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
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