“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
Love button! I am too emotional to respond too much. This so wonderful in so many ways. That is all. 🙂
Oh Angel. Thank you for the “love” button. That just made my day!
Thanks for everything you’ve always done — right or wrong — to help Emma, to help all of us. You’ve always done the best you can, and you’ve always done all you can. I love you. Nic loves you. And Emma loves you more than anyone.
Thanks for this, Richard. Thanks for always being there for me, for being such a great partner in this crazy life of ours. For being such an all around amazing human being, and now PUBLISHED NOVELIST! More on that in tomorrow’s post! ❤
Such an extraordinary mother-daughter moment- thank you for sharing.
Thank you Andrea. So glad you commented.
Praise God for willingness to be humble, for willingness to under stand, for willingness to show up, Praise God for forgiveness, for beginnings and endings and the messes in the middle.
Very special……in so many ways.
Aw, thanks Becky. I’m awaiting your friend request…
I’m crying ,
Accept Emma’s forgiveness and then, don’t forget to accept your own.
In Judaism my favorite holy day is the day of atonement, Yom kippur. This is when you forgive anyone that you think hurt you in any way, and you ask forgiveness of everyone whom you might, even inadvertently, have harmed at all. The beauty of the day is that everyone feels better afterwards, and no, it doesn’t mean that you’ll never make a mistake again, it just means that your heart and arms are open to give and receive forgiveness.
Love this Mom. Thank you for writing it. And love you!
When you worry about autists who remember a terrible childhood try to keep in mind that unlike the parent’s of many of us you came to your senses about why that approach was wrong relatively early in your child’s life.
It took my own mother until very late in her life to be a better parent to me (I am 44 and I would say it has been the past 6 years) Because of my age and the way autism was depicted at the time she will forever block and deny the diagnosis from her mind (it is however officially in my medical record from a young age) but were you to ask her to describe me she would in doing so hit pretty well all the major things about autism but to her that’s just me.
Many damaging things were said about me right in front of me because of what was believed about autism and about my own capacity. You should give yourself credit for being able to learn from your child and being open minded enough not to dismiss the experience of adults with autism as many parents still routinely do. Your daughter has forgiven you it seems so you can both forgive yourself and give yourself credit.
Thank you for reaching out. I’m sorry your mother has been unable to see YOU. She is losing out on so much.
Of course she cried, you should have at least composted that toast instead of throw it in the garbage. Nah, that’s more something I would have cried over, being an environmentalist since an early age.
Emma will surely appreciate you listening to her, and better yet admit that grown-ups make mistakes, too. It’s always good to have a family that understands you when the rest of the world doesn’t seem to. Unfortunately not all autistics have anyone who makes them feel at home.
: ) Thanks for the smile regarding the importance of compost. Of course an argument could be made, as we live in New York City, that compost is something sadly lacking in this great city.
She will remember (and appreciate) your graceful response throughout her life.
Thank you adkyriolexy, a word you have just introduced me to!
I admire you for having the courage to apologize. Bravo! In Orthodox Christianity, there is Forgiveness Sunday, which is before Lent, and we ask each other for in a Vespers service to forgive the sins of the other person.
Thanks Xenia. I guess I’ll need a number of those Vespers services.
This was so beautiful. I’m completely choked up. Thank you so much for sharing.
Thanks Marsupial. Appreciate the kind words.
I think at this point my mom does see me more clearly and with more love than she has previously been able to. It is just too painful for her to acknowledge the autism because of the generation she is from and what was thought about it back then. I came to terms with this and while it occasionally still hurts she actually goes to pretty great lengths to accomodate my autism when I visit without acknowedging that is what she is doing. She is dying now so I think I have to accept the way she sees me and acknowledge that at least over time she has grown fond of aspects of myself she once detested or sought to change. That is for us as good as it will get and I am glad their are people, like your daughter for whom it is better.
Gareeth – I appreciated reading your comment. What a circle life is – she’s learning to accept you, and you’re learning to accept her and how she accepts you.
Gareeth, I’m sorry. I have found acceptance to be the answer, it’s just very hard to get there and there are some things that I am not even close. I guess the point is to keep moving towards it, like the light at the end of a tunnel.
hi… new here… and that was lovely
Hi Thorgerdur, welcome and thank you.
“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.”
I hate to put salt in the wounds or anything but this is the problem… I cannot really blame you though. It must of have been parent peer-pressure and I hear about these sort of things a lot.
I’m an autist who is on the GF/DF diet. I’m also avoiding soy and a whole laundry list of other foods, but it was never about just helping with autism. Gluten does horrific things to my colon, dairy gives me headaches (mild seizures as a kid), soy (especially as of recently) gave me terrible cramps during menses and made me near-suicidal. All of these things can prevent anyone, including the neurotypical from living healthier.
I’m just glad you and your daughter made up though. That had to take guts and it’s not really something parents often do. Kudos. ❤
I have heard a great many people,not just parents of autistic kids, who have seen a significant difference while on the diet. One of those people is autistic and as we are close and spend a great deal of time together, I have seen first hand what wheat and dairy do to him, and it is more than a slight difference. His digestive system is unable to process those foods. When Em was first diagnosed it was one of the first things we did, that and an intensive ABA program. The thing is Emma stopped eating almost everything. I have written about this at greater length so I won’t go on about it here, but she didn’t begin eating other foods, she just stopped eating. After more than three months and no change to her GI issues or anything else for that matter, but a massive and frightening drop in her weight, we took her off it. Hearing stories like yours was the reason I made one more last ditch attempt this past fall. Sadly it did nothing, other than again cause her to eat very little and lose 15 pounds, which is significant for a child who only weighed 83 lbs to begin with.
I do not feel that just because the diet didnt help Emma that therefore it will not help anyone, I am speaking only of our experience with Em. Even now I have people say to me, well you needed to give it at least two years before you can really say it didn’t work. And my response to that thinking is – I prefer to have my daughter alive and at a healthy weight, though I appreciate their concern.
Really glad it is helping you and yes, I know others who have been helped too, just not Em. Thanks for reaching out.
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Very touching story! Making amends is so important. Thanks for sharing! 🙂
I am on the spectrum and also am GF but because it makes me less lethargic, less foggy in the brain…less fog though does not mean less autism. As a 43 year old on the spectrum, for me, it means the ability to “see” my more unproductive, less helpful autistic thought patterns, etc., and to make adjustments (sometimes…sigh…).
It would be hard to be a parent of a child on the spectrum and not try everything in this current culture of homogenizing humans in general. No one is allowed to be very different, not just on the spectrum. Slightly depressed = mentally ill, for example, and that too is unacceptable.
And thus the need for a huge neurodiversity movement.
Yes, I agree. I have thought long and hard about whether I would put Emma on the GFCF diet when she was first diagnosed, had I known what I know now, and I would have, because I’ve heard far too many stories of people who have been helped, even just a little. What I would not have done, and regret doing was putting her on it again this past fall. But my motivation was because of stories about “fogs being lifted,” “clarity being gained” etc. And I thought since I work with her on her literacy every day, I would certainly see a change.
It’s always good to hear of others who have gone GF or CF or a combination of the two and have seen and felt the benefits. It’s good to know you’re one of them.
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Wonderful story. We all make mistakes with our kids thinking we’re helping them, but if you listen to what they try to communicate with you, you will know better what they need. What they need may have little to do with what the world “thinks” they need. You’re a great Mom! And kudos to your husband for being a voice of reason.
Thank you PDDNOS, yes, so grateful to my husband, for that and so many other things!
You write beautifully. All of us on our journeys will make mistakes. What we do after is important.
Thanks Dixie red
My mother said to me once, “Love your children, show them, tell them and one day they’ll forgive you.” She spoke from experience.
What an awesome story. Sometimes something doesn’t work for everyone, and it takes a lot of courage to admit that and to apologize to your daughter for your mistakes. Thank you for being kindhearted and seeing what was happening instead of sticking to something which wasn’t working just based on principle. Here’s to hoping you find more great ideas which do work.
Thanks so much Alecta.
This story brings tears to my eyes, because 13 years ago I was in a similar situation. I tried many things, like the GF/CF diet, etc. It took me a long time to recognize that my daughter wasn’t broken and I didn’t have to fix her. There were many things I could do for her to help her and support her, but it started with accepting and celebrating who she is. Next week she is graduating high school and I couldn’t be more proud of the woman she has become. Thank you for this beautiful story.
Thank you so much for sharing this story about your daughter!
Such a moving post. Thank you so much for writing it – I can tell it wasn’t easy.
Thank you. The hardest part has been hearing her pain, knowing I caused it. And not trying to dismiss it, make it better or rationalize and justify it.
every day is a new one. There are more days of happy to come than sad days gone. Sorry if that’s a bit inarticulate. xx
Dang, Emma. “That makes me sad” isn’t something I could articulate well into my 20’s. Just…dang, girl.
This comment fills me with hope, in a way that no specialist with their “learned” opinions could possibly do. You are such a beautiful writer, so when you tell me this I just feel… so hopeful!! Thank you for giving me that.
I applaud your courageousness more than you can know. LB/RB posted a link, I followed, read your post and every comment. Your timing couldn’t be better as it comes on the heels of a turning point for me regarding the treatment of some autistic children. You give me hope. It sounds as though you have an amazing supportive family and I wish all of you the best in your journey together.
Thank you so much Science Mom. Really appreciate the words of support and encouragement!
I am by nature a cynical person and frankly the thoughts of the irrational fervour that the ‘warrior mom’ movement goes for chills me to the bone. As a result I’ve become very wary of a great deal of the parents in the autistic community who seem clearly dangerous.
But I have to seriously applaud this post. You did something that I imagine all of us find extremely difficult (and frankly I may be projecting more of myself here than of the author) and that is to admit error. A sense of pride as I see it is strong in everyone especially with things as heated as the autism community. But this is an emotional piece that bleeds its sincerity which I’m sorry to say feels very rare nowadays.
Where misinformation is almost the order of the day I truly hope we have more families who can show your kind of courage in eventually facing themselves. Do not beat yourself up over your guilt over ‘what could have been’. You sound like you have a wonderful family and everyone makes mistakes. To get to the right path the roads we may stray on may be regrettable I just hope that in the future if others make the choices you do that the people on the other side are willing to lend a supporting hand.
I wish you and your family all the best for the future. May it be everything you hope it to be.
Thanks so much for this James. I really appreciate your kind words.
We all make mistakes with our children, but it takes a caring parent to say to the child “I was mistaken”. Thanks for you beautiful blog that explains that none of us are perfect. I am inspired by your candor and your gracious admission.
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