Susan's Blog

Thursday, December 21, 2006

The Kindness of Strangers

Here is my column for today’s Brookline Tab.

The Kindness of Strangers
Susan Senator
Brookline Tab, “Edge of Town”

This is the time of year when we focus on gift-giving. I try to
remember all the kids’ teachers, even though Brookline schools has a
policy against giving gifts to teachers, there’s always some way, like
cards, or baking, to say thanks. But there’s often someone important
I forget, especially in my oldest son’s case. Nat goes to a private
program for children with autism, so rather than just one or two
teachers in the classroom, there are five specialists in his class of
eight, and rapid staff turnover, due to the intensity of the
job. Because of this I don’t always get to know everyone in Nat’s
life. But it feels especially remiss not to acknowledge all the people
who work with him, particularly now, when he is 17 and there is so
much left to do for him to prepare him for the world.

It seems like ever since the beginning of Nat’s life I have been
focused on how hard things are for him. Even when he was little I was
thinking about his future, and I have needed to rely on others:
teachers, doctors, therapists, and tutors to help teach him the many
things he needs to know.

Most parents worry about their children, of course, but back when Nat
was diagnosed with severe autism – so many years ago – we felt
completely alone. We didn’t know of anyone else like him. Now things
are different, but back then, all I knew was that my husband and I
were alone with a baby we loved but didn’t understand, and we were
scared. Questions and doubts colored every conversation we had: What
should we be doing for him? Who will help us? And the most horrible
question, the one that still makes my heart hurt: What happens when
we’re gone?

I have learned to live with such uncertainty by now; it’s just a small
line between my eyebrows, a soft twinge in my throat. We understand
that we cannot plan for every eventuality, even though we are teaching
Nat what to do in any emergency situation we can dream up and
recreate, safely. We can teach him to put a bandaid on a cut, but how
do we teach him how to know when he needs stitches? Those kinds of
gray areas are hard to teach, yet they make up the fabric of daily
living in a complex world We will probably always need to have help
for him. I am only just beginning to accept this.

Yet I don’talways accept it. I make jokes like, “Well, I just won’t
ever die,” while I continue to cultivate my relationships with the
staff at his school, keeping my eyes open for those special teachers,
those aides who go above and beyond, who really “get” him. I am
secretly looking for my future respite workers, for the people who
will help us when he’s an adult. There’s the music teacher who is
determined to teach him real music theory; the gym teacher who gets
beaned with willfully thrown balls, yet proudly calls him Adam
Vinatieri; the swim coaches who get pinched but cheer him on when he
races. And of course, the bus drivers. With little or no training in
autism, they get to know his quirks, his likes and dislikes, his radio
station preferences. They talk to him and keep him happy for an hour
and a half every day. Maybe it’s not as much as teaching him how to
count change, but sometimes I wonder.

The other day, because it’s close to Christmas, Nat’s driver handed us
a big bag of presents: a huge box of oreos and a polar fleece top to
keep him warm. “He always asks for cookies because I give them to him
sometimes,” she shrugged. “So I want to make sure he gets his
cookies.”

The old twinge in my throat flared up. I almost cried as I took that
bag from her. This gift was much more than a bag of cookies. What she
gave me was a little peace of mind. I still don’t know what the future
holds for Nat as an adult. But I’m pretty sure that there will always
be people out there who will care for and love him, even when it’s not
part of their job description. Even when it’s not easy. And even when
I’m no longer around.

10 comments

Oh Susan, you should warn me when I am going to cry reading this at work. That was so beautiful and so true to what we moms think everyday of our boys’ futures.

— added by marlene on Thursday, December 21, 2006 at 11:15 am

I found this line to be particularly true:
This gift was much more than a bag of cookies. What she gave me was a little peace of mind.
My son rarely receives gifts from anybody especially those that have any personalized meaning for him, or for us. Maybe because he is “low-functioning” and pretty non-interactive. Even family members (who should know better) often pass on the gift giving. But each rare, thoughtful, gift, and its giver, is burned into my brain. It is much much more than the gift itself..as you point out.

— added by n.b. on Thursday, December 21, 2006 at 12:24 pm

The ending melted me. So true.

— added by Anonymous on Thursday, December 21, 2006 at 12:30 pm

I just finished putting on my mascara….now it is all over my face.
It is so wonderful to hear about a person like that bus driver. I hope there are many many others like her in this world.

— added by Dori on Thursday, December 21, 2006 at 12:40 pm

What a beautiful post. Thank you!

— added by Em's Mom on Thursday, December 21, 2006 at 2:33 pm

Such a beautiful post from a beautiful person:)

— added by KC's Blog on Thursday, December 21, 2006 at 3:23 pm

Cool…..very cool.

— added by Martini on Thursday, December 21, 2006 at 4:13 pm

Sue, Even though you say beautiful things and describe eloquently ‘the era’ of your struggles, not a whole lot has changed. Parent’s of autistic children still worry about all of the things you spoke of. Yes, there is certainly more awareness and support, for those of us just beginning on this journey, and maybe even better treatments. However, the daily struggles and worries are still very much ingrained in parents that worry about the world around our wonderful children, especially when we are gone. I do appreciate your blog, very much Sue!

— added by Anonymous on Thursday, December 21, 2006 at 4:39 pm

A lovely column. You do manage to express the challenges and joys of parenthood so eloquently.

It is strange sometimes when you find kindness and understanding in a most inlikely place. My brother, who is pretty much a sarcastic-macho-hardas* is just wonderful and funny with my daughter. I’d never have guessed that one!

I mean, you never know!

— added by susan on Friday, December 22, 2006 at 6:04 am

We all have those same fears (autism parents), I have had that lump in my throat and chest at the thought of dying and leaving my poor son behind without his mama.

I pray a LOT, lol.

Nice story, loved the ending.

— added by Anonymous on Friday, December 22, 2006 at 9:39 am

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