It is time for confessions... I am the parent of two wonderful, special children, one of whom has been diagnosed with "special needs." Those of you who know me as a parent, may know this, and wonder why it is a big deal for me to build up to a big "confession," but anyone who knows me in a more professional setting may be more surprised by this piece of information, and even more so by my decision to write about it today. I think that there is a lot of pressure in western society to compartmentalize our lives, and, specifically, it is, in my humble opinion, an implicit imperative to keep our family lives "private" or "hidden" in our places of work, especially, if you want to be taken seriously in the "boys' club" of academic leadership.
That may sound dramatic, but I have had conversations with peers or supervisors about "other women" who have talked too much about their kids or needed too much time off for their families. I have seen the rolled eyes, and heard the dismissive comments. I am smart, I can take a hint... it's okay to talk about how cute your kids are occasionally, and even make a passing comment about how crazy your life is, but just don't go ON about it too much. I feel churlish writing that, since we have come a long way, and I am VERY fortunate to have flexible work hours and a very sympathetic boss who has kids and a wife who also has a career in academia. He is always understanding if I have to work from home because of a sick child, or leave early for a dentist appointment. I am also blessed with an office mate who probably knows way more about my family life than she would ever want to, and is always a sympathetic ear nonetheless. And last, but definitely not least, I have a loving husband who does his best to contribute and pull his parenting weight. But still I feel that I can't really talk about my family's struggles, especially when things are not going smoothly, if I want to be taken seriously at work. Maybe that is just my perception or problem, but that doesn't make it any less real for me.
And of course, children with special needs add a whole extra layer of taboo. Western society is implicitly elitist, with fairly narrow definitions of success and appropriate behavior, and as long as children fit within those narrow performance parameters, privacy is respected and maintained, if not actively enforced. But if your child is different in any way, especially if they can't be pigeonholed into a fairly limited list of labelled "types" or syndromes, then it is all too easy to start to feel inadequate as a parent, and that enforced privacy can make you feel very alone, or even ashamed. There is very little sense of community support for parenting "difficult" children, and although services are available, the onus is on parents to seek them out and advocate for their children. This can be very time-consuming, and is emotionally very draining. Couple that with the perceived imperative to leave your family problems out of the work place, and it is all too easy to end up feeling stressed and overwhelmed.
Both of our sons are academically very bright, so they are often rewarded for their apparent school success and achievement. But our younger son also has some fairly significant difficulties with integrating and making sense of the world. Amongst other things, he craves and needs almost constant sensory stimulation, especially in the form of movement and deep pressure and tactile input. It is very hard for him to sit still, or settle at bedtime, and his greatest relaxation comes from running, and crashing and moving, or, deep squeezing and hugging. We have been very fortunate to find great occupational and other therapists who have helped us and him to understand this better, and find ways for him to find the exercise and sensory input that he needs. Sports are a great outlet for him, and he spends every spare moment outside, weather permitting, practicing his favorite skills. After a long, and busy day, when most of us just want to collapse on the sofa, he will de-stress by going outside and pounding a lacrosse ball against his rebounder net, or shooting a soccer ball into the goal over and over again. He will never choose to relax or keep still, so he hates going to the movies and long trips where he can't move and run around. He has made incredible progress in being able to manage these needs so that he can attend school, pay attention and flourish in the classroom, although you will often see him crossing his arms across his chest and giving himself "squeezes" to self-regulate. But sometimes, and especially recently, he just sort of melts down when it all gets too much.
After what felt like a long winter, and a very rainy spring so far, his frustration level with not being able to go outside enough is at its zenith, and his tolerance for being thwarted in any way is at an all time high. Since he doesn't do anything by halves, when he loses control, he really lets loose on whoever is in his way. Fortunately, he understands when and where it is "safe" to do this on some level, so we have only had to deal with this behavior at home so far, but it can be pretty terrifying to behold, and recently it has happened a couple of times with our babysitter. To say that it has disrupted the dynamic of our family, is an understatement. So I find myself, after a few years of feeling like his needs were being managed appropriately and adequately, casting around again for support and interventions. This means asking for help, calling psychologists and counselors, filling out endless paperwork, explaining and justifying every little detail of our family life to relative strangers, and always, the endless scheduling and waiting for appointments. So when my PhD advisor expressed concern with my progress on my research proposal, I did what any reasonable, graduate student would do under the circumstances - I started to avoid her.
To paraphrase Talking Heads (yes, I know I am showing my age...!) "this is not my beautiful life," this is NOT how I planned things to be. One thing that I have learned is that avoidance is not a good tactic - it just causes more stress, and, ultimately it comes back to bite you. But that is what I have resorted to simply because I just don't know what else to do. I have been so socialized not to talk about my stress and worry, not to mention the time taken up by our little guy's problems, that I don't know how to talk to my advisor about my lack of progress. I just keep thinking that if I just have a few more weeks, I could pound something out that is really impressive and then I won't have to explain why I have done so little up until that point. But, as I am discovering, that is a really good recipe for writer's block - fatigue, stress, and unrealistically high expectations.
So when I came across a book yesterday, (when I was supposed to be working on the aforementioned proposal), called, "The Anti-Romantic Child" something deep inside me resonated with both the title and the description. Priscilla Gilman describes, in far more eloquent and beautiful terms than I can, the process, frustrations, delights and challenges, of finding out about her child's special needs, and how she learned to understand and love him, as well as advocate for him. It is a beautiful book, not least because it is interspersed with quotations from Wordsworth, the subject of the author's own PhD dissertation, and she makes a compelling case for Wordsworth's ability to illuminate the loss of childhood and innocence, and his advocacy for us to be able to welcome and accept the outcast and those who are in some way different in our lives. I sat there, in OSU's very imposing main campus library, and could not put it down. I felt as if someone was transcribing my heart onto the page, through the mirror image of her life and words, and that gave me a sense of community and insight.
I am usually too cynical to write fan letters, but I did post a brief, heartfelt message on the book's Facebook page last night. To my delight and surprise, Priscilla responded, kindly and generously. It is so good to reach out and find others struggling with the same or similar problems in the world, and to feel welcomed into a community of sorts. But what also inspires me about Priscilla's book and message, is how open she has been about her family's issues and struggles, as well as the difficult choices that she has made about her own life and career in response to them, and how that has brought her closer to peace and fulfillment. It gave me hope, and it made me brave enough to try, in my own small way, to talk about the personal story of my family in a more open way.
Now, I just have to get back to writing that research proposal again.
