Susan's Blog

Thursday, January 5, 2012

It Comes Back

When the boys were babies, I had a whole bedtime routine with them where I would say the “night-night song.” This was a long list of all the people who loved them very much. It ended with “You Are My Sunshine.” It was a lot of breath and kind of monotonous to be saying that stuff for years and years. And of course lately I find myself looking back and wondering how I ever could have minded doing things like that with them. At some point, it ends, all the little boy stuff. There is one time you say the night-night song, and you don’t know that it is the last one ever. You’re just relieved for a while. But you comfort yourself with the knowledge that there’s other things that take its place, other routines, other songs.

Nat had a period in his life where he sang a lot. He would sing “Where is Thumbkin?” where each of the fingers one at a time ask one another where the other one is.  Left thumb asks for the right thumb, right thumb responds “Here I am.”  Nat used to only do one hand, though; the other hand’s fingers never answered. Autistic Thumbkin, I guess. And so delightful, Ned and I still sing it to each other the way Nat did. I also remember being on the T with him and he would start up with “Frere Jacques,” repeating certain parts, and never moving onto the rest of the song. At first we on the train would listen with delight, to his high and rich little voice, but eventually we would all notice that there would be nothing after “dormez-vous?” And it would get a little annoying. Stim? Little kid irritation? Both?

But then, about 10 years ago, he stopped singing. Just like so many other things he could do, and then could not. People were quick to call this regression, and to ask me if he “lost skills.” Everything around Nat was always framed in scary and negative. Imagine if every aspect of your development is scanned and scrutinized, ending in the shaking of heads and the writing up of sad checklists. How suffocating. Now that I’ve learned the the concept,(thank you, Lydia) I see how so many interactions and events in our lives are obscured by the dark watercolors of ableism.

Now I know that Nat’s skills come and go and come back again. Old mothers know that there is power in patience. When I was a young mother, I was so raw, bloodied with my head slamming efforts and worries. It’s because the child is such an unwritten masterpiece. He’s smooth and whole. And then the constraints begin, the need to raise him, to cultivate him. Of course that is what we must do. Any parent, animal or human, must teach their babies how to survive, what to do. If the baby isn’t doing it, well — some will eat their young. Others — humans — largely don’t eat their young; instead, they try to fix them.

Is it purely semantics if I say “fix” rather than “work with?” Or is it symbolic of two very different mindsets? I think it is the latter. I think that fix implies broken. I think that words have levels of meaning, shades of meaning, that must be taken into account by sophisticated beings. We can’t just duck the responsibility of our words, claiming “That’s so PC!” Use a Goddamn thesaurus if you have to but pay attention to your words.

What is conveyed to a person who is constantly being edited? How can he feel at rest, how can he feel satisfied with who he is? Do we just say, “Tough shit, you gotta learn to live in this world.” Or do we try to change the world, one action at a time? I believe that we actually have to do both. I have to teach Nat all I can about how things work, but I must do that in a positive and encouraging way. He has to feel good about himself in order to thrive; it is that simple. When I was younger and it was so hard seeing how different Nat was, and therefore bad, I had to work really hard not to let those feelings show to Nat. But it was all so heart-hurting back then.

Thank God for being older. There, that may be the very first time I’ve ever said that. But it is so true. Because now there is so much delight being around Nat and experiencing the world with him. Seeing how a smile blooms across his face, and the giddy laughter bubbles out of him. I don’t know why he’s laughing, but it’s so adorable and it gives me a moment of happiness when I don’t expect it.

Not understanding Nat is a frequent source of my pain, but I have to admit that it is also a real source of joy. I can’t often predict his moods or his sudden laughter. I don’t know why he’ll email daily and then it’s “NO,” week after week. And then suddenly, softly, “Yes.” Now that I’m older, I can stand up against the changing winds and sometimes find them refreshing.  You never know what kind of weather is coming with the winds.

A new friend, ThAutcast, wrote to me yesterday, a propos to my blog post about parents vs. autistics. One of the things he wanted me to know was that I could get rid of my hair shirt and feel good with my Nat. I should stop second-guessing myself, this friend told me. I can talk to him however I think he’ll understand, because I love him and like him, and that’s the structure he lives within these days. “Sing to him,” my friend wrote.

Tonight I looked over at Nat and I sang this: “You are my sunshine…”

And he looked right at me, and then away, and sang the rest of the song by himself, his voice catching at the end, with a little giggle.



You are just the best. 🙂

— added by Jody on Thursday, January 5, 2012 at 9:10 pm

What a sweet, wonderful post. Thank you Susan.

— added by Penny on Thursday, January 5, 2012 at 9:27 pm

Yesterday I looked at my son and said one of his favorite lines to repeat, which is Lucy’s from Charlie Brown, saying, “Charlie Brown IS a blockhead.” He looked at me laughed and then told me to go to timeout for calling someone a blockhead. For a while my son called everyone a blockhead. He’s probably right. We’re all blockheads to some degree. I like Landon’s suggestion of singing…

— added by Dixie on Thursday, January 5, 2012 at 9:44 pm

LOVE this.

— added by Liane on Thursday, January 5, 2012 at 10:12 pm

Susan this broke my heart, made me laugh, made me think how this applies to all mothers, watching our kids grow, struggle, fail, suffer, and emerge. I simply love your writing.

— added by Rosie on Friday, January 6, 2012 at 10:00 am

This is a great post. I am always doing things to convince the school that my twins can do more than their IEP reflects. i feel I need to prove something, but why? I don’t think of myself as trying to “fix” them, but I suppose I am.
What does it make them feel when I always push them to prove how much they can do? Your friend has such good advice about just enjoying them. Childhood goes by so fast!

— added by Alice on Friday, January 6, 2012 at 11:06 am

So much love, beauty and truth in your words. Thank you for sharing.

— added by Tami on Friday, January 6, 2012 at 11:07 am

What a lovely post. I have so many moments like that with Justin, where I have no idea why he’s laughing, but I’m pulled into the moment and enjoy it with him. I’m glad I’m at a point where I can do that. Thanks for sharing!

— added by kim mccafferty on Monday, January 9, 2012 at 2:28 pm

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