Tomorrow morning the boys are doing to see a psychologist for IQ testing. Apparently in order for us to continue to qualify for our grant, at age 5 the boys have to have it done. And fortunately last night I was cleaning out my inbox and noticed an email someone had sent me with attachments from a talk Marcia Braden gave about IQ testing in Fragile X kids, including different techiques to get the kid to cooperate and be tested effectively, and different types of IQ tests given to children and why they may, or more often, may not, work particularly well with Fragile X kids.
Sigh....another day, another new issue to tackle. It doesn't matter to me that much what test they use or whether it works well. I know they won't score well. But they manifest all these symptoms that make life challenging and we need this grant so I can continue to stay home and coordinate their daily therapy and special education classes and frequent doctor appointments, and research different alternative therapies, diets, supplements, and upcoming medications that are in clinical trials. And those medications that are currently in use And then, try not to let Aliza get lost in the shuffle of the boys' complicated lives. This is a full time job.
But even though it doesn't matter which test they use, I still would just like them to be aware that there exists research and documentation on Fragile X kids and how IQ testing works on them. I imagine these won't be the only Fragile X kids they test, and next time, they might want to consult this information before deciding on how to implement IQ tests on FX kids.
1 day ago
I'm so with you. You want the testing to be appropriate for the diagnosis, but at the same time, you don't want anything that might make the situation look better than it is and then lose whatever grants/help/programs that you KNOW benefit as a whole.
And I so relate to the comment about your daughter getting lost in the shuffle of things. I fear that so much with Avery because even though she has FX, she's so 'typical'. I feel like I get so wrapped up in dealing with the boys that she gets the short end a lot of times...plus she's the middle kid. I think in the long run, they will be so okay and well rounded.
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