that VACTERL children, who are born with so many health problems, do not need help and support. They obviously do not understand how much we deal with everyday and how we could not make it through without the help and support from TEIS.

Emma did have enough delay to stay in TEIS, but now our friend Melinda and her daughter are having to worry about her staying in the program. Melinda is so worried and stressed too. This is just causing undue stress on all! The state needs to wake up and realize that VACTERL is serious and affects children for a long time. I believe I will start a campaign soon to help them understand the stress and heartache we suffer due to VACTERL. It is a rare illness but it is very real to the families who fight it daily.

Okay I am better now that I took a moment to vent.

Ooopps! Emma has dropped her Mickey Mouse and needs some help

Rachel

1 comment:

Rebecca Batey Fradin said...

Hi there,

My son also has VACTERL and I was searching for something this morning and stumbled upon you website. Pretty girl!!!

And what obnoxious, annoying stuff coming from early intervention. I swear sometimes there are people out there TRYING to make things more difficult for us parents. Grrrr.

Do you belong to The VACTERL Network support group? There might be other parents in your state there that could help you "fight the system" :)

http://vacterlnetwork.org/members.html

Best wishes,
becca

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