Tuesday, April 26, 2011

The long day that might be tomorrow

Tomorrow is our appointment at our PWS clinic.  For those of you who aren't familiar with what this means, our clinic days are the days we take S down to our Children's Hospital, to see a team of doctors etc. who specialize in PWS.  Tomorrow we will be checking in with the geneticist who is a PWS expert, a behavioral psychologist, and a dietitian.  We may possibly also see the endo but I took S for a separate appointment with him in January, so we may just say hi to him.  I really like all the people we see; they are great humans and they really care about the kids they work with. 

However, these are not my favorite days.  I do not look forward to these days.  I will be greatly relieved if we can even get out the door without S fighting me about what she should wear.  I will be shocked if we get through the day without the "S needs to lose weight" talk.  I have to imagine that, for many a PWS parent, that talk becomes a bit inevitable.  I'm sure that various PWS parents who might read my blog, may be gasping in horror right now that we have allowed S's weight to get into an unacceptable range.  I do not fault the doctors or the dietician for telling us that we need to address the issue; that is their job.  They have charts to look at, growth curves to map out, percentiles which go strictly by the numbers and must be adhered to.  They are just doing their job.  They are going to grill me about her diet, what we feed her, how much exercise she gets.  It is going to be grueling, and we will simultaneously be trying to keep S amused throughout all this.  We will try to explain S's current behavioral challenges, and we will try to make the best decision possible as to whether a small dose of medication - Zol.oft, Proza/c, like that - is looming.  How bad does it have to get, just trying to basically live with a child with behavioral issues, before medication becomes necessary?  I don't know.  It's not something I really wanted to have to do for S.  But the truth is, it is becoming harder and harder to have her get through consecutive days, and have her mood/demeanor/personality remain stable.  And no, I don't really think these are behaviors she's exhibiting because of the food dyes/preservatives/gluten in her food or too many carbs in her diet.  I mean, if the dietician tomorrow says, "try this diet with S, I have personally seen it cause positive behavioral changes", then we'll see, but I don't really know where this is headed.  I just know that I live on pins and needles all. day. long. with her, wondering what seemingly unimportant thing is going to set her off into an epic, ugly meltdown.  The meltdowns are becoming harder to bounce back from, for both her and the rest of us!

My older daughter K, is also going to have an interesting day tomorrow.  The 4th, 5th, and 6th grade classes are taking the first part of our state's standardized testing tomorrow, with the second half for her grade on Friday.  I really am curious as to how this will go, as the math prep-book which she's been bringing home since January has been causing her a significant amount of stress.  There were several evenings where the only way she was going to get the math pages done was if B or I sat with her and coached her through the problems.  What will she do for those sections of the test tomorrow (or Friday, not sure which day math is)?  Her specific 6th-grade class has also been learning how to do a research paper.  This is complicated by the fact that her teacher, who is somewhat of a computer geek, is having them do this using computer software specifically focused on writing papers.  So, not only is she having to learn what a research paper even is, and all the parts of the process that come before writing one, she is having to learn how to use this software.  I like her teacher a lot but this was NOT a good combination, not for K and probably not for others in the class either.  What's wrong with good 'ol index cards for pete's sake??

So, I'm going to bed "early", in the hopes that I might actually sleep.

1 comment:

Rachel said...

Sounds like a tough day all around! Good luck!