Off on another path…again

I thought by now that I would have figured that there are no expectations on this journey. By now I should know that the things that I thought would be, generally aren’t and the things that I never even dreamed of have a way of finding their way into my life. Yet still I sit here surprised. On the heals of just finishing the triennial IEP I am still somehow shocked with the direction things are going. Let me explain as I know that I haven’t been blogging much and it is because I have been busy listening to my local expert on Rett Syndrome, Claire. I don’t know how it happened, but slowly, with the best intentions in mind, I lost track of listening to her first and foremost. I have had the blessing of access to people who know a lot about rett and all of the different facets of it. I listened enough to Claire to know that she had a lot to say so I worked tirelessly to get her a computer to enable her to do that. She was 4 when we got the Eco2 for our home and it was awesome. Then we had a speech therapist that was A.mazing and worked to teach Claire the Unity language and Claire had a lot of success with it. However, with that success came other stuff. By other stuff I mean dystonia. Dystonia is one of those words that when the pulmonologist or the GI ask you what the neuro said and you tell them the nuero said it is “dystonia” they get a disturbed look of fright on their face and then wish you the best of luck. We have been advised against medicating the dystonia as the meds would pretty much wipe her out. With that I sat and looked at my options. Out of all of the people that know so much about how bodies work it was Claire that had the key to our dilemma and so I started to listen better to her. The hard part is that in order to listen to Claire, I pretty but have to turn the volume down on the rest of life so I have become a bit of a recluse. But in my time away she has taught me so much. We are using the Eco2 less than ever and it is a good thing. I know you never thought that I would say that, neither did I! She does still use it and loves to have her voice but it is her non-verbals that are more amazing than ever. Over the last few months she has chosen signals for when she needs to go to the bathroom and when she is overwhelmed and needs space and neither of the signals involve her screaming. In fact, I don’t remember the last time that I heard her scream. She is emoting sadness and frustration but no more just random screams. It is really awe inspiring to see how she has taught us around her how she works and as we see it and honor it she is at peace. So in her IEP meeting I found myself not wanting any more inclusion time. Fact is, the general ed kids are nice but don’t really get her. Claire likes to have a quiet place to do her work from the general ed teacher so I am not pushing for her to have more time mainstreaming like I thought I would. Also her primary mode of communication is a simple yes/no with which she can very well control her world. She does use her talker to socialize and tell her needs, but it isn’t her only option. Her silent voice has gotten so much more articulate. Something that I am so deeply grateful for but indeed, I never saw that one coming! She has taught me to push less and just be. When she has her good days and her body works she stuns her teachers with how accurate she is at math, reading and writing. So on the bad days we just casually expose her to all of the stuff that we think she needs to learn. She reminds us that just because she doesn’t look like she is listening that she isn’t soaking in every drop. So I go from here, trying to not go in any direction but just with the way that the wind is blowing, and hoping that it is a gentle breeze and not a hurricane.

3 thoughts on “Off on another path…again

  1. This is really interesting, Colleen. It's something that I think I observe a little with Amy. (Although we still have screaming!) I was trying to say something like this in my last post on my own blog, but I think you say it better.

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