Susan's Blog

Friday, July 22, 2016

Restive Pain

My emotions flicker like a tired eyelid. At the oddest moments, say in the middle of a soft cruise down a flat side street on my bike, my heart flips over. Just like that, sun behind a cloud, lights out. I’m sorry Nat. I wait for tears but they are just stuck.

Or there are the not-at-all-odd moments, like 3 in the morning, when I imagine the horror. Did someone hold him down and punch him, kick him? Was there actually a crack, a crunch as his ribs broke? Or was it some sudden, frightening fall, crash, face-down? Did he make a sound? He hasn’t cried in maybe a decade — but did he then? And no one knew? No one picked him up? What did he do with his hurt?

Why didn’t I know?

I guess on some level I did know that something was not right. (?) That stillness. That shutdown a year ago. The stiff arms.

Then, the more recent stuff. The inexplicable weight loss, digestion discomfort. Because of fractured ribs?

I am swept back in a terrible undertow of memory, to those earliest days as Nat’s mom, feeling something was wrong with him, somehow, but not willing to fully believe it. Not willing to do the work of convincing my world, not able to stick with that story taking shape in my mind. My baby. I was so consumed by him, long walks pushing the stroller up and down the hills of Arlington, Mass. Talking and talking to him. He was my other half, he was me. That’s how it has to be with a new baby, right?

But it’s never really changed all that much. He is there, before my eyes, when I sleep, when I’m awake. When he’s here, and sits down next to me willingly on the couch. He seems to look to me to understand things, to get things right. I don’t know how much he looks within for those kinds of answers.

His apparent fragile dependency is the part that kills me, but that also makes my heart burst open like a hot red poppy. That dependency is so dear, and so scary. That crystalline clarity of need and trust. His ability to trust — maybe now that I think of it, that’s his disability. That self-advocating we can do, but he can’t.

And yet. Arid hope blows dusty across my consciousness at those odd moments and I wonder. Maybe that ability to trust is also his strength, and will be his way through it.



Saturday, July 16, 2016

First Time Writing About It

I have to talk about it. Now. I am on the plane going home from the Autism Society of America Conference. There I presented a breakout workshop on Autism Adulthood: Strategies and Insights for a Fulfilling Life.

But I had to tell them. The end of my book is not written yet, after all.

On July 3 we were headed to a friend’s holiday party and I called Nat upstairs to come put on a new, festive shirt. He pulled his shirt off and there, screaming at me from his thin white chest, was a big yellow bruise. Fist-sized. I screamed for Ned. I don’t know how I formed the words but I did. “Someone has hurt Nat,” I shouted. I looked again, horrified, nauseated at what I was seeing. For there was more. There were faint fingerlike bruises on his shoulders, and more, fainter, yellow circular bruises on his upper arms.

Several hours later the Emergency Room doctor announced that Nat has three fractured ribs, and one more older healed rib.

It has taken me this long to be able to allow the rage, the pain, the hurt for my sweet son, to bubble up like lava from my roiling gut. This anger, anguish, is old, deep as the Earth’s core. And it will never go out.

An investigation is taking place. I have my suspicions. But we have already been told that we may never know what happened. This is the way it goes when someone of limited expressive ability gets hurt. Nat has trouble making himself understood. I may be the best person at understanding him at all, and I am lost at times. I have to rely on all my senses to determine if he is sick or sad.

I guess I now need ESP as well.

What kind of a beast does this to a sweet, well-meaning young man? Nat is a white ray of sun. How can someone want to hurt the sun? It’s just warm and reliable. Nat is warm and reliable, you can count on him. You ask him to do something and he will try his damnedest to do it. I believe that he does not want to be shut off from others because of noisy language. And so my heart has always hurt for him and my arms have always tried to connect him to all of us. He’s not perfect, but his heart is good.

What did he do? Self-stim around someone who couldn’t deal with it? Did he laugh loudly in their face? These are things that he resorts to when he needs to express something, it’s just that I’m not sure what. I do know his self-talk is regular words stretched out beyond recognition. They are the equivalent of a whisper, because they are Nat’s way of telling you without you being able to hear it very well. And the loud laughing? He is blowing off some steam, he is feeling something very strong. Maybe something is funny. Maybe not. But he’s got to do it sometimes. Other times he tries to control it, he tells me, “You be calm.”

I will be calm because what else can I do? I have searched for clues, looked into areas of his life away from me, probed for secrets. I still cannot disclose any specifics because of the investigation.

This agonizing mother cannot simply roar and gnash teeth. I need to be able to bite. So I have talked to the Disability Law Center in downtown Boston. They will take on my case.

At best — best! — Nat hurt himself by accident and people who were supposed to take care of him in our place neglected him, or didn’t notice. And when he was home on the weekends, because he is so independent with dressing, showering, we did not see either.

But let’s not forget: this did not happen just once. Nat also has an older, healed rib.


We have pulled him out of all of his settings and he is living at home with us again for the time being. Typical of Nat, he is in good spirits. I have been doing all I can to surround him with love, food, fun. Ned takes him on their long walks. Ben stayed with him when we had to meet with the team. Max came up just to be there. My sister drove 5 hours to stay overnight to see Nat, to take care of him and me. To be sure that her Godson is okay. My parents, Ned’s family, all our friends have been strong glorious walls of support for us.

But still. I don’t know how I will ever trust anyone again when what I want to do is rip heads off people.

It takes a lot of force to break ribs. But it takes one glance at a sickly yellow bruise to break hearts.

Friday, July 15, 2016

Not a ‘Feel-Sorry,’ It’s a ‘Feel-Good.’

How do you fill 168 hours of meaningful activity after graduation???

It was a good question that Rob Resnik, of Phoenix, Arizona asked the audience at Autism Society of America conference today. Several years ago this was a heavy dark problem for Rob’s son Matt, who is around my son Nat’s age and has a similar degree of autism — a lot. Back when Matt was entering adulthood, he could tolerate about “6 minutes” of work, according to Rob, who is an attorney. What were they going to do to foster independence in their son, and a satisfying adult life?

Rob and his wife Denise, a public relations director, turned to  Southwest Autism Association Research and Resource Center’s (SARRC’) “Rising Entrepreneurs” Program for help. Denise, Matt, and Rob did a little research and talking and thinking and came up with a bakery business. “I’m not a baker,” Denise said, smiling, “and you can ask my husband Rob: I’m not much of a cook at all.” Rob was not a baker either. Yet the idea of the bakery seemed right, seemed doable. With eight eggs, a Kitchenaid blender, and Denise’s grandmother’s mandel bread recipe, a biscotti company was born: SMILE, which means Supporting Matt’s Independent Living Enterprise.

Although baking was not their area of expertise, the Resniks were not burdened with fear of failure. In fact, Rob described his attitutde as “let’s see where this goes.” It may be that it was just this light, confident, but zenlike approach that brought them their success. They were wise to partner this outlook with very little capital expenditures — less to lose. They spent money on insurance but little else. They learned quickly, that making partnerships in the community was the way to ensure success. Rob said that there was no grants, no capital contributions, and no donations. They borrowed the commercial kitchen of a homeless shelter one day a week for baking. They were able to pay their employees — two other developmentally disabled young adults, Eric and Rachel — a living wage and stay in business.  Eric is a coworker. He’d never worked before. But Eric eventually trained Rachel, another coworker. Rachel was working in her dad’s office. After two weeks of working for SMILE she quit her dad’s office. She does baking at home but also talks to the Point of Sale people at the markets.

The plan was to fit the company to the employees’ needs. If someone needed a particular environment, they could do their baking at home, rather than at the shelter kitchen. They fit the tasks to the skills. There was a strict routine: Sign in; do schedules for each person; do the packing; take breaks; etc. Matt started the day with instructions on his iPad, like “wash hands, put on apron.” Tasks were broken down into small steps if that was what Matt or his coworkers needed. Now there are six employees.

The Resniks added a special ingredient to their business: a thank you note written to the customer, by Matt and his coworkers, is inserted into each box. Denise explained that their edge would be that this product would make people feel happy about their purchase.

And Matt? He now works 6 hours a day. The bakery is his consuming passion. In fact, while I was watching the family present a workshop at the Autism Society of America Conference in New Orleans, Matt was seated at the table in the front of the room, wearing a chef’s hat and apron, working on a shipment.

Now the Resniks have announced that they are transitioning the name of their company to Supporting My Independent Living Enterprise — they are hoping to teach others around the country how to develop SMILE bakeries. This put a huge, well, smile, on my face because my Nat loves to bake and needs a new job…

SMILE is a success. They sold over 150,000 biscotti to date. Denise felt that part of this success is due to the fact that everyone by now has someone with autism in their lives. And only now are people beginning to see guys like Matt and Nat out in the world trying to make their way. But instead of wringing their hands, the Resniks roll up their sleeves. Because they have an idea that works. “When people approach SMILE, it’s not a ‘feel sorry’, it’s a ‘feel good,” Denise said.

And it’s a taste-good.


Monday, July 11, 2016

What Happened?

Long yellow phantom fingers slide over your shoulders

Ghostly mouths cry from your arms

Ribs are slivered, silvered, glinting, teeth inside white skin

Seething with each breath, searing you

But you are silent

Or did you try to tell us

In those days so still. Stiff arms, stuck legs

Didn’t I know, though?

And then there’s the laughter to consider

Was there someone, red-angry, sucked dry — a human scab — held you down, bashed your chest

While a hundred blind eyes turned back to their Day