This is the typed “conversation” I had with Emma last night inspired by the wonderful comments left here yesterday. This was done with very little talking. Emma’s replies are in italics.
“Hi Emma. I know one of your favorite songs is “Beat it”. What other songs do you like?
Emma likes Fireworks. Emma likes to go swimming.
Hey! Did you go swimming today?
Yes, it cold go swimming.
Emma, was the water cold or was the air outside cold or both?
Both cold outside.
It is cold outside now because it is fall. I like the fall when the air gets colder. Do you like the fall too?
Yes, I do like the fall too.
What do you want to do this weekend?
I want to have a weekend with Jackie at the Vanderbilt wiyemseeay. And go swimming.”
This was HUGE for Emma and me. Rereading it now I’m kicking myself that I didn’t ask better questions and follow her lead more instead of directing the conversation. For example I wish I’d spent more time talking to her about swimming instead of going off about the seasons, which were of little if any interest to her. I could have asked her a great many questions about the pool and swimming and the water temperature, but didn’t. I was so surprised when she wrote, “Yes, it cold go swimming.” I literally laughed out loud when she wrote that, because this is just huge for her to introduce a new thought, to volunteer new information when typing together. Excitement doesn’t really sum up what I felt. I was ecstatic!
Emma kept trying to read my typed words out loud, but I reminded her to read silently. I made a huge number of mistakes while having this conversation with her. I corrected her spelling a couple of times, and wished I hadn’t. I never know whether it’s best to let her spell things and go over the spelling later, separately or whether its better to correct it right away or better to leave it alone. I wanted her to feel encouraged, supported and cheered on, not criticized. So that’s something I am still questioning. I also get so excited when she says anything off the grid, I get overwhelmed and can’t think what to say other than – “OMG you just introduced a new topic and I’m so excited!!” Maybe I can learn to relax a little and go with it a bit more. I am also aware that my excitement is an example of my NOT assuming competence or rather it is me feeling euphoric that Em shows her vast intelligence in a way that my NT brain can grasp. I really want to learn how to move away from that limited thinking on my part.
When Emma was diagnosed with autism I remember that first day when all the therapists came to our home to work with her. I’d done my homework, read all the materials the agency provided me with and then some. Yet, I remember how everything was “dumbed down”. Things that I knew she knew were treated as though she didn’t know them. Really simple things were suddenly a huge deal if she indicated she knew them. I remember vividly my confusion. I began to doubt everything I thought I knew or assumed about Emma. I completely capitulated to some set idea about my daughter given by a group of people who had never met her but made assumptions based on a single word – Autistic.
I’m old enough and have enough humility to admit I don’t know what I’m doing a great deal of the time. This is not a popular statement in our culture of bullshit reigning supreme, even if it’s all a lie, even if it means people who know almost nothing about a given topic, but who claim “expertise” are suddenly seen as having something sensible to say. The art of bullshit has become a well honed skill by about the age of ten these days. It’s amazing how quickly children learn to adopt it. Add a little chutzpah and you’ve got a kid who will go far in this world of ours without being particularly knowledgable in anything.
However, the art of bullshit requires a couple of things – a massive dose of ego and an ability to lie. My daughter Emma has neither of these. Still, I am feeling confident she will do well in this crazy world of ours.
The ongoing construction of the Freedom Tower
I applaud your candor and humility and I dig your values. You’re a good egg and Emma is going to learn the things that really matter from you. I mean, she’ll learn to be a humble, honest, kind, and considerate person from you. And she’ll have the “book smarts” as well.
She’ll struggle. We all struggle, and we autistic people, of course, have our particular brand of struggles. Excuse me while I ramble…right after I self-diagnosed with autism, several years ago, I was blessed to find a really excellent therapist. I have seen many therapists in my life, from the time I was a little girl, but this man was truly a *great* therapist, and a great match *for me*. We worked on healing a lot of the trauma I had carried me with me for decades, from bullying, and on helping me come to understand, accept, and cherish myself as the person I now knew myself to be, a healthy and whole autistic adult.
We made great strides, and he helped me heal in ways I had never thought possible. But then…things would happen, people would be curt with me, or outright mean to me, I would be triggered and awash in pain and anxiety that I’d hoped had been banished forever. And *that* would be really painful, the feeling that I had regressed, and that the feeling of healing and progress had been an illusion. And that’s when I learned a really important lesson with the help of my therapist–I can’t control the actions and feelings of others, and certain things are always going to hurt–and remind me of past hurts–but I have learned to trust myself, respect myself, have compassion for myself, and know myself. When things hurt–and I’m a very sensitive person, so when things hurt, they *really hurt–I know how to take care of myself, lean on my circle of support if I need it, know that the pain will pass, know that I am awesome, see if there’s anything to learn from the pain, learn it, and move on.
I guess my point is that everyone needs that sense of self, but it’s vitally important for autistic people to learn, and especially autistic children. I think a lot of experts forget that, and maybe, a lot of parents, too. But it’s obvious that that is not the case with you. I hope that all made sense!
Rina thank you so much for sharing your experience with all of this and your kind words are appreciated too!
Loved this. I communicate best with people in IM form… Actually some places that do IM customer service now make me so happy.
Now that I have become used to IMing I find I much prefer it. I have never cared for the phone, I always felt it was an intrusion, but now see I also just prefer communicating through IMs because it’s so much more fun!
YES!!! My mother hated IMing – she insisted that if I wanted to communicate with my friend after school, I must do it on the phone. Needless to say, I didn’t communicate much with people until high school, when I got smart and got myself a gmail and started to use google IM. (History/cache/cookies can be cleared – installing/uninstalling software is nearly impossible on a short-term basis)
Ha! Lesson #1 in parenting: your kids will find a way!!
It took me quite a while, mind… but I did find a way. And when I did, a whole world of (gasp!) friends happened…
Love that! And love your latest post on reading comprehension!! Leaving the link here in case anyone wants to read it. http://thethirdglance.wordpress.com/2012/10/28/autism-reading-comprehension-and-my-experience-with-reading/
You did great. Life is a series of successive approximations, and things only work out perfectly the first time in the movies. : )
Aww… love this. Thank you.
What a wonderful post! I think your instincts are good, and I understand the conflict between wanting to be educational (e.g. correcting her spelling) and being encouraging (avoid implying that what she is doing is wrong).
My advice would be to err on the side of encouragement and praise. Learning will happen. You can even do the teaching subtly, by using her misspelled word back at her, for example, spelled correctly, without pointing out the difference. She’ll either get it or she won’t; when she’s ready, she will. Meanwhile, if you make it positive and fun for her, she will open up more.
When I think back on my childhood, I realize that every day I was being told (subtly or not) that I didn’t “get it” or that I was doing things wrong. That is very traumatizing. And leads to withdrawal and worse. I’m not suggesting you are in danger of going there, just giving the extreme. Emma is very blessed to have your love and understanding. I got lots of love, but not much understanding!
Michael, I commented back to you on FB, but just want to thank you again for writing this. Yes, I much prefer to err on the side of encouragement, support and cheering on!
This pleased me much, such a happy feel good read–made my afternoon sit-by-the-pond even better.
I communicate with my grandaughters through text, even sitting on same couch.
I love the image of you sitting by a pond and smiling. Thank you for that image, that made my day!
Also, my husband and I have tweeted each other even though we were in the same room!
Very Good! 🙂
I suggest that you do not correct spelling or grammar until Emma is really comfortable having the conversations. If she is a little bit like me, corrections might be distracting and she might lose track of what she is doing, what she wants to say and how it makes her feel
Thank you so much Amy. I agree with you. I want her to feel comfortable and not distracted. Emma is extremely sensitive to criticism, even if it’s not intended as such!
While writing/typing are skills that she’s still having a little bit of struggle with, I agree that correcting misspelling is not helpful. Right now, her goal should be to communicate through the written word. Spelling can come later. Phonetic misspellings are actually a very good sign (I loved her phonetic spelling of “YMCA” and smiled so hard when I figured out what she meant!).
I’m working now on typed conversations with MiddleDaughter, who does not speak. So much of her inner process is a mystery to me that I love the little insights into how her mind works.
Thanks so much for this. I will not be correcting any spelling in the future! It’s good to have all these comments.
The inner process – it’s like being given a gift. That’s how I felt when Em wrote “Yes, it cold go swimming.” Time just stopped for a few seconds. It was the best feeling in the world!
Yes! Loved the YMCA! It started the Village People going in my head, Y.M.C.A.
just go to the Y.M.C.A.
Young Man, Young Man, I was once in your shoes,
Young Man, Young Man, I was out with the blues
Michael – this is hilarious. Thank you for providing us with the entertainment portion of this post! I’ll be playing for Emma later!!
She will likely pick up and start to use your spellings over time if the process is fun for her. That’s what we often do. Manage to work the word back in to the conversation at a logical juncture.
I don’t think you need to be so hard on yourself the times you have done something that you regret doing like in this case correcting spelling. You almost immediately realized the downside of that and were honest about it. You could have painted yourself as a saintly figure of parenthood who never had so much as the impulse for all any of us would know which of course would make the blog much less worthwhile.
You shared it. Others presumably might have had the same impulse who now if they try it will reign it in. It didn’t have a noticeable impact on the conversation and as for your side turn into the seasons well that sort of going off track is a part of conversation and one which actually I wish I had more practice dealing with to be honest.
All indications are you are giving Emma a solid knowledge that her opinion and preferences are valued. That you do indeed love her as she is. The kind of confidence and foundation of love you have built for her will be a huge asset in what will of course be a struggle with things no one can realistically predict.
Parents have this strange task where they need to protect their children (all children) and somehow prepare them for adulthood without any clear notion of what that adulthood might entail for any of them. Realistically we all know on some level life doesn’t work that way at all for any human.
I call this role strange because I live with my brain but being an adult essentially have to parent myself other than at the times I fail so miserably the government becomes more interested. I am told that for someone with autism (there is always that qualifier for some reason) I have good insight into myself. I find that a bit funny since the insight I have into myself isn’t much different that what you describe here as it is often after the fact.
A good thing came up in my life too close to all the bad things and changes I had not coped with. My functioning took an alarmingly steep nose dive yet again for reasons that baffle a lot of the people who saw me through the horrors of the first catastrophic consequences of life change. Even knowing me and knowing my history of dealing with positive change is only ever so slightly different than bad change I was once again caught a little unprepared. If I were my parent I don’t know if I would have had a better clue that that was going to be the case or equally as baffled as all but two people who know me seem to be. (my psychiatrist who recently reveled he has some non-doctor related knowledge of spectrum issues, and my rabbi who is by background a neuropsychologist. Everyone else just doesn’t get it and some of those even were suggesting another change on top of it all. )
I can’t predict how today will play out for me even being me so to be on the outside of my skin and be charged with the responsibility of bringing me up would seem like an impossible task. I think you need to really focus, Arianne. and how much you do right. So your corrected spelling a bit and focused more than you might have liked in retrospect on what interested you. That was a real conversation and you were being a real parent which you could choose to view as being respectful of Emma as well. You are not treating her as so “damaged” that you couldn’t do the things parents do. While over the long haul it is good to reign that in celebrate what you do right.
I belong to a group called Friends of Music. While the goal is for people who live with mental illness to play side by side with people from the community the working premise in the programs is that our members are there as musicians. So ideally no distinction is made between the vocalist who claims to be entirely normal (rolls eyes) and the drummer with autism, depression and synesthesia. We are as far as expectations go in the higher performing groups especially musicians. I told our board recently I wouldn’t even belong if it operated differently. I am a decent enough percussionist to be somewhat in demand in the wider community but I believe in what we do. I say all this not on a tangent but because I think you could view the things you are describing as mistakes as far as the conversation going as being “on mandate”. (The defense I usually offer up for my own music director when people query if he isn’t a little harsh at times) https://www.facebook.com/FriendsofMusic for the currious.
Keep meaning to respond… “good insight” Gareeth, I can tell you honestly that you have far better insight than most people I come into contact with. There is no need to preface that statement with a breakdown of neurology. This idea that has been thrown out as a given about “Autistics” related to insight and empathy is based in such flawed conjecture, I refuse to even call it science because it’s been so misinterpreted as to be useless and rather than helpful, it is destructive.
Thanks for sharing so much of yourself on this blog. I love reading your comments!
Smiling. Oh Ariane you don’t have to kick yourself! You can have lots more of these conversations with Emma.