“You put the toast in the basement. That made me sad.” Emma stared at me expectantly.
I drew in a breath. My chest felt tight. I knew exactly what she was referring to. We’ve had similar conversations, but she’s never said it so directly.
This past fall in one last gasp of determined insanity I decided that I hadn’t done the gluten-free/casein free diet “right” when we put her on it a month after she was diagnosed and still two-years old. So this fall, I took Emma to a naturopath, who’d been recommended to me, and after a number of “tests” he mapped out an even more restrictive diet than the standard GF/CF. You can click on the links I’ve provided for more about all of this. On the first day of the diet I cleared the house of all the foods Emma loved, but could no longer eat, according to the new diet. Except I forgot to remove her favorite bread.
That morning she saw the bread and attacked it with the vigor of a rabid dog. I whisked it away and hurried down to the basement with it, where I threw it into one of the large garbage bins, while Emma screamed and clawed at the door in an attempt to follow me. I had it in my mind that it would all be worth it if the diet worked. Which, to me, meant that she would suddenly begin to speak in beautifully articulated sentences, would be able to concentrate, would be able to comprehend what she read and would eat a wider range of nutritious foods. Only the diet didn’t “work.” Just as the GF/CF diet we’d put her on six years before, didn’t work.
Emma after 6 weeks on the diet
In many ways, that diet was a turning point for me. After a couple of months on it and no change other than a significant weight loss, I reintroduced Emma to all her old foods, the foods she loves, the textures and smells she was familiar with and she was in bliss. But Emma remembered those seven weeks when I had taken everything away from her. The trauma she felt as a result of my actions was something I have been aware of. I have, on several occasions, told her how sorry I am for what I did. I have spoken at length to her about it, but in all those conversations, Emma has contributed very little until last night. Now it was clear she needed to express herself.
When I started making decisions about treatments for Emma, many of them Richard did not agree with and he, thankfully, said, “No. We are not going to chelate.” Or “No. We are not going to subject her to B-12 shots.” Or “No. We are not going to take her for another hyperbaric chamber treatment.” There have been a number of things, that in my desperation to be a “great Mom” I would have tried had my wise husband not stopped me. These are not moments I am proud of. I have made a lot of mistakes. This last diet was just one in a long line of bad ideas. I know I will have more. I understand it is human nature, but I also will be damned if I’m going to try to gloss over the choices I made that hurt Emma.
I promised myself long ago that when I became aware of a mistake, I would try to make immediate amends. I don’t mean a quick, “Oops, sorry about that.” I mean an amends. Which is different from an apology. An apology is what you say to someone you bump into by mistake on the subway. An amends is when you seek to change your behavior so that you might at least have the chance of not repeating that mistake. I try to do that consistently with both Nic and Emma. I am sad to say, I have had to make a great many amends over the course of their short lives and some I’ve had to say over and over because I just can’t seem to get it right. So when Emma said to me, “You put it in the basement. You made me sad.” I knew what I had to do. I knew I had to listen to her. I knew I had to resist the urge to make it better. I knew I had to be present, no matter how much it might hurt to hear the things she would say, I owed it to her. I had to give her that, at least, I needed to give her that.
I put my hand on her arm. “Tell me, Em. I promise to listen.”
Emma nodded her head. “Never, ever. You put the toast in the basement. Mommy no! Ahhhhh. Mommy please!” She pretended to grab at the bread and then she made a muffled screaming noise. She got up off her bed and twirled her string. She looked over at me. “You made me so sad. Emma’s crying.”
I nodded. “Emma. I’m so sorry I did that. I made a terrible mistake.”
Emma looked at me. She put her hand on her chest and she said the following words that broke my heart. She said, “You have to say you’re sorry to Mommy.”
I thought about all those Autists who talk about their awful childhoods and how they were made to feel broken, not good enough and that it was somehow their fault for the terrible ways they were treated. I thought of how those feelings about themselves continue to bleed into their lives today. I thought about how they felt they needed to apologize for who they were and how so many of them believed these lies and some continue to.
“Oh God, Em! No. No. You did nothing. It was not your fault. I was wrong.” I put my hand out to her. “I should never have done that. I am so, so sorry.”
Emma came over to me and sat down. She put her hand on my shoulder and leaned her head into me and said in a quiet voice, “Mommy says I’m sorry. No more bread in the basement.” She paused and then said, “But next time just one?”
“No Emma. Not one. Not any. I will never do that to you again.”
“Not one. Zero.” Emma smiled.
“That’s right. Zero.”
“Not one, not two, not three…” Emma counted up to one hundred. When she got to a hundred, she smiled and made a zero shape with her hand. “Not one hundred, only zero.”
I smiled. “Yes, Em. Only zero.”
Emma nodded and then she said, “Mommy lie with Emma and read stories.”
“Okay,” I said. As we snuggled under her blankets together I said, “Who’s the most amazing girl in the whole world?”
“I am,” she said with a smile.
The Depiction of Autism and Why it Matters on Huffington Post