CAN I SLIDE DOWN THIS?

I’ve often said I’ve never in G’s entire life wanted to hit him. Until yesterday.

Leaving Pardner’s basketball game at the rec center, G – who has the balance of, um, a person without balance - casually threw a leg over a slippery metal pole and was about to slide down the skinny handrail that hung over a three story stairwell.

I was about ten feet away, attending to his little sister, when I heard him ask, “Can I slide down this?” Quicker than one would think possible, I was at his side and pulling him off the railing. I pushed him against the wall where he would be safe. I felt a surge of adrenaline such as I’ve rarely if ever felt before and only at great effort prevented myself from punching him.

My voice, when it came out, didn’t even sound like me. It sounded like a very hoarse man: “DID YOU LOOK??? DID YOU? DID YOU SEE THAT YOU WOULD ALMOST DEFINITELY HAVE SLIPPED OFF THAT RAILING AND DIED???”

Here is a picture of the stairwell I took when we returned to discuss this again: you can see the kids’ heads and shoulders waaaay down there. G asked, from below, “Do you want me to pretend I am dead?” 

NO. NOT. FUNNY.

I've written before about trying to get G to Pay Attention to the World. I can’t say my lectures around his almost sliding into oblivion (or, at least, severe injury) felt groundbreaking. But, since it is clearly so incredibly, desperately beyond important, I tried: “You need to think before you act, [G]. Remember how I have been asking you to pause when you leave school and close your eyes and think if you’ve forgotten anything? Well you need to do that much, much more. Like, whenever you are about to do…anything.

“It’s not that something’s wrong with you that makes it necessary to think before you act.

“Everybody has to think before they act.

“Your sister. in particular, has to think before she speaks. Because she talks a lot and sometimes says sassy stuff. But you need even more to think before you do something, like cross the street. Most people already DO THAT. But you don’t.

“You could have been dead yesterday. Look at my face. Can you imagine how we would all be feeling today if that had happened?”

Unfortunately, I don’t feel like he’s really listening or grasping the impact of my words -- or the possible repercussions of his actions. He’s one of the smartest people I know, yet I still honestly have no idea how to teach him common sense in a way that sticks.

Later in the evening Z was doing her usual acrobatics on the living room rug and G said, “[Z], you’re a calamity waiting to happen,” and I laughed – laughed! – “Look who’s talking!”

“Well, mom, a calamity is also a great disturbance in the atmosphere…”

I think I am still calamitized. To see your child almost off himself in the silliest, most-preventable of ways is pretty devastating. Even more devastating: not knowing how to ensure it doesn’t happen again in a slightly different, potentially highly-avoidable way.

But we will keep trying.

I am so grateful this Thanksgiving that G is still alive, in all his huggable glory.

I am grateful for another chance to try to help him to gain some goldang sense.

Love,

Full Spectrum Mama

P.S. I am having weird formatting issues. My apologies to those who don't enjoy reading in this format...As you may have noticed there is one portion of this post that is in my old school format. I do not know why...and can't change the rest without making blocks that cover all the words...Le sigh.

DIFFERENT

I recently read a book review by a person with sensory processing differences bemoaning a new compilation of essays by people on the spectrum as basically all stuff she’d heard before. It’s true: so many blogs and books are about similar things. Still, as a teacher (of yoga as well as academics), I know full well that it can take a lot of repetition for things to get through to people.

Another point in favor of repetition: Sometimes hearing things slightly differently, or from a different source, makes all the difference. I still remember the first time I really heard a yoga teacher say, “breathe deeply,” despite the fact that I’d probably been instructed to do so a bajillion times before. A particular iteration just might be the one that - finally, truly - gets through to someone.

As well, I applaud the normalization of the conversation itself! Another post about why someone needs earplugs or a weighted blanket or a sensory break?…Sigh? Or be glad that these adaptations are being integrated into the realm of “whatever” (as opposed to “weirdo-land”)?

In that vein, I offer my take on families and friends learning about difference:

A friend posted this question on facebook:

 ·

Hey friends, I'd like to know how you talk to your kids about people with intellectual and developmental disabilities. I'm finding the "difference" language, which I generally like and feel is empowering, to be somehow problematic.

[Her son]  knows that there are lots of ways people can be different, that some people are born different and some people look or act different because of something that happens in life (like veterans who use prosthetics). If I know someone's diagnosis (like Down's Syndrome), I use that in a matter-of-fact way, explaining what it is and how it happens.

The issue is when I don't know what someone's difference is diagnosed as, but I want to talk about that person with [son], so he can be sensitive to them. I want him to know it's okay to ask me any questions he might have. I don't see how he can stand up to any bullying of kids who are different if he thinks it's something so shameful we don't talk openly about it.

Thoughts? Advice?

Here’s what I said [combined and slightly edited for clarity]:

Great question and obviously one we deal with for a variety of reasons and in a variety of ways in our family. I do agree that a matter-of fact attitude is so important in most observation of others. Anything from "Oh, so and so sometimes shouts," to “Yup, looks like that kid has only one arm…” to “Yes, some people think it is important to wear clothing with a brand name on it,” can be shared in a neutral and implicitly inclusive way. There might be some judgment or question appended – “Does that hurt your ears?” “Do you think brand names are important?” “How do you think she feels if people stare at her?” –  that is likewise implicitly inclusive in that it does not intentionally refer to the “normalcy” of the observed trait.

One major caveat when it comes specifically to “disability:” Many people one might label as disabled might disagree with that label. They might feel they are differently-abled, or even superiorly-abled, or completely normal in their own way….

Because there are two key underlying things here:

how people see themselves

and  

how they are seen by others.

Obviously you want [your son] to know that all beings are worthy of kindness and respect (I hate "tolerance" [although I know it's meant well in theory, I find it condescending in practice]) including himself (who, as a male of color, will have his work cut out for him in some arenas...). This kindness and respect model encompasses both how he sees himself and how he sees others, and naturally integrates how others themselves might want to be seen, right?

What I try to convey is that Everybody is different...and everybody is equally worthy of kindness and respect. Having an autistic kid and a kid of color that's already been kind of an inevitable issue and we have our teachable moments at home as well as on the town. Sometimes they are painful. (And, by the way, there are those rare exceptions to these ideals of neutral observation and kindness and respect for all: those sorry-as$ people who do not treat us or others with kindness and respect [because they are “hurting in their hearts”] need to be treated with kindness and respect from a very long distance…)

I guess this is a long-winded way of saying:

if Everybody is different,

then "different in the way her mind [body, etc] works" or "from a different

culture" (or whatEVER)

becomes simply one difference among an infinite realm of possibility.

It’s a pretty ordinary point for those of us accustomed to daily life with “extraordinary” differences in our midst. But the implications are grand: with everybody being different, there is no homogeneous “normal” against which we all must be judged.

Love,

Full Spectrum Mama

BLANKETS

Sensory processing differences make Blankets a big challenge for some. While my son, G, uses the same comforter year-round and is steaming in the summer and cool in the winter and “Mom, don’t bother me about this,” and my daughter, Z, always varies her blanket layers flawlessly for the “just right” amount, I am one of those people.

Here is a mere sampling of Potential Blanket Problems: improper weight, inadequate warmth, itchy, scratchy wool, side-to-side slippage, smallness, bottom-to-top slippage…Rilke said, “A work of art is good if it has arisen out of necessity”* -- so I’ve made a visual aid for those who might be unaware of the true scope of this topic.

                         Figure I – Issues in Blankets

For so long, at night, while trying to sleep or go back to sleep under Blanket(s) that just could not get right, I practiced thinking “peaceful” thoughts and feeling peaceful…In fact, for most of my life I have had an overarching goal of “achieving” “peace.”

A few months ago, I realized:

1. I didn’t get one of those kinds of lives,

and

2. Even if I had, my high physical and emotional sensitivities (SPD) would prevent total, utter “peace.”

So I decided on more realistic goals – goals that are worthy and sometimes a stretch but that I’ve for the most part been actually reaching; goals that make me happy (versus defeated) to think about…:

They are:

To practice living with

1.       much KINDNESS

and

2.      a mighty SENSE OF HUMOR.

So, now, when sleepless, I try (instead of perseverating on why I am not as “peaceful” or “asleep” as I should be) chuckling quietly to myself and, VERY kindly, I do not smack my peacefully sleeping husband. No, I am kidding about the chuckling. But it does help, with my particular neurology and bed-ology, to go for the gentle humor of it all instead of something overly elusive…

I haven’t even discussed mattresses, sheets, and pillows – or sharing a bed.

Love, and a big, sweet, slightly maniacal smile,

Full Spectrum Mama

*Rainer Maria Rilke, Letters to a Young Poet (Stephen Mitchell translation)

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