Susan's Blog

Tuesday, August 24, 2010

Love the one you’re with

This is the second day of battering winds and cold rain on my Cape Cod vacation.  You might find yourself saying, “Oh, that is really too bad!  Ugly rain on your vacation!  You have to be indoors and bored and trying not to eat to console yourself.”  Of course, you could also say, “Wow, you get to be on vacation in the most beautiful place on earth with your true love and ultra cute sons.”

Which is the truth?  It’s both.  How do I balance contentment with the human condition of dissatisfaction, and the drive to have the best/be the best?  Lately Ned and I have been really into Louis C.K. (the link I’ve given you is much more restrained than his usual stuff, but still funny).  The other day, Ned quoted from him, saying, “The key to being happy with your body is to want the body you have. In my case, you just have to want a shitty body.”  The thing is, unfortunately this is the truth.  Loving what you’re given is so much a part of happiness, yet it is one of the most challenging things to do.

It is also not what we are supposed to do — not entirely.  Because even as I try to curl up softly and contentedly with what I have, there is all that I still want, and that I am working toward.  My children are the best example of what is given, of what I have, but there is no way on earth that I’ll simply let them be exactly who/what they are.  They have to be pushed to try things and grow.   We say we love them for who they are, but we also love them for what they could become, if they push themselves.

I’ve always been trying to balance this dynamic, so that I am not pushing them to be something they’re not, thus giving them a bad message about themselves.  But — who they are is changeable, improvable!  So how do you do it right?   For example, over the years, I have learned that it is important not to view Nat’s autism as a defect, but rather as a collection of characteristics that are both him and not him.  This makes it all the more complicated, trying to get him to grow.  He’s like a big beautiful sunny meadow of flowers:  but which are the “real” flowers and which are the weeds? If you pull out too much, what will you have left?  If you completely replant, haven’t you changed the original essence?

I have heard virulent ABA-ists talk about stomping out all of the autistic behavior, in order to make the child fit in better.  Of course we want him to fit into the world, to find his place, and yet, at what cost?  Perhaps his self esteem will suffer, perhaps not.  The cost may be something more broad, like a vague pervasive unhappiness and feeling of discontent permeating the family atmosphere.

Sometimes I envy those autism parents who are just so sure of what is bad about their child, or fixable.  They have it all stacked up, solid and immutable.  They have a list in their heads of what is what.  I have never had that kind of certainty.  I have always seen the dreamy spacey qualities in Nat as both things to work on and things to let be.  I have sometimes (often) simply been in love with his autistic traits, such as his ability to sing the erratic movement of his wagon, as a little boy.  Or his odd verbal formulations that truly express the sentiment, far more than the “correct” usage:  “It’s a different, that’s okay.”  Or his soft self-talk, wispy whispers of things he needs to say, but also needs you not to hear.  How can I explain this to you, you who might say, “I have no right to complain to you because you have it so much tougher with that” that you have every right? I don’t know the depths and darkness of your misery, and you don’t truly know mine.

There is no way to compare one child to the next, one family to the next.  It is all about what it feels like.  It feels good to me to have this particular messy garden, where stuff dies one year and inexplicably grows the next.  Louis C.K. probably has it right:  he just loves his “shitty” body, rather than feeling miserable about the body he just can’t have.  The real truth, however, is that it is not a shitty body if it is alive and giving you joy.



— added by Niksmom on Tuesday, August 24, 2010 at 9:14 am

I have to admit, with the younger and his autism I’m flexible. With the elder, I’m more rigid. Probably b/c I know the younger will aways have difficulties, whereas the elder is “normal-ish” and the world is VERY cruel to outsiders. And at the same time, there are social/behavioural skills he must learn to survive them on his own. Unfortuately, unlike many children on the upper end of the spectrum, he has no idea he’s “different” – his peers just shrudge it off and he’s never been told – so, starting in Gr 7, there are new kids coming into his sphere and I suspect he’s going to start hearing things……. He’s been warned…. but of course being a tween… he knows better than I…

I no longer lose a lot of sleep over what could be…. They are growing, they are doing amazing…. The teen years are coming, and I need to save up my sleep for them…. YIKES!!!! I’m sooooo not ready.

— added by farmwifetwo on Tuesday, August 24, 2010 at 10:09 am

With my youngest, now that he’s back to being happy and not suffering from gastrointestinal issues every five minutes, I can really sit back and feel that I don’t want to eradicate his particular expression of autism, as long as he finds love and fulfillment on his terms. With my oldest I find acceptance far more difficult, because I keep banging my head against a wall when I contemplate his being without me to protect him for close to half of his life. I think I will be working on this issue for a very long time…

— added by kim mccafferty on Tuesday, August 24, 2010 at 2:09 pm

I think that’s a wonderful point about the need to be careful to differentiate the behaviors that you should work on because they will prevent the person from living a fulfilling life, from the behaviors that are maybe just quirky or outside of most people’s expectations. And those behaviors can change over time- maybe a behavior was interfering with the person’s opportunities to go out in the community or preventing him from being able to participate in his favorite activities a while ago is now just a funny and charming quirk, or vice-versa… I have to say that for many of the students I’ve been blessed to work with over the years, every single one has had some very unique quirks and mannerisms that are part of the reason I found them so enjoyable and fantastic, and couldn’t be taken away and still leave the same individual.

— added by Rachel Freedman on Wednesday, August 25, 2010 at 6:18 pm

Looks like you’re Cape Cod vacation is having some better end of the week weather:) Hope you’re all having fun.

— added by Michele on Thursday, August 26, 2010 at 8:08 pm

And then sometimes you don’t really get the choice. My son has a lot of things to work on and we would never in a million years be able to “pull all the weeds” so to speak. So I pick the biggest ugliest weeds whose roots are choking the life out of the flowers- those are the ones we pull. The other ones get to stay, and sometimes they bloom too. Have I taken your flower analogy too far? LOL.

— added by bensmom on Thursday, August 26, 2010 at 10:36 pm

Susan, you have just explained in one paragraph exactly what I have been thinking for the last 11 years of my life with Jeremy…bless you for putting it so eloquently.
“He’s like a big beautiful sunny meadow of flowers: but which are the “real” flowers and which are the weeds? If you pull out too much, what will you have left? If you completely replant, haven’t you changed the original essence?”

— added by Candy on Tuesday, September 7, 2010 at 1:13 pm

I found your blog when I googled putting tulle on a gym ceiling. My son is on the spectrum so I was immediately drawn to your other posts.
This is my favorite post yet. This is just how I feel. Henry is very high functioning now at 4 1/2 and we feel very blessed and grateful for early intervention. As I write this he has his ABA tutor and supervisor working with him outside. I have struggled with this so much and your comparison to flowers in a a meadow really struck me. I love the way he is. I’m worried about his life some day when his cute quirkiness can be interpreted as weird. But I don’t want to try to stamp out of Henry what makes him Henry.

— added by Angela on Monday, October 18, 2010 at 5:14 pm