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Critical Decisions

In 1991, when my daughter was 12 months old, she received the first of several autism labels: Pervasive Developmental Disorder. She started speech, occupational and play therapy, and saw Dr. Stanley Greenspan monthly, where we learned about “floor time” and “closing circles.”

“Therapy” informed every aspect of my relationship with Samantha. In the playground, I pushed her on swings until my arms ached because swinging both stimulated and calmed her. At home I rubbed her skin with a corn brush and encouraged jumping on a mini-trampoline to stimulate her vestibular system. But until Samantha was 7—and literally tearing her hair out—I didn’t try Applied Behavioral Analysis (ABA). ABA is currently credited as an extremely effective treatment for ASDs, but in 1991, ABA seemed “mean,” and some therapists discouraged us from trying it. Of course these “experts” didn’t LIVE with my difficult daughter 24/7. Against doctor’s advice, I hired an ABA team. This wasn’t the first time I didn’t listen to doctors, nor would it be the last.

Trusting Your Instincts
The most important decision parents can make is to trust their own instincts and stay positive. If a doctor or therapist says your child will never drive a car, attend college or marry, find a new therapist. Obviously, children with serious social and language challenges might not achieve these goals. But if YOU don’t stay positive and determined, how can your child persevere? Believe me, plenty of doctors, psychiatrists and school directors predicted Samantha would be institutionalized. So far the nay-sayers have been wrong about everything except driving. While Samantha is still single, she graduated cum laude from Pace University and has enjoyed a serious relationship with her boyfriend for over two years.

No one has a crystal ball. None of the teachers, therapists or advisors could predict Samantha’s trajectory. The best among them said: “I can’t tell you how far she will go—only that she hasn’t hit her ceiling yet.” I didn’t expect (nor did I receive) a happily-ever-after prediction, but at least the possibility was always open.

Flexibility
Giving your child the best chance of reaching their full potential means staying flexible and studying all options. One important early decision is: Should your child attend a regular preschool to benefit from interacting with neurotypical peers who serve as role models? Would a shadow teacher help? What about supportive therapies after school? Will your child on the spectrum fare better with full immersion in a Special Ed school— receiving ABA, OT, and speech therapy with teachers who specialize in autism? There is no right answer. Parents should hear out experts, but follow their own intuition.

Following Your Intuition to the right school
When you look at a new school, can you imagine your child in that classroom? Will your temperamental toddler be comfortable with neurotypical three-year olds, or feel hopelessly left behind and (possibly) bullied? Samantha spent her first two years in a mainstream nursery school with her twin brother, Matt. At the time, parenting literature advised keeping twins together, so they wouldn’t suffer a double separation (from mom and each other). Maybe that advice works well for neurotypical twins, but not for mine.

Matt always helped Samantha hang up her coat, put her lunch box in her cubby etc. As a result, she wasn’t learning these skills independently. On parents’ day, we saw the class moving too fast for our daughter, like cars cruising at the speed limit while she lagged behind, dazed and confused, stuck in traffic. As Samantha’s caretaker, Matt was forced to slow down too. Social etiquette for twins required inviting both kids on a playdate. With Samantha often in her own world and subject to unpredictable meltdowns, invitations to other people’s houses were less frequent, limiting options for our son.

All of Samantha’s spare time after school (and much of mine) involved therapy. One day, en route to therapy through Central Park, she asked: “When can we go on the swings?” That was when I realized Samantha needed a special school, to learn at her pace, receive the therapy she needed and still have time to enjoy the swings. Like many parents, I worried about the stigma of a “special” school, but ultimately, that was the right decision for Samantha. Of course, “the right decision” for your child might be to move out of a “special” school (because they’re not sufficiently challenged, or they’re being used as a role model for lower functioning kids). In my opinion, the best school for an ASD kid has students at or ABOVE your child’s level—comparable to a good tennis match.

Developing Strengths
While helping Samantha with her challenges, I also wanted her to develop and enjoy her strengths. At age 7, we learned Samantha had perfect pitch, and by 10 she was mature enough for singing lessons. She liked to repetitively tie laces and shoulder straps into intricate knots so we taught her knitting, crocheting and needle point. Our daughter was proud of her creations, and they were socially appropriate alternatives to ruining my shoulder bags or anxiously ripping her fingernails. Samantha could then share her interest in crafts with other little girls on playdates. She also LOVED swimming, so we gave her lessons. We wanted our daughter to be safe AND independently enjoy hours in a pool or ocean. As an added benefit, swimming was the only sport where Samantha could outperform her brother, and it delighted her to win races.

As a premature twin with weak motor skills and loopy script, it was important for Samantha to learn computer skills. Would writing more clearly help her think more clearly? I thought so. I also knew that if Samantha became comfortable on the computer, one day she would be more likely to fulfill HER dream of going to college, emailing and using Facebook like her twin brother.

Advocate!
Be the strongest, loudest, most persistent advocate you can. Don’t let your insurance company or the Board of Education wear you down. If funding is in short supply, be prepared to fight for it. As an advocate for Samantha, I learned to be tough. Luckily, my husband is an attorney, enabling us to sue the Board of Education—and win—for 12 consecutive years. My husband also went the extra fathering mile when Samantha got waitlisted at preschool. Showing up with photos of our daughter, he caused school directors to feel personally connected to her, and she received the very next opening. Thinking outside the box helps you stay ahead of the crowd clamoring for limited resources.

Finally, as adults, your grown ASD children remember your efforts and model them to cultivate the courage and skill to advocate for themselves. My daughter auditioned for years before winning the role of Sarah in the film “Keep the Change.” Currently a member of DreamStreet Theater, Samantha sings solo in cabarets. Who knows where she’ll go next?

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