Monday, June 18, 2007

Some notes from Sadie's IEP

Just thought I would share another post from downsyn I made right after the IEP...

"I'm toast!!! I can't believe how exhausting these past few days have been. I decided early that I wasn't going to stress out and make my family miserable while I waited to see what the school district thought about Sadie. I was doing a good job until yesterday about 2 pm. Last Tuesday she was assessed. I loved the team and thought that although she didn't do everything she could- she also did things we don't see her doing consistently- so everything pretty much came out even in the wash! After the assessment they keep saying how attentive she was, what a long attention span she had and how determined she was even though she didn't complete a lot of the tasks. Ok- I'm reading between the lines.. that means she will do well in therapy because she will sit and try- and she needs more instruction because she wasn't completing the tasks. Yesterday my husband got the report faxed to his office. He started reading it to me, and I am a visual person, so I tried to listen and not make judgments. I agreed with almost all of the results. What she could and couldn't do- or at least how she was testing. I've been told she isn't a good tester- but you just need to observe and see she does really well. Every therapist, dr., you name it tells me how high functioning she is. As I'm hearing the results I hear, her cognitive level is very low functioning. Ouch!!!!~ What is he talking about? The tester called and I asked him 4 times who she is being tested against, all three year olds, typical 3 yr olds or just kids with special needs. He tells me just kids with special needs. So she is in the 1 % of kids with special need? Like kids who won't give any eye contact, kids who have no control of their body?? I was devastated. I cried for 4 hours. I finally decided he didn't know Sadie and I knew she was sitting on my floor reading her book, singing songs and was happy. I have one kids who scores 99%-100% across the board on all her standardized tests and can't follow a three step command, freaks out in a bind and who struggles to be happy everyday. She's the one I would worry about- but the school system thinks she has it made. Long story short- he tested her on an average IQ range. She scored in the middle of 1%. I'll take that. I know she is mentally retarded. As much as I hate it, it comes with the Down Syndrome. 1% on an average IQ is not in the mentally retarded range. So, even though she did not do as well as we know she can- and even though she was delayed- they said she is within normal IQ range. Not by much- but she is. Then they spent the first 20 mins. telling me how great she did and how much they think she will thrive in school. I'm so exhausted. I should have never listened to them in the first place. Sadie is Sadie and no test is going to change that. I will have to brag a little- her receptive language is 34 months (she was 35 at testing) and her social emotional is 38 months. How could any kid with that kind of receptive score be very low functioning??? I think I'm the one who needs help since I listen to him!"

And here is an update after some replies (I'm not sure they understood what I was saying)...

"Thanks everyone! I happen to have my friend who came into town a couple of minutes before the IEP with me. She is a special ed. teacher for severally profound disabled children in Utah. She was horrified they would give her a test that they do not use on children with Down Syndrome (because it is for typical children). Which is really not a good test for her anyway, because she is more audio and it was a visual acuity test with fine motor skills- and she has poor wrist and shoulder strength and movement. I think they were trying to compliment Sadie because she was so cooperative- but the misunderstanding was devastating. I really thought they were telling me she was profoundly retarded. Which would be hard no matter what- but came out of no where! Every therapist she has ever worked with has been amazed at her abilities. Good news... they gave her more speech than usual because of her attention span. And they were so worried about the misunderstanding-that they gave her OT through the summer with an evaluation due by the start of the school year and a PT and APE evaluation. She is actually getting more therapy than I thought she would. Currently she does not qualify for speech because she does not have enough of a delay. Don't get me started on that one!!!! Her articulation has a lot to be desired and she still is delayed."

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