Susan's Blog

Wednesday, December 16, 2009

Nat and The Others

Bringing Nat to parties is one of those things that has never been easy. When he was little, he would do unsafe things like try to drink from others’ discarded glasses and he once licked all the salt off the chips and put them all back in the bowl.

Now, he is perfectly kind and happy. The problem, of course, is me, and The Others (not as in Lost, but as in The Rest of The World Especially Those Who Don’t Know…). When Nat is perfectly kind and happy, he is very, very active. He goes into one of his circuits, flapping, talking to himself, from one room to the next, in a pattern, and sometimes bumps into people. Without saying, “Excuse me,” of course. Like so many things, I have tried and tried over the years to prompt him when to say that (after bumping or burping), but he never does it on his own.

The Others notice. I notice them noticing. I wince. How is it that after all these years I have thin skin and wrong priorities? Why do I feel like I’ve failed because his behavior is not perfect? I think it’s because I was raised to try to be as good as possible. To be perfect, perhaps. Diseased to please. So, even though I think Nat is being as good as he can be, given his social deficits, it is still not good enough. And people look. I look at their faces and watch for the puzzlement. Nothing rude happens; it is just this puzzlement. These are friends, or friends of friends. They may even know about Nat, but they didn’t really know. They now know. They feel the disability. And they see his limitations, and my inability to fix it. I hate that I still feel that way sometimes. I hate that there is this drive to fix everything, to be perfect. That makes me so sad.

Okay, reality check. Parents get ashamed of their kids sometimes, right? How many times have I cringed when Ben walks out of a friend’s house, letting the door slam in the face of the mom who is saying, “Thanks for coming over, Ben! Bye!”
“Ben! Say thanks! Say goodbye!”
“Bye,” comes the muffled voice from within the depths of the red hooded sweatshirt.

Maybe I get sad because I want to be able to go to a party and just have it be an easy show-off of my kids, but I am too small-minded to be able to feel show-off-y about Nat sometimes. I try so hard to see all of his progress and virtues, and I tell everyone who asks, rattling off everything from how well he transitioned to The House to his four jobs to his helpfulness and ease with everyone. So good, so good. So much to thank God for.

But — not good enough? I think it is, but then again, is anything?


All I can say is that all your children are fortunate to have a mother who so unreservedly and honestly examines her life. In this way, you do all that anyone can ask of a parent. You love your children; it is obvious in every word you write. Whatever you decide about this year's holiday parties; the decision will be the right one because YOU are the right answer. No one else could do it better.

— added by Matthew on Wednesday, December 16, 2009 at 10:26 pm

My son at times will bump into people in public or reach over to move a sign in a store or pull a chair out from underneath another person's table at a restaurant. People do stare and don't understand. It feels awkward and embarrassing. But, I know this is a means of expression/communication for him. He has frustrations and OCD, and they sometimes result in behaviors that I cannot control. I have found that as people spend more time with him, they appreciate the amazing things he has accomplished and do not dwell on or judge the small stuff! Jane

— added by Anonymous on Thursday, December 17, 2009 at 12:58 am

Hi Sue,

Wow, I could SO have written that post… except that Jack is still more in the "lick the chip phase! We are going to be "partying" with him this weekend and I am stressed already. Thanks for putting words to it! — Cathy in CT

— added by Cathby on Thursday, December 17, 2009 at 6:33 am

I took Dylan to a Halloween gathering up the street this year and it was such a disaster. Some neighbors were christianing this huge outdoor patio area they built on the side of their hill. My neighbor, in her true Martha Stewart fashion, had fake fall vegetables and leaves strewn around.This was just a perfect stimfest for Dylan and he took full advantage. I really felt like our presence made everyone extremely uncomfortable, (alot of my neighbors extended family that I don't know well) What hurt most was, here is this beautiful little 5 year old and everyone completely ignored him, (well, tried to), except of course the one woman who acknowledged his issues and explained to me that if I put up more of a fight for the right therapies etc he could be "cured" Then the inevitable meltdown when it was time to go, complete with bloodcurdling screams, throwing himself on the ground and scratching, confirming everyones suspicions, I'm sure. When I got home to Brad who was happily giving out candy, I had to pick a fight with him because it occurred to me that he is never around during these awful situations…its always just me somehow. Happy freakin halloween:(

— added by eileen on Thursday, December 17, 2009 at 6:41 am

Eileen — I had to read your comment to Ned — so fammiliar and also — so funny at the end "Happy Freakin' Halloween!'" That is you, right there: the sense of humor carries you.

— added by Susan Senator on Thursday, December 17, 2009 at 7:10 am

Is this the Jane whose son is Chris? So good to hear from you.

— added by Susan Senator on Thursday, December 17, 2009 at 7:11 am

I only take the younger to "do's" where I know things will go "ok" or if not nobody's going to panic.

He does well in restaurants and stimmed happily, but sat in his chair and ate his meal quietly at the church Xmas dinner.

I didn't take him to the school play. Friends of ours told my dh I was over-reacting but I'm tired of his stimfest on the stage and although the village is kind and we don't keep him hidden… wasn't worth it. And again, since he'd been to that restaurant more than once after church they'd made his "usual" (hamburger, no toppings, mashed potatoes) for him without even asking for the Church Xmas dinner.

Xmas is mostly family outings. These we can all handle easily. Oh, there will be plenty of spinning and flapping… but nobody's going to stare.

I don't send him out to social events full of strangers in strange houses. I'd rather hire a sitter… Bad Mom??

— added by farmwifetwo on Thursday, December 17, 2009 at 8:01 am

"And they see his limitations, and my inability to fix it. I hate that I still feel that way sometimes. I hate that there is this drive to fix everything, to be perfect. That makes me so sad."

You do the best whenever you can. I've become better and acknowledging when to take my son out, and am doing so more frequently. At friends backyard parties, as long as the yard is fenced in he comes with me. He does his own thing and that's generally ok as he's not a chip licker 🙂

Taking him out in public is sometimes more difficult. He was not pleased when we had to wait to eat at a resturant on Sunday, and had a small meltdown. So we left and found another place to eat with no wait. He's good for about 45 minutes with a lollipop then he gets antsy. You don't want to raise him in a bubble but you do not want him to be intrusive, and usually he's not – but our projections about his behavior make it hard. So hard.

— added by Someone Said on Thursday, December 17, 2009 at 1:09 pm

Jared had a phase where he would take a bath at whatever house we were visiting. You'd think he'd gone to use the bathroom, just not that much. Taking him to a funeral service for a close family friend was too much for me. I was so pent up that he would realize what great accoustics the room had, I hustled him out of there and triggered a meltdown at the door. When my friend, who had just lost his dad, wound up comforting me about the disturbance, it just compounded that feeling, that we can never seem to do ANYTHING like a normal family. D'oh!! After a brief pity party, I realized that the attempt means so much more than the actual performance. Don't stop trying to introduce these social situations, and praise them for the attempt, and don't forget to praise yourself for trying. Lisa

— added by Anonymous on Thursday, December 17, 2009 at 1:34 pm

Parties…oh boy. Even when things go well, we are on ultra-alert the whole time…it's exhausting. Hosts give often give us that super (over) warm sincere smile as we are leaving and say "See! Now didn't that go well!?" I have to bite my lip. They did not see everything we had to do to maintain that even-looking keel.

It's almost a relief if there has been some explosion or issue that can't be smiled away. It's more honest anyway.

— added by Nancy Bea Miller on Thursday, December 17, 2009 at 4:17 pm

Yeah — though I wouldn't call it "patronizing," there is definitely something not understood by The Others, even how it makes us feel to be (kind of) pitied.

I neglected to mention that there was a phase when at other people's homes Nat would escape and find a bedroom with a pillow and "make privacy."

— added by Susan Senator on Thursday, December 17, 2009 at 4:40 pm

Yes, it's Jane – the mom of Chris! Thank you for your candid observations that remind us we are not alone. Happy Holidays to you and your family!

— added by Anonymous on Thursday, December 17, 2009 at 6:33 pm

I went out to lunch (one of many many such out to lunches) with a close friend and her 17 year old son who has autism. I've known him since he was 4. We hadn't been out together in awhile and were out of practice. Usually we double team, scan the area and each of us links arms with him, in a friendly fun manner. Forgot that part this time. We were walking nicely through the restaurant and he did one of his happy jump up in the air stimmy things, and artfully landed at just the right spot and angle to take someones entire order of fries. I hustled him around the corner and hear his mom say "I'm so sorry, I'll get you another order" to a shocked looking older woman who says "Oh that's okay", to which my friend replied "it is so not okay that he did that", because it really is not. The 3 of us found my husband waiting for us and sat the young man next to him, and went around the corner and laughed and laughed. Because in our world, although it wasn't funny, it was really really funny!

— added by miti on Thursday, December 17, 2009 at 8:18 pm

This is a rich topic Susan…I felt I should add that I TRULY appreciate it when people invite us with my "low-functioning" son to gatherings and parties. I know that sometimes we are NOT invited, probably for autism-avoidance reasons, and that really hurts. So even if the people who invite us don't really "get" all we have to do to maintain calm, I deeply appreciate our being invited. That they are open to the risk of someone acting "imperfectly" at their event speaks highly of their characters! I'm beaming out gratitude to all those select few who've taken a chance on us…

— added by Nancy Bea Miller on Thursday, December 17, 2009 at 10:34 pm

I agree with Nancy Bea – this is a rich topic and one not many people can fully understand if they don't have kids on the spectrum.

Once again, thanks for being honest and putting it out there. I thought my boys were the only ones to drink out of discarded cups (or, even ones other people are still using)! Even in fairly familiar places, with people who we love and who love us, I don't think I fully exhale until we get home. And at places where we don't know people as well, I feel like I've got ADD – constantly scanning the room, looking for my boys, worrying about what they are doing – all the while trying to nod and smile and act interested in the conversation I'm having with another party-goer.

Parties are definitely one of those places where my husband and I have adopted Ned's saying of "Get in, declare victory and get out" 🙂

— added by S on Friday, December 18, 2009 at 3:20 pm

And this would be why I started my autism mothers' support group. We have get togethers and playdates and parties, sometimes with kids, sometimes without. If a kid flips out or stims off the charts or breaks something, the usual reaction is "meh, no biggie," or "how can I help?"

I still have a very thin skin, so I tend to keep within our protective little autism friendly bubble. Venturing out of it makes me a huge ball of stress.

— added by ASDmomNC on Friday, December 18, 2009 at 3:57 pm

ASD Mom, you have such a great attitude. In fact, you all do. We certainly are a singular community, with such similar issues, no matter where on The Spectrum we find ourselves.

— added by Susan Senator on Friday, December 18, 2009 at 5:14 pm

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