Not All Back-to-Schools Created Equal

For two of my three sons, back-to-school time is exceedingly pleasant and is a near-replica of the squeaky, shiny ads that proliferate your newsfeed and television and mailbox this time of year—new outfits, backpacks, and lunchboxes, school supplies, a return to routine, and a few obligatory jitters.

IMG_2419But for one of my sons, who has both epilepsy and ADHD, it is nothing short of terror.  And I am not exaggerating, not even a little.

Aside from the details to which we, as his parents, must attend to set him up for success, I just look at him and know, on so many levels, school is different for him.  And try as we might to ensure that his educational experience mirrors that of his peers, that he is afforded precisely the same academic opportunities as the rest of the world, the very nature of how hard we have to work to make that happen says it’s not the same.

And while our son will have new outfits, a new backpack and lunchbox, and all the school supplies he needs, he is also going back with a new prescription, a strict medical order to ensure he is getting adequate nutrition throughout the day, and a new IEP—as well as all the complications and side effects that accompany each of these.

In six days, our sons will pose for their “first-day-of-school” photo on our front steps.  They’ll be smiling—all of them.  And I will be, too—happy for their growth, their progress, for new beginnings and for learning opportunities.

But part of my heart will be heavy because back-to-school should be nothing short of amazing; but for children with special needs and their parents, it is often anything but.

Room in the Clean Plate Club

IMG_2704This picture makes me happy.

Really happy.

And though it’s by no means the first time I’ve seen (or cleaned up after) this image, it’s the first time I’ve had any reaction other than the one that typically accompanies postprandial cleanups.

And it has to do with the lack of food left behind.  The clean plates.

Though it is uncomfortable to admit, the amount of food that is wasted in our house is borderline unconscionable.  Between the pickiness we endeavor to counter and the idiosyncrasies and proclivities of young children, there are more often than not shovelfuls of food that end up either in our dogs’ bellies or the garbage can.

And, oh, does this pain me.  Wasting food is one of those things for me.  It hurts me on too many levels to articulate—from the preparation and expense required for its cultivation and creation to my constant awareness that not everyone is as lucky as we are—in this house, for many in this country—to have access to plentiful, nutritious food.

On some level, I think, we ask for the waste.  It is our contention that our children should not be compelled to eat every morsel on their plates if they are not hungry.  We never subscribed to the “clean plate club” mentality.  Of course, failure to eat one’s dinner means no dessert; but more times than not our children cannot (or will not) finish the reasonable portions offered.

With our oldest and youngest sons, this hasn’t engendered any great concern.  They’re growing and growing well.  Listening to their bodies works for them, creates the balance that leads to energy and health.  For our middle son, though, it’s an entirely different story.

After growing only one inch in a year and gaining no weight, our middle son’s recent “failure to thrive” diagnosis is gravely concerning.  We have a Columbus Day deadline.  His doctor needs to see weight gain; so we are all working really hard to ensure that despite the appetite suppression brought about by medication used to treat his ADHD, he eats—and eats well and plentifully.

And this is not easy.  Battling about food is not a fight worth having and never leads to anything good; so for a child who will eat but isn’t inclined to eat, hand-feeding is our only option.  It’s working.  He’s getting all the calories, good fat, and protein his body needs to grow; but by and large it’s due to an effort reminiscent of feeding an infant.  When he needs to eat but isn’t inclined, we have to sit with him; we have to feed him.  He needs to grow; and because this is a crisis, we will do this for him until he can do it for himself.

But this morning he cleaned his plate on his own.  And this morning I finally understand the joy many parents feel when their children eat everything on their plates.

If the Clean Plate Club will have me, I think I’d like to join.

Here for Them

Edgar found the spot behind my bent knees as I lay on my side curled up in our oversized chair.  He put his head on my chest, listened intently, then whispered in my ear, “I don’t want your heart to stop beating.”

August kissed me on top of the head and said, “I love you, Mommy.  You’ll be right back from the hospital, in five minutes, right?”

And Oscar did what Oscar does—stared through me with the most soulful eyes you ever did see, worried but not wanting to make matters worse for me, thinking beyond himself because that is what he does, what he always does.

On Sunday I was sick, in the greatest physical pain I have ever known; and tonight, though I am no longer in physical pain, I am overcome with the angst borne of having come face to face with my children’s fear of losing me.

IMG_1131-001To be clear, I have no intention of going anywhere.  I fully intend to stick around well, well past my prime.  But our health is our health: When it’s good, everything’s fine; and when it’s not, little else matters.

My mother died of a heart attack.  Immediate family members have significant heart-related health concerns.  And, thanks to genetics, I do, too.  So far I’m managing it pretty well.  But every once in a while something happens that reminds me of my vulnerabilities.

A blood pressure cuff sits on my desk.  My children see it and know I take it, keep track of it.  They know I have to take medication.  They know it’s important and why.

But so far they haven’t been scared.  And maybe that’s because so far I haven’t been scared.  On Sunday I was scared, and I saw first-hand how my fear affected my children.

And while shielding my children from the vicissitudes of life is never something I’ve espoused, seeing them scared for me, because of me carries with it an intensity unlike anything else.

It made me want to stand up, declare myself just fine, disguise the pain with a smile, a joke.  It made me want to comfort them, to put their minds at ease, to take away their fear.

So that is what I did.  I minimized, rationalized, hugged them and kissed them and told them I’d be fine, that I’d be back “in five minutes.”

Right or wrong, comforting or not, believed or disbelieved, it’s all I could do.  Because in the annals of pain, being the cause of my children’s fear is the worst, and most assuredly more than my heart can take.

The Teacher Has Appeared, and Her Name Is Miley Cyrus

When the student is ready, the teacher will appear.”  –Buddhist Proverb

miley cyrusI don’t know Miley Cyrus and don’t feel as though it is my prerogative to comment on the choices she makes in her personal life.  As a fellow human being, certainly my compassion does go out to her and those who love her as she negotiates whatever thorny path it is she’s on.  But she is a performer, and as such she invites (some may argue demands) a reaction.  She is also a public figure and thus makes herself available for public commentary—the large and the small.  So here is mine, small as it may be: It is time, seriously time, to have a national conversation about dignity.

Daily I speak to my sons about dignity—about how they conduct themselves at home, away from home, in public.  There are consequences and even more conversation when they don’t and plenty of praise when they do.  We emphasize that it is possible to be silly, to be intriguing, to be yourself and still maintain your self-respect.

We also try to underscore that there will be plenty of moments in your life when your self-possession unwittingly fails you, when you do something you regret.  We then explain that it’s what you do next that matters, how you conduct yourself in the aftermath.

My sons were too young to watch Cyrus’ most recent performance; but at 9, 8, and 4 it won’t be long.  And certainly (and sadly) if it’s not Miley Cyrus, it will be someone else.  Further, Cyrus does not count as a role model of theirs.  However, outside the four walls of our home I suspect there were plenty of children watching and plenty of young people for whom this performer is (or was) something special.

But at the end of the day it’s not Miley Cyrus’ responsibility to be anyone’s role model.  People don’t set out to be role models; they become such when the choices they make inspire others to positive action.  No one wakes up in the morning and says, “I think today I’d like to become a role model.”  It happens organically, when you’re not looking, by a continuous effort to be the best version of yourself.

Miley Cyrus is not a role model, but her actions do communicate something about the concoction so many performers are forced to become, about the challenges of fame, about the difficulties she battles.

And her actions also show precisely what it is that gets us all talking.

But perhaps we’re talking about the wrong thing.  Maybe instead of talking about Miley Cyrus we should be talking about ourselves—how we talk to one another, engage with one another, how we conduct ourselves, and why this is all so important.

Dignity.

It’s a conversation long overdue and one that I can clearly never stop having with my children.

My Failure, Not His

“So, I think what I’ll do is write here for ‘medical concerns’ ‘failure to thrive.’”

I tried not to react when my son’s pediatrician told me my now-eight-year-old son had grown only an inch in 12 months.  I tried to hold it together when she said he hadn’t gained a single pound.  I did my best to remain expressionless when she said he had no body mass index.  None.

IMG_1024My son is eight years old and 43 pounds.  Forty-three pounds and four feet tall.

He is no longer on the percentile charts parents and physicians so frequently consult and rely upon.  He weighs less than his four-year-old brother.

And now he is the holder of a “failure to thrive” diagnosis.

And I am his mother, whose job it is to ensure he thrives.

I know this is related to his medication, that the stimulant medication he takes to treat his ADHD suppresses the appetite and can lead to this.

We knew he was thin, could plainly see it along with the rest of the world; but we thought we had an overall handle on it: Syrup and butter on everything.  Eat when you’re hungry.  Eat as much as you want.   Three helpings of mashed potatoes with sour cream?  Of course.  Nachos smothered in cheddar cheese?  As if you have to ask.

But it wasn’t enough.  According to his doctor, he’s not thriving.  And while the long-term complications of this I equally understand and fear, there is something else I fear . . .

That I am not a good mother.

I mean, I know I am a good mother in many ways, and I probably should stop short of delineating all of that here because none of it really matters.  I look at my child’s body and feel like a failure.  We chose this medical path for him, and it truly has made such a significant difference in his life, in the way he sees himself, the way he engages with the world.  He is without question more at peace emotionally.

But physically he is not thriving.

His body is not just slender; it’s emaciated.  He is not growing.  He does not look like an eight-year-old.

He is my eight-year-old, and nothing I can do is enough.  Nothing I am doing feels right.

And I look at his beautiful face and feel as though I have it all.

So, I ask, then, why can’t he?

Edgar on THE CREATIVE MAMA

IMG_1736-002Please visit us here over on THE CREATIVE MAMA.

This is a post that has been rolling around in my head for quite some time and not an easy one to write.

I have befriended, read about, and studied creative artists for most of my adult life; but raising one is a totally different experience.

I would love to know what you think, what your experiences are.

Thank you for reading.

Home Is Where the Work Is

While I will stop short of doing the beleaguered parents’ back-to-school dance made famous by commercials and, well, probably parents everywhere, I will say this:  I am looking forward to being a little less tired come September.

I am not a stay-at-home parent; but, as a teacher who does not choose to work during the day in the summer, I get a taste of the experience every July and August.  And there simply is no contest:  While I may be more intellectually spent during the school year, in the summer I am exhausted—from the inside out and without exception.

IMG_2536-001This may have something to do with the fact that I teach high school and that my children are nine, eight, and four.  At work no one knocks on the door when I’m in the bathroom; I can generally eat my entire lunch without having to stop mid-bite to clean up someone else’s spill, and I can read—because it is my job—for uninterrupted clips and then talk about and even bask in it. At work, the scraps I need to referee are generally more academic and less physical in nature, and no one is crying for 45 minutes because they lost one microscopic piece of LEGO. I may get up an hour earlier during the school year and go to bed an hour or more later, but the fact remains: Being home all day every day with your children—despite (and maybe because of) the abiding love you have for them–requires an effort unparalleled.

So, as one who works outside the home to all stay-at-home parents, I would like to tip my hat.  Of course, as any stay-at-home parent knows, what’s under said hat is often not fit for public consumption.  So, I’ll leave it in the abstract and simply say I get it—how hard you work, how tired you are, and how in the annals of full-time work, nothing comes or ever will come close to the work of a stay-at-home parent.  Nothing.