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.

Friday, July 16, 2010

Today we had a home assessment to determine Abby's eligibility for the Michelle P Waiver.  This waiver pays for expenses that our insurance denies, among other things.  It went as well as it could go.  The woman told me she definitely meets the "facility level of care" that makes her eligible, and that she would be surprised if Abby doesn't get the waiver (we will find out in a month or so).  That was the result that I wanted, but I can't be all that thrilled that Abby meets the criteria for placement in a state facility (if she was unable to get the services at home). I know how severe Abby's disability is, but this was like pouring salt on an wound.

I had to explain in detail everything Rett Syndrome has robbed from Abby.  I usually try to focus on what Abby can do, but today the focus was every single thing that she can't do and every health problem that she has had, currently has, and is at risk for.  So much for focusing on all the good stuff, right?  To make it worse, Abby was right there with us, listening.  

Can she dress herself? Can she feed herself? Can she bathe herself? Can she transition from one position to another? Can she talk, read, write?  Seriously? I even had to look through her medical records to find the results of the genetic testing that determined she had Rett.  That brought up some fond memories.  Geez!

I think I just figured out why I have a headache tonight.      

I will try to be positive, even though its not coming very naturally right now.  If she does get the waiver it will fund her speech therapy and possibly allow her to start aquatic or hippotherapy again, which would be awesome.  The whole process takes a few months to get started, but it could get Abby a lot more services without us paying out of pocket.  The waiver will be a good thing, just a painful process to get started.


  1. yep-we are going thru the same thing now too. We got Avery on our waiver program for CA-barely-but we got it which means we get medi-cal and that opens up way more services. but it is hard to have to focus on each thing they cannot do. I had my appt with our case manager today and avery had to listen to it all too. and of course she was doing things so well! if it gets them what they need then it takes the sting out a little. one day hopefully we will just be saying "oh she USED to have Rett syndrome!" :)

  2. That day will definitely make up for all the bad ones!

  3. Hi Ann Marie! I found your web blog long story but do you have Medicaid? That is usually the first step in getting help. I live in Louisville as well and they thought my daughter has Retts and it turns out she is missing a small piece of Chromosome 5. Please e-mail me if you would like to get together or I can help you wade through the mess--of course JCPS is next--YIKES and I would love to help you in any way I can--Becky bdunn265@yahoo.com

  4. I had Reagan's meeting last week to get on Waiver as well. You perfectly described how I felt! It was the worse feeling ever to talk about all of the things she is not capable of doing. :(