I don't have the first clue. I just thought I needed a good tag line to get people to come back to my blog. I have been away since the spring. I would like to say that I had a nice summer hiatus, but to be honest my summer was not good.
People always ask "Enjoying your summer? It must be so nice to get summers off." Well, as a teacher, you don't really get them off, you just have to spend all summer doing the crappy stuff. Add to that the high heat and the low budget, there wasn't a whole lot to do.
"It must be great to spend all that time with your daughter." Yes, I had the whole summer to hang out with my kiddo, which was ok some of the time, and extremely challanging the rest of the time. This was the first summer after our diagnosis, and it was a chance for me to get up close and personal on a 24/7 basis with all that Fragile X means. During the school year, she went off to school and I went off to work, and my mind was occupied by other things. Summer was a full on reality check. Last summer she was in summer school, but that was cut this year due to the state budget. I am not cut out to be a stay at home mom - and special snaps to all those ladies who are. It is HARD. The summer finally started to get better in August, and I think that is when I figured out that I had to stop fighting my situation, and just accept it. I thought I already had, but with all the close contact, loosing my patience everyday, facing new realities and shortcomings everyday, I guess I didn't realize.
Acceptance. That is a tough thing to accomplish. While it may not be the key to happiness, I would have to say it is the key to contentment. When I stopped being jealous that my friends could stay out late, or go to movies, things got better. When I stopped caring that invitations for play dates and birthday parties did not come our way, things got to be better. When I just let me daughter be, and stopped trying to fix everything, things got better.
We also spent some time adjusting medicines to see if we could find something that might be a little more productive. We discovered that higher doses of stimulants made her so anxious she became paranoid, and that withdrawel from Abilify is very nasty, and we could not last more than 2 days before we went back on a minimum maintenance dose. With the onset of the new school year, we decieed to move forward with an anti-anxiety drug, but I have to admit, we are not seeing benefits yet, just an increase in hyperactivity. Exactly what we do not need. This new drug seems to have sent us on a vicious cycle. Higher stimulants make her anxious, requiring anti-anxiety meds. These meds increase her hyperactivity and lack of focus, requiring higher stimulant doses. This is a completely unsustainable cycle. We will try it out for a few more weeks, as they say it takes 4-6 weeks to see full efficiacy, but we may be back to square one. It is so frustrating when you realize a medicine you had hopes on just doesn't work. Back to acceptance again. Stop trying to fix it.
There is one more event that happened this summer, and that is the introduction of the IPad into our life (and Netflix). I think that every person with disabilities should be issued one of these. Mine is merely on loan for the time being, but I do not think I could live without one now. There are so many apps that can be beneficial. If nothing else, Steve Jobs legacy will be helping out these kids in ways he never even imagined. I saw it give a voice to another little girl who couldn't use her own. This is not a commercial for apple, but this one device, that can keep up with the 5 minute attention spans, and can sneak in some reading lessons and counting lessons, etc. brought a little sanity in my life. Dare I say ... the key to happiness is an IPad?
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