I’ve hit a rough patch here. We had another appointment at the Fragile X clinic and they always throw me off no matter how nice the folks there are. Having to outline, in great detail, all the ways Monkey isn’t “normal” really gets to me. It makes all of the Fragile X stuff seem so much bigger than it is in our every day lives.
I always end up spending too many hours after the fact dwelling on all the questions the Dr. asked and my answers. I second guess my answers, did I overstate or understate the positives and negatives? THEN I start to second guess whether we’re doing all we should for him. Should we have him enrolled in more therapies, more activities? What therapies? Should we be doing more vitamins or supplements? What vitamins? What supplements? Have we totally screwed up by letting him watch TV? We never used to allow it. Is that why he can no longer pay attention to an entire story?
Uh, well…I think you get the idea. All my insecurities and fears get really big and try to drown out the really good stuff, like the fact that Monkey spent a very pleasant evening with us and his paternal grandparents last night. He will normally not stay in the same room with them but he did so last night with a smile. I’m trying really hard to focus on that right now.
I think that’s pretty typical. I always think that after filling out questionaires about the boys for research studies. I am always thinking, did I give an accurate account of how he really is? What doctor did you see?
We saw Dr. Nasir at Children’s Hospital. He’s a really nice person, I liked him a lot. I do wish he’d read Monkey’s chart before we got there (he was planning to read it AFTER we left.) But…I suppose that’s the life of a busy Dr. 🙂
I hate when that happens. Reading files AFTER the appointment just doesn’t make sense, and it leaves you feeling like they really didn’t know what they were talking about. Ugh.
Boy do I know how that feels. I have never been to a fragile x clinic and I think that is why. It’s bad enough when therapists or reg doctors make me feel like that. If I was desperate I might but I’m too big of a sissy. Good job trying to focus on the positive though…that is what gets us through 🙂