Comments for Our Fragile X Story

Comment on Impressed by FXSmom

FXSmom — Thu, 02 Apr 2009 15:42:44 +0000

What an awesome shot of you guys!! Isn’t it nice when we see all the work and therapies come together…even just for one conversation!?!?

Comment on Going Good by Mary

Mary — Mon, 04 Aug 2008 18:38:12 +0000

I just attended the International conference is St. Louis and there was a great presentation by a life skills teacher. For her student with FX she takes her digital camera and does a picture by picture task analysis of the activity. Then she puts it in a small photo album and they look at it prior to the activity and discuss the steps. Then the student takes it with him and uses it as cues as he does the activity. Another mom showed her laminated pictures they use in the shower to remind themselves to wash each body part, hair, shave etc.This helps them be independent and decreases anxiety. Might give it a try with the laundry and community outings.

Comment on Things are a little bit better by Janine

Janine — Fri, 01 Aug 2008 15:53:44 +0000

It could be lots of things… and you could convince me. I think using things like this is great to increase and maintain skills that our kids have learned. It’s age appropriate – at any age depending on the games that you are playing, it’s interactive so encourages communication, either verbal or signing. It can relate to hand/eye coordination, fine motor skills, gross motor skills, problem solving, planning, turn taking, team spirit… just to name a few. I am a big advocate for this sort of stuff being used… well that’s my excuse anyway. Geoffrey was put on a computer at 2 years of age. I have a funny story though… many years back when he was a little tacker, he posted his photo into the floppy disk drive thinking that his photo would come up on the screen. This was before the days of digital technology. He was cute!

Comment on Things are a little bit better by Umma

Umma — Tue, 29 Jul 2008 14:15:04 +0000

They look like they’re enjoying the Wii. It should count as therapy…PT/OT at least, right? Somehow I doubt I could convince anyone of that in real life

Comment on Abolutely filthy by FXSmom

FXSmom — Tue, 01 Jul 2008 23:28:40 +0000

I hope things are a little better at this time.

Comment on Respite by Umma

Umma — Mon, 23 Jun 2008 16:00:54 +0000

That’s wonderful that you were able to get the extra temporary services set up! It has to be a huge relief!

Comment on Going Good by FXSmom

FXSmom — Fri, 11 Apr 2008 14:53:09 +0000

Farting is the bomb in our house too (pun intended)

Comment on Going Good by Umma

Umma — Tue, 08 Apr 2008 15:19:06 +0000

So true about boys being boys! Farts are funny, puddles and mud are the greatest things since sliced bread and grossing out Umma is just about the funniest thing ever. He’s even started saying “Yuck!” for me.

Comment on Frustrated. by FXSmom

FXSmom — Wed, 27 Feb 2008 21:58:02 +0000

I have that same darn gripe. I don’t have the luxory to be a SAHM either. Like you there are times I really wish I could but we just can’t afford it. Plus my job is the one that has the benefits. With 4 kids ya gotta have health insurance. We live in this little town that seems to assume that all moms stay home. It ticks me off. My job tries to be understanding but come on!

Comment on Frustrated. by Umma

Umma — Tue, 26 Feb 2008 17:48:13 +0000

That really stinks. It seems that they should have made this decision a LONG time ago so people could plan accordingly. I would be really annoyed. Perhaps if enough people complain they’ll reconsider?