Monday, December 15, 2008

Thoughts on Rett Syndrome

This weekend was a fun one for us. One of my closest and dearest friends in the world came to visit with her family. On saturday morning we had a Christmas cookie decorating party here at the house. It was lots of fun and all of the kids enjoyed decorating and eating cookies and also eating a nice breakfast. They also enjoyed getting Christmas goodie gifts as they left. Andrew didn't decorate any cookies but he really enjoyed all of the people in the house and was his usual happy self. At one point my sister-in-law mentioned that he would not have been able to do this last year. Looking back last year this time, he definitely would not have been able to handle the noise or people. At his second birthday party, which only included family, he cried and screamed the entire time. He did the same last Christmas. At the time we thought he didn't like the noise and the overstimulation- now I think it was part of the regression. I think that his body and mind were changing so much that he couldn't handle what was happening around him. He went from being able to communicate, to not at all. From using his hands- barely being able to use them, and from understanding the world around him to confusion. I can't imagine how he felt everyday.
During our friends visit I got to talking with her about all of the guilt that I initially felt when we got his autism diagnosis. I felt soo guilty about giving him all of the vaccinations, guilty for the changes in childcare providers that was too frequently happening, guilty that I didn't stay at home with him, guilty for giving all of those oral steroids and breathing treatments, and guilty when I was paralyzed with grief that I couldn't even sit and read him a book or work with him. Looking back at all of the chaos I am somewhat thankful that we have a Rett Syndrome diagnosis. I feel like it erases some of the guilt in knowing that nothing I did or didn't do would have changed this course. I know that there will many difficult times ahead but I am really praying hard for a cure and I am so thankful for all the research that has been done for RTT.


Karlie Grace said...

I'm so happy that you, Andrew and the rest of your family had such a great time! Your words are so close to my heart, as i felt (and sometimes still do) the same guilt and sadness. It's something we all share, unfortunately. However, receiving the diagnosis gave me something to research and enabled me to reach out to all of you other moms. No one seems to understand better, than those who are struggling with us. Big hugs! Kim

Caitlyn said...

Very well said. I remember feeling a lot of those same feelings when we got our diagnosis. Rett Syndrome is devistating at first, but it is a diagnosis with a known genetic cause. We know it's random, and nothing that we caused. It makes the guilt so much easier to over come!

I'm happy for you guys that Andrew has come out of his regression! It was so great for us when we turned that corner. We can go out and enjoy things as a family! Welcome to the Rett Syndrome family.

Avery said...

I know how you feel 2 fold! Cole has regular plain ol' autism. then came Avery. I thought here I go again--I really felt guilt. I knew that the vaccines hadnt caused it becuase I followed the DAN! protocol. I thought maybe I didnt interact with them enough. I thought maybe my body was faulty and that it was caused in utero. I also was somewhat relieved to get a RTT dx. But them I also had an overwhelming fear that I would never have grandkids. That my kids would be with me FOREVER---kids arent supposed to be with parents forever. They are supposed to growup and move out and grow families of their own. I thought that my husband and I would never know what "normal" felt like. Those fears are mostly gone now. Cole is doing awesome and I have made peace with my angel being with me forever. Im just glad I have her to hold. Things could always be much worse.