Basically FX

Living with Fragile X Syndrome

In a stunning turn of events…

Umma | June 10, 2010

Monkey has a freaking assistive tech/voice output device.  Holy crappen!
We have been discussing this issue since…hmmm, let’s see…June, 2008!  TWO YEARS!!!  Several times we thought we were close only for it to continue to drag on but at today’s meeting the Assistive Tech trainer/evaluator had  a “loaner” device for him to use, until his device [...]

It’s time for another IEP meeting!

Umma | June 9, 2010

I feel like this is all I do!  Gah. 
This is our 3 year re-evaluation.  We have reports, lots of reports.  I read through all of them yesterday.  It’s a bit depressing, as usual, to read about the delays.  Obviously we’re aware he’s delayed but breaking it down to numbers is just so harsh.   In his [...]

The homevisit.

Umma | May 21, 2010

So, here is where I tell you all that it wasn’t that bad, everything was fine and I made myself anxious over nothing.  And you can all roll your eyes and think that I totally overreact to everything, God!  I’ll grin sheepishly at you and mentally make a note to do better next time.  I [...]

Fun, fun, fun!

Umma | May 20, 2010

We have a home visit tonight for the 3 year IEP evaluation. The school psychologist, who chairs Monkey’s IEP team, will be coming over to administer the Vineland.  90 minutes of pure fun, I tell you!  Gah.
The whole home visit thing cheeses me off, actually.  First, the school psychologists do not do home visits for [...]

We’re having doubts about the medication.

Umma | May 11, 2010

When we first started Monkey on the R*italin we saw a really big improvement in his eye contact.  The teachers noticed the increased eye contact as well and also noticed that his speech was more on topic.  We were all very excited. 
We did notice that he was having a bit of a down period right [...]