The “S” word is Stupid!

NOTE: This post originally appeared on the sadly closed NYC Moms Blog.

It’s really funny, but when you have a kid with special needs like I do, behaviors that would be questionable from your typical kids become things of joy when your autistic kid does them.  Case in point:

This afternoon, my 7 year old son Jacob was in the living room with his wonderful 1 on 1 therapist Becca, who comes three afternoons a week to push, push, push his envelope. They were playing with Mr. Potato Head, working on those pesky prepositions that give Jacob such trouble. 

When you’ve got language processing issues, the more abstract a concept, the harder it is to really wrap your brain around.  Prepositions are all relational, while other attributes are absolute.  Jacob has no problems with absolutes.  You see, the blue shoe is always blue, but “on top of”, “next to”, that can change on a dime. 

Becca’s trying to get Jacob to ask specifically for the parts he needs, and he’s doing a great:  “I want the 2 white hands that are in front of the green hat.” Jakey is rockin’ it!  Mr. Potato Head is being assembled, and I am so happy listening in on them from the room next door.

Then, Jake is having trouble pushing a piece into place – “This is so stupid!” he shouts in frustration.  WOW!!!!  

Now, in our house, “Stupid” is the “S” word (thank goodness they don’t know the other one yet) and is quite frowned upon.  If Ethan were to use it to describe another person, especially his twin brother Jacob, he would be reminded how not OK that is. 

But in this case, I am so, so proud of Jacob for expressing his frustration just like a “typical kid” instead of growling or hitting himself on the head, as he has done in the past, that I want to run into the living room and kiss him.  I want to swoop him up and dance a jig of joy because my son has said “stupid” and meant it.  

My son Jacob has learned to cuss, yea!!!

Next up on the agenda: learning to lie.

From Birth To Death (and the messy stuff in the middle)

The night of my father’s memorial service, two weeks and a day after his slipping away at midnight, my seven and a half year old son Ethan wanted to talk about the birds and the bees.  Not quite like that, but it started with a question: “Mom, can a baby die before it’s born?”

Generally a truth teller, I say “Yes” and then my brain whirls, I begin to spit out facts about chromosomal abnormalities and knots in umbilical cords, birth defects and still births.  The conversation lopes on to answer his many questions about twins, identical and fraternal and just how do fetal cells know how to copy themselves and divide, and my thanking the powers that be that he hasn’t picked tonight to finally ask how the sperm and egg manage to meet up anyway, since I just wasn’t ready to tackle that yet. 

And so it’s not until much later that I realize what it is he really wants to know: how long he’s been in danger, in danger of dying.

And yes, the true answer is “from the moment you were conceived, kid”, but that’s not what you say to a seven year old -- unless you like having him crawl into your bed with nightmares for a week (and then of course you’d be footing the therapy bill twenty years down the road).  Clearly, death is on his mind these days.

Ethan has certainly been feeling sad about his grandfather’s long drawn out demise, but it’s not easily apparent.  It’s been underground, bubbling below the surface.   How like a boy, or a quiet volcano for that matter.

One morning on the way to school, shortly after my father’s passing, he asked me why his stomach had been hurting him for the past few days. Not a big throw-up kind of hurting, but bothering him, nonetheless.  I explained how sometimes we feel our feelings with our bodies, and that his sadness about his grandpa dying had gone to his stomach.  That made a lot of sense to him, and he then told a friend at school that his stomach was missing his grandfather.  

He’s also been drawing on the dead grandfather currency, trying to use “I’m just feeling too sad about Grandpa” as a way to ward off undesired homework, or accountability for bad behavior.  He gets mad when I don’t buy it, but as I said, “If you’re not too sad to play Pokemon on the DS with Evan for hours, you’re not too sad to do your writing work.”

Which is not to say his feelings aren’t there, it’s just that they are somewhat diffuse; like me, he had been internally preparing for this day for some time. Although of course, you can never really be prepared to come aground on grief’s shoals.

One place Ethan’s feelings have come out, though, is as an increased overall sensitivity, and thus, I’m afraid, a decreasing tolerance for his autistic twin brother, Jacob. 

Jacob was driving Ethan around the bend this morning.  He was in a terrible cheerful mood, talking and singing constantly with great abandon and Ethan was making himself hoarse with bellowing “Mo-omm, make him go away!”

And I was being a bad mommy and blithely ignoring it this morning, having one of those days when I just can’t deal, can’t insert myself into the fray.

“When someone says stop, you have to stop” I ineffectively remind Jacob for the thousandth time.

“That’s just the way your brother is, don’t take it personally” I re-remind Ethan, who, like his father, is even capable of taking the phrase “don’t take it personally” quite personally.

“He’s just doing it to drive me crazy” says Ethan, again for the umpteenth time (this being a familiar show tune in our house) to which this morning I reply “Really? Because if that’s true that would be wonderful, that would mean he understood that he was being annoying, and he was being purposeful about it.”

One thing that drives Ethan completely bonkers is Jacob’s inability to parse gender.  To Jacob “she” and “he” are interchangeable labels, to be used when referencing people, animals or talking trains.  “She’s scared” Jacob will say looking at a favorite picture in his book of Thomas the Tank Engine about to crash through a window.  Besides the fact that Jacob still likes the intolerably baby-ish Thomas, this last bit really sets Ethan off – “Thomas is a boy – a boy!!!! You say HE, not SHE! HE! HE!”

The bigger issue, of course, is that Jacob will refer to Ethan as “she” and you just don’t do that to a seven year old boy, unless you’re picking a fight. Which, of course, is the farthest thing from Jacob’s mind.

I guess one of the wonderful qualities of kids like Jacob is their complete incapacity for prejudice, since they do not really notice and place people into groups by surface difference.  Jacob takes each person as that person, he doesn’t immediately start to shuffle them into categories when he meets them and thus shape and limit his expectations of them.

I do, we neuro-typicals all do, can’t help it: “male” “female” “my race” “another race” “my kids’ age” “my mother’s age” “younger than me” older than me” “older than me, but looks younger (damn!)”.  Everyone neatly plopped into their slots, subconsciously, at first glance. We only drill down to their specificity as we get to know them, if we get to know them.

For Jake it’s all specifics, and he will ask a homeless man on the street the same question he would a King, were he ever to meet one.  Which is not to say he doesn’t see or notice differences, he just doesn’t base any expectations upon them.

Someday this will probably change as he becomes more like the rest of us, and I will then find myself missing his sweet autistic innocence.  But then if he doesn’t change, that is the more troublesome worry.

He is currently so incapable of deliberate meanness, I fear for him in the rough and tumble world of male adolescence he will all too soon find himself thrust into.  We all want to protect our children from the world’s dangers, but children with special needs, how much more fragile, vulnerable they are freezes your heart if you let yourself think too much about it. 

So I go about my days right now trying skip lightly across the surface, not to dwell in the deeper places where the whirlpools lie.  Until of course, Ethan asks his next killer question, then I’ll just take a big breath and dive.

Grief’s Half Life

My father has been dead three weeks and three days and I have not yet had a chance to fully mourn him.  All has conspired against me: I’ve had a constant housefull of people, my mother-in-law landed in the hospital, my husband flew up to Rochester to attend his friend’s mother’s funeral, and I could go on. There was all the intensive planning of, and then producing Dad’s memorial, pretty much completely on my own.  And then the very day after that, Spring Break: ten glorious straight days with my children.  And then there's being there as much as I can to support my train wreck of a mother, who needs so much more than I can ever give. 

My mother needs a husband, a partner, all that I can not be.  Her sadness is bottomless, and there is nothing I can say, but sit there and hold her hand, rest her head on my shoulder and murmur “I know” while she softly cries and wails her continual lament “he’s gone, he’s not there”.  But, of course, I don’t really know, for I still have my husband, my children here beside me, binding me to the world (though I am ghosting through my days right now.) She has lost it all in one fell swoop. They had one of those close marriages, a couple-y couple, the seam between their bodies zipped up full, partners in work and home for fifty-one years.  She was his best friend and partner, then his caretaker, and now who is she?  My mother has to forge a new identity at 87, and widow is not an easy one.  We are trying to pry her from his side, bring her back to life.  He is now ashes and I need to lift her ashen face back to the sun, but who am I to do that, fatherless and wrung out from his hellish drawn out demise?

So I am walking around half here and half…where? Not sure where the there is, but it’s certainly not here, in my skull, my skin. I am scooped hollow, lightly tethered.  I am not nearly present enough for my children, and for that I am sorry.  I just don’t have it in me, finding spring vacation week hellish, with my kids still young enough to want all mommy all the time. When they are teenagers, all eye-rolls and hugely embarrassed by maternal affection, I will chastise myself for taking this for granted, for not wringing every drop of pleasure out of their still greedy and physical love.

A friend says she thinks I’m processing my grief well: my writing, pouring over photo albums, showing Dad’s work to anyone I can buttonhole for five minutes is all mourning in a healthy way, but that’s only half right.  I know there is still a solid core that has yet to release; the fissionable nucleus, holding on, holding out, waiting for me to have the luxury of time without the pull of a child’s hand or my mother’s sorrow to find my own.

The night my father died, a tremendous storm – “worst in 30 years” – descended upon New York where it howled for three days straight, much like my mother, grieving mightily. A huge shaggy swirling near monsoon, winds downed trees, tore off roofs, and de-powered a multitude. Rivers swelled and breached, and somehow this seemed fitting: the right weather to accompany the passing of an outsized man.  “God is crying, too” said my atheist/agnostic, nearly animist mother. And that sounded about right.  Sunshine and blue-skied beauty would have been unbearable while we were being drenched in sadness. 

And again, the day of his memorial service: yet another storm, begun in drizzly mist then whipping up into a full Nor’easter umbrella killer, a days long flooding fury.  This was as it should be, the incongruity of death and sunny days avoided, watching the world sob along with us was strangely satisfying, I would have scowled again at sunshine.

And now spring has come on full in a violent burst, the trees exploding: magnolias, cherries, apples all a-blossom. The forsythias seemed to jump up yellow, on to spring green overnight, and I am dazed and unprepared for it all, my heart still wintry and bare.  But the children are out and prancing and I cannot stay home with shades drawn, because life, it goes on; and with each step forward, I draw away from my father, from the winter of his slowly dying bit by bit.  And so we thaw together, the earth and I, and I hold my children tight and kiss their shaggy sweet smelling heads and smile as they clamber all over me, knowing this too shall end.

And so I count the days until spring break is over and I can have a moment to myself, to mourn, to sleep, to drink my cup of tea while it is still hot, and perhaps to miss my children as they pass their days at school and creep ever so slowly away from my bosom.