‘The Anti-Romantic Child’ author Priscilla Gilman on having a special needs son
For much of her life, Priscilla Gilman just wanted the people around her to achieve happiness. As a kid, she took on the responsibility of cheering up her father, esteemed literary and drama critic Richard Gilman, who endured bouts of major depression in the wake of his divorce. During her days as a graduate student at Yale University, Priscilla tried to bring out the spirit in a brilliant but aloof, grief-stricken classmate named Richard, who would soon become her husband.
Priscilla did what she could to thrust joy and love upon her friends and family members, so when she found out her firstborn son Benjamin (“Benj”) had a “borderline Asperger’s” developmental disorder, which can cause some to have trouble relating to others, she worried he would never experience relationships and friendships the way most do.
“At times I felt sad because I feared Benj didn’t want or need to connect the way I and others wanted and needed to connect with him,” Gilman wrote in her new book, “The Anti-Romantic Child: A Story of Unexpected Joy,” which hit bookstores earlier in April. “But sometimes I felt sad because I felt so strongly Benj’s desire to connect, to communicate, and thought about how many obstacles there were for him in being able to do that effectively.”
From the time he was an infant, Priscilla sensed something was peculiar about little Benj. He dismissed breastfeeding practices, had an inconsolable crying outburst at a Yale academic event, suffered major social anxiety and “catastrophic thinking,” and obsessed over words. Though Priscilla found his behavior unusual, she didn’t realize he had high-functioning autism until a pre-school admissions director said Benj had done poorly on his visit to the school. Though fixated on numbers and letters, Benj hadn’t responded to the teacher’s greeting or other children in the room. Deeply worried, Priscilla Gilman searched Google and found Benjamin fit the description of someone with hyperlexia, which is a subset of high-functioning Asperger’s or Autism.
Kids with hyperlexia possess a strong and impressive affinity for words and language but often lack basic social skills. Instead of approaching a fellow schoolmate by saying “hello,” Benj might recite the words on the child’s hat. Doing her best to give him a positive academic experience, Gilman filed applications for Benj to attend good schools in Poughkeepsie, New York, but he was rejected by many of them. When Benj did get accepted into a school, his teachers approached Gilman with hostility and anger, claiming her little boy’s social stresses and awkwardness created problems for others. One school official confronted Gilman, grabbed her by the arm, and said things needed to change with Benj. Another teacher remarked on Gilman’s sunny disposition, “You always seem so upbeat and energetic, but I know you must be tired. [Benj will] just wear you out.”
In her new book, Priscilla Gilman discusses having a special needs child, raising two boys, leaving her professorial positions at Yale and Vassar College, her divorce, and turning to William Wordsworth’s poetry for solace in the sea of craziness around her. Sharing details on her first book, Gilman recently agreed to answer 10 questions of The Daily Caller.
1. Before the birth of your second child, were you at all worried about how this change would affect Benj?
Very worried! Every mother expecting her second child naturally worries about how the older one will handle the new arrival, but in my case, these typical fears were heightened by Benj’s special needs, which I’d discovered when I was about four months pregnant with my second baby. How would Benj, who so needed structure and predictability, cope with an unpredictable infant and with a dramatic change in his parents’ routine and the daily life of our household? How would he be able to handle the baby’s crying given his intense sound sensitivity? I worried about not being able to keep up the intense therapeutic work I was doing with Benj once the baby arrived, about being stretched too thin and not able to give either boy the focused care and undivided attention they deserved. Fortunately, Benj surprised us with his relatively easy adjustment to the new little being in our midst!
2. How do classmates treat Benj (who is now 12 years old)? Has he ever been bullied?
Benj attends a specialized school intended for kids who need a small class size and individualized attention. Because each of his classmates has his or her own set of challenges, Benj doesn’t stand out as “the weird one” or “the difficult one.” And because the school works very hard to foster a spirit of camaraderie between the kids and encourages them to be patient with and tolerant of each other’s quirks and idiosyncrasies, to help each other in their weak areas, to be each other’s best advocates, the school actually has less bullying and fewer social tensions than my own mainstream middle school! I have the greatest admiration and gratitude for Benj’s teachers who do so much to promote both acceptance of each child for who he or she is and inspire the kids to root for each other’s growth and success.
At the same time, though, Benj has never had a really deep or intimate friendship with another child, although he is beginning to develop one with a little girl who recently wrote him a card that read:
Happy Birthday party! U are a great friend to me. ur awesome, sweet, sensitive, nice, caring, trustworthy, honest, and smart.
This brought tears to my eyes, as this is the first time anyone has told Benj he is a good friend, and he is all these things she says about him!
Like many quirky kids, Benj is especially vulnerable to bullying, and I’ve always been terrified about this. Benj has difficulty perceiving social cues and picking up on subtle details and nuances of social situations. Because of his difficulty with figurative and abstract language, with tone of voice, he often can’t tell the difference between a joke and a serious remark. He doesn’t have a mean bone in his body, has never told a lie, and is horrified by cruelty or insensitivity. In order to minimize the possibility that he would be singled out or picked on, I’ve always looked for schools with very strong no-teasing policies and teachers who stay on top of this and take steps to avert it at the first sign of trouble — this is one of the most crucial things I would urge parents to look for when considering schools for their kids. Nonetheless, Benj will always be susceptible to teasing and bullying, and we work hard to give him tools for self-advocacy.
3. Do you have advice for parents of children with hyperlexia?
The most important advice I can offer parents is: use your child’s amazing strength with the written word to help address his or her weak areas. Get your child’s attention with letters and numbers in order to teach them about other things or win their compliance with an activity they typically resist. As an example, we used to count Benj’s teeth while we brushed them! Write as much as you can out: routines, expectations for behavior, sequences and steps for tasks and activities the child is learning to perform, reassurances and words of love. Since he was three, Benj has always carried around note cards with helpful reminders and instructions, comforting and supportive phrases. I still write out so much for Benj; he once said to me: “I understand much better if you write it, Mommy, and I feel it better too,” and I think this will always be true for him.
There are some wonderful books available from the Center for Speech and Language Disorders in Elmhurst, Illinois that I used when Benj was first diagnosed; two that were especially helpful to me are called “Reading Too Soon and Hyperlexia: Therapy That Works.” Sadly, the American Hyperlexia Association no longer exists and its website is inactive, but I recently joined a great listserv that offers both support and practical advice to parents of hyperlexic kids.
4. Are children with hyperlexia placed in special needs classes or do they attend courses with all the other kids?
There’s a huge variation here, and it depends not only on the child but also on the area of the country and school district in which the family lives. Some kids in especially strong public school districts can make it in a mainstream classroom with additional supports and/or an aide, some thrive in collaborative team teaching or integrated team teaching settings (in which at least one of the teachers is certified in special education and a sizable percentage of the kids have individualized education programs), and others will do best in special, self-contained classrooms or schools.
5. What is Benj like? Can you tell me about some of his interests? What does he dislike? Does he have any favorite/least favorite academic subjects? Is he in junior high school?
Benj is a very tall, very responsible and organized, very sweet and endearing sixth grader whose biggest passions are music, computers, and sports. He’s a gifted and sensitive musician: he’s been playing classical guitar since he was six and recently took up piano, and he loves to sing. One of my favorite things to do with him is sing while he plays the guitar and harmonizes or improvises with me. For his fifth grade graduation present, I took him to see Carole King and James Taylor at Madison Square Garden, and according to him, that was one of the greatest experiences of his life. One of his most beloved possessions is his iPod, and his musical tastes tend toward classic rock, blues, folk, and indie — recently he had to make a mix CD for a school dance, and his included no contemporary pop but instead music by Radiohead, the Levon Helm Band, the Dead, the Stones, the Who, Elton John, Bruce Springsteen, the Shins, and Tom Petty! He loves strategy games like chess and Settlers of Catan. He usually wakes up early to read the New York Times sports, weather, and business sections and do the kenken or sudoku puzzles in peace before the rest of us are awake. He’s a huge sports fan — his teams are the New York Giants and the Yankees (my father would be aghast at this as we were ardent Mets fans), and he also follows hockey, tennis (especially the Williams sisters and Roger Federer), golf, and even bowling. He is fascinated by and very proficient with computers — he’s my go-to guy when I have a new gadget to get up and running or need something adjusted on my Mac. His favorite academic subject has typically been math, but he’s recently become very interested in his interdisciplinary humanities class in which he’s studying Rome and Greece.
6. What is your other son like?
James, who’s now 8, is in so many ways the opposite of Benj: Benj is pragmatic, James is romantic; Benj loves facts and figures, James loves legends and myths; Benj is cautious, James is unabashed and adventurous, Benj is orderly; James definitely colors outside the lines! James has had to cope with his own set of challenges — severe fine motor delays diagnosed when he was three, sensory sensitivities, and now mild dyslexia (with particular trouble in spelling!) and mild ADD, and he’s come amazingly far. He’s very emotionally expressive, physically affectionate, and creatively ingenious. He loves to act and dance, make up songs and stories, paint and draw, and is training for his black belt in karate.
7. How does Benj interact with his little brother?
Watching and encouraging, supporting and marveling at Benj and James’ relationship has been one of the greatest joys of my life. They are in so many ways polar opposites — I often call Benj Mr. Realism and Jamesie Mr. Romance — and they’ve been each other’s best therapy! I tell my friends that I sometimes feel like I live with Ernie and Bert. My exuberant, fun-loving, irrepressible, mischievous, charismatic Jamesie and my meticulous, obsessive, cautious, eccentric, good egg Benj remind me so much of that Sesame Street duo. It’s challenging but also extremely fun and rewarding to be the mother of a latter-day Ernie and Bert!
8. Have you thought about Benj’s future high school experiences? Are you concerned at all about what is ahead? Are you worried about how he’ll do academically and socially?
I’m so fortunate to have Benj in a truly wonderful 6th-12th grade school; he’s in his first year, and can continue there through high school. The school provides him with a challenging academic curriculum, gives him all kinds of therapeutic and social supports, and surrounds him with a nice cohort of peers. Ever since we first learned about Benj’s special needs, anxiety about his schooling was consuming for both me and my ex-husband, and the day Benj was accepted at this school, I burst into tears of relief. Of course, I still have concerns, especially about his increasing awareness that he is very different from most pre-teen and teenage boys, and about how he will cope with the increasingly complex linguistic demands of high school level work. But in general, being Benj’s mother has helped me to live much more in the present, so I try to take school one year at a time: to focus on making his experience each year as rich and satisfying as it can possibly be. His life after high school is what I’m most concerned about, and I hope that in the years before we reach that point I can do as much as possible to help with the development of more compassionate and helpful support systems at colleges and universities, better job training and career outreach programs, more organizations to assist young adults on the autism spectrum (and all young adults with developmental and physical disabilities) in finding congenial housing situations, participating fully in their communities, and navigating life with as much independence and satisfaction as possible.
9. Do Benjamin and James know about this book?
In order to both preserve their privacy and keep their lives as normal as possible, I’ve tried to play it very low-key for the boys, advising their teachers, therapists, and family friends not to bring up the book with them or make a big deal out of it. Benj especially doesn’t like to “stand out” and would not want a fuss made over him, and I didn’t want James to feel that there was too much focus on or celebration of Benj in a way that might make him feel slighted. The night before the Newsweek article was published, I showed both boys the finished book. James oohed and ahhed over the nice paper and the author photo, and cried: “I am so proud of Mama with her beautiful first book!” Benj quietly took the book in his hands. “It’s a story about me, right, Mommy?” he asked. “That’s right, sweetheart,” I replied. “So does that mean that I’m ‘unexpected joy’?” “Yes, Benji,” I said, a little tearily, “it absolutely does.”
10. Did your father know the full extent of Benj’s learning delays? In your book, you say you didn’t want to burden your father with details on Benj, but was he made aware of the situation in your family life before he died?
No, I was never able to have this conversation with my father, who was gravely ill with stage IV lung cancer when Benj’s issues were first identified. About a year after the discovery that Benj was hyperlexic, I did tell my stepmother all we’d been through, partly as a way of explaining why I hadn’t been able to travel to Japan to see them, but she chose not to share the information with my father, who by that point was virtually non-communicative and whose level of consciousness was unclear. I know that had I been able to share details of the situation with him, my father would have been both devastated and a great source of consolation and reassurance. In both his professional and personal lives, my father was a passionate champion of the unconventional and a fascinating combination of romantic and realist. The other night, I was re-reading the program from his memorial service, and was struck by how much this quotation from his 1974 book “The Making of Modern Drama” echoes one of the most important messages of my book: my father praises Chekhov’s “insight into the way in which time . . . forces us, or would if we would recognize the coercion as liberating, into a confrontation with the exact, and not the hoped for, quality of our lives.”
WATCH: Gilman explains her first book, her love for writer William Wordsworth and how he shaped her life experiences