Friday, January 18, 2013

Autism and the Quest for Knowledge

Jennifer Byde Myers
jennyalice.com 


Jack doesn’t fit the mold. Not the mold for a typical kid, not the one for cerebral palsy, not autism, not ADHD. Whenever we try to "box him up", another piece of him pops out, unexplainable by a typical convention. I like it that way. I know I didn’t fit into the parameters that were set up for me as a kid, and I do my best to keep growing and changing so I can steer clear of the typical; “what I am supposed to do.”

The problem with being outside of the norms is that other people don’t always know how to handle you, or help you, or befriend you, or teach you, or be your doctor, or your therapist. People sometimes become exasperated, or assume less of you, or ignore you.

And some of that might happen out in the big bad world, but my son isn’t having that experience at school, not ever. No one is ignoring him, or wiping their hands of 'the situation.' We are so lucky because we have a group of professionals that really does 'get my kid'. Sitting in his IEP listening to one educator talk to a therapist about Jack, it was clear to me that they really understand that Jack is an individual, not just a kid with a label, or a few labels. They focus on his education, but realize that the school is not a silo, nor is it a place you stay forever, and his learning reflects the bigger picture of his life. They are constantly looking for ways to motivate him, engage him, and teach him.

I love that the expectation is that he has an opinion, wants to learn, and we just haven’t figured out all the best ways to help him communicate. It is comforting to know that they meet him where he is, but demand much of him. And it is a relief to have my suggestions interwoven into his educational plan so that we are creating goals for Jack that will move him forward at home and at school.

No one is cutting and pasting goals from another kid’s IEP to fill in the blanks for Jack’s 60+ page plan. We have all agreed that Jack is not going to perform the same task (finding his name out of a group of words) ten times in a row just to prove to you he can do it. He might do it twice, and one extra time for a new aide, but after that we know he’s not going to play your boring game. So we’re trying some new things this year. My favorite new thing is that I’m making a list of facts that Jack should know about our family, our life, and our community. The teachers will have this information, and using icons, pictures or words, will be able to ask questions that Jack should be able to answer. Then once we can all agree on his ability to comprehend, and show his level of knowledge there, with known facts, well, maybe we can move on to teaching him information, then quizzing him on that information: Are there sharks in the San Francisco Bay? What is at the Earth’s core? He loves science shows at home, so we are going to build on that. I imagine that the topics alone will be motivators for Jack to want to participate.

As different as Jack is from how I was at the same age, he is still my kid, and he’s my husband’s kid; he’s our genetics, and my husband and I have always wanted to know the answer… to everything. So with that in mind, I want to make sure that we are giving Jack every opportunity to see different places and hear about different topics. We need to help him learn about things he is interested in, and provide him access to information that he just can’t get to by himself. And we need to serve him that information in whatever format works best for his ability to input. Just because we all agree on that IEP doesn't mean the work is done. Until Jack is able to more directly determine what things he studies, there is a burden on us to show him as many subjects, as we can until we hit on "the thing" he wants to know all about.  It's tough to ask for more information on a subject you don't even know exists.

So I am thankful I am not flying solo on this endeavor to help Jack gain knowledge, and that we ultimately have a team of people who are looking for every way to feed that brain of his.

A version of this essay was previously published on goDandelion.com.