Susan's Blog

Wednesday, January 14, 2015

Waiting for the light to go on

This morning while driving I realized I was behind a van, one of those tall white ones, that transport either school kids with disabilities, or adults in day programs. The rearmost seat showed a hatted head, with gray hair sticking out underneath so I knew it was an adult van. Then I thought of Nat, of course. I remembered immediately that he would be at work this morning, in the supermarket parking lot gathering shopping carts. Small stab of pain in my chest, just the tiniest drop of sadness gathering there. Not because he is a person who has that kind of allegedly menial job. But because I wondered if he was cold. And that I had forgotten about him for the morning, until this moment.

The two thoughts merged while I waited for the left turn signal. The van in front of me became a blur as I remembered the actions I’d taken the other day, to protect Nat from being cold. I had heard from the day program that he was coming in without hat and gloves, and was wearing low socks. Right away I had talked to his caregiver John, whom I love, and who loves Nat dearly, and we’d figured out together what to do. John had then spoken to the day program, agreed about the socks, and then the day program director — also a good guy — pointed out in turn that he’d discovered Nat’s missing hat and gloves in someone else’s locker there. Problem solved.

It’s not often that easy. I often have trouble figuring out what Nat’s doing when during his week and it is no one’s fault. It’s just that he is involved with many people during his days. There are many parts to the Nat machine and keeping them all well-oiled and operative is still my job — even though I am no mechanic. I’m much better at the softer skills, the things I can see and touch, particularly when he is home with us on the weekends. I can look around the kitchen and see he has not yet eaten. Then the problem is to get him to initiate wanting to eat. That is a piece that flies away from me whenever I come near it, like a startled bird. You can never really catch those birds. I don’t know if I will ever get Nat to consistently ask for what he needs, let alone just take it. I am the proponent of “With autism, never say never.” And I’m not saying “never,” but I am seeing initiation for Nat with a big sigh blocking it. And I’m just as much an obstacle, because I love mothering in certain ways, and jumping to make a fun meal for him is one of my favorites. So the Goals and I seem to be at cross purposes.

Sometimes I feel that Nat and his adulthood, and I are at cross purposes, actually. I’m supposed to let him go, and be in the world independently, with the help of others and only sometimes me. But how in the world does one pace this type of thing? And yet it is happening, because I had indeed forgotten about him until I saw the van.

All these thoughts were tumbling through as my vision blurred and the van was a shadow. I thought, I am at such a loss about this letting go thing, because I am torn between wanting him to be a successful adult and with wanting him to feel like he still has the love and protection of his mother. Many of you are shaking your heads, smiling wryly about how I hover, or how Nat is so grown up and I just can’t see it. But do you realize that it hurts — hurts — to think that he might indeed want me more in his life and then finds that I’m not!

So there was that little pinch in my heart, that’s what it was. And then it kind of popped, like a blister, and became something else. For right there, next to those fast moving scurrying ant thoughts along came another memory, creamy and slow, like lotion in a bottle, almost run out: I realized I was at the very corner I’d been 24 years ago, where I was supposed to meet Ned and Nat (after my appointment nearby). And sure enough, Nat had materialized there, swaying atop Ned’s shoulders. Wobbily joyous. Then his face had lit up even more because he’d recognized me. There was that wide goofy baby smile. He was so glad to see me — but he had been happy without me, too.



What a lovely post, Susan.

— added by Shelly Senator on Wednesday, January 14, 2015 at 11:18 am

Thanks, Mommy! 😀

— added by Susan Senator on Wednesday, January 14, 2015 at 11:50 am

Beautiful, both in the crafting of images and in the sharing of heartfelt sentiments. You are incredibly self-aware, and it’s a treat to have you share your inner experience.

— added by Michael Forbes Wilcox on Wednesday, January 14, 2015 at 11:59 am

xo mfw

— added by Susan Senator on Wednesday, January 14, 2015 at 12:03 pm

I will be thinking about my son, and praying he is OK until my last breath…and after that too!

— added by Candy on Wednesday, January 14, 2015 at 1:09 pm

This is wonderful. Beautifully written. The writing takes us into this calm place of alertness. The details are full of images that surprise and delight. Your writing is so alive and warm and powerful. Thanks.

— added by Claudia Reilly on Wednesday, January 14, 2015 at 1:25 pm

That was a truly beautiful piece of writing and of thinking as well. I love reading your writing always, but this one was really a gem!

— added by Donna on Wednesday, January 14, 2015 at 4:59 pm

I like your picture of the old memory, creamy and slow, like lotion in a bottle almost run out. I understand these thoughts and feelings. My son Paul seems incapable, but then he’s very high functioning. I think it’s intriguing how the forms of the boy change to man forms, but he is the still the same soul, eternally youthful, yet with wisdom and now experience. I guess that goes for the Mom too.

— added by Susan Anderson on Thursday, January 15, 2015 at 9:45 pm

Thank you so much for sharing your feelings and thoughts with us. I love reading your blog. You let us see things from your perspective and your son’s perspective.

I understand the point you are making. “But do you realize that it hurts — hurts — to think that he might indeed want me more in his life and then finds that I’m not!”

Parenthood is the hardest job in the world. It is the only love where the goal is separation. You get your child prepared to live and you work yourself out of a job. Because the day will come when you are no longer able to be there for your child.

Your son is happy that you are his mother. I like your philosophy of never say never with autism.

— added by Maria on Sunday, January 18, 2015 at 7:30 pm

Beautiful Susan, just beautiful. I want Justin to live independently of us during the week when he’s 21, but I also wonder if he’ll continue to want my daily presence, and that question pulls at my heart. You said it perfectly.

— added by kim mccafferty on Wednesday, January 21, 2015 at 10:43 am

Thank you for sharing this. As my children get older (my oldest is 16) I look ahead with worry. I want the best for them, but I know the best isn’t currently available. At the same time, there is a young man who collects the carts for one of my favorite stores. He clearly has a disability, but even when he’s obviously cold he’s always cheerful and attentive to the needs of the customers around him. He is the absolute best cart collector I have ever met! So, there is hope in that these jobs, which are allegedly menial, are also ways for people with disabilities to be visible and to show that they can contribute beyond just doing a job.

— added by Stephanie Allen Crist on Thursday, January 29, 2015 at 10:29 am

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