Wednesday, January 7, 2009

a glass of reisling, stat!

The past two days have been much improved at school. Punkin's been a little sleepy, but otherwise seems, well, to have slowed down. I'm even seeing it at dinner -- he's using his fork. HIS FORK. Without being threatened. Love that.

I had his parent/teacher conference today. His teacher (HI!) and I talk every day, so nothing was especially shocking. She and I are both concerned about the development of more and more autistic behaviors. More self-stim, the loss of functional abilities (mainly those that require multiple steps -- ie: hand washing), sorting and lining up objects by color, lessened interest in socializing with his peers, more perseveration. One of his goals was to make a vertical, horizontal, and circular stroke. In September, he could imitate all three. Now, he scribbles uncontrollably and tears the paper to shreds. Hopefully the meds will help with this; time will tell. SIGH. It's not that he isn't making any progress, it's just that he's changed and it needs to be noted. But, like with so many aspects of life, I have to W A I T for more answers. Blah to waiting!

The diagnosis of FXS comes with some degree of autistic behaviors. So I guess I'm not sure why these developments weigh on me more than the diagnosis of FXS does. I guess I feel more helpless against these behaviors.

To end on a happy note, though, he sat for -- wait for it -- TEN MINUTES. In a row! At school!

p.s. I just went in to check on him. He must have heard me because he rolled away from me and said, "No no" with his eyes still closed. I think he thought I was trying to wake him up for school. Made my little heart melt. Oi.


Sarah said...

Congrats on 10 minutes of sitting! I can relate to concerns about the emergence of more autistic-like behaviors...I worry about that with our kid, too, even though it doesn't seem to be a problem now, I worry it will be a problem. I think the worry is that I will "lose" him - that he will retreat into his own little world, and that would be very hard to take.

Anonymous said...

Reisling?? Blech.
Just try and remember that like all kids there are hills and valleys. It will seem like he loses ground but then he will gain again.
You are doing a fabulous job of parenting!
Love you!
Aunt Kim

Jennie said...

He sounds like a twelve-year-old boy with the "no, no"!

Umma said...

Ten minutes? TEN? Awesome!

We've see waves of autistic symptoms come and go with Monkey over the years. He does still have a dual diagnosis but the director of the FX clinic said in June that he really doesn't think that's an accurate label. The clinic here works closely with a psychologist who can discern the difference between the two, not all can. Perhaps the clinic you visited can suggest someone with similar abilities?

One thing to keep in mind too is that the last couple of months have been pretty chaotic schedule-wise due to all the vacation days. It may just be a stress reaction.

FXSmom said...

10 minutes...I'm impressed. I think the only times Matt sits for 10 minutes is either to eat or watch

A huge thing at Punkins age is that as they learn new skills they seem to forget old ones. But they get them back. They aren't gone...they are just buried.

You and your team are doing great with him :)