Hey! I had quick question for anyone already dealing with the public school system. Our IEP is Monday and I’ve already talked to the school psychologist and they say that they can not “label” our 3 year old as Fragile X. What “labels” have any of you mom and dads gotten? And, what do you think they will “label” my son as? We got the test results and he scored “well below average” in almost everthing, with several sensory/tactile issues. Any advice would be great!
PennyC
Hi Penny,
this is always a difficult situation.
"labels’ are the same as diagnosis, but used in different contexts for different reasons. Diagnosis often gives us the information that allows us to make sense of the disorder that our children have, and that can be useful.
However, this diagnosis, can become a label in other settings, with people tending to view our children through a lens of the disorder, rather than individuals themselves with unique personalities and needs different from other children with Fragile X. This can often be used in a negative way, so that our children don’t get to experience all the opportunities that come their way.
Let me give you an example to highlight the use of ‘labels’. One of my sons has auditory defensiveness… so that means ANY loud noise such as fireworks, loud sirens, and balloons popping will send him into a autistic reaction which in public can be difficult to manage. Not all Fragile X children will experience auditory defensiveness, but if another child is viewed within a label… they may not have the opportunities to experience fireworks or playing with balloons because of another child’s responses…
Have I explained that clear… more about my language and typing…
I think what your psychologist is trying to say is that they want to view your son’s difficulties and strengths as individual, and that often is a good thing, whilst keeping in mind the primary diagnosis. It is sometimes difficult to get your head around… working out what contexts diagnosis is used, and what contexts labels are used.
When you attend the IEP just remember to talk about your sons strengths and difficulties and everything will be fine…
Hope this helps,
Janine
As far as a label for an IEP I know my school district didn’t want to label Kamryn as MR. Instead they used MHI, (I think-- and I think that means multiple health issues or OHI -other health issues). Because fragile x is one of those spectrum disorders and you never know where your child is going to fall. Fragile x is sooo much more than just mr, don’t let them just throw that label on your child. I don’t so much mind the OHI label because it can be used for sooo many other issues, and it doesn’t limit us.
Hey! Just wanted to let y’all know, that we had the meeting and they “labeled” him with 2 disabilities. One was “developmental delay” and the other was some “communication” something?? I’d have to go and look at the paper work, again. Thanks for your help! PennyC