Tuesday, October 27, 2009

Quinn's new school

Before I start this post, I want everyone to know we will soon be updating LSFX with more fun pictures! We just got a new camera, but I haven't loaded the software onto my computer yet that will allow me to upload the photos.

Anyway, I was thinking that I hadn't said much yet about Quinn's new school, and it might be of interest to folks who are exploring educational options for their little ones who have FXS.

Quinn's new school is a lot like his early intervention program, which we loved, though the new school is a little less warm and fuzzy.

The program, designed for kids with autism, is about five and a half hours a day and uses ABA, PECS, TEACHH and other teaching techniques. It has a 1:2 ratio. Though Quinn does not have a diagnosis of autism, he seems to benefit from these techniques. He recently did get a diagnosis of PDD-NOS, which I don't entirely agree with, but that's a topic for another post.

Quinn's also still getting occupational, physical, and speech therapy, so no complaints there. We did recently have a 30-day IEP meeting in which things were cut slightly from our previous IEP, but, well, you have to pick your battles.

One thing I'm finding tough is that I feel like I know very little about Quinn's days at school. We have a "home-school communication system" (that's a quote from the IEP, folks, most of us would call this "system" a notebook), but the teacher's notes are rather brief - often just 1-2 sentences every few days. For example, one day the note was, "Please bring extra pants." And it's not like I can ask Quinn about his day. His old school teacher wrote long notes in his "home-school communication system", we met weekly with a parent educator who talked with us about Quinn's progress and ways to incorporate more learning at home, we were encouraged to hang out and observe anytime, and the staff in general were more chatty at drop off and/or pick up.

So that's one thing I'm struggling with a bit - it's hard to rant or rave about a program that I don't know much about. Any suggestions from others about how to get more info on what my kid is doing all day at school?

Monday, October 19, 2009

Yay! Drinking from a Straw

At his new school, Quinn learned how to drink from straws, even skinny juice box straws. It is an awesome superpower! Now we can go almost anywhere in the world, and Quinn can drink, even if we don't schlepp around his kiddie cups. Woohoo! One less item in the diaper bag!

Quinn has been able to drink from super fat straws for awhile, but he hasn't had the ability to close his lips tight enough for a normal straw. This has been an early intervention goal for a loooong time, because I guess being able to close your lips is essential for making some sounds. It has also been a hygiene goal because having lip/mouth control helps to hold back the drool.

Quinn has also been able to drink from open cups for awhile, but the risk of spillage has been too great to take advantage of that super power while in restaurants, unless we order an extra cup and poor a tiny amount from a larger glass into the extra cup. But that can be rather tedious over the course of a meal.

So we are delighted with the straw drinking. One of the things I enjoy about raising a special kid is taking pleasure in all of the little hard-earned accomplishments.

Sunday, October 11, 2009

How good is the Fragile X Conference?

So we need some advice, fellow Fragile X bloggers. How good is the Fragile X conference? We had planned to go, but then realized it falls on the same weekend as our 5th anniversary. We have been planning to spend our anniversary at our favorite honeymoon hotel on Vancouver Island in Canada for years - pretty much since we left the hotel on our honeymoon!

We thought about going to just the first couple days of the conference, and then flying to Canada, but the logistics are complicated. Is it worth it to go for just two days? Do we bring Quinn with us to the conference? How is it for kids there? Is there childcare?

If we can't bring him, then we probably won't go because there's no way we can get someone to watch him for 5-6 days (a few while we're at the conference and a few while we're in Canada). I also couldn't bear to be away from him for so long. The longest we've been away from him is 24 hours, so contemplating just the 3 days for the anniversary trip is a lot.

Anyway, we'd love to hear from those of you who've been! Thanks.