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 Once a child turns 7, the DD (Developmental Delay) label is no longer applicable, and they must get a new "label" (and I'm sure, in your mind's eye, you can see me cringing over that word...).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?
Who knows?
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!
10 comments:
I know people get really worked up over the testing and labelling, but I have a hard time spending much energy on it. It's not news to me, or anyone on Abby's team, that she has cognitive issues. In my experience, people make judgments based on the DS diagnosis alone; the testing is a more of a formality. I think, if there is some mythical they down the road, we will deal with that then. But to go down swinging over this...it feels like a detail. I'd rather fight about how they're going to modify curriculum, or something else that actually matters on a day-to-day basis.
mmm - this isn't something we've been approached about yet, wonder if we are in for the same type of thing soon or if our state is different?
Labels are truly a double edge sword. You have to have some way to measure...justify services...as a school system or provider. It is no different than testing when our kids were little. But then labels set up boxes. I do not foresee a world were labels will go away because they are a necessary evil. I think you just have to come to the table and make sure you set the expectation for your child and that she or he is more than a label...why it is called an IEP...INDIVIDUALiZED education plan. We will be crossing this bridge soon as well and it sounds a little different from your state. Ultimately, we will do what is best for Kristen, just as you will. If that means a label, then so be it,
this is a hard one, I was shocked two and a half years ago when I heard that the label was mentally retarted(they were just in the process of chanding the words).(I did know there had to be an eval/testing) I friend of mine is trying to go for OHI (other health impared) "label) b/c you are right what are people at other school going to think, will they expect less...be harder?....not as compassionate? the things we worry about as parents.
Im not sure what we are going to do but I know it is getting time for that decision in the near future
I think this does differ from state to state..I am going to look into this for us...I vaguely remember this being mentioned to us during Maddie initial testing at 2 months old..it was the silliest thing I had ever seen..the psychologist was more interested in Chad and I (our relationship) then Maddie...funny and then he came to the conclusion somehow she did in fact have a extra chromosome! Giggle still about it...this however seems like it could be more intensive...one of Maddie therapist said to me one time be careful Maddie could test out of services...I said no that she will always have that diagnosis, label of Ds...her extra chromosome is there for good! But maybe this is what she was talking about...I cannot wait to here how this all turns out ...keep us posted! Smiles
I just want to thank you for being someone that allows me to see and prepare for some things that will come our way in the future. I often count my lucky stars that Levi is only 2, but it won't be long and we will be faced with these same issues. Thank your for sharing and for helping me consider what's ahead for us.
Wow. Its all so different down there in the states! First comment tho (I hate labels too! unless they communicate something useful), you need to look forward and see where you want to spend your energy ... because you can't battle or fight or advocate on EVERY front. So. There seem to be a couple of issues here: testing, labelling, and getting services and supports. All this depends on context. Testing can be very useful, if it is used to identify strengths and weaknesses and to target supports. We paid for our daughter's testing because we wanted to find out what kind of a learner she was and how to best help her. The report was very valuable, and identified teaching strategies and the best ways for her to demonstrate her knowledge. It was something we used over and over again to advocate for appropriate supports. As for labels, well, I won't tell you what kinds of labels we have run through here (in Canada) in the education system. Only that as part of the process, when our daughter was smaller and there was still wrangling over labels and segregation, she would be given the label of intellectual disability (which had a definition that included "unnable to profit from a regular education classroom" !!!!!!), and we would state/write formally that we strongly disagreed with the label, and with ALL labels and wanted the determination of educational services to be guided by her strengths and needs. Then we always made sure that the statement of needs ensured full inclusion. BUT that was here in Canada, I know your process is different. If I had any advice it would be to 1)know the system and rules and laws inside out 2)use them to get what you want 3)pick your battles .... if you can let go of some and still get a good education, then you can focus on really making inclusion work.
We were in the middle of all that decision making right before we ended up pulling Ally out of school so she never went through the testing part of it all. We did get as far as having the label OHI for her.Good luck...hope all goes well :)
I think you might be surprised at how high her IQ actually is. Because IQ is a score calculated in relation to her same age peers, it is likely to be higher now than down the road. Because all children at this age are concrete thinkers it is likely that Sammi isn't that far off from her peers. I think ID becomes much more readily identifiable after abstract thought starts to develop around age 8 and beyond.
I am so gald that i found your blog..you are a little bit ahead of us..and right now Avery has the DD diagnosis but the time is going to come where we are going to change it..thanks for this post..
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