Muck and mire.

Well. Things don’t often go as planned and unfortunately, the drilling rigs were supposed to be done on Tuesday – but today is Friday and they are still here in the backyard.  I have a lovely photo of the work on Monday, nice leaf covered backyard with the sluice from bedrock/water mixture coming from the bore hole.  Since Monday, it had rained and various problems have cropped up – including city permitting issues as well as hitting the aquifer – which has basically turned the backyard into a huge wrestling mud pit.  I actually do not know the details and I’m trying not to worry about the whole thing because I think we are past the point of no return.  We are going to run those loops 250 ft into the ground, by golly, come hell or high water.  Oh, I guess the high water is already here.


On Thursday, we went to Edda’s school to meet with a psychologist/teacher/team to discuss how to “classify” Edda’s disability.  Edda is doing great at her school, this week she went to see the symphony at the Strathmore with all the 2nd graders and enjoyed it and she also was a turkey in the school play on Wed. Basically there were two classification categories to be picking from (as Edda is not blind or deaf or whatever other categories there are) – autism or intellectual disability.  We requested to have her classified under both categories to basically try and encompass more services for Edda going into the future.  I thought we could get it all done at that meeting, but apparently, she has to be assessed and the team has to write up reports and do all this extra stuff to figure out that she is really OK to be in both categories.   Seems like extra work to me, but what do I know.  Nothing (both about psychology and drilling 250 ft into the ground).

I do handle a lot of the school meetings and appointments for the kids, but for these kinds of meetings (which I have done alone before) I asked Jeremy to try and make room in his crazy busy schedule to come home and attend with me.  Even though I know all the teachers and staff want the best for Edda, it is always so hard to hear what Edda can’t do.  And she can’t do a lot.  And I know there is a lot she can do – most importantly love us and be loved by us – but in many ways what she cannot do always weighs heavily on my mind.  It’s always heart wrenching and, you know, I want to cry and really , I want Edda without Rett Syndrome and no amount of school intervention is going to make that come true.  Anyways, thank you to Jeremy for being there for me.

Finally, we returned the eye gaze machine to the rep – I’m glad that we got to trial it for a month.  It really allowed us to see if we would really use it on a day to day basis and the resounding answer is no.  It really is cumbersome to use, it takes up a lot of room on the dining room table and crashes all the time.  Edda did not enjoy using it, we did not enjoy using it, and the teachers did not enjoy using it.  I think it is – by far – the easiest way for Edda to access choices and maybe if it gets cheaper or smaller in the future (think iPad or Kindle small) then we’ll pick it up again – otherwise we are letting it go for now.


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