Tuesday, March 26, 2013

Haggadah: the original IEP

Passover is my favorite Jewish holiday. I'm about the least observant Jew you'll ever meet (see here and here and here and here and here and here...), but for me Passover sums up all that is good about Judaism: family and friends telling the story of our ancestors overcoming oppression while sharing dinner and drinking Manischewitz. Extra heavy malaga or go home!

One of the key parts of the seder is the asking and answering of The Four Questions, which are all variations of "Why is this night different from all other nights?" The point is for the adults in the room to teach the children about the history of Pharaoh's enslavement of the Jews and how God led the Jews out of Egypt to freedom. (By the way, Ryan asked three questions during the seder: Can you bring the big fruit salad closer? Can I have another piece of cake with no wheat in it? And Where is the Elmo sticker?)

The Haggadah describes four types of children - the Wise Child, the Wicked Child, the Simple Child, and the Child Who Does Not Know How To Ask - and says we must tell the story of the Exodus to each child in the way that is most appropriate for him or her. I like to think of this as the original IEP*.

The past couple of years we've been using a comic book haggadah. This haggadah depicts the Four Children as variations on the Marx Brothers. (And if you look closely at the picture of the Jews crossing the parted Red Sea you can find a little boy peeing on a cactus.)
We're pretty Reform...
When we got to this part of the seder, I made an attempt to engage Ryan in the asking of the questions, but he made it clear he is Zeppo, the Child Who Doesn't Know How To Ask. The haggadah advises, "Don't bother with questions for this child, just start telling the story."

I'm coming to truly appreciate the Four Children model. The ancient rabbis knew that to pass on our history and traditions we must teach them to every child, but that different children learn in different ways. The Wise Child (Groucho) knows the story backward and forward so you keep teaching more details. The Wicked Child (Chico) thinks the stories don't apply to him, but is still bright enough to grasp the stories if you can make them engaging for him. The Simple Child (Harpo) needs everything spelled out for him. And then there's Zeppo.

You have to teach Zeppo the stories, but you may not get a lot of feedback, or even know if he's listening. The important thing is to keep trying to teach him the story in whatever way makes most sense to him.

* IEP = Individualized Education Program - a document mandated by the American Individuals with Disabilities Education Act (IDEA) to tailor a special ed student's education to his special needs.

Monday, March 4, 2013

Moderately Abnormal

"I'd like to go over the results of Ryan's testing with you one-on-one before the PPT."

Dr. L, the school district psychologist has been coordinating Ryan's triennial testing, which is supposed to determine his specific needs so his teachers and therapists can properly address them.

"Sometimes it's just too much to absorb in a group setting,"  she acknowledged.

There are nine Assessment Measures with more- or less-understandable names, acronyms, and abbreviations - ADOS-2, BASC-2, Vineland-II, Parent Interview (I had to sit down with Dr. L for an hour and a half and tearfully list all the things Ryan can and can not do), CARS2-QPC...  And most anxiety-producing for me, the SB-V - an IQ test.

The one which would produce a number I feel like I can actually understand.

A number that ranks my barely-verbal child against the population of Lake Woebegone and makes it perfectly clear to me and everyone else who cares to know that my baby's "Adaptive Level" in many areas is "Mildly Deficient."

Dr. L tried to focus my eyes on the subtests in which Ryan placed in the "Average/Normative Range," like "Nonverbal Quantitative Reasoning" (math), but I kept getting stuck on the Full Scale IQ number.

There's a lot of baggage attached to your IQ. It's a number I've always thought of as shorthand for How Smart You Are. Someone invented this test based on criteria I don't understand, and the higher your score, they say, the smarter you are; and the lower your score, the dumber you are.

As a person whose IQ is above average, I have been guilty my whole life of a sort of snobbery on the subject of relative intelligence. It has been my unwritten assumption that anyone with an IQ score below 100 falls into the "stupid" category and (I'm embarrassed to admit my bias, but) is probably not worth dealing with.

I don't really understand how one tests a kid like Ryan with any degree of accuracy - based on what little I've read, neither do professionals. The school used the Stanford-Binet Intelligence Scales Index, which may or may not be appropriate for children with autism; this test frequently pegs autistic kids as mentally retarded because they lack the communication skills to properly respond to the test questions, even though their intelligence may shine through in other forums.

In any case, I have 13 single-spaced pages of test results peppered with phrases like "At Risk," "Mildly Deficient," "Moderately Low," "Normative Weakness," and "Moderately Abnormal." Page after page of carefully-calculated numbers detailing all of Ryan's challenges, and arriving at the conclusion that my baby falls into a category I grew up assuming was too stupid to bother talking to.

I'd like to think that part of being intelligent is being able to recognize when you're wrong, and I've been really really wrong. Ryan is bright and loving and clever and filled with joy. He is the most beautiful person I've ever known, and he has an amazing ability to charm the pants off everyone he meets. No matter what these test results say, Ryan is deserving of love and attention and respect. I am ashamed that I would ever have ruled him out categorically, and I wonder how many wonderful people I have brushed off over the years.

And I hope that as Ryan grows up people see him for the lovable person he is.