Thursday, September 29, 2011

The Self-Advocate/Parent Dialogues, Day Nine: Kristina Chew

We held a dialogue series last week between self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne'eman, President and co-founder of The Autistic Self-Advocacy Network; and parent Robert Rummel-Hudson, author of Schuyler's Monster and blogger at Fighting Monsters With Rubber Swords.

The series continued this week with Melody Latimer, director of The Autistic Self-Advocacy Network's Dallas-Ft. Worth chapter and blogger at ASParenting, Kassiane of Radical Neurodivergence Speaking, who prefers the term "advocate," and self-advocate Amanda Forest Vivian, blogger at I'm Somewhere Else.

You can read the entire series at thinkingautismguide.blogspot.com/search/label/dialogue.

Today's post is by autism parent Kristina Chew, who blogs at We Go With Him and Care2.com.

-The Editors

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What A Parent Can Learn From This Dialogue

As I started teaching my first class (8am, Elementary Latin) of the 2011-2012 school year, the thought occurred to me: The freshmen students in the first few rows are just a few years older than my now-14-year-old son Charlie. And then I thought, in just a few years, he'll be the same age as them. And then, one day -- he'll be older than them.

These are thoughts I've long avoided. While more and more students on the autism spectrum are going on to college, and more and more institutions of higher learning are only starting programs and offering accommodations and services, college is still not a possibility for Charlie. I'm the first to tell you he is one intelligent, observant kid, but academic subjects are not where he excels in school. Charlie started the secondary school program at his county autism center this past September; his curriculum is increasingly vocational and functional and meant to prepare him for that big day when school ends for him at the age of 21. Every day, Charlie's teachers and my husband Jim and I do all we can to prepare him for a job and for life after that day.

When I wrote some years ago about college not being likely for Charlie, some felt that I was being too limited in my hopes for him, too presumptive of what an autistic child can achieve; that I was somehow "writing off" possibilities for Charlie.

Of course, I was only speaking about Charlie's situation. As Melody Latimer reminds us, if you have met one individual on the autism spectrum, you have met one individual. College is a fabulous goal and achievement for many, many students on the spectrum. The skills and possibilities that Charlie's education are preparing him for are equally notable and, for Charlie, require just as much sustained study and patient learning as it takes to prepare for the SAT. While numerous studies make it clear that college graduates enjoy benefits, including higher lifetime earnings, many who start college (at my own college, indeed) do not finish, sometimes finding that other choices better suit their learning styles and abilities.

Ironically, when Charlie was first diagnosed with autism in 1999, my first thought was, I have to admit, "but how will this affect his college prospects!" I'm more than bemused by my reaction. I was raised in an Asian American family in which going to college was a sine qua non and the prospect of raising a child with learning challenges was terrifying. Back in those days, I had no idea what special education was, much less an IEP or inclusion. Raising Charlie has been a whole new education for me; too often I feel that I'm showing up for a test only to realize that the material is something completely different than what I studied.

Learning how to be Charlie's mother has become a life-long education for me, harder than the undergraduate and graduate studies I pursued years ago, and far more challenging than the lessons in ancient Greek grammar I teach my students. In the early days Jim and I relied on behaviorists and doctors. Along the way -- just around the time Charlie was getting taller than me, in 2005 -- we started reading the words of, and, fortuitously, meeting and talking to, more and more individuals on the autism spectrum. Jim and I met Kassiane Sibley in 2005 after Jim invited her to speak at a conference on autism and advocacy he had organized at Fordham University in October of that year. ASAN Vice-President Scott Robertson attended the conference and we later met Ari Ne'eman, too; for some months in 2008 - 2009, I was very fortunate to co-blog with Dora Raymaker at Change.org. We became more and more aware of friends and relatives who are on the spectrum, though undiagnosed.

Through these meetings and the ensuing conversations, some face to face and some via email and Skype, our sense of the neurodiversity of the world around us came better into focus. Jim, who has struggled all his life with severe ADHD, had long felt that he was part of such a country of difference. I don't line things up on the floor in patterns like Charlie, but I share his at times obsessive inclination for order and am quite aware that such is why I have always felt a curious comfort in working my way through the paradigms of ancient Greek verbs in three difference voices (active, middle, and passive) and five different moods (indicative, subjunctive, optative, imperative, infinitive).

Aware of our own struggles to make our way in the world, we have been all the more conscious of how much greater are Charlie's. Yes I would love it if Charlie could open one of the too many books in this house and start reading. I do maintain the ready belief that one day he will, and that mayhap he already can, but just has yet to reveal this ability. Trying to help Charlie in his struggles and challenges has made me a much better teacher of my college students, especially those who themselves struggle not only to focus in class, but to get to class. I have become aware that sometimes the reasons an essay is not done is due to some unexpressed, hard-to-put-into -words reason, just as what Charlie tells us in words is too often not all that he would like to say.

As the parent of a child on the severe end of the autism spectrum, it is necessary for me to be honest and realistic about where Charlie is, academically and in other areas. Charlie will be 21 years old soon, school will end and a whole very unknown world will begin for him and for Jim and me. We would be irresponsible parents not to start preparing now, based on where Charlie is today. There are seniors in my 8am Elementary Latin class too and they face an extremely challenging job market in a sluggish economy. College has prepared them well, but -- just as all the training and education Charlie is now receiving -- it offers no guarantees. Like Charlie, they have a long journey ahead of them, to find their place in the world.

A teacher learns the most from her students and all of mine have indeed taught me much about teaching, learning, and being human. So has a great deal of my education in how to help Charlie been deepened thanks to attending to the voices of those on the autism spectrum who have alerted me to ways of thinking and experiencing the sensory, social world that I need to know. I still have much, much more to learn to better support our boy as he walks on the very long road unrolling before him, as we try to keep pace with his ever quickening, distinctive stride.