Countdown to the IEP …
Ah, that yearly event, the gathering of the team for the Individualized Educational Plan …
To prepare for your IEP meeting, repeat each line three times, and do this four times a day until the IEP.
- “NORMAL. What part of NORMAL do you not understand? The goal is for her to be NORMAL.”
- “She is regressing in that area. How about we say ‘she will be less messed up than the curve shows she will be’?”
- “I will get you two doctor’s notes that say she needs twice that.”
- “I’m sorry, I did not know that K-Mart sold school nursing degrees.”
- “What exactly does ‘education’ mean to my daughter? Do you honestly believe that every single student can be ‘educated’?”
- “If the school day ends at 2:20, how is it possible that my daughter gets home at 2:25? Exactly when does she leave the classroom and why is her day shorter than the NORMAL students?”
- “No, not having a vision therapist is YOUR problem, not my daughter’s.”
- “Why is there no male in this room other than me?” (only practice if you are male) (or confused)
- “You think she communicates because you understand her intent? And you understand her intent … because she communicates? And this makes sense on what planet?”
To otherwise prepare for the meeting …
- Wear your “Helen Keller Rocks” T-shirt
- Bring along a tall male friend wearing a dark suit, red tie and sunglasses. He is to sit to your right and sip Pellegrino out of a bottle the entire time, not saying a word. Introduce him as your lawyer, Moishe.
The following was received when I sent a draft of this post to one who loves Pearlsky and me (and vice-versa):
What would you like to change in Pearlsky? Seriously and realistically, what would you like to see addressed? Is there anything? Something like her putting her hand in her mouth? This is the one time that you can really address an issue that you are concerned with. Evaluations concerning the issue can be ordered and then solutions pursued. You know all this. Take it seriously and use the system. What about a standing program? A swimming program? What about using a straw to drink with?
What would you really like them to address with Pearlsky this coming year?
I know I sound awful and as if you are a new parent, but I feel compelled to remind you that this is your opportunity to try and address an issue(s) that might make Pearlsky’s care easier for you or for others along with Pearlsky’s physical well-being on top of all the usual stuff. Plus it adds a positive focus to the meeting and uses the education system for something other than a daycare.
You have so much more power in the IEP than the school does. So wield it.
I’m sorry, but you are so much better than the knocks in the post. I understand completely your anger, frustration, and hurt, and I enjoy your humor, but make the system work for Pearlsky. You are a most charming and amazing man; make sure everyone in the room knows this.
Yes, she does know that my points above were in jest, but I wanted to reproduce her email her because there are some serious, and excellent points (including the “most charming and amazing man” part, did you get that? It is in the last sentence … but I won’t highlight it at all, you saw it, right?).
The “using a straw” thing was a goal on Pearlsky’s first five IEP’s. She never attained it, and the point is that now she is in a different school, different people, maybe they can. That simple goal was a part of my frustration, no goal has ever been reached, so what’s the point?
Although I do go into every IEP hoping for a change, working with the team to make life better for Pearlsky (an entire topic in its own right) I can become cynical, and that is not always helpful.
So, I stand by my exercises and preparation above, and bring Aphrodite’s words to you in the hopes that they help all of us.
I will update you on the IEP (and the wheelchair) shortly … now please wish this most charming and amazing man luck at the IEP …
I prefer to mainline heroin before our IEPs, but I appreciate the mantras you’ve included.
Good luck charming and amazing man!! ; )
1. I now love the person who sent you the response, too. ditto what s/he said.
2. What about a standing program?
3. I’m not signing until you say she communicates.
4. Bring cookies and a framed photo of Pearlskey to the meeting. (Other parents swear by this tactic.) In all of the (estimated) near 1000 IEP meetings I have attended not one parent brought cookies.
5. I don’t believe in luck or coincidence. Still, I’m confident Pearlskey will be well taken care of wherever she is, with whomever she is with because she has an amazing and loving father (and Moishe).
6. Number 6 is illegal.
As a parent of a child with severe disabilities and a teacher I have always taken exception to the narrow conceptualization of “education” being something about achieving a specific measurable goal as has been described in your past posts…use of a switch, specific eye movements, etc. First off, these are O.T., P.T. goals…if she is under the care of such, then they are appropriate attempts to train the physical body to move for useful purposes. It would be expected that, after years of attempting similar goals and being unsuccessful, these professionals would have to switch gears and head for more physical management…massaging the hands and feet, range of motion, etc.
As for “educational” goals…I agree on points in the email about swimming and standing and other EXPERIENTIAL aspects of education…the measurability of such experiences are based solely on your daughter’s expressions of pleasure or discomfort…music, art as in exposure to textures and colours, participation in school events like assemblies, basketball games, plays, etc.
Where I get a bit hot under the collar is more along the line of the complimentary aspects of the email…you are indeed a high calibre parent and your cynicism is a direct result of the fact that the people with whom you are working are not addressing your points or providing your daughter with appropriate activities in school. It is difficult to remain the positive parent when they attempt to “change” (hate that word!) her to fit some norm that she cannot achieve and that you know damn well she can’t…it pisses me off royally when people do not give me credit for knowing what my child can or cannot do or achieve!!
So…I ask for experiential educational goals first and foremost. I also ask for daily exposure to numbers and language…letters, spelling, reading…in case the child is indeed performing quadratic equations in her brain (or writing Joycean novels…hope not ’cause I hate Joyce) but can never tell me. Is exposed to verbal presentations of current affairs…even if that means the latest gossip about the school beauty queen being pregnant from the star football player. At least she can carry on with her personal development…
If they can’t even keep her in school for the full day, then I have to be fairly certain that they lack the imagination to move past the stupidity of goal oriented education as in A leads to B leads to C…and I would be more than cynical. Once again, I would be faced with telling them what they should be doing directly…and disrupting their illusions that they are the professionals who supposedly have all the answers. This is indeed, in the end, what many (most?) parents face at the IEP meetings. They just don’t get it…why don’t they get it…why don’t they just do what I tell them to do.
So, why is it that someone like Elizabeth Aquino…another high calibre parent… would rather mainline heroin than go to an IEP meeting? What most parents would like is for their children to spend time enjoying the school environment…and that the individuals involved in the child’s “education” are creative and coming up with ways to make that happen. Is that “day care”? I’ll follow that with S.D.’s question “Are all children educable?”…If one’s interpretation of “educable” involves solely the concepts of accumulation and dissemination of facts (or acquisition of certain physical skills)…then NO..some children are not educable…then is it not appropriate to “babysit” them…that is to provide them with a day full of pleasurable experiences?
“this is your opportunity to try and address an issue(s) that might make Pearlsky’s care easier for you or for others along with Pearlsky’s physical well-being on top of all the usual stuff.” Is this the job of a school environment or of a rehab environment?
Re: Barbara’s comment: I hope you jest about milk and cookies…I find there is nothing worse than a parent coming in with the “good boy, good girl” attitude that panders to a system that consistently pats itself on the back for a job well done, but dismally fails to deliver. There is no question that some schools are better at this than others…but for the most part it’s all window dressing and parents are always left to fight for appropriate environments and activities for their more challenged kids.