Nurturing an Autistic Son’s Spiritual Life, New York Times
Shabbat is a still point in our chaotic world, exactly the sanctuary my son needs it to be.
Why My Autistic Son Must Vote, Chicago Tribune
Just before the New York primary, I received a newsletter from a law firm specializing in elder care and special-needs law. The headline asked, "Are you registered to vote? Are your local voting sites ADA compliant?" That stopped me in my tracks. My 23-year-old autistic son has never voted. In fact, my husband and I have been debating about this ever since our son turned 18 and his special education teacher handed us a voter registration form. It's time. It fact, it's overdue. This year we're registering him to vote. There's too much at stake that directly affects his life.
I hold the same hopes for my autistic son Mickey as I do for my typical son Jon. The same ones any parent has: to have loving friends, good health, work that is meaningful to them, and to live the most satisfying, independent lives they can.
Notes from a Not-so-Empty Nester, Chicago Tribune
Maybe it's just this time of year making me pensive. Summer is ending. Kids are leaving for college. Social media are crammed with articles and advice on how to weather the seismic family shift: "Get Your Heart and Mind Ready." "Loosen the Times That Bind." "How to Navigate What Comes Next."
My autistic son, Mickey, has finished high school. In our state, a developmentally disabled child "exits" the school system at 21. They call it "exiting" — not "graduating." He has "transitioned" — to a Byzantine, chronically underfunded system of government services for disabled adults. Mickey hasn't graduated, exactly. Neither have I.
There’s no road map to navigate raising a child with special needs, but here are some pointers I wish I’d had when I first set out on this journey.
Proving You’re a Good Parent, New York Times
What if a stranger had the power to decide if you were a good enough parent to your autistic child?
Leaving (an Adult) Child for the First Time, New York Times
After the initial euphoria of booking a trip to Paris for our upcoming 30th anniversary, sobering reality sets in.
Making Sense of Death and Autism, New York Times
How do you explain death to your autistic child, when you really don’t understand it yourself?
False Prophets of Autism, New York Times
It’s time the media stop giving airtime to celebrities with no medical credentials who peddle unrealistic hopes to families dealing with a difficult diagnosis.
Healing Our World, Tikkun
“OK, here I go!” our son Mickey said. He stood at the lectern at the front of the synagogue, beaming a megawatt smile at the fifty gathered friends and relatives who had come to celebrate this bar mitzvah day with him. We were completing a journey that had started twelve years earlier, when Mickey’s first speech therapist at Blythedale Children’s Hospital had gently suggested the possibility that he might never speak at all.
Each Passover, I struggle with the Hagaddah passage about the Four Sons. We’re told there is the Wise Child, the Simple, the Wicked, and the Silent. I know they’re meant to be symbolic, but would you want someone labeling your child as the smart one, the stupid one, the trouble-maker, or the one who has nothing to say?
What Does Purim Mean to My Autistic Son?, Jewish Book Council
Purim is one of the many “they tried to kill us, we won, let’s eat” Jewish holidays. But for an autistic child like my son Mickey, Purim is first and foremost a holiday about sensory overload.
The Crucial String, Thinking Person's Guide to Autism
How do you do it? I am often asked. I give the same answer each time. I wasn't given a choice. I just do it, one foot after the other. I have to be his advocate, because as wonderful as his therapists and teachers are, they go home every night. We are his ultimate teachers, the ones who are in it for the long haul. When I look at him, I do not see "autism." I see my child: an animated, endearing, handsome young man with a mischievous sense of humor.
Wandering and Autism, Better After 50
I never heard my cell phone buzz. I’d turned off the ringer during a professional lunch. When I switched it back on, there was a voice message from the director of the program my son attends. “Don’t worry, everything’s fine,” she said. “Mickey wasn’t really lost….”
Touring for "Colleges" with an Autistic Young Adult,Better After 50
Our son understands that college is the step that comes after high school, so “college” is the word we are all using for wherever he goes next. While many of our friends and their children are visiting campuses this spring, my husband and I are doing our own version of the college tour. We are visiting day habilitation programs.
Clothes Make the Man, Autism After 16
It’s 51 degrees out. Which means my 21-year-old son Mickey is wearing shorts and sandals. If we let him, he’d leave the house wearing shorts and sandals in January, and probably without a coat. Which has turned me into the kind of mother who says, “I’m cold so you have to wear a sweater.”
Free to Choose, Autism After 16
The problem with “age appropriate.”
Fast Food Palate, Autism After 16
Maybe it’s unfair to expect him to show self-restraint at the food court. After all, anyone’s steely resolve can crack over a Krispy Kreme donut. How do we convince him that just because it tastes good doesn’t mean it’s good for you?
Clearing the Static, Autism After 16
In middle school he was able to multiply and divide fractions. By high school he struggled with basic addition. Had the seizures caused the loss of these skills—or the drugs?
Gauging Skills, Autism After 16
When Mickey was 19 months old he saw his first speech therapist. She said he had a “mild” delay. Several months later, a different evaluator told us the delay was “severe.” She said, “It’s possible he may never speak at all.” Mickey hadn’t changed; he was still the same loving, lovable little boy with the megawatt smile. Nor had his challenges changed. What had changed? The evaluator.
Saying Goodbye, Autism After 16
I get the news moments before my 21-year-old son Mickey gets home. The biopsy is back: Our 14-year-old cat Fudge has lymphoma. I still manage to greet Mickey cheerfully when he walks through the door. But he knows me too well. “Do you have sad news for me? Is Fudge dead?” So much for the myth that people with autism have no empathy….
Busman's Holiday, Autism After 16
I was looking forward to a day away with my husband, where, by tacit agreement, we weren’t going to talk about autism. Then our Autism Radar went off….
A Corsage for Caroline, Autism After 16
I never expected him to go to a prom. Prom was one of so many things in the litany of what we were told he would never be able to do.
Seeing Clearly, Autism After 16
April wasn’t only Autism Awareness Month. It was National Stress Awareness Month too. Coincidence?
The Way You Look at Him, Autism After 16
It’s April again, that cruelest month. The one where everyone talks a good game about Autism Awareness. But what I’m most acutely aware of today is how people look at him. Still. After all those blue light bulbs and puzzle piece car magnets and T-shirts and rubber bracelets. I’m painfully aware of the stares. And the trying-not-to stares. I don’t know if Mickey notices, but I do. The way they look at my son. It pierces my armor, slicing straight to the heart.
The Wild Card, Autism After 16
“Your son’s had a seizure.” Heart stopping words. It doesn’t matter how many times we’ve gotten that call; I never get used to it.
Don’t Stop Believin’, Autism After 16
Two days before our 19-year-old son Mickey leaves for sleep away camp, he asks to get a haircut. No big deal, right? But 15 years ago this would have been unthinkable.
Autism and Holidays, Huffington Post
The simultaneous comfort and constriction of being with family.
Autism and Empathy, Huffington Post
Why does the myth that autistic people lack empathy persist?
Abusing Legal System to Discriminate Against the Disabled, Huffington Post
Many people view the disabled as "less." Less human. Other. And when you dehumanize someone that way, it becomes acceptable to taunt and sneer and bully and even kill.
Next Steps for an Adult Child with Autism, Huffington Post
There's no book for taking the next step. No Fiske Guide to Colleges. No Barron's. No U.S. News and World Report ranking best vocational opportunities; no handbook rating residential programs for developmentally disabled young adults. We're making it up as we go.
A Clinical Failure, Huffington Post
Our health insurance company said they would no longer cover our son's epilepsy medication unless we switched from the brand name drug to a generic form. They’d only cover it if we put him on the generic and produced "a documented clinical failure." In layman’s words? The insurance company wanted our son to have a seizure.
The R Word, Huffington Post
People use the R word as an all purpose put down. It's hateful trash talk, the ultimate playground zinger.
Those Kids, Huffington Post
My child isn't a mascot, a community project, or a convenient topic for your child’s college essay.