July 2012: Cause Warrior Priscilla Gilman

Sometimes being a Cause Warrior is less about being a soldier who fights and more about being a scout and a messenger who clears the way for progress.   Priscilla Gilman, this month’s Cause Warrior, is someone who has been more diplomatic in her efforts to shape the world for her son Benj as his different abilities and perspective have made life in the “typical” world challenging for the whole family. In doing this she has changed the landscape for many parents and educators and has a lot to teach us about collaborating with our friends in the fight to make the world a better place for our kids.

I met this Priscilla online after a mutual friend told me about her book and how the concept of coming to terms with lost expectations was common to both of our works.  Priscilla was planning to be in Colorado this month to promote her book The Anti-Romantic Child, but a family health crisis prevented that.  In fact I am very grateful that she was kind enough to make her deadline despite caring for her ailing mother.  So, let’s all think good thoughts and prayers for Priscilla’s family as we learn from her and about her book.

Amanda: In your book you spoke about giving presentations with your son’s educators about effective parent/professional collaboration for special needs kids.  What has that experience taught you both as an educator and as an advocate for Benj?

Priscilla: In order to be an effective advocate for one’s child, it’s crucial to have a strong working partnership with his or her teachers, therapists, and doctors.  Parents can help contextualize a child’s symptoms or behavior, offer strategies for managing anxiety and coping with physical or emotional difficulties, and point educators towards a child’s strengths, interests, and gifts.  By the same token, in order to be an effective educator of young children, it’s crucial to have open lines of communication with the child’s parents.   Ideally, parent/educator collaboration can be an immensely rewarding and productive experience that results in a child’s being so much better understood, supported, and embraced by all who work with and love him or her.

Amanda: I’ve written and spoken about the difference between “writing to heal,” and “writing to sell.” In a nutshell, no one gets through life with intact expectations or an absence of pain, but not everyone can effectively write, and few are in a mental/emotional position to offer readers more than additional pain.  How did you get to the place where you knew you could offer readers more than your story, and what gifts do you offer readers in your book, The Anti-Romantic Child?

Priscilla: You know, Amanda, I don’t think I ever wrote to sell; I’m truly an accidental memoirist.  Moreover, as both a former English professor and a former literary agent, I think that writing to sell doesn’t make for good books.  I also didn’t write to heal myself and I agree that writing as therapy doesn’t result in good books.

At the most basic level, I wrote to share my experience in the hopes of helping others (parents, autistic people, anyone facing a serious life challenge) feel less alone and of making the world a more hospitable place for Benj and anyone who is a little different or off the norm.   The book emerged out of talks I was giving at conferences and schools, and it emerged organically without a thought towards ultimate publication in book form.

Once my dear friend turned literary agent suggested I turn the talks into a magazine piece, which she then sold as a book proposal, I had to write the entire thing!, and I decided early on not to write with an eye towards persuading or enticing or winning readers but rather with a dedication to honesty and authenticity.  The only way I could tell such an intimate story with the utmost honesty was to write for a few people I knew well and trusted: my agent and my editor.  I almost never thought about how the book would be received by readers more generally; I just told the story as best I could, with as much candor and emotion as possible.

I think that confronting the gap between expectation and reality is a universal story, and that all of us, whether or not we have special needs children or children at all, have had to face disappointment, fear about a loved one’s well-being, or a radical change in circumstance.

As far as gifts that my book offers readers, I’ll leave it to readers to decide!  🙂  But I’ll share some lines from Wordsworth that summarize the gifts Benj has given me:

[He] gave me eyes, . . . [he] gave me ears;
And humble cares, and delicate fears;
A heart, the fountain of sweet tears;
And love, and thought, and joy.

Amanda: In your conclusions you mention how your values have shifted as Benj’s mom.  Part of that surely comes from the acceptance that his challenges are life-long, but how do you think that has changed how you parent your younger son or view education and children in general?

Priscilla: I think a passage from The Anti-Romantic Child is appropriate as an answer to your question!

Just as I have worked to keep Benj “nursed at happy distance from the cares / Of a too-anxious world” (Wordsworth, “Ode,” 1817), so he has helped me to distance myself from that too-anxious world whose values I once shared.  The German romantic Heine’s remark—“What the world seeks and hopes for has now become utterly foreign to my heart”—perfectly describes where I am vis-à-vis my child.  What many people desire for their children—and what I myself once desired— has become utterly foreign to my heart.  A partial list of the milestones and moments of triumph that have mattered most to me: Benj pats his crying baby brother on the head and says “it’s OK, James;” drinks from an open cup without spilling all over himself or screaming in frustration as the juice dribbles down his chin; says “yes” for the first time at three and a half years old; refers to himself as “I” for the first time at a little over 4; says “I love you” for the first time at four and a half; sits in a darkened theatre without panicking to watch a local holiday concert; dances as a Mouse in his kindergarten’s production of The Nutcracker; says “don’t worry, Mommy, I’m just fine,” after he’s fallen and hit his chin, swims the length of a pool unassisted, his little head bobbing determinedly above the water,  cheers James on in a game, says “oh thank you Mommy- I am so pleased with and proud of you for buying me this bowling book!” I can’t imagine obsessing over 1st, 2nd or 3rd tier private schools, the perfect birthday party, sports ability.  How prestigious the schools he’ll attend, how high his scores will be, how many degrees he’ll get, how many grandchildren he’ll give me—I can’t give any of these things a moment’s thought.  As Wordsworth says in the “Intimations Ode”: “Another race hath been, and other palms are won.”

Amanda: Early on in your story, the experts kept telling you, “If only you’d come sooner,” when Benj wasn’t even three years old.  But your pediatrician, whom you trusted and admired, was dismissive of your earliest intuition that something was wrong.  I applaud your grace and acceptance in the book, but  looking back what advice would you give a new mom who has the same suspicions you had?

Priscilla: In her review of my book in the Huffington Post, Ellen Galinsky singled out learning how to trust your instincts and become a stalwart, tenacious, and effective advocate for one’s child as one of the most important lessons of my story.  I hadn’t consciously decided to make this an explicit argument of my book, but in talks and presentations and online interviews that I’ve done, this aspect of my experience has emerged as one of the things people are most interested in and seem to learn most from.  Here’s Ellen Galinsky’s take and her excellent advice:

The second lesson [of The Anti-Romantic Child] is that many well-meaning family members, friends, and professionals will give us advice that doesn’t seem right and we have to learn to trust our own instincts. In Gilman’s case, she suspected that something was not quite right with her son, but everyone assured that all was fine. It can be hard to learn to stand up for our own children against a barrage of advice, but learning to do so also helps us grow as parents. In my own case, there were a number of experiences that helped me learn this tough lesson. The first was when my son came down with pneumonia as an infant and we were told that we couldn’t spend the night with him in the hospital. I obediently followed hospital protocol for that first night but as soon as I saw him the next morning, I knew it had been traumatic. So I gathered my strength to fight the bureaucracy and camped out with him on a chair beside his crib until he was discharged. Like Gilman, all of us can learn that we are the most important advocates for our children. Obviously, we need to advocate in ways that are effective rather than in ways that turn people off, but we need to listen to that voice inside when something really doesn’t feel right. Gilman writes: “My goal as a mother is never to stop fighting that battle for Benj’s essential self and to teach him how to fight it on his own behalf.”

Amanda: Being a Cause Warrior parenting a living child means advocating for that child and also teaching him/her to assume the responsibility of his/her challenges as he/she grows.  This is an area that several parents of children with diverse challenges struggle with because adolescence is a difficult time even for the most “normal” children.  What has you son’s school or interventionists done to help you prepare him to be his own advocate in adolescence and adulthood? What progress or challenges has Benj had with this role?

Priscilla: We’re only just entering this phase- Benj turned 13 in March- but so far I’m cautiously optimistic that in some ways, adolescence will be easier for him, and for us, than it can be for so-called neurotypical children because he is virtually immune to peer pressure, doesn’t feel the need to prove himself or “fit in”, and has a wide range of passions that sustain him and a varied repertoire of strategies for coping with stress and challenge.  He has learned to excuse himself from a room or a situation if it is getting overwhelming for him and to ask politely for someone to stop speaking so loudly, questioning him in a way that makes him uncomfortable, or getting too close to him physically.  He does guided relaxations and uses a fear plan developed by a cognitive behavioral psychologist to help him manage his anxieties.  His school has an extensive and excellent transition program which brings experts and representatives from various professions and colleges to the school to give presentations and answer parents’ questions.

Amanda: You are reluctant to embrace labels for children with learning disabilities because it strips them of their more complex humanity and individuality.  Yet, our healthcare system is constructed to use labels and codes as cogs that make it move.  As a Cause Warrior, how do you think as a society we can change the nature of patient discourse and collaborative care to focus more on the person and less on the disease or label? 

Priscilla: I don’t think services, treatments, and supports should be dependent on a label or category but rather on a person’s complicated and nuanced individual profile of strengths and challenges.  This approach takes more time and effort to develop and maintain but yields far more targeted, compassionate, and effective care.

Amanda: Is there anything else you would like to share with readers about your road to becoming and advocate or how it’s changed your perspective or actions in life?

Priscilla: There is nothing more rewarding to me than hearing that my book, or a talk I give, or a message I send someone, or a quotation I post on Facebook has given another person solace, hope, comfort, and a sense of solidarity.   I plan to devote my professional life to supporting and advocating on behalf of those who need it most and uplifting people with empathy and insight- and literature!

Well, I can’t agree with Priscilla more about the fact that effective writing on challenging circumstances helps build comfort and solidarity and I appreciate her time to share part of her story.  Enjoy the lovely photos she shared below, and you can read my Amazon.com review of The Anti-Romantic Child at the bottom of the page.  Follow Priscilla’s web site for more of her insights about parenting and advocacy.

I have my Cause Warrior lined up for August and have two more I hope to fit in later in the year, but we still have two months in 2012 where I don’t have a planned interview.  If you know a perfect Cause Warrior, please let me know by using the contact form.

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Amanda’s Amazon.com Review for the Anti-Romantic Child

Good memoirs are difficult to find and even more difficult to write. The writer must balance interesting events with a valuable perspective, and communicate his/her insights in a manner and style that engages the reader and offers that reader more than pain. The Unromantic Child is a good memoir that offers teachable moments in an engaging manner. No one gets through life without some measure pain, but the trait that most differentiates a victim from an advocate is perspective. A good writer guides the reader through the painful narrative with profound insights while avoiding self-indulgence.

Gilman does exactly that with her narrative of discovering her intuition and nurturing it. Her intuition tells her that things were not “normal” with her first child. Her diligence and tenacity led her away from a path of pedestrian parenting, which would have failed her son, to an Odyssey of passion and purpose.

Gilman’s contextual filter is her background in poetry and language, and it is also her gift to readers. Gilman uses this filter to reconcile her lost expectations against her reality, in order to appreciate what she has and to guide her child on his own path in life.

The narrative technique of assessing how her own childhood and early perspectives on beloved literature and poetry once informed her world view is a pivot point on which life experience re-informs how Gilman reads and appreciates the same text. Simply stated, as a woman who has suffered the loss of her expectations, Gilman brings new and enhanced value to the texts she loved in her youth through her own life experience. From her new position as a tested mother, she sees the depth and resonance of great writers, whereas before she only saw the beautiful opportunity but not the cost. Now she sees both, and acknowledging the value of beauty both in words and in life only adds to her appreciation.

Gilman’s journey of personal growth is compelling, enlightening, and establishes many opportunities for the reader to borrow from her introspection to assess the difficult circumstances of their own lives.

Amanda Rose Adams

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