Zoom Autism Magazine Issue 2 - Page 29

tive, mine is more emotional, so we make a great team. Sometimes those opposite strengths make communication hard; I’ve had to learn to be very specific when telling John about my feelings. His neurological wiring prohibits his ability to read my non-verbal messages. I can be frowning, and John will ask me if I’m “jolly wife-ish.” I’ve had to work hard on adjusting my expectations around that, reminding myself that he can’t read my expression and doesn’t mean to be sexist. It’s one of those quirky expressions he likes to use, and his quirks are part of why I love him. I’m no cakewalk myself. I have ADHD and can be very impulsive and impatient. (My whole family is laughing because I said “can be.”) Those characteristics are just as difficult for John as his autism is for me, maybe even more so because of his mind-blindness. All of these issues bring me back to the question of balance. When I’m (John’s expression) “Yogified,” I take things in stride. If I’m not taking care of myself, I’m not so great at being mellow and understanding. siblings on the frontlines are not even considered in most of the grants awarded. Okay, I’m exiting the soapbox. Zoom: Do you have any advice for parents/stepparents of kids on the spectrum? Maripat: From my experience of having a child diagnosed with epilepsy at an early age, I learned the hard way to not become my child’s disability. By that, I mean having balance. When all of my energy was spent researching, advocating, and coping, there was no room left for recharging my battery. The biggest mistake I made going down that road was forgetting that other members of my family needed my time, too. Pretty soon the whole family focus was on the epilepsy. I know now that that had to do with my mourning process. The loss was the idea that I would have a societal “ideal” child. The elements of helplessness over “Just get through the day you are in, do your best, and forgive yourself and others for being human and making mistakes.” I think it’s time to adjust ‘Autism Awareness and Acceptance’ to ‘Autism Admiration’ but still acknowledge the pain and difficulty for families dealing with severe disability. When your resources are stretched to an absolute breaking point, there are no positives. Also on the spectrum are kids like Jacob Barnett, who at the age of thirteen co-authored a paper with a physics professor (Yogesh Joglekar) on an aspect of condensed matter theory. With disability can come great gifts, and society needs to acknowledge both. We need more services now. The proportion of dollars spent on long-term research vs. the efficacy and implementation of new treatments is way out of whack. I think family support and therapy is in shockingly short supply. Moms, dads and my kid’s disability kicked me into high gear, and it became my mission. And who could say that was wrong? I was trying to be a great mom. The truth is that until I went through the classic stages of denial, bargaining, anger, depression and acceptance, until I reached acceptance, I wasn’t able to effectively proportion my energies to the whole family. Today, I’m proud that my kids think for themselves and don’t strive to be “societal ideals. They are uniquely themselves. But the single most important thing I can say to parents? Everything will be all right. It will all work out. Just get through the day you are in, do your best, and forgive yourself and others for being human and making mistakes. Zoom: What about advice for being married to an autistic adult? Zoom Autism Through Many Lenses 29