I started blogging seven summers ago with the aim of jump-starting the writing of a book about our adventures, our journey, raising our 15 1/2 year old autistic son Charlie. I’ve gone a lot further with blogging than I ever thought I would but with another summer drawing to a close, the book about Charlie remains unwritten.
One reason is that, I can’t figure out what the end point would be as, everyday, Charlie changes and so whatever might be the focus of a book about him does too.
Another is that, in contrast to when Charlie was diagnosed with autism in July of 1999 at the age of two, there are far more books (not to mention blogs) about children on the autism spectrum and with disabilities and by autistic authors, just as there are far more individuals diagnosed with an autism spectrum disorder today.
As a mother, I’ve been especially drawn to books by women whose children have disabilities. Regardless of a child’s diagnosis, their experiences –their lives full of meetings with special ed personnel, specialists’ appointments and worry about how to fill long hours for children who struggle mightily with peer relationships — are mine. Here are three books, all by mothers, that have resonated with me as I contemplate the start of another school year for my beloved boy.
Photo by the author
1. Autism in Girls and Parents As Advocates
In Parenting Girls on the Spectrum: Overcoming the Challenges and Celebrating the Gifts (Jessica Kingsley Publishers 2012), Eileen Riley-Hall writes about her two daughters, Lizzie, who has Asperger’s Syndrome, and Caroline, who is a few years younger and who is on the autism spectrum. Lizzie is the same age as my son, who is moderately to severely autistic. I can see how different our same-aged children are and yet how much the same, as both are now in the (often not too fun!) teenager years with all the woes (skin problems, hormones) of that age.
It is a compelling reminder that autism is a spectrum disorder, in which children have many of the same struggles in communication, social interactions and behavior (especially repetitive ones), but in different degrees.
The majority of individuals with autism spectrum disorders (ASDs) are male. Riley-Hall’s book makes a strong case for how autism can present itself different in girls (for instance, girls on the spectrum like to play imaginatively and do seek to be social, pp. 40-1). Parenting Girls on the Spectrum is organized in sections about education, friends, siblings, causes and treatments, “autism truths and myths,” “dark moments,” “special gifts” and more, with each chapter concluding with a helpful set of bullet points that sum up the “heart of the matter.”
I particularly enjoyed Riley-Hall’s narratives of her daughters, of Caroline being her class’s representative in a school-wide spelling bee (p. 72), her refusal to wear anything but one jumper (with the “Aristocat” Marie on it, pp. 162-3) for several months and her learning about empathy from Charlie Brown cartoons (p. 78) ; of Lizzie “rehearsing social lessons through her dolls” (including Piglet, p. 77), her love of musicals and her overcoming disaster to perform in a seventh grade show (p. 84-5) and her efforts to work through insisting that the television could not be turned on at night after once seeing a show about bugs at night that terrified her (pp. 218-9).
Riley-Hall’s perspective as mother, advocate and teacher (of students with disabilities and without) comes through clearly, so that reading Parenting Girls on the Spectrum is like having a conversation about the author’s advice and personal experiences.
2. What Can Wordsworth Tell Us Raising Different Kids?
Priscilla Gilman‘s The Anti-Romantic Child: A Memoir of Unexpected Joy (Harper Collins 2011) was of especial interest to me as the book integrates extensive discussion of poetry (that of the 19th century British Romantic poet, Williams Wordsworth) with a deeply felt account of the childhood of Benj, the author’s older son. Diagnosed at a young age with hyperlexia, Benj can recognize letters and read as a toddler, but struggles mightily to grasp the meaning of what he reads so fluently.
Gilman intertwines her narrative of detecting Benj’s diagnosis, finding him schools, dealing with too many doctors and professionals and nurturing his quirks and challenges with an account of her own idyllic, then sorrowful, childhood after her parents’ divorce, her education in college and graduate school studying literature and her efforts (almost too familiar to me) to juggle raising a child with many extra needs while beginning an academic teaching career in Connecticut. Also recounted, with careful intimacy, is her falling in love with and marriage to a fellow literature graduate student, Benj’s and her younger son’s father, and how that first marriage ends.
Quotations from Wordsworth are seeded throughout The Anti-Romantic Child and play a part not only in revealing the author’s feelings and impressions. “Questions, directions, warnings and advice, / Flowed in upon me from all sides” (Prelude III), Gilman quotes Wordsworth after learning of Benj’s diagnosis and saying that “my dream of Benj’s happy life had disappeared” (p. 100).
In poems such as Prelude and “Intimations Ode,” Wordsworth writes about childhood as a golden, glorious-hued time of special knowledge (e.g., p. 33, 35, 100). Raising Benj, Gilman comes called to reexamine her own conceptions of childhood as such an idealized state.
So is Benj an “anti-romantic” child, not in that he cannot be “romantic” in the sense of not being able to love; he is clearly, as Gilman writes, a boy of many feelings. By the end of her memoir, Gilman reveals how her experience as Benj’s mother has overturned those earlier ideas with a reality that, she steadfastly asserts, has actually “reaffirmed” her “romantic ideals” and gotten her “more in touch with a profound kind of romanticism; I have been given access to a transcendent sense of mystery and awe and wonder” (p. 268-269).
3. What is the Good Life and How Can I Provide It For My Child For His Whole Life?
Like Riley-Hall’s and Gilman’s books, Donna Thomson‘s The Four Walls of My Freedom (McArthur & Company 2010) is a memoir by a mother who, confronting the unexpected experience of raising a child with disabilities — her son Nicholas, born in 1988, has cerebral palsy and multiple disabilities — is transformed and sees the world in a new light. Seeking to write something besides “another piece of misery porn or worse still, inspirational lit” (p. 33), Thomson explores how persons with disabilities can live a “decent and valued life”; can lead a good life.
This is a question that my husband Jim and I consider central as Charlie, who will need lifelong care, grows up. Thomson’s husband, James Wright, is former High Commissioner of Canada to the UK and she notes that the “peripatetic lifestyle of diplomacy” (p. 33) taught her much about what it is to live with “limited freedoms” and the “value of resilience and creativity when faced with oppression.” Thomson draws on the ideas of human freedom and potential of Nobel Prize-winning economist Amartya Sen and, specifically, his “Capability Approach,”
“that social arrangements should expand people’s capabilities, or their freedom to promote whatever activities and lifestyle they value” (p. 35)
Thomson’s concern is not simply “what is a good life” for an individual with disabilities, but how can such be provided (p. 46)?
To this end, interspersed with her advocating for Nick’s education in Canada and the UK and caring for him through hospitalizations and surgeries, Thomson describes how she and other parents developed the PLAN (Planned Lifetime Advocacy Networks) model to support children with disabilities. “Caring relationships” with other people are key as is a place to live and “the ability to make a contribution to society” (p. 51).
But Thomson truly takes the long view and considers how to fund, through government policies and programs and family’s private contributions, such a life (discussed at length in ch. 17, “Good Ideas and Practical Solutions”). One such financial tool is the Canadian Registered Disabilities Saving Plan, which is meant to “transform the lives of people with disabilities from victims and consumers of tax dollars to contributing participants” by making it possible for families to plan for the long-term financial needs of a loved one with disabilities (p. 190).
Planning for an adult child with complex needs after we are gone is a daunting and potentially terrifying task. The Four Walls of My Freedom, which confronts questions of what society’s role is in supporting those with disabilities from both personal and philosophical angles, gives me a sense of how we might carve out a future for Charlie, enlisting the advocacy skills we have gained through love, hard work and fortitude we did not know we had until the “mystery and awe and wonder” of caring for our children showed us.
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Photo of the author’s husband and son via Flickr