In many ways, Moe and Benj are opposites. Where Benj was a very early reader and talker, Moe is still, at age 4, almost completely non-verbal. Where Benj suffers from sometimes extreme anxiety, Moe handles new situations without fuss, seeming oblivious to expected changes in his behavior. And where Benj is bothered by over-stimulating sensory environments, Moe is a sensory seeker, craving hugs and squeezes, lights and sounds. Our kids are perhaps as different as any two kids, on or off the spectrum, could be.
Benj's mother and I are on the surface also very different. She was born and raised amongst academics and artists in New York City, while I am a Southern California valley girl. While both attended Yale, she studied Romantic poetry, and I was at the School of Management, business being perhaps the very definition of an unromantic pursuit. Yet we share the experience of being the parent of child with special needs, something that transcends our other differences. We share the same worries and fears about our kids being "different." We struggle with the same day to day challenges of new experiences, of wondering if we're doing the right things, of navigating the world of therapy and finding the right school placements. Our marriages strain under the many pressures of raising a special needs child. And many of us, like Gilman, are also raising a typical child.
Gilman uses poetry as a backdrop for her story, primarily quoting Wordsworth throughout the book. Although I found this challenging at times, there were moments when the words resonated with me. Gilman imagined a romantic and carefree childhood, much like her own, for her son. When that seemed as if it were not to be, and later when her father passed away, she felt "like a grownup, in a negative sense, for the first time." She looked back at her past, and how far she's traveled from those younger days, and noted "Two consciousnesses, conscious of myself/And of some other Being." (Wordsworth, Prelude, II.) I have often felt a great divide between who I was before I had Moe, and who I am now, sometimes not recognizing the latter.
Gilman also struggles with the idea that her son is so different from herself. At first, she believes that Benj is just like her husband, as I have believed often that Moe is just like Jeff. But as it became clearer that Benj was not just a bit quirky and precocious, she realized that she was "living with a very different child than I had been." Although no one can control the temperament of their children, we long to see some of ourselves in them, and this can be very difficult to find when your child is on the autism spectrum.
Gilman is a constant fighter and believer in Benj. Perhaps this is seen most poignantly in her search to find the right school placements for Benj, in the highly competitive New York City private school environment. She longs not just for a school that can manage his needs, but also for others to see him as she sees him, wanting people who "cared for and about his soul." She finds such a placement. Gilman is fortunate: so many of us are lucky just to find someplace that will keep are children safe, let alone teach them and love them.
What I appreciated most about this book was Gilman's honesty in her journey toward true acceptance of her son. It wasn't easy to realize that "this is and will be my life - this day-to-day work on and for and with Benj." She learned to reject the expectations society put on her, especially as an academic, and her son, to focus on appreciating and understanding Benj:
My goal as a mother is to never stop fighting that battle for Benj's essential self and to teach him how to fight it on his own behalf.I've always struggled with poetry, despite my years of higher education. But Benj's story, his challenges and triumphs, carried me through. And I appreciated Gilman's love for poetry, using familiar words to carry her through difficult times and finding new meanings within those words. Like Gilman, I too find comfort in words. I find strength reading others' stories, in books and on blogs. But primarily, I find strength by writing my own words as Moe and I continue our journey together.
I have two copies of the book, The Anti-Romantic Child, to give away! Just leave a comment on what you use as sources of strength. Books? Movies? Music? This blog? I'll randomly select two winners on Friday.
I was given a copy of this book by the publisher, though all opinions are my own.
If you want to learn more about hyperlexia, I've been told this book is excellent: When Babies Read: A Practical Guide to Helping Young Children with Hyperlexia, Asperger Syndrome and High-Functioning Autism