peeling back the layers

It is Thanksgiving day.

We are not yet halfway through the long drive to Papa’s house, but the troops are restless. We learned long ago that low blood sugar and confined spaces are a combustible mix, so we’re looking for a place to get a quick bite.

We’ve pulled off of the highway in search of a McDonald’s. Katie has eagerly pointed out two Burger Kings, a Wendy’s, a Friendly’s and a Taco Bell, but we’re sticking to our guns. We know better than to venture from the tried and true. Not today at least – not when so much will be different for Brooke, so little familiar. We finally spy the golden arches and send up a cheer.

We scramble out of the car – Luau taking Winston to do his business while the girls and I head straight in so that they can do theirs. Katie offers to take Brooke to the bathroom while I order.

I don’t need to ask what Brooke will eat. A double cheeseburger Happy Meal, please – no cheese. Oh and no pickles, no onions, no ketchup and no mustard. Nothing on the bun but the meat, please. Seriously, nothing. Don’t test me, Ma’am; I have sent back scores of burgers and I’ll do it again.

The kids squirm into a booth while I pour toxic-colored liquid over ice get the drinks. In the next booth over, a man sits alone.

His hair is heavy with grease. He is bundled into heavy layers, which he makes no move to peel off despite the relative warmth inside the restaurant. On his head is a navy blue knit cap that has surely seen better days.

The hat sits cartoonishly atop his head. He wears it too high above his ears, causing it to flop back over itself. A companion would surely have told him that it needed fixing.

I am self-conscious – feeling conspicuous and awkward sitting with my husband and my girls. I try to catch his eye, hoping to share a smile. When it doesn’t work, I look away. I am embarrassed, having realized that I was unwittingly staring at him.

I want to believe that he too is stopping for a quick lunch on his way to a Thanksgiving dinner somewhere else – that like us, he is headed to a place where he will be welcomed and cherished, loved, fed, nurtured and cared for. I want to believe, but my head calls my heart’s bluff. He is eating slowly, taking his time.

The girls dive into their Happy meals and Luau and I grumble and groan at the early kick-off to a day of disastrously unhealthy eating. Nothing like a plateful of grease to warm up for a plateful of starch. Oy.

I try again to catch the man’s eye as he deliberately lifts the lid off his salad. Again I am unsuccessful. I want so badly to somehow convey warmth, or solidarity, humanity, or – damn it, anything. I feel a need to connect, and though I don’t know how, I do know why.

How easy it would have been, I think, for our children in a different time – never diagnosed, never understood – to have fallen away, one by one, from families who would never have known why – why their son struggled in school, why their sister couldn’t hold down a job, why their cousin could never seem to make or keep a single friend, why their uncle insisted on speaking in such hurtful, unvarnished truths, why their brother could never look them in the eye when he spoke – shifty they’d have called him, untrustworthy.

How easy it would have been to have peeled away the layers of family, love and support as he or she alienated them one by one over the years, never quite knowing why it was so damned hard to just be like everyone else. How easy it would be to retreat. To decide that alone – as much as it may have hurt – was easier.

I flash to Michelle Garcia Winner’s conference where she talked about the depression that ensnares so many adults on the spectrum – how to a person, those she’s counseled have expressed their desire to connect with others, desperate to break down the myriad challenges that conspire against them doing so.

I think, as I so often do, of *that first neuropsych* who looked into her crystal ball and told us that our then three year-old daughter would live a solitary life – that as an adult she’d simply prefer to be alone. I feel the familiar anger rise – at an awful doctor peddling a dangerous load of cr@p. I push against it. Not now.

The man glances our way briefly but his gaze doesn’t rise above the level of the table.

We pack it up and get back into the car. As I help Brooke in, I give her a squeeze. We settle in for the long ride ahead – to spend the holiday with people who will make every effort to connect with my girl.

And as we drive, I fight the image of that man – someone’s baby – alone on Thanksgiving, wearing a navy blue hat, folded over, with no one to tell him to check it in the mirror.

And I quietly cry.

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23 thoughts on “peeling back the layers

  1. But, and thank goodness, for the but–Brooke and all of the children of your readers–are the new generation who are so much better understood and well-loved!

    Love you,
    Mom

  2. and as I put my son into the car with a new-temporary driver today, damn vacations, I wonder how he will do as SHE clearly has not been informed that HE listens to HIS music and the HEAT needs to be turned off and on and on and on…alone, ugh. crying first thing in the morning does not bode well for the rest of the day.

  3. If there were more like you in this world, there would be many fewer of those lonely people. I guess though, that I am just so happy that I do have you and yours.
    Love you,
    Dad

  4. I’ve been lurking here for what seems like forever. I have two kids on the spectrum and so much of what you write is stuff I could have written myself… and this is no exception. Thank you for sharing yourself and your experiences!

  5. Thank you for writing and sharing this. I think about this stuff a lot, too. My Aunt Marilyn is one of those “forgotten people”.

    Due to rampaging mental illness she had removed herself from the family about a dozen years ago, and we have very recently begun to reconnect with her, now old and infirm in a nursing home. I can never look at a “crazy” person, alone, unkempt and talking to themselves in a public place without thinking “that’s my Aunt Marilyn.”

    I only wish everyone she encountered over the years was as compassionate as you are. And I worry about my son Jacob, on the autism spectrum and clearly quite different, what his future holds.

  6. I couldn’t even read this, which is so not normal. I skimmed it enough to get that sick-to-my-stomach feeling I get when I think about Jack’s future without me to fix his hat. But thank you, as always, for putting it out there.

  7. I hope and pray that this generation of children with special needs will not be treated as those who came before them have been. I won’t allow it. I know you and all the other special needs mamas won’t stand for it either.

    xoxoxoxo

  8. As I weep Jes, I can so relate. My older brother clearly has Autism. He is now 50 and lives with my mother. Of course, Noone knew it then, and only after my first son with Autism was Dx and I learned more about Autism, I decided to mention it to my mother. My mother, by the way, is a huge supporter of me now, but back then, told me that I was just spoiling my child and that was the issue. It has been a rough few years after that Dx…but now my heart breaks for my brother, and my Mother, for a time that did not serve their struggles well! In retrospect now, it drives when I do for my own children…
    Kathy

  9. Beautiful. Heartbreakingly beautiful.
    Moms ( and Dads too) like us- and SIBLINGS(!) like the ones we are raising will hopefully impact the future in a positive way. Like those before us paved the way for us to find research and support, we will pave the way for compassion and understanding for future generations. Because we WILL.

  10. Heartbreaking post, and how lovely of you to see someone else’s pain on a holiday while trying to meet your own child’s needs as well. I hope, on some level, he did feel your compassion from across that room.

  11. i get it. my own daughter causes me to see, want to touch, and pray for individuals i once may have overlooked.
    your heart is beautiful.

  12. How funny- I just posted something like this, too- based on our experience of Black Friday. Our children have so many possibilities- and not all of them happy. We pray, we hope- we help them to help themselves… and we hope that there are kind people out there. I’m glad that you are one of them…

  13. That was so touching, Jess. That was a better definition of family that can I could ever write or convey. I just wrote my own Thanksgiving family post, and I tried to convey something like that in mine, but the words fell short. What you have described…. a place where you are wanted, known, cared for, and people make efforts to connect with you….well, what more could you want? As I read this, I thought of my mom’s words to me when I was trying to figure out if I could make the effort and withstand the challenges of going to my grandmother’s, where I hadn’t been in three yrs. “It will be good to all be together,” she said. I knew that intellectually. But I couldn’t quite… understand it on the emotional level I wanted to. Why it was so important to her for us all to be together. I wanted to understand. I love my family, don’t get me wrong, but family gatherings are usually chaos and too much for me. But as I read your words….I realize exactly what she meant. And I agree with her. Thank you for that and making me realize what I have.

    PS if you want to see my thanksgiving/family weekend, first time in 3 yrs, post with pics is at http://aspiefrommaine.blogspot.com/2010/11/most-unusual-thanksgiving.html :)

    Kate

  14. I love this post. But mostly, I love that we are not alone in the anger we share for someone who told us things about our child that simply are not and will not be true. We were told that our son understood nothing, among other things. Six months later, the layers peel back to reveal a kind, sweet boy who (like Brooke) wants the same things any child wants – just in a different way.

    You are a wonderful mom, and you and Luau and Katie define Brooke’s future – not a doctor in a room filled with false cheer from toys, a doctor who delivers doom and then goes on to their coffee while someone else’s world shatters. If they could see her now.

    • Oh god. THAT “doc” was a QUACK ( apologies to all ducks out there as they are all smarter than that so- called expert). I hope you’ve found a different one. One who KNOWS that our kids DO have tons of untapped potential. They need the right tools to access it, but it’s there…for ALL of them. I am so, so sorry. I know how you felt at that moment. We might have seen the same quack. Keep searching. There ARE amazing doctors who know the true meaning of ” healer” out there. It does feel like searching for a needle in a haystack, but they do exist. (((hugs)))

  15. I so often feel this same way when I see others in such a setting/situation. My heart aches and I long to reach out to do something…ANYTHING to let them know they are not forgotten or alone. It hurts.

  16. Molli would have eaten NOT A SINGLE THING in her happy meal…Nothing!! Her Food-Overselectivity is that extreme. So to me “just the burger’ is Good!! I admire the extent of your compassion & sensativity to those you happen to encounter in your surroundings. The man you described was absolutely heart-rending. He would have haunted me also. Unfortunately we cannot adopt every pitiable person & take them home with us. [I wish we could!]. Our Girls will never be alone, or end up alone. They have us,….& we won’t let them be!

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