My DD just turned 3 so we were doing the whole transition from EI to Metro schools. We weren't really wanting her to go to metro and have been working on getting her into a local autism center, but since we didn't have everything squared away with that we continued to work with metro just in case. So we did the whole evaluation thing with them, which was EXTREMELY stressful. Five ladies in a room, all of them going back and forth between asking me questions and evaluating her. Even though we were in the same room, I didn't get to see anything they were doing with her because they had me filling out mountains of paperwork. I must have answered the same questions about her on five different "surveys".
So then we met this week for the results. Some of it was pretty obvious...they agreed that she has Childhood disintegrative disorder, and that they'd put her under Autism for the school diagnosis. But then they started to say that they were considering diagnosing her with mental retardation as well. They said that they decided to not make it "official", but it is in the stupid report that she meets all the diagnostic criteria for MR. Ummm...sorry, but what? I get that she is behind. I get that her pattern of regression has been extreme. But really, just 10 months ago she was speaking in short sentences and was a completely amazing two year old. And we still see that potential in her! You guys evaluated her for one hour (practically bombarding her, which is really not the best way to get good results), and you want to stick her with a label like that? I don't think so.
Now that I've had time to read through the report, I am even more appalled. There are a bunch of things in there that they said that she can't do (because she didn't do it when they told her to) that she absolutely does do on a regular basis. Then there are inconsistencies where they say she can't do something in one section and then she can in another. So of course, the IEP they proposed was completely wrong for her. They put a bunch of stuff in there that she can already do.
Thankfully, we'd found out that morning that DD could go to the autism center, so we completely rejected the IEP and she isn't going into the school system if I can ever help it. So really, I just need to get over what that room of people thought because they don't matter, haha. But still, it's just been...bothering me. I think maybe I've just never had anyone look at her and be so...negative, I guess. I felt like no one in that room had any hope for her. I've never had that experience before, and hope to never have it again.
Why are these things so hard? And when will I learn to not take all of this so personally?
Also, when he first started preschool, their eval was also completely wrong. It wasn't until a few weeks after he started school that they called me into a meeting to 'update' their eval/IEP.
Sadly, this is a common occurrence. It can be difficult not to take it personally and/or get seriously angry/upset by the team.
I'm sorry you had to go through so much stress, and then get inaccurate results at the end of it all. I would call them and challenge them, tell them there are inaccuracies in the report, and tell them what you want changed. If they are at all interested in capturing who DD is in the report, they will be receptive to your input.
It's important for both the parent and the school to remember that the evaluation gives you a snapshot of the the child, not a fully fleshed out image. It's a report of what the child did and did not do at a paticular moment in time. When done correctly, the evaluation can give the parent and school a lot of useful information, but it will never give the full picture.
When writing my son's evaluation, the teachers and therapists who did the testing were very careful to write that "DS did not demonstrate an ability to do X, Y, and Z." They are not saying that he does not ever do these things, but they are saying that he did not do them when asked in the school environment. Some of these were tasks that he really cannot do. Some were things that he usually can do easily, but for whatever reason he would not do for the evaluator. And some are tasks that he can do in some settings (home), but not others (school). So it takes some time and effort to sort these things out.
We are lucky to have a great autism program in our public school district, so we work closely with the teachers and therapists in setting the IEP goals and monitoring his progress during the year. It sounds like you have found a great program outside of your school system, so I hope you and your DD have much success there!
Mom to an amazing little guy, age 9 (Autism, Hyperlexia, Dyspraxia, Albinism, Chromosome Microdeletion)
Rachelle, mommy to 8 year old boys!
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I felt like no one in that room had any hope for her. I've never had that experience before, and hope to never have it again.
Why are these things so hard? And when will I learn to not take all of this so personally?
I'm so glad that you (and your Dd) will not have to deal with those people again. It's over.
|we'd found out that morning that DD could go to the autism center|
but everything has pros and cons
Hugs to you.
But the good things is that I don't have to deal with all this! I'm lucky enough that I can walk away now and put DD in a place that respects her and will help her grow. I think when I have time I will post about the center she'll be going to and how amazing the series of events was that opened the doors for her to go there. Time to focus on the good
My ds got an evaluation about 1 1/2 years ago (not from the school system- this was from a big hospital/university) that just blew my socks off and made me think "WTH?? Are we talking about the same child??" The results from their evaluation were COMPLETELY different than all the other results of all the other evaluations he's had (and completely different than how I would have described him). I won't go into too many details but the short story is they were insisting ds doesn't have autism (whether he had autism or not was not even the question we were asking there- at that time he'd been diagnosed with autism by 4 different teams of specialists and 2 school districts in 2 different state... the kid has autism). They were insisting his problem was a combination of ADHD (which he has not been diagnosed with) and me as a parent. They said I needed to start him on medication ASAP and I needed to get help learning how to set limits with ds (yes, spanking was one of those limits they hinted at me needing). Needless to say, we ran and never went back.
Steph, DH Jason (1-1-11), DS Owen (10-3-03) and DS Kai (10-13-11)
My situation pales, but I foamed at the mouth with pretty upset calls to the director of the pediatric rehab when I received a letter in the mail telling that my son's evaluation showed he ranked in the 1st percentile (as bad as you can get). I was totally blind-sided. The director was pretty upset that I was told that information in a letter instead of in person. Apparently, the person violated protocol in doing so. The evaluation results were supposed to be delivered in a follow-up meeting, in part because getting a letter with results like that in teh mail is so upsetting.
I'm very glad that you aren't working with that evaluation team. They sound pretty inept. Something's going on with your daughter. But to look at the situation and pronounce her MR under the circumstances of such a regression shows a lack of thought -- and sending a letter like that "thinking out loud" is unprofessional.
I would go through the report and explain the items you don't agree with, in very factual terms. Try to be as objective as possible. It is very common that children don't do things at the eval that they can do with their parents or even do every day independently. Such is the isolated setting of the eval. So it's important to put into the notes that the child can do X in X setting with X help.
A few of the problems of standardized tests are that very very few are actually written for people on the autism spectrum, and that in order to be valid, you cannot really deviate from the way they are written. In order for many of my students to show their abilities on tests I've done with them, I've had to modify the test in some way, even simply due to the child's inability to respond verbally. But unfortunately, in a clinical setting, that invalidates the test. So sometimes for such formal evals, they have to stick to the exact wording on the test, even when a simple change would allow the child to demonstrate the skill. For example, one of my students had an eval at an autism center, where luckily it was a private eval so they could change the wording. One of the assessments was motor ability and the instructions were things like "Lift your leg up in the air". My student didn't have that receptive language ability yet but if you said, "Do this" or "copy me" and put your leg in the air, he'd copy you. So he had the motor skill, just not the language to understand the task.
So when you go through the evaluation, remember that that sort of thing may be a big part of the results.
i just find the whole process really appalling.