IQ tests. Labels. Services. Re-evaluations. IEPs.
All words that strike fear and foreboding into the hearts of parents of children with special needs. So many things to think about, so many details, so much to learn, so many ways to impact a child's educational future. And, once Sammi had successfully entered the public school system at age 2, we did hear mention of IQ testing and re-evaluations...for when she was 6 1/2. A whole 4 1/2 years beyond the point we were at then, a whole 4 1/2 years to not worry, to think we had SO much time yet, to relax and deal with IEPs and the general day-to-day only.
But oh, how quickly those 4 1/2 years passed by! And here we are, only slightly wiser, trying to learn as much as possible about what we may be facing in a ridiculously short period of time.
I know I can't say too much here in this public forum yet, but I am curious about your experiences, your knowledge of the matter. I posted something on Facebook the other day and the response was overwhelming. SO helpful! Thank you to all of my friends in FB-land...
So here we are, pondering over the BIG question, to test or not to test? Here's the story:
The test is given by a school psychologist, as part of the re-evaluation process. Once a child turns 7, the DD (Developmental Delay) label is no longer applicable, and they must get a new "label" (and I'm sure, in your mind's eye, you can see me cringing over that word...). The label options are not great. And supposedly the testing is to just get a good, well-rounded picture of the child's cognitive whereabouts, and does not drive the label or the services. Which is fine. But again, the label options are quite restrictive. The one that most children with Ds or any other cognitive disability would get is ID (intellectual disability). In and of itself, it's pretty accurate. BUT, even though you may have a strong and supportive IEP team and positive school environment now, a group of people who know your child and don't view ID as anything negative, who really knows what that label of ID would mean in a prejudicial way, to a new team in another school or school system if you move, or if your child switches schools due to redistricting or grade level? Will they see that label as a means to pigeon-hole the child into a category of ability that's less than their true capabilities? Will they use that as an excuse to fight for self-containment? (I'm not opposed to self-containment in some situations - it all depends on what's best for the child. But I don't want it for Sammi. At least not for the foreseeable future.) Will they write off your child? Give them less attention?
But I'll tell you this, I don't want to find out.
So we could say, no testing, fight the system, remove the whole psychological piece from the evaluation process. Kind of silly, really, considering re-evaluating has so much to do with cognition! I'd be blind if I said that they should be able to do it based on a physical and occupational and speech basis only. Samantha does need some additional supports based on cognitive abilities, and I'm not about to sell her short, lose those supports, just because we don't want her to be evaluated on a very important piece of the puzzle that makes her who she is.
So, if we say no testing, there comes another problem...that of future adult services. To get Samantha on the ID waiver, a process that would help to secure state funding for her as an adult to receive community supports and services, an IQ test score is required. If we test Samantha now, at the tender age of 6, the score is likely to not be very high. I know this. That's actually good for that waiver, in all honesty. I know she'll need some sort of support when she graduates from high school. And if this test score helps to initiate that process, then GREAT.
What it comes down to right now for us, is that we don't really mind the idea of the testing. We understand it a bit better right now than we did even last week. But we don't want the ID label. We don't want to create a possible cause for additional prejudice somewhere down the road in her school career.
Another label has been suggested to us, one that we would jump at: Child With A Disability. We're not sure what kind of process we will need yet to secure that, but seriously, it sounds right up our alley - less inherent prejudice just in those 4 words. Key members of Sammi's team are checking on that for us now. It truly sounds like the best of both worlds, but what does that mean at the county level? Will they push back? Does it mean less funding? What's the bottom line for them?
I'm not vilifying anyone, and am waiting patiently for an answer, prefering to think that the county will see eye-to-eye with us. But I'll tell you this, though, the bottom line for us is SAMANTHA and her well-being. Samantha's education.
Wish us luck, and please, share your own experiences on this topic!