It’s a little ironic that this blog began as a document of my daughter’s “progress” (which, at the time I defined as – becoming indistinguishable from her non autistic peers) and has evolved into a document of my progress and movement away from exactly that kind of thinking. I don’t really have a problem admitting the mistakes I’ve made, which is probably a very good thing as I am not going to get to a point where I never make any. But I do my best to learn from them. I try hard not to beat myself up. Sometimes I’m more successful at that than other times, but that too is a lesson I learn from. I didn’t get to any of this on my own. The progress I’ve made regarding autism, how I think about my daughter and because of that thinking, how I interact with her, is a result of the help I’ve been given. Help given to me by those who are Autistic.
I would be dishonest if I didn’t admit to times I’ve felt confused, afraid, unsure of myself, and incredibly vulnerable more often than I’d like, but that’s progress too. There was a time in my twenties and early thirties when I did pretty much anything not to admit I ever needed help, let alone asked for it. Thankfully I’ve progressed. So last night when Richard told me about running into one of Emma’s early intervention therapists and how it seemed she was surprised that Emma was not able to carry on a conversation with her, I felt a wave of something I couldn’t immediately identify. First I cycled through thoughts of “I don’t want to hear your feelings on this,” to “I wish you hadn’t told me about this” to the overwhelming urge to stick my fingers in my ears and yell, “LALALALALALALALA I CAN’T HEAR YOU LALALALALALALALA!!!”
Yeah. I know. That would have been childish of me. And by the way, I’m 52 years old. You have no idea how much I wanted to do that. *Shrugs, then smiles.
Progress…
So after all that, after we got into a fight about something unrelated that I can no longer even remember what the topic was, I realized what I was feeling. I felt the weight and force of my feelings. Feelings I really prefer not to have or feel. Ever. Shame. Feelings of shame. Yup. Shame. Like a massive metal door closing in on me, I felt shame. And then I felt shame for feeling shame. Fade to black.
Because that’s how this works right? We feel something and then instead of being able to sit with the feeling, work through it, we add to it by feeling shame for feeling the initial feeling of shame. Who came up with this stuff? If it wasn’t so damn painful it would be beautiful in its perfection! As a friend of mine and I like to say, it’s a “pick your poison” situation. Whichever way you go, it’s going to hurt. So yeah, I chose to feel the initial shame and tried hard to be aware of my judgment and that really loud, obnoxious, critical voice that loves to shout at me given the slightest opportunity. “Shame. Feeling shame. Lots of shame,” I said. Meanwhile Richard had moved on to the New York Times Crossword puzzle and looked at me with confusion.
To be clear – This isn’t about my kid. This has nothing to do with her, who she is, her neurology, what she did or didn’t say. This has nothing to do with Richard running into one of her Early Intervention therapists or perceived expectations, either mine, his or the therapist’s. This isn’t about autism. This isn’t even about parenting. This is about perfectionism. This is about my shame for being an imperfect human being. That’s what this is about.
Progress…
Emma's Hope Book 
All of us struggle with this, lady. Doubt and shame are life crushers. But calling them out is a great step towards reconciling them. I think it comes from our need to place everything in a hierarchy. Your attitude towards Emma is that she shows us another way, where not everything is ordered in a linear fashion. The therapist’s comments tried to put her back in a hierarchical structure. You’ve been telling us for a while now that’s not where she belongs. Hang on. For what it’s worth, I think you are on to something big.
I don’t think the therapist said anything actually. But I know that wasn’t your point. 😕 I’m hanging on!
I think shame is a feeling of self-betrayal. It comes from not measuring up to others ideas of who and what we should be. Many times we internalize the messages of others because we come to believe it is truth and it comes out to mean shameful feelings. We were not born this way, but learned it. I am hopeful to unlearn my shame. Some days I think I am making headway, and other days it feels like a big move in the opposite direction. Such is the human condition we create for ourselves.
I hear you Judy. We are not alone.
Progress is a subjective term what is a milestone to you maybe an inchstone to someone else but progress is progress nonetheless.
Yes and interestingly it seems to always feel “slow” when it’s our own.
((Hugs)) thanks for documenting the speed bumps that we all encounter. Grateful again for your articulateness and bravery and self-awareness, always a model for me.
🙂
Oh boy, I hear you loud and clear. I’ve been spending my whole life trying to fight the need to be “perfect.” Not too long ago I had an epiphany that the one person who didn’t love me, who judged me, who had impossible expectations of me…was me! Everyone else in my life loves me, imperfections and all. Thank you for another great essay!
Oh Jodi, I have had that same thought!
Love the photo, a metaphor for all of us is suddenly find ourselves in an unknown place in a lake of uncertainty. And so what do we do? Plunge in and swim to the nearest shore? Or maybe just sit there and experience the beauty of the moment….
Granma
I took that photograph with my iphone with Richard in Central Park on the 4th of July. The light was so beautiful and the reflection in the lake perfect.
Please forgive my rambling comment. I have too many thoughts in my head.
Thank you for this. As usual, your post hit home along with the one about EI. I have an older son who had a PDD-NOS dx years ago and now *passes for NT* Still, we homeschool him and one of the reasons that I don’t have him in school is that I don’t want him to feel pressured to be just like everyone else. In school he was *great* all day at school and then melted down when I picked him up every day.
I also have a younger son on the spectrum who is six, and still not really conversing. He is smart and on his grade level or above in many areas, but has a hard time processing language. Everyone just *knew* when he was in EI that he would end up speaking well by kindergarten just like his brother, but it just hasn’t happened. I have always avoided ABA because it never felt right and we have taken more of a DIR/Floortime approach, but in the last year or so I have wondered if I made the right decision on that. In school they seem to have given up. His goals for the coming year are to say *hi* to his classmates and to answer *-ing* questions (which he does fairly easily for me at home- but may need processing time). What if he doesn’t want to say *hi* to his classmates? I don’t think all first graders go to school and say *hi* to everyone! Anyway, your blog has really helped me to respect his own unique neurology and try to support his progress to enable him to do what he wants to do, which is why I am going to homeschool him also for half days this coming year.
Also, for what it’s worth, I work in EI as a bilingual interpreter and most people around here have moved to a more DIR-based model. The exception is when they feel the child is very *low functioning* (yes, I hate that term too). They might push ABA more for a child like that, but even then, the funding is not always there for a full ABA program (which may be a good thing). It seems to me that ABA is pushed more when they are older.
Thanks so much for this comment, I’m glad you’ve found it helpful.
Progress, not perfection. You are, and shall forever remain, my hero and inspiration ❤
Aw… mwah!
Never met a perfect … anything, and for sure not a perfect human being! Keep kickin’ it Ariane and I may write a strong female, inspiration character after you. xx
You Rock!
LOL! Why thank you Judith! I love the idea of being a fictitious person. Totally goes with my childhood fascination with Harriet the Spy. (Another strong female.) It was Harriet who should have been blamed for all those neighbors I spied on…
Ahh but, imperfection is perfection Ariane, that’s what I believe and you are just imperfectly perfect. In fact you are Ariafect.
😀
Pingback: Reflection | Ariane Zurcher