Mad Mensa Math Skills
A comment on the last post sort of insinuates that I went into the IEP meeting and bullied the therapists and teacher with my superior math skills.
Well, yeah, but that was not the point. I am remiss in that I did not offer the proper introduction in the blog post, the “why” for you to put it in perspective I greatly appreciate all the comments on this blog, even the ones that take me to task, light heartedly or not.
This IEP was/is extremely important. This is the last IEP before Pearlsky leaves the school district and goes into the “care” of the state. These will be the reports that anyone sees when they want to know more about Pearlsky, when determining what services she needs, who she is. Especially the “psychological evaluation.”
My goal is to get these reports as accurate as possible. It has been shown over the years that the teachers and therapists will always report things skewed towards the better or hopeful. Sometimes outrageously so, sometimes it is very subtle.
At the end of the meeting I did say this (yes these words, and yes I sometimes sprinkle in other languages when others are native) …
I am not trying to be a dick here. We all love Pearlsky and want the best, and I honestly know that, but let’s face it, she is severely disabled and totally retarded. She has less communication than a gerbil. You think I like saying this stuff? Out loud? This is extremely painful, and partially because we all know her, her נשמה, her душа, her soul, all the things that do not matter to the state but influence us.
When I was getting guardianship, the clerk in a very busy courthouse was giving me a hard time saying I had to wait until she was 18 to file. I said in a very loud voice “She’s a retard. Got it? Your words, not mine. SHE IS A REEE–TARD.” The place went silent, and he said “I’ll get Rick.” [ed. note: see here]. So my point to all of you is that when dealing with others who don’t know her, we have to hit them over the head with hard and cold facts. Let’s face it, Pearlsky has no communication to speak of, needs total and complete care. Period. And to have numbers like “she gets it right 68% of the time” when in fact it may very well be zero, or be 100, is just plain wrong and in the long run will be detrimental to her.
So I felt that I must show them that using the numbers as they were is both wrong and misleading. And in the end, they fully agreed and the numbers will be gone. The state will (and needs to) see that Pearlsky is no more capable than a cinder block. And that is ok, because from the point of view of physical care, it is accurate. From the point of view of communication with daily caregivers who come and go, it is accurate. I did say that we don’t want to make her look worse than she is, but alas, there is not much in that direction anyway.
But she is so much more. Her personality runs deep. She is loved and the effect she has on people is tremendous.
Damn it hurts writing this sometimes.
I think you’ve said it well, and you’ve said it beautifully here. For the most part. I will always wince at your use of the word “retard” — more like a bludgeon than anything else and I’m certain (as a word connoisseur) there are better expressions to use. My wincing and shrinking, though, is about me — not you.
I know your feelings on the word, and your son has expounded on it wonderfully to his peers and friends at school.
I won’t give up on the word, I do try to use it more as an adjective than a noun, though.
You notice that I sometimes use foreign words when someone’s native language comes into play. Saying “Я люблю тебя” to a native Russian speaker has much more meaning, more emotion than saying “I love you,” even though the words are the same. As you well know, Elizabeth, many many words have emotions tied to them. A room full of therapists and SPEDs hear “special needs” and “disability” all the time, almost neutral words. Getting attention for Pearlsky’s best interest sometimes necessitates words with strong emotions attached.
And sometimes I just want to noodge my friend.
The word makes me cringe when used. It really does. Even though my daughter is severely mentally retarded. And I know she is. I seem to cringe less when the word is used by those of us in this life. Like other things attached to this journey, I feel we have more of a “right”, for lack of a better word, to say certain things, make jokes that are in bad taste or to speak darkly about this life. Just the way I feel. Although some will disagree with me. Maybe that makes me a hypocrite.
As I comment to friends of mine that have been at this far longer then I, I wonder how I will find my way through this not bitter and angry and jaded. Or just plain pissed at the world. And somedays I think perhaps I am already all of those things to some degree or another.
I have to tell you that I literally rip up and throw away my IEP notes the minute I leave a meeting. The percentages and the “2 out of 4 time when prompted” crap is just that, crap. Because although I know Zoey does somethings, very few, for others that she does not do for me, on the whole, I KNOW what they write, as in working towards or achieving the set goals is, bullshit. Are they trying to make me feel better? If so, I need to tell them by not honestly documenting her progress or lack there of, hurts me and quite frankly insults my intelligence as her mom.
Next year we enter a new school. New teacher. New aid. And I am dreading it. Absolutely dreading it. But no way around it.
Three things more and the senseless rambling will cease. I had to google “noodge”. Shouldn’t be surprising. Second, I took Russian in high school. Little known fact to most. And lastly, keep writing. I find when I do, which isn’t often anymore, it hurts but oddly helps. The purging and the sharing and the support that comes with it, eases the hurt just a bit.
I am 100% certain the person commenting on your last post meant it completely tongue-in-cheek and meant it to be in no way a reflection of your actions but rather the failure of the school staff to grasp the simple and obvious. Humor doesn’t always come across as intended online. See why being a lurker isn’t such a bad thing?
Yes, hurts, but I so clearly understand what you, what you say, and what you must do….love does hurt and truth is brutal, but it keeps our kids alive and with us. I do understand….