The Good, The Bad, The Ugly.

Hello friends. Been a couple days, so I must fill you in on what's been happening. So much in so little time!!!!

I am officially a minivan driver. I never in my entire life thought that I would be driving a minivan, but I am, and I am quite pleased about it. Not only is it practically new and we got it for a heck of deal, but I am just overall impressed by the car, of course, I had to add a few personal touches like my Beatles decal and peace sign, gotta make things your own! I cannot wait to see how Grace reacts when she sees the new car! I hope she loves it. We picked it out especially for her! Fellow Rett families, or anyone who is thinking of purchasing a new adaptable van, please visit atsmobility.com and ask for Ron. They were absolutely fantastic and the prices are unbeatable. They just simply care. Bottom line. It's hard to find customer service like that nowdays.

This is not our exact van (ours is silver) but I want to show pictures of the conversions:

I will post pictures of ours soon once we get some of Grace riding in her new van.

So in more recent news, I have tried to become more active in the Rett community and getting involved with helping out for the IRSF. I know that I am still fairly new to all this and certainly do not by any means have the answers to most of the questions others may have, but I have decided to try to help out in my own special way, the way that I know how. Politically. I have some buddies from my old political science days, I wish I was able to be active still with them, but nevertheless, glad I still have my contacts, but my buddy works for Sen. Saxby Chambliss and well, let's just say, he can help me out and get me to the important people : ) So, I am working on a proclamation for a Rett Day in the State of GA and I am going to work even harder on trying to get Grace to be able to have her picture taken with the signed proclamation and Sen. Saxby Chambliss or Governor Nathan Deal. Either would be just fantastic! I am pretty excited about getting this accomplished for Grace.

(Look at Grace Face, my favorite little nugget)

Lately I have been a bit discouraged on my role in Grace's life. I feel as though I am just a side line viewer and should have very little say or do in her needs and future. I know I am just a step parent, but I have all these new ideas and I just want to help. It is never my intentions to discredit any other persons view, I just always want to help out in the best interest of Grace. Recently, I suggested have a Tobii eye gaze machine to be introduced to Grace in her classroom setting, because I would like to see how she works with the machine, see if we can start a communication system with Grace. I know that we would all love the ability to communicate with her. And Grace!!! How awesome would that be for her, to tell us when she is hungry, sleepy, or tired?!?! I am sure she would love it. Before I could even put forth my facts, I was immediately shot down. Grace can't do that, she does not have consistent eye gaze, she only has 10% control of her head, she moves too much, and wants to see what's going on in the class room versus trying to learn on the ipad, etc. How about we work on what Grace can do??? Let's stop dwelling on Grace's disability and try to find things that work for Grace because there are things out there. This Tobii machine has proven to be affective with Rett girls. It has been used with girls who don't have much control with their eye gaze normally, but they want to focus on this machine. I just spoke with a woman through the Rett community, you know, her daughter is much like Grace, cannot talk, not much eye gaze, no head control, and she uses the machine fabulously! The fact of the matter here is this, these therapist and teachers at school are great, I appreciate everything they do for our children, they are amazing people. However, they do not know every aspect of our children's lives. We know their capabilities. Grace has more eye gaze and head control at home than Gregory, my 9 year old step son. My thoughts are that when Grace is overly stimulated, stressed, or too excited at school, she gets what I call 'squirelly'. She will shake about and move her head, and look about the one at everyone. That's just how Grace does things. But I strongly believe that if we consistently work with Grace at home and use these learning devices with her, we will all be amazed. I have read this amazing blog of Brooklyn's, I mean, you should really check her out, this little girl, she just does not let anything get her down. She uses eye gaze boards, does homework, and really challenges herself. I mean who are we hurting here by not challenging Grace??? She can do this, I know she can, and I really think she would love the opportunity and chance to try.

So, with that, just my thoughts for today. I feeling rather quote-y, so I'll leave you with my favorite.

"When I was 5 years old, my mother always told me that happiness was the key to life. When I went to school, they asked me what I wanted to be when I grew up. I wrote down ‘happy.’ They told me I didn’t understand the assignment, and I told them they didn’t understand life."
- John Lennon

Tiffany