Susan's Blog

Thursday, March 10, 2011

Sweet Tension

Every weekend that Nat is home — and we are now starting to wean ourselves from that pattern, to prepare Nat and ourselves for Post-22 November — there is tension.  This is not to say that the tension is Nat’s fault; it is no one’s fault.  It is a dynamic.  Maybe I shouldn’t say “there is tension,” using the passive voice.  Because the thing is, it is I feeling the tension.  I am, and maybe Ben.  Nat and Max:  birds of a feather, ducks with water rolling off their backs, or some such foul analogy.

I feel the tension because I know Nat so well.  I know what he is looking for when he runs upstairs and then runs back down.  Well, actually, I don’t know why he runs upstairs first; maybe to burn off some of that high-octane energy of his.  But I do know why he runs down:  to check on everyone else’s routine.  I have written about this many times.  Nat gets very focused on what others are doing given a particular time of day, and he repeats to them what he believes they should be doing — over and over — usually until they do it.

We have been schooled over the years not to give in to this kind of behavior.  This may seem high-handed and centered on us and what we want, rather than on what Nat wants, but it actually is not, because giving in is sometimes actually escalating to Nat.  Nat often craves the safety of a firm remark, the closure of crisp, stark-edged reassurance:  “Nat, I will eat my eggs after my workout, and you have to stop talking about it now.”

I feel tense as I wait for Ned to finish whatever he is doing on the computer at any given moment, so that he can deal with Nat.  The tension happens with Ned because I usually anticipate Nat’s anxiety and I structure some of my routines around avoiding that.  I am a a wimp and I have failed Behavior Modification 101.

Ben also feels the tension.  He used to run away or capitulate at once, running to put on his shoes the minute Nat said, “Ben will put on his shoes.”  Even if Ben wasn’t going out.  I get a creepy feeling when I think about Ben feeling forced to do this unnecessary thing just to keep the peace; kind of like someone being forced to dance when a bad guy shoots the ground, saying, “Dance.”  Or a hostage who has to give the criminal all of his stuff.  I hate seeing loved ones humbled.

Now Ben makes faces at Nat when he is being bossy.  Or he mimics him.  I have such mixed feelings when I see this.  On one hand, I am so glad that he is no longer a victim, that he stands up to Nat, who is a foot taller and very strong.  But on the other hand, I feel bad for Nat who may be confused as to why Ben is shoving his angry face into Nat’s face.  Does Nat feel bad, like he is being harassed, or teased?  Is this just, that Ben should do this?  It makes me very uncomfortable.  I often say, “Ben,” with a little bit of exasperation in my voice.  And he’ll say, through gritted teeth, “But he’s SO ANNOYING!”

Nat just looks at him and blinks, but what does he think of that?  And what does Ben think — that I feel bad for Nat and no compassion for him?

The other day, however, I thought of a new thing to say:  “Ben, does it ever help to remember that he does stuff like that because of his disability — that his neurons have grown together kind of wrong, and they are making him really anxious?  What does that feel like to you, to think that way.”

Ben’s voice was rough and quiet:  “Uh, it makes me feel really sad,” he said.

“Oh,” I gulped. Oh. My. God. “Yeah, I know,” was all I could say, because my heart was in my mouth.


Susan – I loved this post. Every day there is that “tension” in my home – and my heart just aches for my daughter – who is 7 and has had to grow up so fast, has seen so much, has been subjected to so much – both of her siblings have significant special needs… they are older by 3 yrs, but she is the one that I have to expect to do things herself, do more for herself, help her brothers – if only for all of us to get through a moment. She adores her brothers, and they adore her. And I love to see her interact w/ her brothers at times like they don’t have special needs, just pure siblings dealing or playing together. At times I find myself trying to overcompensate for “whatever” with my daughter, and times I find myself trying to explain why things are the way they are for our family, why I need her to do more than most 7 yr olds. But then I also tell her, it’s okay to feel angry or upset sometimes and that its hard to be in our family. And then she tells me, it is hard, but that she loves her brothers and she loves me and that’s who our family is. Out of the mouths of babes!

— added by Linda on Thursday, March 10, 2011 at 9:42 pm

I hear that almost everyday…T saying to D…”D that is so annoying!!!!” I welcome the normalcy of it though…she just sees an annoying little brother and not the disability ( he is 6, she is 16) I have to give her credit, in our household I would say that she is the one who consistently expects the most out of him and doesn’t cut him any slack, and she refers to his disability as “mild” and treats him accordingly. She’s a tough cookie!

— added by Eileen from Florida on Saturday, March 12, 2011 at 8:13 am

You know, Eileen, I never considered that Benji’s responses may be colored by his own denial, i.e, that he doesn’t really believe Nat is so disabled, or he’d rather not see it that way, I guess. But maybe he doesn’t quite believe it and simply wants to hold Nat’s feet to the fire, to get him to behave the way he himself has to. Thanks for giving me this insight.

— added by Susan Senator on Saturday, March 12, 2011 at 3:03 pm

Susan, I keep hoping for Ben’s sake that he gets the opportunity to some day hang out with other kids in his shoes — who “get it.” — At a Sibshop. It’s so powerful for siblings to be able to just BE with other kids who have the same things going on in their lives.
One thing I’ve heard Don Meyer (originator of Sibshops) say many times (and, to be honest, I’m not sure I “hear” him) is that siblings often see what we parents don’t see: that the child with disability is often much more capable than what we parents give ’em credit for. Sibs will say things like: “My parents don’t think my sister can do anything like unload the dishwasher — but I know she can!” “How do you know?” “Cuz I make her do it when they’re out.” — Similar to what Eileen is saying.

I have similar experiences when I see my 11-year-old Matthew at school. He can microwave his own lunch? Really? He knows to clean up his spot after lunch? He washes out his lunch dishes and puts them back in his lunch bag? Really??? I always thought it was one of the paras who did that for him. 🙂 Wish he’d “show” all that ability at home! But maybe I should say, “We SHOULD expect that much of him at home.” …..

— added by Andrea Congdon on Sunday, March 13, 2011 at 12:00 am

Expectations are a huge part of things. Kids who refuse to do certain things at home, but at their schools or group homes do it all. Sometimes parents would come in and watch and I remember the kids giving me the “evil eye” like saying “How could you let them in on it?”. And on the other side, sometimes parents can show us what their kids can do. Often, parents excel at getting their kids to expand their language.
With the reorganizing or dictating actions to others- It helped some of our kids (res school I worked at for years) when we told them (or showed them) that it was fine to rearrange “things”, when they were frantic to rearrange the environment, but it was not okay to interfere with what other people were doing or the items they were using. That often worked as a compromise, as long as we were consistent. m

— added by michele on Sunday, March 13, 2011 at 9:29 am

I don’t think your “neuro-typical” sons particularly agonize over having a sibling with autism because that’s all they’ve ever known. Nat is the eldest and he has always been the way he is. To them, Nat is Nat and that’s that.

— added by Sunni on Sunday, March 13, 2011 at 1:22 pm

These same conversations were going on at our house this weekend. Jared’s little brother and I talked about how Jared seemed to turn up the volume and intensity of his annoying behavior this weekend. I let Thomas know that I was super frustrated by his brother, and he comforted me, and patted me on the back. Then we talked about appropriate responses to Jared’s behavior, and how the phrase “you suck” does not fall into any of the appropriate response categories. Lisa

— added by lisa on Monday, March 14, 2011 at 12:18 pm

My youngest, who has mild autism but is much more “typical” than my oldest with moderate, is already starting to ask a question or two about his brother at the tender age of 4. I think I’ll be making that Barnes and Noble run soon, hope there are some good books out there (and hopefully ones about telling your “high-functioning” child he has it too)…

— added by kim mccafferty on Monday, March 14, 2011 at 1:19 pm