Susan's Blog

Wednesday, August 11, 2010

Let’s Start Packing

Rabbi, we’ve been waiting all our lives for the Messiah. Wouldn’t now be a good time for Him to come?

Rabbi: We’ll have to wait for him someplace else. Meanwhile, let’s start packing.

–from Fiddler on the Roof

I guess all families, all people really, must live with the unresolved.  I feel like sometimes I go around with the anxiety of the unresolved as if it were physical; I feel it right in my stomach.  It happens a lot when I think about Nat, and also Max and Ben, but maybe moreso with Nat.  Especially now that he’s not here for most of the week, and so a lot about Nat has to be taken on faith.  I’m not so good at having faith.

Sitting here on my living room couch, with creamy sunlight splashed across the frayed armchair nearby, I thought about the things that I had to get done in the rest of the week.  Any peace that the softness of the scene could have given just shattered as I realized that the number one thing going on is Nat going to camp on Sunday.

Why do we do this to ourselves every year?  This is the third time we are sending Nat away to this camp in Colorado, and it is always an anxiety-producing proposition for us, and by us I mean me, Ned, and Nat.  Even if all the details were squared away, such as the packing of sunblock and sturdy shoes for hiking, (and by the way, they’re not), this trip is one big nightmare of worry. Thankfully, we are going to get the gear honey website to ship last minute items directly to the camp and so, that’s a relief. We send him on a plane with a teacher who knows him well.  She has to get him through airport security, a plane ride, a plane change,  into a rental car from Paris and across a mountainous highway to the camp.  And then there’s camp itself.  Extreme sports camp!!!  She’s never been there and actually this is a new location for the camp, so neither has Nat.  Same set-up though, of one-to-one counselors during the day, and the teacher with Nat during the night.

I am not going to go into all the details here because that will only make my stomach feel worse.  The thing in my head right now, that forced me to open up and start writing is just that sinister undertow of Unresolved, pulling beneath the surface.  What do I mean by “unresolved?”  I mean all the stuff I have no answers to, never a definitive, tablets-from-God certainty.  Is he alright?  Is he going to be alright?  What does alright look like when you are fairly severely disabled?  From Day One, we all wish for a manual that will tell us these things.  We read book after book, and google autism until we’re googly-eyed.

We all want to know:  am I doing the right thing?  How about this?  How about now?  What if I stop, because I’m so tired?  Why did we commit to this path?

What have I forgotten?

Why do we have to be human and flawed, and so we just end up having to hope for the best?  What if we never get the best, but only the so-so?  Maybe it’s just that the thing about my life is that I’m doomed to uncertainty, and that happier days are ones where I’m more certain.  But I don’t think I’ll ever be Sure.  And so I’m sending him on this trip, feeling like it will probably be okay, probably great, but dammit, I just won’t know until he’s back.  Meanwhile, he has to keep leaping faith, because I fly by the seat of my pants.


On a much smaller scale, I think about this all the time with my seven-year-old, whether or not I should try hockey with him, subject him to swim lessons I know he’ll hate but are so necessary, expand his horseback riding lessons to the Special Olympics next year, or call it a day. I just never know what he’ll like, but I’m trying to stop worrying about it so much beforehand so I don’t lose the moment if he does enjoy the activity. It’s a (long) work in progress… Hope Nat loves the camp again!

— added by kim mccafferty on Wednesday, August 11, 2010 at 11:43 am

I’m feeling all of this right there with you, although given not to the extent you are. Uncertainty sucks. I mentioned you in my latest blog post, on this very subject, in fact. Great minds think alike….and so do ours. 😉 Hugs to you. Enjoy Colorado. You deserve a break.

— added by ASDmomNC on Wednesday, August 11, 2010 at 1:24 pm

Does Nat like camp? I know it’s sometimes hard to tell when someone has trouble communicating with words; you might get “you like camp” repeated back to you after you ask and what with the confusion over pronouns (“you” means “I”) it’s sometimes hard to decipher the answer.
My two sons and my daughter aren’t autistic and words are no problem for them but while the girl will happily make her feelings known, the boys are much more laconic unless they’re really fired up about something. That means that while I know everything about what my daughter likes down to ice cream flavors and favorite authors and whether or not guys with goatees look stupid (they do) I’m often clueless about what the boys feel about things until it’s too late and arrangements are made. Now that they’re in college it’s easier; they can plan their own activities but I still have to watch them without letting them know I’m watching to find out whether the things I do for them are a welcome surprise or an intrusion. My hubby is an open book, but he’s the exception to the rule. Men are just harder to read sometimes.

— added by Jill on Saturday, August 14, 2010 at 5:14 pm

No doubt at all that Nat likes camp: the way he smiles when he talks about it; the way he answers “yes,” when you ask if he likes it, every time. He is not always echolalic. We know what most of his ‘yeses’ mean; he also says, “No,” firmly when he does not like something. Yes, my sons and husband are not forthcoming with their thoughts, likes, dislikes, other than geek stuff and food. But Nat is easy to read when it comes to the things he does like.

— added by Susan Senator on Saturday, August 14, 2010 at 5:47 pm