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 2, 2010

So much to do...

It is so difficult to find the time to do everything that I want to do for Abby. It's probably like his for lots of parents, especially those of kiddos with special needs. It seems nothing is quite good enough, right? I have so many ideas in my head of how I want to do things for her, but at the end of the day, few of them get done.

For example, one thing I am trying to do is to print out symbols, and use them throughout the day with Abby. Until now, we have used mostly photos. Symbols are pretty abstract, so we will have to use them a lot, and in context, for them to work. I imagine bath symbols to use in the tub, appropriate symbols for water play, symbols to use when she's getting ready for bed, etc. We need to model using them in conversation so that she understands how she can access them to communicate as well. My plan was to get the 30 day trial of Boardmaker Plus, and print and laminate symbol cards all weekend. By tonight, I should have symbols everywhere for us to use. What really happened? I installed the software to find that it is not nearly as easy as I thought. I have messed around with it, and printed out a few symbols, but nothing that I am ready to use. Argh!!

I have so many other things on my mind that it's hard to focus on any one thing. I am so glad Abbys IEP meeting is over, but getting what she needs is going to be a long process. The meeting was 2 1/2 hours long on Thursday. We are fortunate that the people who work with Abby are supportive and have her best interest in mind, but it will still be an uphill battle to get her the services that will make her successful in school. It's expensive for the school district to pay for an aid for one student and for a device that will allow Abby to communicate, but that is not my concern. My concern is advocating for Abby. We will get her what she needs, but I really don't want to have to get an advocacy attorney this early in the game. Also, United Healthcare has denied Abby's Speech Therapy on the grounds that it is meant to restore speech, and since she has never had speech, how can it be restored? I mean, if she can't speak, why would she possibly need other means to communicate? I knew that these battles were coming. With our insurance change, I figured her therapies would be questioned. I will appeal, and appeal, and appeal. I knew the school would fight my requests, and they did. I'm not much of a fighter. In fact, I avoid confrontation whenever possible. It seems that's all going to have to change. If ever there was something worth fighting for, I think this is it.

Okay, I vented, now maybe I can get those symbols printed out....

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