Hello. My name is Abby. I'm eight years old and I was diagnosed with Rett Syndrome when I turned two. My parents work hard to help me make sense of the world around me and this blog is meant to help others understand my world and my journey with Rett Syndrome.

Sunday, May 15, 2011


I am learning that getting any equipment for Abby is going to take a long time.  Our insurance is notoriously slow.  Add to that the fact that Abby's disability qualifies her for Medicaid, which is very helpful, but carries along with it a lot of additional red tape.  Maybe the goal is to make the process of getting equipment so slow and painful that people will eventually give up?  I'm not sure.  In any case, it's ridiculous.  We have been working on getting a trial for an eye gaze communication device since November-ish.  I just got a confirmation last week that the company had all the necessary documentation to submit the claim to Medicaid.  Finally.  It had already been approved by our insurance, which is probably what took the first 7 months.  Now we wait.  And I know it will be worth the wait.  I'm just SO anxious for her to have a talker!  There are plenty of girls who haven't acquired a device until a much older age than Abby, and are doing well.  I don't think there is a closing window of opportunity.  But its just crazy that we know there is something out there that will allow her to communicate and its taking so long to get it.  I am not ungrateful. It appears that our insurance is considering it a covered expense, which is a good sign, its just that it is taking SO LONG to get it!!!  I think it could be much simpler.

The patient cannot talk.  She cannot use her hands.  She shows the required cognition to use such a device.  Give it to her!

See?  Pretty simple.  

I hope I don't sound ungrateful.  We have been so blessed.  Whenever we really need something for Abby, we have been able to find a way to get it.  Its just that I think this will be the closest thing to hearing Abby talk.  We've already been waiting a long time to hear what Abby has to say and she's been waiting a long time to express herself in a way that others understand.  Can you tell I'm a little anxious?!?    


  1. You don't sound ungrateful at all! I don't think it unreasonable to be anxious about your daughter having a way to communicate her basic needs and wants. I hope it happens soon and I can't wait to hear all the great things she is going to say!

  2. Not ungrateful! It's completely reasonable to expect to receive things that Abby is clearly entitled to, without months and months going by. Looking forward to hearing how she gets on with her talker when it comes. xx

  3. Hooray! Oh, wait, we're waiting...

    You're just expressing reality.

    Can I ask exactly what wording got through to the insurance? I can get my daughter speech therapy, but not any equipment right now. What good is voice or sign instruction when she doesn't have the ability? Now who sounds ungrateful?

    I hope it goes quickly!