Living With Autism
Life on the spectrum in Westchester.
At Easter 2001, the writer got her son, James (then 2 1/2), this sailor’s outfit, but when he put on his shoes he cried uncontrollably. Years later he explained, “Those shoes hurt me.” The writer and her husband didn’t know at the time that James was experiencing “tactile issues.”
“We think your son has autism.” With those six words, my world was turned upside down. Up until that point, everything was on track for the life I’d always envisioned. I was married, had a great job, my husband and I owned a house in Westchester, and we had two beautiful, healthy children. Now, a pediatric psychologist, sent from Early Intervention, had drastically altered my dream.
We moved to Westchester from the Upper West Side when James was 10 months old. We were attracted to our Hudson River town because of the community (artsy, liberal), the playgrounds, and the schools. Little did we know it was a district’s special-education program that would be the most important factor for us once James was school-age.
Our journey with autism began when I took our daughter, Elizabeth, to the pediatrician for her six-month checkup. I had just dropped off James, two-and-a-half, at daycare and noticed that his classmates were speaking in sentences. James mainly said one- or two-word phrases: “water,” “Play-Doh,” “outside.” I asked the pediatrician if I should be worried. He assured me that kids learned to speak at different rates, but, if I was concerned, I should call Early Intervention. I called and left my information.
While we were waiting to hear back from a caseworker, we got a “report card” from the daycare. James had gotten “excellent” in almost every category. When the caseworker called, I said I didn’t think we needed assistance. She didn’t let me off the hook so easily. She asked me about my pregnancy (full-term and no complications); our health history; James’s health history (chronic ear infections from 12 to 18 months; digestive problems; a dairy allergy); and his development (normal except for the speech delay). When she said the agency would send a speech therapist, child psychologist, and occupational therapist to our home, I was perplexed. Why a team? I was only calling about his speech.
The family’s trip to Coney Island, May, 2008, when James was 9, and Elizabeth 7. James loves going to—and drawing—amusement parks. The Wonder Wheel is one of his favorite structures.
A few weeks later, a psychologist and speech therapist from The Children’s School for Early Development in Hawthorne came for the evaluation. More than two hours later, they said they would write up separate reports—and then dropped the bombshell: James, they thought, had autism.
I called my husband in tears. I didn’t know much about autism, but James didn’t fit the profile: he wasn’t in his own world, he didn’t make repetitive movements, he made decent eye contact. I read more about the disorder and found out just how broad the Autistic Spectrum is. Today, according to Autism Speaks, one in 150 individuals is diagnosed with autism.
I understood more when we got the report. The psychiatrist had noticed things that we hadn’t. James’s attention and engagement in structured tasks was limited, his eye contact was fleeting, he focused on arranging and rearranging items when playing, he did not consistently respond to his name, and, as we did know, he used single words or two-word phrases. Suddenly, James’s fondness for arranging the spices in our cabinet didn’t seem cute but obsessive. And the rock that he liked to hold all day was a sign of his “sensory integration dysfunction,” not something adorable like Linus and his security blanket. He showed moderate delays in cognitive skills and expressive language, and tested moderately low in socialization. Basically, he was a 31-month-old who acted like a 19-month-old. There were enough delays in enough areas to get the diagnosis of PDD-NOS (Pervasive Development Disorder, Not Otherwise Specified), an Autistic Spectrum Disorder.
At 15 months, James was the picture of the perfect child. He appeared to be developing at a normal rate, both physically and cognitively. It was too soon for his parents to tell that he had speech delays.
Shortly afterwards, we had a meeting at the Department of Health. They asked us about our goals for the next six to 12 months. It took me only a few seconds. “I want him to look me in the eye when I walk in the room and say, ‘Hi Mommy.’” Other goals included initiating play, focusing on tasks, working through problems, and being comfortable not holding an object (his rock), while building his communication skills. It was recommended that he either attend a preschool for children with autism or have a trained aide shadow him at daycare for 25 hours a week. We all agreed keeping him around his peers, who would serve as good role models, was the better track to take. He’d receive occupational therapy twice a week and speech therapy three times a week. We also had a social worker monthly so we could learn how to work with James and discuss any problems.
I worried that the daycare would not be willing to have James’s new team of specialists in and out of the center. But they were relieved. It turns out they were concerned about James but didn’t want to worry us! We were furious. We felt they’d let us down by not relaying their concerns. Not only did we want to know, we wanted other parents to know. We gave the center permission to explain to other parents about James’s autism. I wanted people to be able to put a face to autism. I had never met a child with the disorder before and certainly never would think a boy like James had it. My happy, funny, peek-a-boo loving two-year-old didn’t fit the model in my head of that boy from the TV movie in the ’70s who sat in a room by himself and spun plates all day.
Through the Children’s School, James was taught—via a method, ABA, using repetition and rewards—speech, daily living skills, and how to play with other children. The Children’s School also told us about programs in the county for families affected by autism. I went to a nutrition seminar, where I was “introduced to” a “developmental pediatrician who specializes in autism”—who also happened to be one of James’s pediatricians. I didn’t know that was his specialty; he didn’t know about James’s diagnosis. I thought James’s reports were sent to his office. We learned then the importance of following up. We also got on track with a variety of vitamins, supplements, and a gluten-/casein-free diet for James.
Within six months, James was improving. He had learned how to say, “Hi, Mommy” when I came in the room. Then his therapists taught him how to generalize the greeting and say it to other people. Soon he was thought to be the friendliest child at daycare.
Ready for School
The service continued for two more years, and then James was kindergarten age. At the time, our town’s school district did not have a program for children with autism. Where would he go?
Luckily, we found an ABA program at Ossining’s Park School, its public K-1 school, where James would be in a class of eight with one ABA-trained teacher and personal aides for each child and spend part of the day in a general education class with his aide.
James ended up spending three years at Park. (He repeated kindergarten so he could spend more time in the general-education class the second year). For second grade, he was ready to come back “home.” By this time, our town’s elementary school had begun its own collaborative classes—using Ossining as one of its models—so we and the school district agreed to bring him into the district for second grade—where he could go to school with his sister (now entering first grade).
It was when James was in second grade that we made a discovery that has helped us immensely in his treatment. One day, he had to go to school late but couldn’t walk into his class. He burst into tears. His heart was racing. “I want to be happy, like everyone in there,” he said. “I just can’t.” A few weeks later, while trick-or-treating, a neighbor let him pick two Starbursts. He wanted four, so he could have all the colors. The neighbor remained firm. Again, the panic attack.
Both of these occasions made us wonder if what James was really suffering from was an anxiety or obsessive-compulsive disorder. He was very picky about food, clothes, and the route we took to drive somewhere. He had become afraid of going to the playground because the other kids scared him. He couldn’t leave the dining room without pushing in all of the chairs. It took him an hour to make his bed because it had to be perfect. We were hopeful. After all, these conditions are treatable. Autism isn’t.
Our pediatrician recommended a psychiatrist, who put James on an anti-depressant/anti-anxiety medication but said James’s anxiety is just one of the symptoms of his autism—like a fever isn’t the disease itself, just a symptom of an illness. Still, the medication helped him enormously.
At the Croton Dam last October.
To Tell Or Not to Tell
I have always believed in being open. I have faith that people will be kinder to James if they understand him and not fear the label. So far I have not been disappointed.
When James was in third grade, we became concerned about how he was fitting in at school. He had never been popular—in his five-and-a-half years of public school, he has only been invited to a handful of play dates and birthday parties. Would he be bullied and teased? How could we protect him from this?
I thought I got our answer when a letter was sent home from a parent of a child in the class who had a peanut allergy. It went into specifics about his allergy and what we could do to make the classroom a safe environment. It occurred to me that I could handle James’s autism the same way. If I was open with the other parents about his disorder, perhaps they could explain it to their children, and they would have a better understanding of their classmate.
So I wrote the letter, and included a line that said, “If your child is ever looking for someone to ride a bike or take a hike with—or even invite to a birthday party—please keep James in mind.” I showed the letter to his “team” at school and was surprised by their responses: for whose benefit was the letter? My husband—who is far more skeptical (he would say “realistic”) than I—had to agree. After all, was it James who wanted the play dates, or was it what I wanted for him? Despite my belief that being open is the best policy, I couldn’t be sure that the letter would help him. I never sent it.
Today, James is a happy, healthy fourth grader. He may not be in Little League, but he can climb up Turkey Mountain or run around Teatown’s lake trail faster than anyone. He’s below grade level in math and reading, but he is a gifted artist and his three-dimensional drawings are practically as good as an engineering student’s. Prom is a definite possibility, as he loves dance parties and is tall, handsome, and polite to girls. As far as college, marriage, and children, it’s just too soon to tell. But, at this moment, he’s living a life not too far from the one I envisioned. And most important, he not only says, “Hi Mom and Dad,” when we walk in the room, but he gives us big hugs and tells us that he loves us every day.
Kathryn Walsh is the editorial manager of In Touch Weekly. She lives in Westchester with her husband, two children, two cats, and two au pairs (one is a former au pair who technically doesn’t live there anymore, but would be offended to not be listed as a member of the family).
If you think your child has learning delays, contact the Westchester County Department of Health for early intervention (for 0-3 years old) at (914) 813-5094. For pre-school children contact your school district and ask for the Committee on Pre-school Education (CPSE).
The following Westchester services and providers have been helpful to us or have helped others we know:
The Children’s School for Early Development
Fran Porcaro, Assistant Executive Director, Educational Services (914) 347-3227
Children’s School is the largest provider of community-based services for children with developmental disabilities in Westchester.
Stephen Cowan, MD
Holistic Developmental Pediatrics
Dr. Stephen Cowan specializes in the diagnosis and treatment of chronic pediatric disorders.
Renee Simon, Board-Certified and Licensed Clinical Nutritionist
(914) 763-9107, totalwellnessnutrition.com.
Danny Bernstein, firstname.lastname@example.org (914) 304-4052, byardsports.com
Backyard Sports Plus offers special-needs children (ages 5-15) a safe and appropriately competitive program to learn and enjoy athletics.
Hawthorne (914) 592-2324
The longest-running gymnastics training center in Westchester has two classes on Sunday mornings for children with autistic spectrum disorder.
Kidabilities Occupational and Physical Therapy
Hawthorne (914) 347-5990
This private practice is dedicated to helping children with special challenges develop new skills and positive self images.
Navigating the Spectrum
35 E Grassy Sprain Rd, Ste 100 Yonkers
This not-for-profit organization offers a forum for families of children with Autism Spectrum Disorder to gain information about therapy options, share intervention approaches, and much more.
Nor-West Regional Special Services
Cortlandt Manor (914) 737-4797
Nor-West provides community-based therapeutic recreation programs and transportation services to persons with differing abilities residing in the county’s northwestern section.