Posted in Autism, Childhood, Family, Observations, Parenting, tagged ASD, Autism, Autism Spectrum Disorder, Blogging, Childhood, children, Communication, Compassion, Diagnosis, Family, Friendship, Girlfriends, Gratitude, Judgment, Julia, Marty, Parenting, speech, Will, Writing on November 9, 2012|
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Will is on the couch fidgeting in his peripheral vision with a piece of frayed green yarn, artfully and very deliberately coated in masking tape by my hands under Will’s nonverbal instructions. Julia is watching Madagascar 3 for the thousandth time, and Marty, my soon-to-be-ex-husband and the kids’ loving dad, is in the kitchen blessedly making coffee. And me? I am at my desk, thinking about the article that ran about my little family in this morning’s Independent Florida Alligator.
Will was around 3 in this picture, but it’s one of my all-time favorites.
The reporter, Colleen Wright, a UF sophomore, showed up last week at my garage sale, having heard that my goal was to raise money so I can move to California where, while I don’t expect to arrive into some kind of Oz filled with free speech therapy centers on every corner, there are most definitely a lot more options and available, affordable, accessible services for a child like my son, Will, who, at 7 and a half, is nonverbal (we always say “preverbal,” because we remain hopeful) and has autism, OCD, sensory integration dysfunction, and a host of chronic health challenges. Wright questioned me for an hour that morning, respectful and inquisitive, but clearly with no background in autism. (more…)
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Posted in Autism, Childhood, Family, Observations, Religion, Uncategorized, tagged Autism, Autism Spectrum Disorder, Diagnosis, Holland, Julia, Schmolland, Welcome to Holland, Will, Writing on July 2, 2011|
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Not long after my son Will was diagnosed with autism just shy of his second birthday, someone sent me this little bit of prose called “Welcome to Holland.” It basically equates having a special-needs child to having your travel plans messed up. Go ahead and read it. I’ll wait.
(Insert favorite muzak here.)
Done? Ok. So, when I first read “Welcome to Holland,” our whole household was in crisis. About to have Baby #2 (aka: Julia), we were grasping at straws, looking for any kind of comfort or hope or promise that there was some light at the end of this tunnel. No, not even that. I was just looking for someone to tell me we were truly in a tunnel and not, as I feared, in an inescapable abyss. In that desperate state, “Welcome to Holland” seemed like a really nice little anecdote. I thought it had been written by a parent of a child with autism (I was wrong), and I took her words to mean that things do get better with time and acceptance (I was right).
So, time passed, and my feelings on this changed. And by “time,” I mean about three weeks. And by “changed,” I mean that when I reread the Holland story, I thought something along the lines of, “Screw Holland. This story is a complete load of minimalizing crap.” From then on, whenever anybody started recommending I read this very lovely bit of Pollyanna-style, all-things-happen-for-a-reason, the-world-is-made-of-marshmallows, illogical bullshit, I simply declined. Pressed for my opinion on the essay, I said it reminded me of a religious answer to a scientific question: it sounds really nice and makes sense…if you don’t really think about it too hard.
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Posted in Autism, Childhood, Family, Language, Parenting, Uncategorized, tagged ASD, Autism, Autism Spectrum Disorder, Diagnosis, Doctor, Family, Friendship, Gluten, Julia, Marty, Mercury, Motherhood, Nicole, Parenting, Pediatrician, Will on September 18, 2010|
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I remember the first time I “came out” to a stranger. I was at Target (as usual), and a woman said “hello” to Will and waited for him to respond. I said “hello” back for him, smiling and telling her, “Will isn’t being rude to you, ma’am. He has autism, so he doesn’t speak.” That night, I told my husband Marty about the exchange. I was incredibly proud of having publicly stated, to someone who didn’t need to know, that Will had autism. Doing so was a big step for me.
See, the thing about autism is that Will looks like everyone else (although, and I could be a teensy bit biased here, I do think he’s maybe a little cuter than the average kid). He “passes” for “normal” the way some of my gay friends used to “pass” for straight before coming out. People cannot look at Will and tell that he’s any different. And so I think it comes as even more of a surprise to people when I tell them he has autism.
At first, I didn’t want to tell people Will had autism because it was too painful. I would cry just thinking about autism, so I tried not to talk about it in front of Will. And I knew I didn’t have to tell people, given how Will blended in. So, in those first few months A.D. (that’s “After Diagnosis” in our house), I stuck to telling family and close friends. I even asked them to keep the news to themselves, not out of shame, but out of fear. I was petrified that a girlfriend would mention Will’s autism to another mom, and that I’d then run into that mom, say, at the park. I knew if I had a random acquaintance come up and give me her condolences (because that’s how it felt in the beginning; no one knew what to say except how sorry they were), I would completely break down on the spot.
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Posted in Autism, Childhood, Family, Observations, Parenting, Uncategorized, tagged Autism, Blogging, Childhood, Communication, Compassion, Computers, Family, Gratitude, Humor, Julia, Marty, Motherhood, Parenting, Software, Will, Writing on April 25, 2010|
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As a little girl, I kept a diary. I entrusted my deepest secrets to this silent confidante, my safe haven. My diary was a mute therapist, a free space where I could speak my mind without shame or fear or reprisal. My diary was a little hidden piece of me, tucked away in the dark recess beneath my headboard.
My childhood passed into adolescence, and the stack of flowery little diaries gave way to a neat pile of black-and-white Composition Books straight out of a 1950s high school movie. My diaries had become journals. My journals had become a project. And along the way, I had become a writer.
Today my old diaries and journals are stored away, rarely opened but always held onto, tied in bundles with red satin ribbons, living in perpetual safekeeping like so many baby photos and pressed flowers. I doubt I’ll ever let them go. They are little, written portraits of me. And, when, on rare occasions, I look back at them, I notice one overwhelming trend that holds true from my 4th-grade, Holly Hobby, lock-and-key, 40-page mini-diary to my leather-bound traveler’s journal from my senior year of college: They’re all incomplete. Every single volume has at least one big, huge time gap.
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Posted in Autism, Childhood, Language, Parenting, tagged A.D.D., Autism, Camp, Childhood, Compassion, Humor, Ian, Julia, Laura, Motherhood, O.C.D., Orthodontics, Parenting, Retardation, Will on January 12, 2009|
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By Tara Cohen
When I was in fourth grade, I already needed braces. Badly. My overbite was pushing beaver-esque proportions (man, I wish I were exaggerating), and the kids at day-camp referred to me not-so-affectionately as “Chipmunk.” The orthodontist was concerned that if I had any kind of accident involving my face, those two disproportionately large front choppers would be history. But, he told us, before he could even start shifting those pearly marbles around, some of them would have to be sacrificed to the tooth fairy in order for the rest to fit properly. “You,” he informed me, “have a very small mouth.” And thus began one of the longest-running jokes in my family’s history. “Tara?? A small mouth? I really don’t think so,” they joked. “The child who speaks at such lengths she seems to take breaths only once every five minutes? The one who, at age 4, told her great-grandmother and every other grey-haired person she met that they were old and surely going to die soon does not have a small mouth. No. This kid hands off wrapped birthday presents and says, ‘It’s a sweater! I hope you like it!’ Surely you’ve mixed her X-rays up with someone else’s. This child has the biggest mouth of all time. Call the folks at that Guinness Book place. They’ll back us up. Seriously. Add some teeth. There’s room. We swear.”
Turns out they were both right. The ortho-sadist knocked me out and pulled four adult and four baby teeth from my disproportionately small jaw, and then, when I woke up, I told anyone and everyone all about it. Considering it was 25 years ago and I’m still talking about it, I’d say my family had a fair point. Considering I’m talking about it with a very straight set of healthy teeth, I gotta give the doc a little credit too.
While surgical extractions and four years of braces did resolve my “small mouth” issue and alleviate my “chipmunk” status, it did nothing to improve my “big mouth” reputation, something I continue to perpetuate even now in my 30s. While I am finally capable of shutting up long enough to let people be pleasantly surprised while opening their gifts, I’ve never quite mastered the art of keeping a strong opinion to myself. As I have no current aspirations to politics or mafia life, I try to think of it as an asset. Being loquacious (sounds better than “more-talkative-than-a-teenage-cheerleader-on-speed”) often leads to interesting conversations with people in the most random settings. Just a few months back I had the most fascinating two-hour chat with this dead-ringer-for-Obama-atheistic-democrat-with-two-goddaughters-and-a-flat-in-Soho on a flight to New York. He was the most fascinating single-serving friend I’ve ever met (If you didn’t catch that little pop-culture reference, go rent “Fight Club,” seriously.), and being unwilling to talk politics or religion, or to talk to strangers in general, would certainly not have led to anywhere near as interesting a flight.
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Posted in Autism, Parenting, tagged Autism, Compassion, Friendship, Gratitude, Judgment, Julia, Kindness, Laura, Parenting, Shopping, Strangers, Will on December 25, 2008|
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by Tara Cohen
My friend Laura was recently at one of those big-box-nothing-under-100-pounds-can’t-escape-for-less-than-100-dollars behemoth warehouse stores with her husband and daughter, and she thought of me. Now, Laura, being the conservationist-social activist-cloth-diapering-vegetarian that she is, is not a huge fan of oversized portions of toxic plastic crap, so it’s worth noting that they were picking up bulk consumables like kitty litter and rice, not single-use plastics and disposable diapers. As they perused the streets of this indoor mecca o’ stuff, Laura loaded their cart with a super-mega-ultra-jumbo bag of cat food and noticed a woman staring at her with something like disapproval on her face.
Now, me, I’m used to strangers’ stares because children with autism, like my son Will, do tend to become the main attraction when they’re upset. I should charge for tickets to “The Will Show” for as long as some people stare at us. When that child is upset, throwing things, hitting, full-body-flailing in the stroller, crying, or all of the above (yes, that happens, and often), people shake their heads at us. They do the “Wow. That’s one bratty kid” double eyebrow raise. They roll their eyes, cluck their tongues, whisper their disapproval to each other, and stare at me with their appalled “Well, I never” expressions when I don’t look adequately humiliated. But we are living in the year 2 A.D. (that’s “After Diagnosis”) in my house, and I’ve had enough time to learn that my kid absolutely has to come first, and explaining ourselves to strangers takes a last-row-of-a-15-passenger-van type of back seat to taking care of his needs.
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