Susan's Blog

Monday, November 23, 2009

Judging Our Insides By Someone’s Outsides

Ned’s often telling Ben (and me) not to judge our insides by everyone else’s outsides. He means that people may look a certain way, like they have it all together, etc., but that it’s more complex than that. I, on the other hand, am approaching others from my insides, as screwy and twisted and small-intestined as they are. The upshot is, I see everyone as smoothly as they show, and then I think I’m so different because I feel differently inside than how they seem to be. And Ben, who is in the throes of sixth grade social angst, does just what I do. He is so much like me that I often have trouble knowing how to help him.

Last night I was drifting off in bed, taking inventory of the day. But something was not right. So I had to poke around until I found it; and it was Nat. I was thinking about how much more he does in his House than here, and how that bothers me. I was remembering how much I had to prompt him: “Nat, want to listen to some music?” or “Nat, want to watch something?” And this made me feel bad because I was imagining Post-22 Nat, living some place where they don’t prompt you to do something with your down time because the ratios are more like 2 to 8, rather than 1:1 or even 2:5 as it is here in our home.

Then I got this picture in my head of Nat smiling and rocking and talking to himself in his Adult Home and nobody intervening and that’s that. As I thought of this, Ned was walking around, getting ready for bed and had no idea that I was swimming in such murky stuff so late at night. This realization took me away from Nat’s world for a minute and into Ned’s. I watched him putting stuff away and taking off his glasses, beginning to anticipate soft, welcoming bed, and I suddenly did not want to yank all that away from him.

But — too late. He saw my face and he knew that something more than “Mmm, covers,” was on my mind. “What is it, Sweetie?” he asked.

I could see Nat in his quiet, small grown-man world and it gripped my heart and wouldn’t let go. Such a small life. I couldn’t bear it just then. But how to answer Ned’s question, without plunging too deeply and shrinking delightful bedtime for Ned? “Nat,” I answered. “He’s so — well, he can hardly do anything without prompts, and when he’s on his own, they’re not going to prompt him so much.” I didn’t want to stop there, because if I did I would be handing it all to Ned in one heavy lump.

I waited a moment, and so did he, and then I had a new thought. That’s the disability, right there. I said that to Ned. “This is what it means that he is severely disabled.” It’s not about mobility, or talking, or behavior management; it is about his own inner ability to advocate for himself. To be active, rather than passive.

Yes,” Ned said softly, “He is very disabled.”

We lay there in silence; I, trying to hold up this new but also very old revelation and keep it from smothering me. And Ned, with the covers newly torn off of his momentary peace of mind about Nat, and also probably hoping that this would not lead to an hour’s worth of miserable conversation where he could be reading his Kindle and drifting off to my rhythmic snores.

Nat, Nat. How did this happen, how come this is your life? I saw him with that smile, maybe not even knowing how narrow his world was, and that hurt my heart even more.

You’re judging your insides by his outsides. No one had said it, but I felt it. Just because I would not want that life, doesn’t mean it is bad to him. As the weight of sadness started to lift, I sighed, and also reminded myself that I just do not know how it is for him. That I’ve done everything I can — maybe not everything someone else could, but everything I can. That I’ve loved him deeply and worked for him all his life and now, he is who he is. I have no idea how that feels to him, and I never will. Why assume it is bad for him, just because it would be for me?

Looking at the image of Nat, I see that he is smiling, after all. So maybe I should, too.


wow…another thought provoking post…thanks. Its an issue I battle daily with 5 year old D, my imposition of what I think would be appropriate for him to be doing/enjoying vs what he does/enjoys…yesterday I told him we were going on vacation this week…and he understands that enough to happily say "no school" which I think he really hates…everyone says school is "good" for him but why shouldnt I keep him home if he seems happier, non aggressive, and more engaged…who should I be listening to? After that we popped in the new star trek dvd and he was so excited he twirled a sock in front of the 65 inch screen,walking back and forth, while talking about spider webs ( a leftover thought from halloween I think)for almost 2 hours. He was gleeful, and I let him do it…star trek, vacation, if that doesn't call for a sock stim extravaganza, what does???

— added by eileen on Monday, November 23, 2009 at 7:12 am

Yes, that's exactly what it means to be disabled. It's on the top 10 things I get PO'd about when the HFA group thinks they should just be given more supports – why and for what reason??? NOT, that you shouldn't get all you can…. but why say that in the first place… How they (HFA) understand more than we do about being autistic but they can "do"….

One of my biggest goals for my little one is the ability to "do". The ability to know what he wants and to ask for it or go and do it. I am lucky we have reached this milestone at 8. I'll pick up that box of figurines a million times off the floor where he dumped it, after carting it downstairs, picking who he wanted to play with…. just b/c he made that choice and followed through. Will it ever be more than that?? I have no idea… but if one cannot be part of life, cannot choose, cannot enjoy life… Then I would have been devestated.

Nat seems to have difficulties still with "choice"… have you ever just let him wander for a day and waited to see if nobody prompted him if he would choose???

— added by farmwifetwo on Monday, November 23, 2009 at 7:46 am

I was about to say exactly what you said in your last paragraph. You know, one of the biggest learning experiences for me as a parent was when M was little, and so very sensory defensive it was crippling. I was a sensory seeker to the extreme as a child: stomping in mud, jumping in leaves, burying myself in sand at the beach. My child, however, screamed when he touched sand or even grass. It was bewildering and frustrating. It took me a while to pinpoint WHY it was so hard for me, but eventually I realized I was projecting ME onto him. I STILL do that, to some extent, and have to really reign myself in and realize that my children are not me, and what I think is fun is not necessarily what they think is fun (my littlest is sensory defensive as well). As parents, it's only natural to project. You can't help it.

Try looking at it from the flipside. Are some "typical" people not content to simply sit and watch tv or surf on the 'net all day? My own mother is one of those people who is incapable of sitting still, and simply cannot grasp the concept of "down time." She is horrified at the thought of sitting down and just, well, chilling out. It makes her anxious and nervous when we (me, my husband, my sister, and my father) do it, and she constantly asks us if we wouldn't rather be doing something more active. She is not comfortable if she's not constantly in motion, so she cannot understand anyone who is. She projects that all on to us, because it simply does not occur to her that some people are truly happy just being couch potatoes some times. We make fun of her for it relentlessly. 😉

By the way, "sock stim extravaganza" just made me laugh out loud. That's awesome.

— added by ASDmomNC on Monday, November 23, 2009 at 9:49 am

Oh wow. A lot in this post resonates. There are lots of times when I'm feeling down about similar kinds of things and just cringe at the idea of dumping my emotional burden of the moment on my husband. When he finds a moment to be happy and unencumbered by worry then he deserves it.

— added by Christine on Monday, November 23, 2009 at 6:15 pm

Thank you for posting this Susan. It sits with me. I so appreciate the balance you are trying to achieve somehow – mothering him and deciding for Nat because that's what you DO, your whole life, that has been what you are doing, yet, letting him be himself, totally himself and validated for that. Hard stuff to get to, and even think about.

I'm not into blaming the HFA's or the LFA's – hate the terms, hate the acronyms, hate all the stuff about 'high' and 'low' in the autism name-game. Some would say my daughter is 'high' some would say 'low' – sometimes it depends on the day, the weather, who knows what it depends on, it's just a load of hooey to me in the end. She is who she is. I think the statement that 'Once you've met a child with autism, well, you've met one child with autism' ought to be stretched like a banner across our heads as we meet each other, all doing the best we can with the autistic kid we got. Enough ranting, get on with it. Stop blaming the HFA's the LFAs and the moms. Isn't this what we are trying to get away from anyway – who's 'fault' it is we are in this predicament anyway? Enough.

We all struggle with what our kids need, how they must feel, how we can let them truly be themselves and appreciated. I always appreciate your thoughts on it Susan, it gives me insight into my own child and thoughts to stew around in my mind all day long.

— added by Penny on Tuesday, November 24, 2009 at 6:25 am

Loved this post. These are things we think of often here, trying to remind ourselves that it is our expectations that have been dashed not our child's. Ned is very wise and you very lucky. Enjoy the holidays.

— added by toadysmom on Tuesday, November 24, 2009 at 1:29 pm

This is a big issue. Our son can't occupy his time very well without prompting or even with prompting. Yet, he can be perfectly content (I think)walking around the house repeatedly talking to the staff about the latest thing on his mind. If he's happy, who are we to say he needs more. He just can't be trusted to go out in the world on his own yet. Who knows if the world will be as understanding as his staff. That's a disability!

— added by Anonymous on Friday, November 27, 2009 at 7:12 am

I think the thing that has made me the most miserable over the 20 years I have had my son is projecting my neurotypical feelings on him. But he is verbal and so fortunately for me I'm reminded that HIS feelings about his interactions with others and the parameters of his life are very different from my feelings about them. His point of view is just as unique as he is. I have to remember to take my cue from him about how to feel about his life. He's happy and his self-esteem is fine, and that's what counts.

— added by Anonymous on Saturday, December 26, 2009 at 11:37 pm

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