I’d really like to stop caring about my hair. It’s been the bane of my existence for years, rarely turning out the way I want it to except when I have nothing more exciting planned than a trip to the hardware store.
But while I do spend a tedious portion of each day with my blow dryer, I’m no longer bothered if the results aren’t perfect. With age comes wisdom: my hair really won’t change my life, or even a moment of my day.
I wish I could adopt a similar attitude about my son’s hair. Despite of an array of more serious concerns — aggression, bolting, beverage stealing — I still care about appearances. His appearance, anyway.
Daniel’s disability overruled the reticence regarding children instilled in me for years by my mother. In her view, displaying pride in her children was a recipe for losing face, an invitation to all manner of embarrassing failure she’d rather avoid until she “saw how we turned out.” Not once do I recall her praising me to another person.
But autism granted me permission to claim one small advantage in my own child’s favor when the odds were otherwise stacked against him: He is physically attractive.
Were she still alive, my mother would be aghast. But I say it unabashed: My son is beautiful. He has that going for him.
His teachers adored him, cuddled him, and melted at his smile. They loved his hip, laid-back style in the trendy clothes I chose for him. Friends and strangers alike commented on his looks, perhaps able to summon nothing more substantive to say about a child whose eccentric behavior left them bewildered and tongue-tied.
I didn’t mind that their praise was superficial. If Daniel’s looks gave him even the slightest edge as he faced the world, I welcomed that edge. Playing up his physical appearance was one job I could manage successfully as the rest of our world spiraled out of control.
Letting go of that job six years ago was a loss I still experience. We’d come to accept that residential placement would someday be necessary, but didn’t expect his escalating behavior to force that outcome when he was still a teenager, when he was still, in my heart, my little boy.
I didn’t know then how achingly I would miss the tangible care of my son, the proximity to tend to details he’d otherwise neglect, the tender, intimate routines on which we’d built our relationship together.
I miss supervising his shower, scrubbing his back as water splashed my face and clothing, reminding him to keep rinsing until his hair was clean. I miss bundling him in a towel in the steamy bathroom, fussing over his complexion and combing his hair, trimming his nails as he sat fidgeting on the edge of his bed.
I miss washing his favorite pajamas every day so he’d never have to sleep without them, checking that his jeans weren’t too short and his dark T-shirts didn’t fade in the dryer.
I miss his shy, satisfied smile as he’d inspect his reflection in the salon mirror, brushing his fingers across his freshly trimmed hair.
I miss being close at hand, ensuring that my son is not dismissed by a world that sees only autism’s messy side-effects, making sure that he is treasured, and honored, and cared for.
And he is cared for. Well cared for, if not to the standards I once maintained so diligently. His adult family home is staffed by professionals who do their jobs well, taking care of my son as they are hired to do. They seem genuinely fond of Daniel, too. Despite his quirks and alarming behavior, he still charms nearly everyone he knows.
There was just the little problem of his hair.
Months after moving to his new group home Daniel’s hair still had not been trimmed. We offered to find a barber ourselves, but were assured by his home director that he’d take care of it. With so many other concerns vying for attention, it was easy to let a haircut slide.
Luckily for him, Daniel has his father’s hair, a glossy, medium brown, that on a typical 22-year-old would look fashionable curling so long around his neck and across his forehead, à la Josh Groban.
But Daniel isn’t typical. Instead of a studiously careless, tousled look, his hair was just tousled. Disheveled. A mess, really, even as staff tried their best to keep it at bay.
I don’t know why something so trivial came to bother me as it did. We’ve had plenty of more pressing challenges to contend with since his transition from residential school to adult family home.
But maybe that is the answer, right there. He is growing up, every day growing further from my care, from holding him close, tending to his needs on a regular, comforting basis. We’ve been traveling to adulthood for years, but I’m not ready yet to let him go.
Daniel’s hair had finally been cut the last time I visited him. It is a singularly awful haircut, his worst since my own attempts when he was three years old.
But that didn’t matter.
His caregiver couldn’t wait for me to see his new hairstyle, smiling as I cupped his face and stroked his forehead, visible again at last.
She was thrilled when I commented on his sparkling white henley, a welcome change from the worn-out, orange mesh garment that, for reasons known only to Daniel, he’s insisted for months on wearing whenever he knows I’m coming.
Eagerly she described how she’d coaxed him into wearing the new Nikes I’d bought him weeks ago, which he’d thus far refused to even try on.
She was beaming with pride at how handsome my son looked for his mother.
His haircut didn’t make a difference, after all.
But the woman caring for him did.
Kristen, I love reading these. They melt my heart. Be well, dear friend and keep on writing……
Thanks for reading, dear friend. xo
This is truly inspiring as I too have a son who is autistic. I am sure that your writing prowess slipped by me in our years at New Trier but I am so very glad that you are sharing your journey in Good Marching. We have relocated to Delaware for their approach to vocational readiness through the schools and Will (my son) transitioned nicely into the “adult world” this past summer. He just turned 22. I have great empathy for your loving recount of all things autistic! Thank you again.
So glad to hear from you, Sharon! It isn’t an easy road to travel, but it sounds like your move was a good one. So glad to hear Will is doing well. Please stay in touch. Thanks for reading!
I have taken time to read this last article and your entire blog…Good Marching. Kristen, you have inspired me. What a journey. Knowing your entire family for years (including your mother), makes this all the more meaningful. I am proud of you and all your efforts to support others. God bless you.
Thank you for reading and sharing, Corrine. It’s been my pleasure to know and count you as a friend all these many years. You were there at the beginning with Daniel, and I remember clearly how sensitive and supportive you were when I was struggling. I’m so glad you are still in my life.
xo
I relate to this post the most. I too am hair obsessed. You would think my experience raising two boys with special needs would leave me with more humility than vanity but sometimes a good hair day is my only salvage to feeling normal. The same goes for my boys. I just overdid (again) my purchases after a recent family photo shoot. My kids are photogenic and I agree that any advantage their good looks give them in this life, I welcome. I remember when my eldest turned 1 years old and the realization that he had special needs began, I bought him an expensive ‘outfit’ for his birthday picture from a department store. My husband was in residency and we couldn’t afford it but I didn’t let that stop me. I justified that the ensemble made him look more ‘normal’ than all the money we were laying out for therapy sessions. I still look at those pictures and am glad I splurged. It helped me get through many dark moments and was, at times. the only hope I had that things would be okay.
Marla, I just totally love your outlook and understand your feelings so well, as I share so many of them! I’m glad you have that photo of L and that you have it to treasure. Your boys are beautiful — and extremely photogenic (like their mom). I love each new photo I see of them — keep ’em coming!
Ah, Kristen, another piece that touched my heart. Sounds like Daniel is adjusting a bit more since I last spoke to you. Perhaps time will soothe the ache you still feel at his absence. I hope so. As you know, there is no perfect solution. Bobby, almost 20, is still at home as his parents wait for residential placement for him. I just pray for an outcome that will be good for all of them.
There really is no perfect solution, but I suppose that is the way of all of life. I too hope that Bobby finds the right place where he can live his fullest life. I appreciate your support and reading my blog more than you know. xo
Very powerful. This line, specifically, stuck out to me – “We’ve been traveling to adulthood for years, but I’m not ready yet to let him go.”
That line will also hit home for any parent of a child becoming an adult. I don’t think we’re ever really ready to let go.
Agreed, Jim. I feel the same, in many ways, about my “typical” 24-year-old daughter. Thanks for reading, and for your insight.
Somehow this post slipped by me, and I’m glad I found it. I, too, am hair obsessed and can relate to your own feelings about your hair and how it impacts — positively or negatively — your day (love the line about the hardware store!). And while I can’t relate to your situation with Daniel, what connected for me was your grieving the loss of those caring routines you had with Daniel. As Kate graduates from high school and looks ahead to college, more and more of her life is up to her, and less and less of it is up to me!! I miss the physical closeness of bathing her, brushing hair, brushing teeth, zipping up those footy pajamas, even picking out her outfits! I think of the Elton John lines: “Don’t wish it away, don’t look at it like it’s forever.” Thanks for sharing this post — as always it touched my heart.
Despite the fact that your hair always, always looks fabulous, I do know what you mean! I and so understand your feelings as Kate graduates; I felt the same pangs when Natalie left for college. In fact I still feel those pangs about Natalie! Thanks for reading and sharing, Kary.