Saturday, July 31, 2010

On the outside

Do you have a minute?

Are you comfortable? Can I get you anything? Coffee? Ice green tea? Maybe a glass of wine? I’ve got some but I can’t vouch for it. It’s been sitting over there on the counter for a while. Weeks, re-corked by still. I can offer you a fake beer? Not quite the same as a real beer but not half bad. We call them beverages in our house, as in, Honey? Can I get you a fake beer beverage? Or water? That’s what we drink: Coffee, green tea, water and fake beer beverages.

I can’t be drinking the wine anymore because sometime during the first glass I start to get hung-over, the dehydration, the hazy smile like I’m looking at you through a mist, the slight headache and then the creepy fatigue like I’ve been dipped in serum and it’s wicking up my legs. I drink the very, very occasional glass like last night when I was upset because my son said he hated himself so much he wanted to kill himself and that made me deeply scared and sad because we don’t use that expression here, we don’t say, I’m so upset I want to kill myself, we just don’t, so why did my dear little nine year-old Fluffy say that about himself?


I’ve long known Fluffy’s growth goes in cycles, he goes up, levels off, starts to fall down, bumps along on the uneven ground and then climbs back up again. I’ve been able to see that once the whole cycle is complete, there is often new growth that stays. Overall, if I was to chart the data, I’d see that he is progressing, growing, learning, changing, just like any other kid. Scratch that. Not just like any other kid. But still, learning happens. Change happens. I used to cycle right along with him, my mood inextricably linked with his no matter how much self-help I’ve ingested over the years. Now, I have enough faith in the cycle to not completely panic when the shit hits the fan and the shit doesn’t hit the fan anymore, well, okay, it does but it’s more like little nuggets of poo rather than buckets of, well, you know, buckets.

Until he spoke of killing himself.

Maybe it’s hyperbole? The stuff of ‘tween talk? Lord knows Fluffy is sounding more and more like a ‘tween with his high drama exits from the room, I CAN’T BELIEVE IT!! MY GOD MOM! stomp stomp, clang clang, boom as the door to his room slams shut. He mutters, Whatever, repeats what I say in a mocking tone, rolls his eyes in exasperation. I don’t know where he gets it; he isn’t in school, doesn’t hang with the big kids. He’s clearly been programmed in utero and now the timer has gone off, little shuttles of tRNA zip up and down the genome, turning on and off 'tween genes.

Maybe that's what's responsible for the latest assortment of behaviors that add up to the latest acronym following oh those many acronyms (ASD, AS, SIT, SID, OT, SLP, HANDLE, RDI, NHA, VT). 


Take the water bottle. The water bottle slung over his shoulder on a strap like Robin Hood, the one he fills to overflowing and then fills with drops captured by the cap and then screws cap on in a particular way and drips the water stream through the drink hole. The one he secures with the plastic lid, careful to line up the bump over here precisely 180 degrees from the horizontal line there. The water bottle he wears everywhere all the time including in the middle of the night when he gets up to pee but never drinks out of.

If I drank from it, there’d be less in the bottle, Mom. And then I wouldn't feel safe.

It’s his security water bottle, he explains. Okay, but now he won’t go outside in the sun, for a walk or a bike ride, for a ride in the car to the pool or the pond or the sprinkler park because it’s too hot and he’ll need to cool off by drinking water and he can’t drink from his bottle so we need to stay home, Mom, let's stay home all day.

The temporarily solution: fill an additional bottle. Now he has two. One for safety; one for thirst.

Okay, I say. But you’ll have to let me fill that one up.

No! No! I’ll do it. It has to be all the way full! So it doesn’t make any sound when I shake it. (He shakes the bottle, shake shake. Listens. Shakes it again. And again. And again.)

What are you doing, honey?


But you just checked it.

I know.

Then why did you do it so many times in a row?

I-I-I. I don’t know. I just had to.

He fills it up. It takes about five minutes. He finds a sling for it. It goes over the other shoulder and out we go.

Now he has a rock that must travel with him, a special rock that he charges with additional Reiki every evening at bedtime. My rock means the world to me, Mom. 

He talks about its healing powers quite a lot. The Reiki rock is cool to me and maybe to other grown ups. I’m glad he takes that time at night to concentrate, close his eyes and focus, breath deeply. But when he talks and talks about it to another kid, when he sticks out his hand, opens his palm to show off his super cool magic healing rock that is ultimate and legendary, when the other kid grabs it for a closer look, when the kid doesn’t give it back and Fluffy lunges for him, screaming and crying in outrage, knocks him down to the pavement and the giant needle scratches across the record and time stops and every pair of eyes at the ice cream parlor stares in alarm, well, the Reiki rock doesn’t seem very healing to me.

Yesterday he started wearing it in a tube on a string that goes around his neck. With seven pennies stacked inside on top of it.

Why pennies? I ask.

I don’t know, he answers.

Why seven? I ask.

I don’t know, but it HAS to be seven, he answers.

There’s a local writer with a son on the spectrum (Asperger's, I believe) whose family was featured in a documentary I saw last year. At the end of the film, she got up to answer questions, speak a bit about herself and her life and she said a few things that really resonated with me. She said, and I paraphrase, that she didn't want people to feel sorry for her, didn't want them to feel sorry for her son, didn't want others to think of their situation as terrible or tragic. But she also didn't want them to think it was no big deal either. 

She said, there is a way that she will always feel other, always feel apart from families with neurotypical kids. She said it all without pity or resentment, more like, Look, listen to this, let me read to you from my newspaper over here. Let me tell you what is says. 

It took over a decade for me to get to be a mom. And I love it. Love being Fluffy’s mom, love what I've learned, love who he is. But my experience since becoming a mom has often put me on the outside. I didn’t want to be on the outside but here I am, with my boy and his water bottles, his rock, his stack of pennies and all those eyes staring at us. 



  1. I know. I know! You are on the inside, though, here with us. I'm so grateful for your company. Just hugs, I wish I had something constructive or witty to say, but mine are just five and I just don't know. On the brink of puberty, probably lots of changes going on, lots of chaos that needs ordering. Hope he starts drinking from that water bottle soon. xoxo

  2. Beautiful, as always. Lots of us are on the outside with you. I am, for sure.

  3. Ah, I understand this feeling so well as we venture forth into the world more and more —toting along Nik's electronic "voice". Sometimes it is remarkably easy to tune out the looks. Others, they feel like daggers. And yet, I wouldn't trade my life with Nik and Niksdad for anything.

  4. I can so relate to this post as I've just spent a week with my extended family, all of whom love my daughter and are supportive but who really just don't always "get it." I have resigned myself, not unhappily, to this fact and know that my support, the real kind, comes from those who walk similar paths. Love to you and Fluffy --

  5. i never knew that i'd make it (pretty happily) through over thirty years of my life, THEN feel like the odd (wo)man out. i'm so grateful to have found mamas like you, mamas ready to start our own spectrum brownie/scout troop! the world truly does feel like a smaller place some days.
    i really want to take stella and fluffy out *together*. while fluffy dives at kids who try to touch his reiki rock, stella will launch large plastic toys at the heads of those who try to play the game differently than she'd imagined!! we can take deep breaths, smile at each other knowingly, then go out for a drink - while you sip your tea, i'll guzzle a gluten-free beer. GASP - my newest guilty pleasure!!! i digress. xxxxxx.

  6. K-floortime-lite-mamaJuly 31, 2010 at 10:03 PM

    lovely post as always Kyra
    one compensation is that there sure are a lot of lovely people on the outside

  7. Yes, always on the outside. We are new to this journey and it certainly has not been easy. Sometimes I think we've been blessed but at other darker times I think we are cursed.

  8. I was feeling emotional tonight to begin with, and now I'm a mess. Hugs, my friend. From one outside mom to another, you are loved.

  9. I used to work with a guy who had OCD and it was pretty tense around the office. Everything on his desk was arranged just so and woe betide anyone who used his chair. He would get furiously angry and call people odd names with tremendous hatred. I remember I was "Tit knocker," for some reason. It made me laugh although I tried hard not it. Somehow, "Don't touch my chair, you... you... TIT KNOCKER!" just struck me as funny.
    It was obvious that this man was suffering and living in fear every single moment that someone would touch his chair and the world would implode. I hope Fluffy is able to overcome his OCD, or at least learn to relax a little bit. I have no advice to give you; my kids are neurotypical and while our life has its ups and downs it's a day at the beach compared to what you go through and for that I am very grateful. Not all kids are mean and hopefully Fluffy will meet up with some who appreciate his unusual interests and treat him kindly. I really hope so.

  10. So compassionate for everyone here. Thank you for putting words to feelings that seem so important to express.

  11. I love what Niksmom said - that despite the eyes, she wouldn't trade her life with her son for anything.
    Such a beautiful post. It's so bittersweet- having such amazing children - and yet, finding yourself there in the middle, between both worlds.