A year ago, I would have gone to a parent/teacher conference and not thought twice about my daughter being in the same room while we spoke about her. Six months ago, I knew enough to know that she understood what was being said even if she didn’t indicate that she did and would move to another room or arrange for child care during a conference so she would not be present.
This morning I received a passionate comment from someone who was responding to another comment about parent/teacher conferences. You can see the whole comment by going to yesterday’s post, but she ended with this:
“These things can ONLY happen in context of a culture of acceptance of the exclusion of Autistic people from discussions about our own lives, and of acceptance of the ‘need’ to speak of us in negative inaccurate terms because that supposedly fulfills some ‘need’ that will bring us help and support. It doesn’t EVER bring us the support we actually need because negative inaccurate information ‘about’ us means any support is founded in untruth and therefore is not help and support of US as the ACTUAL human beings we are.
PLEASE, if you truly want to help Autistic people, stand up for our right to be part of the conversation about our own lives from a VERY young age. Advocating FOR us is GREAT, but ONLY if the purpose of that is to support us in our SELF-advocacy… and to put pressure on professionals to accept OUR voices and OUR choices as the determining forces in OUR lives.”
My initial reaction was a defensive one. My first thought was – but children are never present at parent/teacher conferences. And then I realized that isn’t true. My son Nic is asked to attend our parent/teacher conferences and has been required to attend them since he entered middle school (the fifth grade, the age Emma is now). My second thought was, but what if one of her teachers or an aide said something awful about Emma in front of her, what if they spoke of her in language that would be hurtful? I can’t control how others speak. But then I realized that were this to happen in my son’s presence I would not hesitate in saying something in front of him to that person. I would correct them and tell them why it was unacceptable and he would hear this and understand that this person was wrong in speaking this way about him. Then I thought, but wait, we might need to discuss topics that might make her sad, things about self-injurious behaviors or how she ran out into the hallway and it wouldn’t be appropriate for her to hear these kinds of conversations, but again I thought of my son and realized how we would include him in the conversation. As I went through the various reasons why I couldn’t do what the commenter suggested, I saw quickly just how insidious the ingrained prejudices regarding autism are. I saw how I still have so much more to learn. And so I continue to and I tweak my thinking and my behavior and then someone else tells me something and I have to think about their words and then I have to tweak my behavior some more.
Directly after reading this thought-provoking comment (I am so grateful to the writer for having sent it) I received an email from someone I care deeply about. I do not have explicit permission to write about the specifics so I will not, but it was about where these kinds of ingrained beliefs can lead. It was about abuse. It was a story I am becoming more and more familiar with. It was about someone I know. It was about a defenseless, nonverbal child. It was about more than one event. It was about many, many abuses occurring over and over by many, many different people. My horror is never lessened no matter how many times I hear of this. In fact my horror increases. What I used to believe, what I used to console myself with, that these were unusual, isolated instances of horrible people behaving in heinous way, is not something I can cling to any more. These stories are everywhere and I am hearing them all the time now. I cannot console myself that they are unusual. I can no longer wrap myself in a cocoon of optimistic assurances that this hasn’t happened and will never happen to my daughter, because even if we are lucky enough that they do not happen to our specific child, they are occurring constantly to other people’s children. How is that any better? How is that any different?
The abuse of people who are considered “less than” and “incompetent”. The physical, sexual and emotional abuse that Autistic people and children are having to endure at the hands of people ALL THE TIME that they come into contact with, at school, their care givers, the people they are suppose to be able to trust, their relatives, neighbors, the list goes on and on. This is going on around us and to those we love and care about. This is about people who are hurting, not just our children, but people all over the world who are deemed “less than”. This is so much bigger than “our children”.
Em’s “self-portrait” – 2011
Related articles
- At What Point Do Our Actions Constitute Torture? (emmashopebook.com)
- Autism = A Human Rights Issue (emmashopebook.com)
- Spotting the Signs of Emotional Abuse (everydayhealth.com)
Emma's Hope Book 
Oh Ariane my dear, you have now hit my hot spot. Oh my. Oh my, my, my. When Teddy was about six, we went to see a neurologist at the leading research children’s hospital in the state. That visit, to a pediatric specialist initially did much harm to my child, 15 years later I still fume thinking about that man and how despite years of training, he knew very little of what really mattered. For a long time afterwards, Teddy referred to him as “Dr. Dorkus”.
Dr. Dorkus had NO REGARD OR ANY CLUE, nor modicum of respect towards my son, and if I had the presence of mind then that I have now, oh what I would have thrown back at him.This is a man Teddy had NEVER met, asking us highly personal and private questions. Poor Teddy was literally climbing the walls trying to get out of that little room. I finally cut the session short. He then had the nerve to negatively comment on Teddy’s behavior. What I wished I said to him was, “How would you like me to put you in a room full of people you don’t know, and start criticizing the size of your anatomy and question your ability to perform as a man? Bet you would be climbing the walls too, asshole.”
It’s prejudice, it’s cluelessness, it’s judgmental, it’s complete lack of empathy. It’s the horrible way in which many people interact with others.
Remember Ted’s Freedom Manifesto? Well in addition to the quote I shared in an earlier comment to you, he also wrote that above all else one should act with this question in mind, “Does the act under consideration violate the ethic of reciprocity? Do unto others as you would like done unto you.”
I have to believe that this code of behavior Ted, on his own, has established for himself, is a result of the very situations like the one I described as above. And isn’t it stunning (actually the irony is that I don’t think it is stunning at all, I think it happens more than we recognize really) that a person with autism, who is considered to be lacking in empathy and social skills is actually light-years ahead of most people. My son and autistics, give me hope that human beings have a small chance in hell of evolving beyond our eat-or-be-eaten hardwiring.
I cannot wait to read Teddy’s entire “manifesto”! Seriously. Can’t. Wait.
I took Emma to a neurologist when she was about five years old who came highly recommended to us. He asked her to kiss him. I remember thinking, are you kidding me? Why WOULD she kiss you, you old geezer (!) she’s never met you before!! In fact, I would have been deeply disturbed if she had. It was completely bizarre. I didn’t say anything, for which I deeply regret, but when she didn’t kiss him, he made a note of that.
Okay, your neurologist story is creepy, very creepy! Just got a text back from Teddy and he said that I can email his manifesto to you. I will do so this evening when I get home.
This essay is magnificent. Thank you for writing it. Also, Em looks like a love-heart ❤
Ha! I didn’t even notice that, but you’re right! She does. It’s the Emma heart self-portrait!
Reblogged this on reflections of a writer.
love it
Thank you Ariane!
I’ve been trying to get my boys included in our quarterly conferences for an age. I may forward this to our principal, they do not get it.. yet. Not many children get the opportunity to have advocacy modelled for them regularly and for our children it is essential that they do.
ox
Oh Hannah, thank you so much! I hope it helps.
It’s wonderful watching your process of transforming into a better and better ally. This latest realization is an important one.
Nothing about us without us. It’s the first rule of inclusion and respect. It’s clear. It’s simple. And yet so many parents and professionals who believe themselves to be good allies – parents and professionals who might even spout the slogan “Nothing about us without us” when discussing matters of public policy – think nothing of having conferences about an Autistic child without the child present.
A great American Supreme Court Justice named Hugo Black once said, “It is my belief that there are ‘absolutes’ in our Bill of Rights, and that they were put there on purpose by men who knew what the words meant and meant their prohibitions to be ‘absolutes.'”
For a true ally, “Nothing about us without us” is also an “absolute.” It’s clear, it’s brief, and there’s no second part to it, no addendum about exceptions for age or for anything else. That’s the way it was intended, and the way it ought to be.
Thanks for another excellent post. I hope it wakes some people up.
Nick,
I really appreciate hearing from you. I am a big fan of the work you and Karla are doing. If I still lived in the Bay Area I would certainly be attending your workshop this weekend. Thank you for reaching out. It means a great deal to me.
Recently my husband and I decided that we will start including our (soon to be) 5 year old son in our conversations and discussions, and we are going to try this at our next “team” meeting. We began by simple acts like speaking directly to him and saying, “remember when this happened…. I’m telling {mom/dad} what happened” and get his acknowledgement, rather than speaking over him like he was deaf.
We’re still early in this process and old habits take time to switch and change, but we plan to build in room for him to voice his opinions, and we expect one day he will make use of that opportunity.
It hit me like a ton of bricks about a week ago, when I realized “how can I possibly expect my child to advocate for himself and assert himself, when I keep stripping him of power?” This was when I decided to “go against the grain” and instead of talking “about” him, begin to “reminisce with him” while in earshot of the other person I’m also communicating with, so that he becomes a stakeholder in the conversation instead of the topic.
Jane, you’re awesome. I have tremendous admiration for the path you are on and am cheering you on!
I’ll let you know what happens. This morning I spoke with our behavioral instructor (she agreed with us and instinctively “gets it”) and she told me that she had worked with a child who used to have “behaviors” constantly. One day he stopped what he was doing and asked her what she’s writing in her notes (the data binders they all log into). The instructor sat him next to her and explained to him what each “program” and “behavior” graph was about, in terms he understood, and explained to him what she was logging. The child “got it” and from that moment onward became cooperative because he was now “in charge” of the results, and he would look at the graphs and feel a sense of accomplishment when he attained a skill, and the instructor felt that she had a breakthrough with this child. When I hear accounts like this, I’m encouraged that we can create a wholly different experience with children who will receive behavioral therapy. The reality is that behavioral intervention will remain 1st line intervention for autism and I like to see every single instructors who ever work with any autistic to watch Wretches and Jabberers and begin to behave cooperatively with children they work with and assume competence.
For our team meeting we’re going to ask that it is conducted in a way that includes our son as the primary stakeholder, and explain to him what the lessons and graphs are showing, and ask if he has any questions or want to comment on what he is hearing.
Can’t wait to hear how it goes, particularly what if any input he decides to make!
Though I have several comments I want to add, it is Emma’s self-portrait that draws me to speak here today. She sees herself as HAPPY!!! This is what living is about, and what all of our parenting efforts should seek as our goal. Oh, that all people should picture themselves as happy would be my wish, for I have known decades of my daughter’s sadness, and self-pity….and her extraordinary efforts now on her healing path to like herself, and, to feel my newly enlgihtened love of all of her.
Three happenings come to my mind, two that did not make it into our book. 1. During the writing, Peyton shared with me how she knew the “data” (her word) she heard first-hand and saw in scores of written evaluations made me sad, and my sadness made her sad. She said she wished I would have talked to her about the data, expressing it was just data, and would not rule our lives or her opportunities…that her gifts were far more important than the “data” as she called it. That we would work together with her, as we would also do with her older brother, allowing her every opportunity to be her very best self.
2. But I did not see it that way. The data ruled me. I chronicled it in organized notebooks I kept on shelves in a closet you would have thought held the sacred texts of the world’s religions. One day I found her sitting in the closet, several notebooks opened, pages torn out, all askew. I yelled at Peyton saying those are important papers as I escorted her out into the living room. As I was turning to “save” the data, my son came around the corner from his room. “Mom, I don’t know why you are so upset, all the notebooks and papers have Peyton’s name on them.” I closed the door, but I still did not understand the depth of impact my precious-to-me data was having on my daughter.
3. With the book writing, I learned how important what Peyton calls a child’s “point person” is. She helped me understand it is what the child’s point person, most often their parent(s), does when the world wrongs them, that is most important. To quote her: “Children worry getting help to be person ‘normal’ will never get their life peaced. Peace in each is keyered by his point person knowing that he is okay as he is, and that she will tell the worrisome world to seed his peace by valuing his gifts.”
How different it could have been for us if I had age-appropriately for Peyton, discussed the data with her, and later supported her to be present when “data” about her was discussed, where I hopefully would have challenged those who wronged her in attitude, word and deed. Thankfully now she speaks for herself.
THANK YOU ARIANE for your comments on abuse, a topic that pierces my heart with Peyton’s personal experiences, and prevalence in the general population. You are right, “this is so much bigger than our children.”
Dianne,
Richard and I watched Peyton’s Helium Hearts commencement speech last night. I picked up her DVD at the Autcom Conference where it was being sold. What a terrific and moving speech.
By the way – did you receive my email with the first interview question? Tell me if you didn’t so I can resend.
Thank you for reaching out. I am trying to learn from you and others who have gone before me!
Yes we did receive and are gratefully working on it. Thank you.
Also, please know I rejoice in reading the insights offered here. I am encouraged things are changing!
We have always taken our daughter to IEP meetings etc since it involves her. At her last school her grade 6 teacher made some rude comments in front of her. Our autism consultant and my husband made him stop (I react the same way my daughter does and shut down when things like that happen). She had been having terrible anxiety and trouble going to school. She never went back to his class after that and spent the rest of last school year from January on at home. She is in a great new school now. It took me three blog posts to tell that whole story. It was awful for her. She had to get couselling because of it and the principal would not make him appologize.
Mandy it makes me so sad to hear that people at her school did this. I know it’s not at all unusual, I know this is actually more common than not. It still makes me sad. And I think I would shut down too. Being young and having the very people you look up to and want so to please saying mean, critical or insensitive things would be very, very upsetting. I can’t imagine what that must feel like as a young person, bad enough when we’re adults… To be a parent and witness this… oh ugh, Mandy. I wish our world was different.
I have done both- included him in some and not included him in others. Some I regreted including him in. I did stick up for him but I should have stuck up for him more. I got bullied by the principal and my son eventually shut down and melted. I told my son & the principal that the principal’s behavior is what caused my son’s behavior. (lots of swear words here). So yes I did excluded him when I knew there would be lots of arguing and contentious behavior. The following year the intervention specialist was great and not only was my son included but they actually made appropriate decisions without me (following up with me to discuss and approve of, of course). My son learned a lot about self advocating that year.
I guess I am saying “it depends”.
(btw- I thought we had some crappy assessments but now I realize ours were not that bad “kiss me” woah!!!)
Okay, so even weirder? A friend of mine took her daughter to the same neurologist and said, “Oh but he’s such a sweet old man. We just loved him!” Talk about two completely different responses!!
When you described the inclusive conference gone bad, I could completely picture that – having someone say something inappropriate, saying something about how it was inappropriate, the person responding defensively and how quickly things would derail from there.
I’m catching up on my reading that I’ve missed over the past couple of weeks and it must be serendipitous that I just happened to wait until this week to read this post, as my son’s first ever parent/teacher conference is scheduled for Thursday afternoon. His kindergarten teacher had called me directly and personally to discuss the scheduling, and she said because he is on an IEP it isn’t really necessary to do a typical parent teacher conference for him, but if I wanted to she wanted to give me that chance.
Considering that I want my son’s school experience to be as ‘normal’ as is possible for him (even though he has three special needs assistants and still isn’t potty trained) I went ahead and scheduled the appointment. My biggest concern now is actually getting there since I don’t have a car and the public bus system doesn’t go anywhere near there. My son coming along wasn’t even a point of discussion, she assumed automatically that he would be with me and even suggested, if needed, we could do his conference in the sensory room rather then the normal classroom to make it easier for him while we were there. But it’s all pretty open as far as that goes. It’s no wonder, after what I’ve experienced thus far with the education system in our district why our district is number one in the state, particularly for special education.
Raising a child with autism and going through the whole education process is still brand new to me and I started out with a lot of trepidation about it. I wanted him to be able to go to a main stream school and be around NT children his own age. But I was worried I was sending him into the lion’s den so to speak, remembering as I do how cruel children can be to other children. I want to do what is best for my son, what is right for my son, but I am so afraid that I’ll make one little mistake that will haunt him for the rest of his life.
I am grateful there are other parents, parents like you, that have gone before me and can share their experiences and perspective so parents like me can take that into account when walking down that same path with our own children. I have noticed, since my son has begun attending school and spending more time with NT children, his language skills have increased, his social interaction is different, even though it’s still awkward sometimes, he has friends and last weekend went to his first ever birthday party. The more successes I see him achieve, and the more challenges I see him overcome, the more my hope for his future expands! But hearing from those who have been where my son is, or been where I am with their own children helps me so much more form better understanding then I can express in words.
I don’t believe I treat my son any differently then my NT children before him, but I might since it was nearly 8 years between his older sister and him. He is different from them, something that was apparent from birth. But just as with my other children, I didn’t talk baby talk to him, he has things he is expected to do on his own and I sometimes have to push him to do them more then I did his NT siblings (such as feeding himself, brushing his teeth, writing, etc.) I think I’m getting side tracked now so perhaps it’s time to end this now. I need to persuade my son to finish his breakfast anyway. Take care, and thank you so much for sharing your experience and wisdom for people like me!
Lara, I can’t tell you how happy it makes me to hear of those positive experiences with schools. It gives me tremendous hope.
I related to so much in your comment, that feeling that if I make a mistake I will have done irreparable damage or the worries of sending my child into a lion’s den. Every step can feel like walking through a field of land mines. I loved when you wrote that you can read other’s opinions and take them into account when making decisions. I think that’s key, taking other’s experiences into account, but not necessarily taking them as some sort of given.
Great to hear your experience on all of this!
lightbulb moment for me here….. Thank you 😉
Oh good! I love when I have a light bulb moment, particularly when I can remember my brilliance again later when I have time to write it down!