Why I Stopped Advocating

When Claire turned 1 I had no idea what it meant to advocate for somebody. Just as she turned 2 we learned that she had Rett Syndrome and that there was a lot that we could do to help her. We had a really great early start team and I never really had to advocate. I never asked for anything that I really didn’t think that Claire needed and we were rarely denied anything as it was clearly necessity. Then she turned 3 and we transitioned into the school system. It was a very frustrating process to say the least. We were told that she did not qualify for orthopedic impairment, denied an evaluation for physical therapy and my request for a dedicated aide was not considered. I picked my battles and I fought like hell. She got pt, she was deemed to have orthopedic impairment and I was tired, exhausted. Fighting just isn’t fun. Everything that I had to ‘advocate’ for was with the district, not the actual people that we work with, but it did get taken out on them, in the form of me just not feeling very warm and fuzzy about the whole situation. I never wanted to be the pissed off mom of the special needs kid, but somehow I had fallen down that slippery slope and woken up one morning very close to bitterness. So I stopped. I did not give up, I just stopped fighting and it was the best thing that I could have done. I found the people that believed in Claire the most and I worked with them. In the mean time Claire turned everyone else into believers, how humbling that she did the hard part and left the easy stuff to me.  It wasn’t long and everyone that she worked with was a believer. For the first time, my contact with the school was limited, because there wasn’t much that needed to be discussed. They were doing a great job with her, she was learning and having fun, so I took myself mostly out of the equation. Then the winter came and Rett started to play it’s mean tricks on Claire. All of the sudden there was more to communicate again, this time the teacher and therapist were listening to every word I said and really trying their best to support Claire with the new challenges. Additionally, I listened to them, they really had gotten to know Claire well and brought a lot of good ideas to all of the trouble shooting we had to go through to get a good, safe, stable environment around Claire.  One morning, as I was dropping off Claire’s computer, the teacher came in to talk to me. She wanted Claire to have a one to one aide. I couldn’t believe my ears!!! I know so many people that have to battle, go to war to get an aide, here Claire was being offered one on a silver platter. Still, this was just the teacher, we still had to work with the school district and the county to find the appropriate place for all of this to happen. A few days later, there was a class for me to look at, a few days later, there were papers to sign. The whole thing has gone down without even having an IEP meeting. I am so glad that I stopped fighting and trying to push my agenda and what I thought was best onto the team that works with Claire. It really enabled them to be able to listen to Claire and respond with what she showed them she needed.  This morning I got a phone call from the teacher while I was playing on the beach (really wish I was blogging about that, please see the flickr pictures on the side, it was epic!) and of course, my first thought is, did they already call the ambulance? What is wrong now? But no, not today. She stepped out to call me because she was so excited. Claire’s new aide was there and Claire was being her awesome little self, so much that the teacher couldn’t contain herself. Apparently, Claire first used her talker to say, “This is my talker, it helps me speak” Before going on to her family page and telling about each of us. The talker was on her left, Alexandra, the aide on her right, Claire would look at Alexandra after each statement and wait for a response. If there was any doubt in my mind we were making the right changes, I am pretty sure that Claire just gave us her seal of approval. Now, I just need to keep practicing being quiet enough to continue listening, lucky for me, the beach turns out to be a great place to practice that!

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