Susan's Blog

Saturday, March 16, 2013

Dealing with what comes up on a walk with Nat

I got the the following article from Sunday Stilwell at Extreme Parenthood, and it really stirred up some stuff for me. We really have so many of these “odd souls” flying around these days. So many Nat-like guys in our stores, restaurants, streets, schools. We all know this, we encounter these people every day. We become friends with people solely because we share this experience, of taking care of someone who is Not Like Everyone Else. Not “normal.”

But with so many “not normal,” doesn’t that change what normal means? I guess that technically neurotypical, Developmentally On Time people are still in the majority. But the DD guys are so very visible, God bless them. Nat is so gloriously autistic, even when he is not flapping, not talking to himself, not walking fast. There is just something in his overly-alert, anxious-to-comprehend stare. His stance is uncertain and yet starkly evident against the blur of strangers.

Maybe that’s just my perception. But I have to look at it. And so I did. There he was trudging up High Street, his jeans a little too short to be stylish, no matter what I do to fight against his dressing disabled… please forgive me, but I know many of you know what I mean… with the huge CVS bag filled with 12 rolls of toilet paper. Like an old person, somehow. Two young woman walked purposefully downhill towards him, stepping adroitly out of his way. I heard snippets of their busy lives’ conversation, their competent, to-the-point words. They were roughly Nat’s age.

But today, before the sadness of missed potential descended fully, my own wider, open self kicked it out of my head.  You, Ms. Senator, are judging him. You are seeing him as inferior to them when you talk about missed potential. You are automatically assuming that normal is superior. That he is missing something, when truly he is existing on the same plane as them. Humans, humans, everywhere, each with a different set of neurons and experiences and synapses linked or not. One mind does not exist more fully, does it? We are all breathing the same air with our animal lungs, we are all evolved from apes and alive.

Yet my eyes can’t lie. There is sadness behind them anyway, and I suppose my words will not pat them away. The answer, then, is simply to go find Nat and give him a kiss.


I also remind myself that my son is walking, he’s healthy, he’s not got cancer, he is doing ok. I count the blessings that I can. He’s ok. He’s the way he is and that’s ok. God bless him, he’s Charlie and that’s all there is. I have my down times, the “what ifs”, but I shake that crap off and hug my kid. 🙂

— added by Janet bowser on Saturday, March 16, 2013 at 12:23 pm

That’s all it comes down to, Jan, right? Thanks for this. xo

— added by Susan Senator on Saturday, March 16, 2013 at 12:30 pm

Thank you for writing this, Susan. I had an experience similar to this the other day while shopping with Maddie, who is also gloriously autistic, and loves to shop for clothes. She chooses her own clothes and when I grimaced at some top she had chosen, she put it back. It saddened me. She is allowed to choose what she wears, damn it, she’s 16! Other 16 year olds wear it, why can’t she. I picked it up and gave it back to her, telling her that it’s beautiful if that is what she likes, then yes, by all means, get it. For one split second her eyes met mine, I am not even kidding. It was an acknowledgement, I know it was.

— added by Penny on Saturday, March 16, 2013 at 12:32 pm

Oh, Penny, how lovely!

— added by Susan Senator on Saturday, March 16, 2013 at 12:35 pm

You continue to help open my eyes. Thank you!

— added by Fred on Saturday, March 16, 2013 at 12:51 pm

Just when I’m thinking I’m getting used to this, we’re okay just the way we are, different not less, blah blah blah

Last night I dropped off my daughter and some other 13 year olds to a middle school dance. One my son could be attending…if

look over my shoulder at him as they exit the car. “have fun!”, i shout and tell the boys you have a crazy mother. Timmy just continues whispering under his breath and fiddling with his Buzz and Woody dolls.

No interest at all. If I could kiss him, I would. He punches me when I do.

— added by Timmy's Mom on Saturday, March 16, 2013 at 1:23 pm

I am finding more and more that people may not know exactly what to do, but they are certainly trying. Maybe it’s the rural setting and my kids have never been hidden. But at the bank they say hello to him directly, restaurant’s wait for him to give his order, and even the anethesiologist’s student on Thurs (dental surgery) made a point of saying hello to me and then walking over to Russ and speaking directly and correctly to him. Yes, I had to “translate” some of his questions into phrases he could answer easily – expressive language is poor and even moreso with strangers – but the student NEVER changed his focus from my son. I was solely the “translator”. I talked quietly with the anethesiologist but we were behind them and not part of their conversation.

His “flapping” etc no longer seems to make people even blink or take a double look. They may “pause” but then it seems to click “autism” and they simply move forward.

Attitudes have changed a lot in the last 10yrs or so.

Am I sad he will never catch up…. yes and since he’s now 11, that is how it will be. BUT, they told me that he would never be able to do so many, many things if I didn’t “train” him with ABA. They have been so very wrong about a lot of them. I have to always remember, it could always be worse. Lately, he wants to go out with “Dad” and they’ve gone together on an outing this afternoon. Awesome.

— added by farmwifetwo on Saturday, March 16, 2013 at 1:30 pm

Ah Susan. I feel for you. My son Tony is 18, and is going to “graduate” this year…..very hard on my husband and I. I usually don’t wallow in self-pity, but recently I have been….what could have been…..I guess wih the milestones it comes to play in your mind. And I know we should be grateful that our situation as not as bad as it could be…but still…those thoughts have been surfacing alot lately and it makes you feel bad.

— added by Ann on Saturday, March 16, 2013 at 1:37 pm

Fred, you are so sweet. When I see you next in town, I’m going to give you a hug.

— added by Susan Senator on Saturday, March 16, 2013 at 2:07 pm

I choose not to focus on the “difference” I choose to believe he is competent. While grocery shopping today Ed disappeared, I realized half way down an aisle he was no longer a few feet behind me , I couldn’t hear his noises or his heavy footsteps behind me . Looking back I waiting a few seconds- LAst seen he had stopped to puruse a Golden Book in the Cereal aisle. Should I go back to that aisle? Nope, decided to move on and two aisles later Ed came strooling up the aisle with Mouthwash, toothpaste, aqua Velva and Shaving cream in had and dropped it in my basket. Success. We continued shopping and lined up in a check out line. As soon as I started I realized – I had forgotten to buy his almond milk- What to do ? Leave my cart with Ed and run back to the far corner of the store where it is kept? Pull my stuff off the belt and go together? I decided to ask Ed to go get the almond milk. He doesn’t move fast, but if he didn’t return until after I had checked out I could back track and check out in the express line with the milk. The cashier started ringing up my order – I stepped back to see if he was coming- Nope, half way through I checked again, no Ed. Heavy Sigh Suddenly the woman waiting behind me said – “here he comes! No worries ” She obviously had been watching , was I that transparent? As Ed passed her she spoke to him- ” Good Job” Ed was beaming then picked out his usual nut bar from the candy display, “faced” the display so all the candy was in the proper place, his usual routine while waiting in line. This accomplished he then took his candy and drink from the cashier saying Thank You and headed for the door.
Love the village

— added by Sue Loring on Saturday, March 16, 2013 at 2:18 pm

I know EXACTLY what you mean about clothes somehow not hanging right, no matter how current and in style they are! For my daughter I think it is just the way she moves her body – clothes somehow look awkward on her. She is always beautiful, but we struggle to find a style that she looks comfortable in.

— added by Susan on Sunday, March 17, 2013 at 12:07 pm

This article really did make me think and I made the mistake of reading the comments and attempting to challenge some of those who argued that our kids should be kept at home and out of public places.
It angers me that their feelings of frustration and disgust with our kids should matter more than our desire to live a normal life and share it with our children.

Love you, lady!

— added by Sunday Stilwell on Sunday, March 17, 2013 at 2:44 pm

Susan, those last two paragraphs… I’m always fighting with myself over whether I’m truly sad for him (and if that emotion is warranted), or if I’m just sad for myself. I think the truth lies somewhere in between. Beautiful post, and it’s just so apparent how much Nat is loved.

— added by kim mccafferty on Monday, March 18, 2013 at 2:47 pm