colleague of mine and fiction writer, Elizabeth Huergo, wrote a book that is soon to be released in April 2013. As I read through the advanced copy, I admired her ability to craft and hone each sentence so it resonates with the reader. As someone with an MFA in Creative Non-fiction, I know that meticulous give and take all too well. As a parent of someone with autism, I utilize these skills to help my son learn. He is a work in progress that on some days I would dearly like to be done with— like a book — published. It seems that as soon as I teach a skill, he either has it or he doesn’t and it’s a crap shoot whether he’ll retain it the next day, week, or year.
I often think, when is it time for me to release him as my best-selling novel? I already have many chapters, including an Appendix: Best IEPS: The Early Years, 1995-2015.
And yet, as Alex gets closer to leaving high school and entering the cloudy waters of adult programs, I find it hard to stop honing. I admire the moms who keep blogging and publishing their experiences with autism while crafting their children to be strong, happy teens and adults. Going to press can be joyous and uplifting. When my internal editor, tells me that last word has been tweaked, then I’ll know that it’s time to let go.
I recently read an essay in Scientific American which brought tears to my eyes. It reminded me about what I have been trying to do by establishing Alex’s Art Loft. My son, Alex, has always been considered low functioning and did not do well on standardized tests. He is nonverbal and has many limitations, but crafts is not one of them. It took me years to figure out that he liked to work with tiny beads and tools. While people got frustrated with him because he wouldn’t follow the rules in certain games (why hit a ball with a golf club or pool cue when you can just drop it into the hole?), I saw his way of thinking as an ingenious way to save time. I saw his stubbornness and devotion to order admirable in a society which often disregards the rules. I took his prompt dependence to mean a deep respect for others’ authority and a need for assurance and acceptance. Don’t we all want to make sure we do a good job by being certain of what is asked of us? Sometimes I wish he would initiate more, but I’d rather have a son who is shy rather than self-entitled. It’s tough to change your way of thinking about what it means to be successful, appropriate, and yes, human. But like learning a new skill, it can also be enlightening. When a parent of another autistic child approaches me and says, “My child could never do what your son does, he doesn’t have the…” I say, “then your child can hold the string, pass the beads, push the button, clap, smile…to help my son.” When is society going to realize that it doesn’t make a difference how we do what we do? As long as the ball goes in the hole, there’s always going to be a winner.
Because I teach at a community college I am surrounded by high school students eager to start their lives as adults. Isn’t it great to be independent? Maybe. At a time when jobs are scarce, there are even less job oportunities for adults with autism. As a parent, I worry about my son being independent. At 18, we thought that we would be helping our son with college applications, but instead I am filling out applications for SSI and legal guardianship. Not exactly a thrill. I teach students how to write a better college application essay; somehow I have compartmentalized that so I can do it without sadness. When people ask me how old my son is, the question is almost always followed by another one: What college is he going to next year? It’s okay, I tell myself. Not everyone goes to college. It is ironic that being independent for a person with autism actually requires a stint at the courthouse where that person’s rights are limited, if not taken away. Not everyone files for legal guardianship, but in our case I believe it is necessary. Yet, I also feel a sense of relief knowing that we have come this far. If I had to choose between Alex having a college education or being happy, I would pick the latter. Today Alex is happy, and although I am somewhat conflicted between who I am as a mother and teacher, I believe that happiness depends more on where you’ve been rather than wher you’re going.
As 2011 rolls in, Alex’s Art Loft hopes to see a minor profit, but then again, it’s not all about the money. It’s about being positive. Debt is only a state of mind. Right? So this year we intend to have Alex broaden his horizons by doing more pottery (he stamps clay with the autism ribbon and anything else that looks like it is interesting) and has learned to cut, press, smooth and roll clay which is then fired thanks to Wightman Road Pottery. He does this willingly (thank God because we are running out of ideas). Alex created new cards:
DC Monument, Cat, Easter Egg, and a Polar Bear. He is also beading hand crafted polymer beads with sunflowers on them to move us into spring.
My husband and I argued over why Quickbooks didn’t agree with the checking account. I wish we had an intern who was good at accounting! Alex is typing a Power Point presentation of his business at IvyMount. I never thought I would use the words “Alex” and “Power Point” in the same sentence. He will be 18 in July. When most teens are applying to colleges, Alex struggles to type. It’s okay, though. I’ll gladly take this “profit.” It means so much more to me than all of the losses. Perspective is such a powerful word.