Yesterday was the last day of Soma Mukhopadhyay‘s 4-day training. I wrote about it ‘here‘, ‘here‘, and ‘here‘. Soma packs an enormous amount of information into four days. She discussed everything from neural pathways of the brain to which parts of the brain are used during specific activities, to how to devise lesson plans and ways to physically position oneself in relation to the student. There were so many surprising moments, but one that I never could have anticipated, was how helpful it was to learn about the actual brain function during moments that are emotionally charged or OCD. Learning some of the basics in brain function demystified a great many things in a way I hadn’t before considered.
Given what we now know, and granted it isn’t much comparatively speaking, but is so much more than we knew even twenty years ago, it is astonishing that certain older therapies continue to be popular and used for autism. Two of the most destructive phrases used with an Autistic person are the dreaded, “Look at me!” and “Use your words!” I cannot list how many times Emma has been instructed to “use your words” only to do so and be ignored. It seems those who say “use your words” really mean, “use the words I want to hear”. Add to that the insistence that an Autistic student have “quiet hands” and not stim because it is believed learning cannot take place while stimming even though by removing the stim no learning can or will take place because we’ve just taken away the one thing that was allowing the student to stay focused and attend, even if it did not “look” that way to us. We non Autistics have a tough time understanding anything or anyone who is vaguely different from ourselves. Before we start calling ourselves “experts” in Autism, we might want to become “experts” in our own neurology first, at least we’d have a better handle on our own limitations and see how those can so easily dovetail into how we are interpreting what we’ve decided is “the truth” about someone else.
I have written about methodologies before on this blog. There are some that I find more troubling than others, but in the end, the thing I care about more than anything else is: is it helping my child? Is she learning? Is she safe? Will the short-term gains be at the cost of long-term pain and even trauma? What is this doing to her self-esteem? Is respectful interaction being modeled? Is she being humiliated, shamed, made to feel badly for the way her brain processes information? Is she being taught by people who believe in her ability to learn? Are her teachers believing her capable and giving her the tools she needs to flourish and be all that she can be? Is she assumed to be competent or is she being forced to prove her competence? Is she being taught the same equation, story, concept and terms over and over? Is she seen as a human being with the same rights as any other person? Would YOU want to be treated the way you are treating and teaching this person?
I don’t care what the methodology is, who created it or how many people believe in its efficacy, if it isn’t taking these questions into account, I am not interested in it. I do not care what others believe, I don’t care what the “experts” say, I don’t care how many letters a person has after their name or who created the methodology or the various papers and/or books the person has written, if the methodology is not attempting to consider these other ideas, I am not interested in it. I, as a parent, am not invested in any particular methodology unlike so many schools. And for that reason I have far more leeway than most schools do, to keep trying different things until we (I’m including my wonderful husband) find the thing or a combination of things that will best help our daughter learn, grow and become all that she can be. In the end that is what we care about more than anything.
This weekend I will create a lesson plan for my daughter with age appropriate materials for next week’s RPM session. I am hoping I will be able to demonstrate, at least some of what I’ve learned, to Emma’s therapist and her teacher. But I also know I will make mistakes, I do not expect that after four days of an intensive training I will do Soma’s method well, but I think I have a fairly good understanding of the basics so that I can start, at least, trying.
Wish me luck!
Soma Mukhopadhyay – March, 2013
Another awesome post. I can’t even count how many times I’ve said “use your words” to Emma. And told her to put her string down. And countless other mistakes. It hurts to learn that you’re screwing up as a parent, but it hurts much worse when you don’t acknowledge the screw-ups and try to improve yourself. A very good list of reminders, my wonderful wife 🙂
All we can do is keep learning and doing the best we can. ❤
The stimming comment is a good one. When I was being interviewed to provide respite care last year I had a woman with a young son who had Austin one of the things that made me not accept the position was the fact that every time he stemmed she would cue him and ask him why do we not stim (or something along those lines) and he would reply by rote really that he was not focusing.
I was unnerved by this. I have autistic tendencies myself I don’t stim but I do fixate and make movements usually to help me focus and I thought in a way she was not allowing her son to be who he was. Glad to know I am not the only one that feels this way
Wow! That’s horrible. What was really incredible, was to see first hand someone who works with the person’s stim. It isn’t that Soma ignores it, she uses it to give her ideas of how to work WITH the person and not with the end goal of removing it.
Ariane and Richard I do love you both even though we have not met in person. The saying when we know better we do better applies to all human beings. The reason I do love you is because you keep learning new things and when you learn them you then can do better. You continually do your best in the moment with what you know and no matter how hard you try you cannot do better than your best! It is hard when you learn you have committed errors for many years, but another way to look at it is that the alternative would have been to do nothing or to send Emma away. You picked the best option in the moment and did your best. Because you did that over and over and it didn’t produce results you sought out more options. You figured out that yesterday’s best was no longer good enough today. Many people never figure that out. Now you have learned more. The place of your best has moved, but even so you can only do your best in the moment. Carry on and please reframe your “mistakes” into “doing my best in the moment” and know that you do not even need forgiveness!!! Just keep on keeping on.
((((Judy)))) This is such a kind and loving message. Thank you so much for leaving it here for us.
So. Very. Beautiful.
Thank you Julie!
Sending ‘luck’… but I am not sure you need it. I don’t mean that it will be easy – but I know the way that you are able to honour Em’s needs and your own as well, and I think that is the key to any approach. So… what I am saying – is that this is going to be an amazing journey. There will be days when you feel like you are doing this with spectacular success and those when you question deeply your capacity to take this on… and all of that is expected. I am so excited for you and Em, and appreciative that you are sharing your learning!
Love and Hugs!!
Thank you so much Leah. Sending you love and hugs!
The very best of luck to you and Emma. I never had to stop my son’s stimming because his was running and it still is. That means he always had to find an appropriate place to do it. Playing with blue tack was the only other one. Again I barely noticed it. I would like to think I wouldn’t have stopped any stimming but I’m no saint and if it bothered me I probably would have. I ask so grateful to people like you who share all you are learning and especially those on the spectrum who explain what their lives are like. I have only discovered all these wonderful blogs in the last 6 months and I am learning do much. 🙂
Thank you so much Ciara. Really appreciate these kind words.
Good luck my friend although I have no doubt you can do it! 🙂
Gosh…you can teach an old dog new tricks! Awesome!
I am going to try to use some of these ideas on myself when I get really obsessive about something or angry! And I’m pretty old!! 🙂
I knew about “use your words” but did not think about “look at me”! Thanks for this, Ariane.
We banned “use your words” 2 months ago with our instructional team for our child. Now each of them are extremely aware of this phrase and they’d catch themselves and do a face-palm when they said it (this has become rare but old habits die hard, I know).
I recently took my child to a speech therapist who used both phrases (“use your words” and “look at me”) and made my kid cry because she blocked him at every turn of him trying to get a box of toys she told him he could play with. I had to stop myself from going over there and kicking the box (better the box than the therapist). My highlight was when our behavioral instructor, who accompanied us, got down on the floor with my child and explained to him that he could ask for a minute’s break if he needed a break, then after the break, to answer that speech therapist’s questions. I knew our instructor could feel my wrath building up by the incessant “use your words” command from the speech therapist.
I told my spouse I’m not taking my kid back to that (very experienced) speech therapist, who, by the way, irritated me endlessly with her “sing song” voice.
I said, “Autism is NOT A SPEECH PROBLEM! Autism is a learning disability problem!! I’VE HAD IT WITH SPEECH THERAPY!” Then I had to bounce about the room for a while because I was really mad.
Yeah, I have to say, speech therapy has been pretty useless. I am sure it may help some kids, but for Emma, not so much.
Good for you for standing up for your kid. That session sounds absolutely horrible!
I know Judy’s comment above is for Arianne and Richard, but is hitting me right in the heart today, and I am going to annex her encorage
ent for myself. Thank you Judy.
So much love and respect for you Arianne & your dear family.
Thank you for sharing, it benefits so many.
Good luck next week, I’m pulling for you & Em.
Aw… thank you so much. The beauty in Judy’s comment is that it is universal and applies to so many. As long as we keep an open mind, keep learning, striving to do better, our best will just keep getting better…
I will comment with another’s words…
When there are walls of ignorance between people,
when we do not know each other’s stories,
we substitute our own myths about who that person is
When we are operating with only a myth,
none of that person’s truth will ever be known to us,
and we will injure them – mostly without ever meaning to.
–Paula Lawrence Wehmiller
It truly is a life-altering experience to learn from Soma and Judy Endow and others that have a good understanding of autism and various developmental differences. I’m so grateful for the resource they are to we parents. Thanks to you too, Ariane, for sharing.
Love that quote Wendy. Thanks so much for reaching out!
Now get some rest Ariane and let what you learned sink in a bit.
Richard make her do something fun and recreational with nothing whatsoever to do with autism or I will fly out there… Not really New York is a weird mythical land but …
Well if you ever DO find yourself in our mythical land called New York City you will come and visit us!
Gareeth: Sometimes autistics can be fun and recreational 🙂 But I do know that most people consider us a real drain in ever so many ways and that is why they need frequent breaks from us. Some days I even wish I could get a break from myself, but then I imagine so would everybody like a break from themselves if they could figure out a way to get it. I have never actually heard any neurotypical say this, but only imagine it to be true so I could be wrong!
Judy – Gareeth has a wonderful blog – http://gareeth.wordpress.com/2012/12/06/g-d-acceptance-and-the-autistic-spectrum/ I tell you this only because I think you would enjoy it tremendously. Gareeth has opened my eyes to a great many things, as have you!
I have autism myself I am not saying this because I support the autism as burden model one bit but as a virtual friend of Ariane’s who sees her push herself very hard and who I think after the marathon of the past few months could use a day or two of mindless whatever.
I would have said the same thing were she an accountant coming out of tax season. It’s not about the autism but just about concern for her.
I will be spending the weekend filled with silliness and frivolity with my family. I am sending you love and hugs and thanks, dearest Gareeth. Thank you for our friendship. It is greatly appreciated.
gareeth and ariane i am so happy to know all is well. i much feel obligated to say something when people are wanting breaks from autistics and at the same time never do i want to be a mean person with my words, but instead words to join us together – autistics and nonautistics – joined together by our core of all being part of the human race together. glad to read all the comments above and to know of another wonderful human being who is maybe one day to be another friend!
As a speech and language pathologist, I completely agree with you that Autism is not a speech issue. I have been in the field for many years, and have worked in a variety of settings. I have also spent about half of my career working exclusively with children with Autism in a non-behavioral methodology. I currently work in a public school system in New England and am finding that any child with the diagnosis of Autism is given speech-language therapy services on their IEP. I can no longer speak for what is happening in NY, but I suspect this is -or will become- a national issue. While I have to admit that I am slightly offended by the tone in which SLPs are referenced in your post and subsequent comments, I understand the source of your frustration. Truly, we need more people – parents, especially – to recognize that Autism is not a speech-language issue and putting a “social group” or “pragmatics skills” on an IEP is not likely to help suddenly start communicating. Just my two cents….
PJ – Really appreciate your “two cents”. Most parents are bombarded with a great many “experts” who claim all kinds of things when our children are diagnosed with autism. For many, it is confusing and difficult to know what will end up being the best course of action for our child. So many in the field of education have strong opinions about what our children need or don’t need and if they are unsure they rarely admit this. It’s unfortunate that while so much about Autism is actually not understood, there are so many who insist they not only understand, but suggest that if we do not agree with them, we are the problem. Speech therapy was one of the things I was told my child needed. It took many years before I realized autism was not a speech issue.
I don’t care what the methodology is, who created it or how many people believe in its efficacy, if it isn’t taking these questions into account, I am not interested in it. I do not care what others believe, I don’t care what the “experts” say, I don’t care how many letters a person has after their name or who created the methodology or the various papers and/or books the person has written, if the methodology is not attempting to consider these other ideas, I am not interested in it.
I have told my child’s teachers to never demand she look them in the eye. I have a difficult time with her need to make repetitive noise. I do ask her to be careful with it at school because although it helps her it might effect the child sitting next to her for being able to do their best too. “Use it when you really need it and it will be good for both of you.” At home should be her safe place to use if freely. My head hurts from it but I am adult and she needs it to help her. I sometimes ask her to stop when I am really needing to think for a moment then tell her it is okay again. We share our needs for the air space 🙂 One thing that we have been able to understand lately is that when even she does something that can even be looked at (correctly or incorrectly) wrong she takes it to the core and believes she is a bad person and gets upset. I thought she was getting an attitude but with time, understanding and talking we have come to know it is her beating herself up and totally convinced that she is bad to the bone and what ever it is, it is unforgivable. It breaks my heart, but with this understanding we are working on the difference of being a person who does bad things all the time because that is what they want to do and making either wrong choices or just misunderstandings and that those are moment in time.. not personalities. So sad that it took a year to figure this out. It really looked like an outward attack on us as parents and a pre-teen attitude. Yet again, wishing I could take back how we handled it for the last 12 months. It must have been so painful to feel that bad about yourself and have others adding to it. As a parent you have to be so mindful to keep your mind open and not look though your eyes, or “standard perspective” that you would naturally see the world as, but though the eyes of someone who thinks a little differently than you do. Much of what is said or done is NOT the way it was given. Its like translating a language when you really don’t speak it that well.. you may miss the meaning all together and end up offended by the compliment that was given! Best thing to do is listen (to words if they are there, body movement, drawings, touch etc), be open and try not to put your own ideas into what you are hearing. You will be glad you did.
Thank you so much Barbara. Really appreciate reading your comment. Parenting isn’t easy and none of us are going to do it without making a great many mistakes.
Such a great observation –
“Much of what is said or done is NOT the way it was given. Its like translating a language when you really don’t speak it that well..”
My daughter is high functioning and still.. there is so much there to get to know that is outside the way I and her peers think. I have learned so much from your writing as to what type of positive expectations to have with her and to pay attention to what IS really there and not what I think I am seeing. Thank you so much for sharing your thoughts and discoveries. It is really helping!!! I am grateful to you.
Pingback: Our Amazing Adventure | Emma's Hope Book