It’s Friday evening – Vince is out with friends and Jeremy is flying somewhere over the eastern side of the United States. I’m home on the couch watching Edda watch Finding Nemo. I tried to use mom and dad’s old camera, but it’s so unusable and unresponsive, it feels like I’m taking photos back in 2002. So I’m wondering if I really will go without photos on this blog for a month or if I’m going to go out and buy a point and shoot camera. Jeremy’s always thought that we needed a P&S camera as he hates lugging my camera around and sometimes he’d like to take his own photos.
The lack of photos means that I need to focus more on my writing which places me in a spot I am a little uncomfortable with because I don’t usually proofread my entries and I am a lazy writer – run on sentences, nouns and verbs which don’t match, a lot of extra, useless words and lots of cliches.
It has been an exhausting week, we still are not unpacked from the New Mexico trip, I’ve had a stressful week at work which has compounded my jet lag to make me a little insomniac. Also, I went to Edda’s yearly IEP meeting on Thursday, which was fun and productive, but also exhausting in it’s own right so I’m beat.
It has been a good year for Edda in terms of school, but also a good year for me. At last year’s IEP meeting, I was an emotional mess. I was still trying to work out my own educational goals for Edda. Was inclusion appropriate? Was a special needs school appropriate? I was fanatically, frantically and irrationally focused on Edda learning to read. Why was I focused on this goal? Well, at the national conferences on Rett, there are speech therapists who get up and talk about Rett Syndrome girls who can read, there are murmurs among parents who say that their daughter is included in a regular classroom and doing 4th grade work. I was enchanted and determined. So last year, I diligently went to seminars with Linda Burkhart and I bought a touch screen computer and switches and I made flashcards and laminated them. All this work led me down a road of intense self-imposed pressure that if I couldn’t make this work, I would have failed Edda. There were a lot of stressful sessions (not for Edda, who for the most part, enjoyed them) where I’m holding up pictures of animals/letters/number/pictures for Edda and trying to make her choose with her eye movements and I really couldn’t say for sure if she understood anything, everything was so inconsistent. I was going crazy, I needed to take a step back.
This year, I’m calmer and happier. I am not staying up late laminating cards. I am not stressing out about Edda learning to read, I’m focused on Edda enjoying her life and more importantly trying to balance everything so I don’t go crazy. It’s not to say that I won’t go back to laminating the cards and looking into other more high-tech modes of communication for Edda, it’s just that I had to take a little mental break from Rett Syndrome (if that is really at all possible) and enjoy Edda for just who she is at this moment and not just spin spin spin around in circles about what I should/could/need to do for Edda just so I can keep my head on straight.
Edda’s IEP meeting was very relaxed and informal, since her school isn’t changing and her services will still be the same I felt very much at ease – although it was very hot because it was 91 degrees outside and the school’s air conditioning isn’t scheduled to be turned on until next week.