Some books you read and forget about before you've even put it down. Some you cast aside midway through. Every now and then, though, you find a rare gift of a book that continues to move you days, weeks (and those really wonderful ones: years) later. Priscilla Gilman's book is certainly one of those rare ones with the power to move a person days and weeks later. It's too early to tell whether that will remain so, but I strongly suspect it will be one that remains a treasured book years from now for me. And sure, I'm biased: I sense a kindred spirit in Priscilla, a kindred love of words, of poets, of language in general, and for the majesty and transport that the specific melding of words by a skilled craftsman can bring a person. But even if you're not an English instructor (or a lover of Wordsworth), I bet you, too, will be touched by Gilman's journey, by her son Benj and how their family comes to terms with Benj's unique issues and gifts and finds a way for them to all excel and find their places to shine.
You don't have to take my word that this is a book you want on your shelves (her book remains on my ottoman, close by so that I can grab it and read from it again); you can read this lovely Q&A with Priscilla and leave a comment (both here and at the Autism Blogs Directory) in order to be entered into a drawing to win your very own The Anti-Romantic Child. Kathleen will draw randomly from a bag with commenter's names from this post one week from today (May 16) and I'll do the same for commenters over at Countering and two lucky people will have their own copies!
You write in your eloquent and often brutally honest memoir, of Benjamin, "Will he ever experience genuine intimacy? Will he ever be real?" In the early stages of dealing with the loss of expectations and dreams, although it is quickly becoming un-PC to express this sense of loss and the very real grief that accompanies it, these are very understandable feelings. At what point in your journey did you realize that although your perceptions of him had changed, that he had not, that he was just as real as he had always been? Is this still an area where you struggle, to accept the difference between the ideal and the real? From my own parenting experiences, I can relate that I've found acceptance is an ongoing experience, that I often smack up against my expectations and reality and have to push past it. It gets easier over time, but it still can surprise me by popping up again.
When I wondered to myself: "will he ever be real?", it was in the context of great progress Benj was making in speech therapy as he memorized answers to regularly-asked questions and learned conventional phrases for social interaction. Although I was happy that he was becoming better equipped to participate in social exchange, I worried that the patterned language and scripts we were teaching him would in a sense reinforce the rote-like quality of his exchanges and not address his core difficulties. I didn't just want him to be able to "get by," "pass," or tenuously "fit in." I wanted to help him with flexibility, spontaneity, being in the moment. I wanted to maximize the chances that he'd be able to connect with people below the surface level of casual conversation, to develop the ability to empathize with others and share his own feelings- whether of anxiety or of joy. This is why I was so drawn to the work of Stanley Greenspan and his idea of floor time; his book The Child With Special Needs was probably the single most important one that I read in those early days. Even as change-averse little Benj resisted our attempts to surprise him in play, and touch and mess-averse little Benj shied away from textures, activities, and hugs, we forged on with our efforts to help him become better able to tolerate uncertainty and more comfortable with being in the world, with all its wonderful unpredictability.
There are definitely still times when I catch myself wanting something for Benj that he may not have in the way I'd hoped for him. It's never around things like grades, sports trophies, or conventional successes of that kind. It's more like moments when he's "inappropriate" in a social situation and I worry that others may be annoyed or turned off by him, times he brushes off someone's friendly or loving overtures and I worry about their ability to keep loving him in the absence of reciprocation. Or seeing other kids his age in laughing groups; remembering how much I enjoyed my close relationships to my friends as a pre-teenager; hearing about other people's children enjoying their sleep-away camps (not a possibility for Benj at this stage).
While the way autistic individuals and hyperlexics communicate and relate may be different, they can and do form genuinely intimate relationships, although it may require the non-autistic, non-hyperlexic person in the relationship to let go of romantic ideals. Did this realization happen for you suddenly or was it something that took time to take shape? You write that you had to leave your marriage in order to be able to get back to a healthy relationship with your husband and to be able to appreciate him and that you worried about how your son would see that as an indictment of who he was, too. Has that gotten easier over the years, to see that the relationship is there, even if it's different than what you had wanted and hoped for?
Intimacy looks different for Benj than it does for me; it may not take the form of long conversations about feelings, but instead be forged in our singing together as he plays guitar, our reading to ourselves side by side on the couch, making an online order together, or having him explain a computer program he's especially taken with to me. But Benj has also made incredible strides in his ability to connect with others in more conventional ways. He's actually a big hugger now, says "I love you" often, and perhaps because he's received so much explicit instruction in social exchange and so much empathy training, he's a great comforter of hurt people- he never fails to make my boyfriend's daughter feel better when he runs to kiss her head and awkwardly put his arms around her if she's crying or sad.
Benj has taught me so much about the importance of space in our intimate relationships. One of my favorite quotations from the German poet Rilke has taken on new resonance in light of my experience with Benj: "Once the realization is accepted that even between the closest human beings infinite distances continue to exist, a wonderful living side by side can grow up, if they succeed in loving the distance between them which makes it possible for each to see the other whole against the sky." He's taught me about the importance of developing a supple and open mind not only with respect to our children but also with respect to our relationship with any person whose otherness is at first disorienting.
As far as my leaving my marriage, none of my fears during those years of agonizing about the decision have been borne out. I don't think the children see our marriage ending as in any way an indictment of either Richard or Benj. What we told and continue to tell the kids in order to explain our divorce is that we weren't right for each other as romantic partners, but that we respect, admire, and appreciate each other immensely and will always love each other dearly. And yes, my relationship with Richard is still there, and it's in a way better than it's ever been. We worked very hard to get to this place- having an amicable divorce was of the utmost important to me after having experienced the vicious divorce of my parents who were never able to be at all friendly with each other. At my Barnes & Noble reading last week on the Upper West Side, many members of Richard's family were there cheering me on. I am so grateful to have them in my and the children's life, and so grateful to Richard for being the most amazing father to our boys. I now see him in much the same way I did when I first met him- as an unusual and extraordinary person who continually amazes me with his brilliant insights, his patience, and his kindness of heart.
One of the more striking statements you make, one that I think cuts to the heart of the matter for parents accepting a diagnosis is "To question your grasp of your child is to suffer a great loss." Do you find that this lingers, even when you've thought you've put this to rest, that it awakens in you unexpectedly, and you find yourself forced to reexamine it all again? In parenting three children with various degrees of ASDs, I've often been surprised at unexpected and unwelcome moments of sharp grief over differences in what was expected and what is; typical milestones like drivers licenses or high school graduations were difficult for me, but not for my son, who didn't realize a milestone had passed unmet. The first year of teaching college students my son's age and comparing the differences was a really rough experience, but it's one that passed and no longer causes distress. Part of that was looking at what my son had accomplished, how happy he was with the life he was making for himself. When you find yourself in that emotional place, what do you look to in order to move past the feeling of loss?
When I talk about questioning my grasp of my child, I’m referring to questioning my ability to understand, know, make sense of him. In those early days of discovering that Benj had hyperlexia, I felt that the child I'd thought I knew so well had slipped out of my grasp. My sense of him at that point was that he was a quirky, funny, original little being who loved poetry and music, was introspective and shunned petty small talk, had strong passions and an unusual but endearing way of engaging me. But now I was being made to feel by all the websites and books I was reading that all the things that had made him seem unique and distinctive were in fact symptoms of a disorder. I felt a good deal of guilt that I'd accepted and celebrated aspects of his personality and being that should in fact have alarmed me and led me to seek professional interventions. Had this acceptance been a kind of denial? Had I been unable to accurately perceive him? I struggled with how to both accept Benj as he was and help him improve in weaker areas. That was in a way the biggest challenge for me- achieving the vantage point of seeing him as someone with a disorder who needed special support but as so much more than that too. And I think the most helpful, productive way of looking at it, always, was to see all the therapeutic interventions as means towards helping Benj to be himself, most fully and happily.
Kim, your mentioning how teaching college students and comparing them to your son was especially painful for you really struck a chord in me! Remember the scene in my book when I describe meeting with my students at Yale the day after I discovered hyperlexia on the internet? I say: "as the students rattled on fluently and fluidly and easily about their writing and ideas, their lives and experiences, I had to clench my fists under the desk to keep the tears from welling into my eyes. I wondered whether real conversation would ever be second nature for Benj, whether he'd ever be able to think and reason abstractly, make off-the-cuff jokes, engage in sophisticated back-and-forth exchange." As the students shared details of their academic interests, romantic lives, and dreams for their futures with me, I wondered if I'd ever have such meaningful conversations with my own son, and be able to help, support, advise, and impart wisdom and comfort to him as I had the chance to do with these wonderful students.
In terms of those moments of grief over the difference between what was expected and what is, I had a poignant moment this past weekend when I was reading at the Barnes &Noble in Poughkeepsie. At one point, a tall boy standing at the back behind the seated attendees, called out: "I'm Lincoln, Benj's friend from nursery school!" I hadn't seen him since the two boys graduated from kindergarten together almost six years ago. I told him he was mentioned by name in the book- he was someone Benj had always especially liked-, and he shared his fond memories of Benj's perfect pitch and singing ability. It was lovely to reconnect with him, but doing so also made me feel a little sad. Lincoln seemed so much more socially attuned, confident, and mature than Benj; Benj would have had great difficulty attending a packed reading at a bookstore and speaking fluently and with poise to a large group of people as Lincoln had done. Then, this morning, kind Lincoln sent me a Facebook message saying he'd like to play with Benj some day! Other people's generosity of spirit and embrace of Benj have meant so much to me and been such a source of sustenance and comfort all along the way. In general, when I have moments of sadness or pangs at what Benj isn't able to handle or do, I always try to focus on how far Benj has come rather than how far I or anyone else wants him to go. I give thanks for his remarkable progress. And I remind myself that he finds joy in different ways than I did or a typical kid would.
Wordsworth flows seamlessly through the work, punctuating it perfectly, even when what you are experiencing is the opposite of his poetry. Much like some take comfort and find guidelines with which to live from the Bible and their faith in God, you rely on Wordsworth for your existential framework. Was there a point where you felt Wordsworth inadequate to the task and looked elsewhere? You write that your experiences with your son made Wordsworth take on new meaning; as time has passed, have you found your appreciation for Wordsworth deepening and evolving further?
First of all, I'm so gratified that you found the poetry so well integrated, so illustrative and illuminating! And it's so interesting that you point this out about the spiritual sustenance that Wordsworth provided me with. My boyfriend's parents sent me letters this week in which they said similar things; his father said: "I would have turned to God for his guidance and help,"and his mother wrote: "I can see that for you Wordsworth's poems provided the same source of comfort that I would seek in prayer; when you were so alone you found hope and solace in the poems."
I can't say that I ever felt that Wordsworth was inadequate to the task—he is a perpetual and boundless source of insight, compassion, inspiration for me—, but I did look elsewhere too. I have never read as much as I did when I was at the height of this crisis with Benjamin. I read in many genres: everything from Marilynne Robinson’s Gilead to Howard Gardner’sFrames of Mind provided me with sustenance, ideas, a sense of inspiration, practical help, and a sense of fellowship.
I have never loved or appreciated Wordsworth as much as I do today. Reading the poems aloud when I recorded the audio version of the book made them live and breathe for me in an entirely new way. And it’s been really gratifying to learn how strongly and enthusiastically my readers are responding to his poetry when they encounter it- sometimes for the first time- in my book.
What do you wish you'd known at the beginning of your journey with Benjamin, that you would tell parents in the middle of discovering their child has a developmental disorder in order to make their journey easier?
I wish I’d known that I wasn't as alone as I'd felt then, that there were so many others out there who were going through similar experiences. I remember worrying that Benj would never be able to say "I" or walk up and down steps, feed himself or say "I love you" and now he does all these things with ease. I'd tell other parents not to compare their children to other children and their parenting experience to that of other parents. I’d say: let go of your need to predict what your child will or won't be able to do; live in the moment and really embrace it; take your child on his or her own terms and open yourself to the child in all his complexity and mystery and beauty. I’d advise using a strengths-based approach, one that focuses on what a child can do and uses his or her strengths to address weaknesses. I’d tell them that there are so many resources out there for people in their situation and that on this journey with their child, they will meet incredible human beings and learn so much about compassion, courage, generosity, and love.
I’d also share with them these words from a former student of mine at Yale; she wrote me last night:
“I just finished your wonderful book. One thing that struck me was how often you had to fight the idea -- in others and even, momentarily, in yourself -- that children with special needs are defined by a syndrome. So many of us experience those profoundly disorienting moments when science seems to be encroaching on our most precious beliefs about the human spirit. Yes, in some ways, we are ALL at the mercy of chemistry and wiring. But at the same time, we are all mysterious, poetic, transcendent beings.”