Changing Our Thinking

I asked Emma for her permission to talk about language retrieval issues, and specifically to describe some of what occurred during her first session with Soma last week.  She said it was okay for me to do so.  I’m incredibly grateful to my daughter for being so generous with what is personal information.  She has given me her permission, but to leave it at that, would be wrong.  To not acknowledge what this means would be negligent at best.  She is unbelievably generous to allow me to share these things.  I do not know how many of us would be willing for another to share such personal things about ourselves, and the trust she has bestowed upon me, the trust that I will not betray her…  it is something I not only take very seriously, but need to acknowledge.  To say I am grateful does not come close to describing the feelings of appreciation and awe my daughter inspires.  If all human beings could take a page from Emma, both in her cheerful generosity in giving of herself so that others might benefit and her compassion and willingness to see the best in people, even when so many have said and done cruel things to her, this world would be a far better place for all of us.

I wrote about Emma’s first session with Soma ‘here‘.  What I didn’t write about was how after Emma pointed to a letter she was encouraged to say the name of the letter, just as her Proloquo2Go program does on her iPad.  She was able to do so without hesitation.  But when Soma put the stencil board down and asked Emma to say the next letter of the word she was writing, without pointing to it first, Emma would, more often than not, say a random letter.  Soma then picked up the stencil board and again without hesitation, Emma pointed to the correct letter and was able to identify it correctly out loud.  After Emma wrote a sentence she was invited to read the sentence aloud, but could not do so.  This is a sentence she’d just written, one letter at a time.  A sentence she’d created, yet was not able to read.  It is not then surprising that Emma is unable to read a random story out loud, even though she is perfectly capable of reading it silently to herself and fully comprehending it.  See related post about reading aloud, ‘here‘.

To see this broken down, to witness this at the level of single letter retrieval and not a whole word even, made it all even clearer to me.   Which isn’t to say that Emma will never be able to do this.  Perhaps at another point, perhaps once she is proficient in writing her thoughts and identifying a letter after pointing to it, one letter at a time, she will then be able to work slowly, patiently and without the anxiety of feeling expectations are being placed on her, perhaps then she will be able to come up with the next letter before she points to it and from there the next word and on it goes until verbal language can catch up to her written.  But for now, it is imperative that every single person who comes into contact with my daughter understand how detrimental it is for her to have these expectations placed on her and then to have the inevitable conclusions drawn about her comprehension and ability.

My daughter is nothing short of brilliant.  I am not saying this as a biased mother who is basing her thoughts on nothing more than some sort of convoluted tip of the hat to genetics, or a round about way of bolstering my own ego and intellect.  I am saying this because I have seen the evidence.  Since her diagnosis, Emma has been treated as though she were intellectually impaired when, in fact, she is intellectually gifted.  This is, I’m sorry to say, something I am hearing from others.  We have a growing population of children and people who are treated as though they are incapable, when in countless cases the opposite is true.  The onus is on us to change our current teaching methods and the therapies we are employing and to open our minds to the idea that we have gone about this all wrong.  This is what must change.

Soma & Em copy

25 responses to “Changing Our Thinking

  1. Yes! My feelings exactly. How Soma teaches kids to communicate must become the norm, not a “secret” alternative way as it is looked upon now. There are too many successes like your Emma and my son to ignore. For experts and educators to keep this away from kids is like keeping them locked in prison. Things have to change!

  2. wow. I must share this. This may be a “light bulb” moment for many teachers out there. Reading aloud (or even speaking aloud) should not be an ONLY measure of cognitive ability or capability. While it is a measure for SOME, it (like many assessments) is not an adequate measure for ALL. One of my sons never read FLUENTLY aloud (still doesn’t in his 20s), but could read aloud in a stumbling manner. Yet he also demonstrated deep comprehension in other ways. Teachers continued to be surprised at his capability all the way through high school, because they were dependent upon the ONE measure of capability–fluent reading.

  3. sorry. 50andfitnotskinny is me, Linnea. i have a new blog, so it automatically used that name.

  4. Thank you for this post! Our children are being let down, sadly, by healthcare professionals and special education teachers. My husband and I are anticipating that our son’s special needs school will shortly be calling a meeting with us to tell us that they “can no longer meet” our son’s needs. Why? Although my son is keeping pace academically with his peers, he has not developed speech and language. I live in the UK, and there are some Autistic children who are excluded from mainstream schools every day, because the teacher/t.a. “can’t cope” with the child’s behaviour. That is one form of exclusion. Excluding a nonverbal child from a special needs school, because he has failed to develop speech and language is another. It is discrimination, and it is another example of how our children, particularly our nonverbal children, are being failed.

    • Yes, our children are being let down, autistic adults are being let down, and it’s really, really upsetting. Really, really frustrating. And we have to, all of us, we have to keep talking about this. Nothing will change if we do not continue to talk about this.

  5. At almost 4 yrs old i hope for a day when my E is even as verbal as Emma is, I hope for a day when he can effectively use his AAC to communicate his thoughts much as Emma does rather than perpetually ask for snacks, perhaps he’ll be one of those unexplained children who suddenly starts speaking in sentences one day…like i think all of us id like to hear I love you mommy just once….BUT…i also realize some things. I realize that even though right now he has a wonderful team of therapists who believe in him, love him, and see what he is truly capable of….his intelligence…that once he leaves that safety net for public school that I may be in for a LONG fight with grossly misinformed people to get the support he needs and to keep his AAC in the classroom and accessible. I realize that even if he does speak one day that does not necessarily mean he will say those words i long to hear, and even if he does become verbal that does not mean he will be able to effectively or consistently depend on spoken word to communicate. I realize that he may never speak much at all….but you know what? It’s ok.

    Using an AAC to communicate his thoughts and feelings doesn’t make them less his thoughts…in fact as you and others have pointed out it may make them more. I am more interested in him learning to communicate rather than speak. Every day i look at him and see a highly intelligent little boy and have to rely on the experiences of others to try to catch up to him and see even a little piece of the world through his eyes. My greatest hope is that one day HE can be the one showing me…and maybe showing a few others along the way.

    The world does need to change…its so frustrating to have one child continually overestimated in his abilities to do everyday things just bc he is borderline genius and verbal, and one who will be underestimated bc he is nonverbal. They are both capable of anything, they are both very intelligent, they are very different…but they both need understanding, support, and acceptance as who they are, not who they are perceived to be.

    • I hear you.
      Just so you know, and as a quick aside, my daughter stopped speaking when she was three. Completely. Nothing. Not a word. Slowly, slowly over time she began to say things, and now she is almost twelve years old and is starting to write her thoughts, but cannot speak them. One day she may be able to do both, or not. Either way, she will continue to communicate with us and we will get better at learning what helps her the most.
      We place so much emphasis on our children saying those words, we want so desperately to hear them, but through their actions they are telling us all the time how much they love us, the very fact that they forgive is perhaps the best demonstration of this, far more meaningful than those three words. I have not yearned to hear those three words for a while now. I am just so grateful she forgives me.

  6. Please tell Emma thank you for allowing you to share how she learns and processes information. It is so helpful for those of us who have autistic kids to hear about how things are working inside their heads.
    I must be extremely lucky with the school my son is attending. We went to the K4 parent night and I talked briefly with his classroom aide (who doesn’t see him all that much since he is in and out of the classroom and he also has his own 1:1 aide). She said that she knows that Nathan is as smart as or smarter than the other kids in his class. I almost cried. I know that he is intelligent, but I wasn’t sure if the school would see that, since he is “kinda: verbal, and it is unreliable. I was expecting that I was going to have to do a lot of work to prove to them that he is smart, and that a lot of the responsibility would fall on him to have to demonstrate his knowledge. So, while a LOT of school associate verbal language and fluency with intelligence, there are a few that do not.

    • It’s always good to read those stories about the schools that are doing things differently. I know they are out there, I know there are many, many wonderful teachers. It’s so important that we acknowledge the schools that are changing the way they teach and supports their staff to think beyond what they’ve been taught. We had a wonderful teacher last year and are hoping to have a similarly wonderful experience this year. We will see.

  7. I was just thinking of the movie :The King’s Speech and how his stuttering was regarded as imbecility and his unworthiness to rule. Speech is one of the most judgmental aspects of how someone is regarded.

    • Unfortunately, that’s not just a thing of the past. There is a huge difference in how strangers and acquaintances alike treat me when my speech is smooth versus when my stutter is playing up. People talk slower, they patronize me, they dismiss my opinions before they even consider them, and otherwise presume me incompetent on days when I can’t speak well. Just because I mix up words and repeat sounds a lot. In some cases, they do this even though they know me and know that I’m very capable.

      Because of that, on days I can’t speak well, I usually try to opt to simply not speak as much as possible. Not because I can’t speak at all, but because the stress of how people react to my speaking difficulties makes them even worse and harder to deal with.

      And I almost never lose my speech entirely. I just have days where it’s very hard. Imagine what it’s like for people like Emma, whose best word days, from what I can tell, are about on par with my bad word days. When I was a kid, that was the case, and sometimes I would just explode from the frustration of being treated as if I was stupid.

      (and I still have a hard time with being treated as if I’m stupid. If I feel like someone’s slighting me or patronizing me in that way, it’s usually guaranteed meltdown… not necessarily because of what they’re doing, but because it brings back all the frustration and hurt from having even the teachers assume that because you can’t talk well, you can’t think well.

      • ischemgeek – your comment made me think of a conversation I had with someone who was extremely intimidating and I basically could not put a sentence together. I was mortified and of course the more self conscious I became the less coherent I was until finally I stopped trying and sat quietly through the rest of the dinner party without speaking.
        To be unable to rely on language, to never know when it might all disappear, or to not have any language ever… I often wonder what that does to one’s self esteem. What does that do to one’s sense of self. I can only imagine it might be devastating.

    • Yes, it’s sadly true.

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  9. I love reading your blog. My autistic daughter is verbal but she struggles immensely to articulate anything of real importance. I have been very fortunate that her care professionals all agree with me that a) her intelligence is without question and b) that her first language is not spoken but visual. She processes pretty much everything visually. It is not always obvious, but slowly I am learning from her, not teaching her, and she is the happier for it.

    Please thank Emma for allowing you to share her journey. It is vital that as many people as possible change their default thinking to “presuming competence”. The spoken word is just one small facet of communication.

    • So wonderful that you understand and are open to what helps your daughter.
      Isn’t it weird that presuming competence isn’t a given? We’ve been so conditioned to think otherwise, it’s difficult to make people understand how important it is. And yet once we get it, I’ve never heard anyone say they then reconsidered and reverted to their past thinking.

  10. Yes, we must keep talking about this and writing about this. We must listen to autistic people. They are the experts on autism. A huge thank you to you and Emma. And to Jess at Diary of a Mom. If not for you all I may not know about Lois and Barb. My non-verbal adult autistic brother is working with Lois and finally learning how to communicate: he’s typing! The window of opportunity never closes.

  11. Speech is certainly one of the harshest ways people are judged even now. If I could film how the treatment of me changes over time as stress accumulates and speech dwindles until I am being spoken about rather than too other than by people in overly sugary voices. They just tested my IQ it is at least 3 standard deviations above the norm on the whole verbal scale, with the performance scale being more sucktacular.

    My favourtie line and one which I still will put on a t-shirt one day was a housekeeper who queried about how mentally retarded I was and the nurse said actually she’s a super genius. The housekeeper rested her broom on her cart, hmmphed and said, “If that isn’t a tragic misplacement of intelligence”.

    People always think that’s so awful but she was honest. The people who talk about me or talk to me as if I understand about as well as my dog they are not so honest or at least they are not sincere. The housekeeper called it how she saw it and there has been many a day when I have thought she was quite right.

    When your speech gets halting, and the words come slow people start to shift back and forth. I go to the same place to eat nearly every night before my band not because I am wild about their food but because after ordering the same thing enough times in a row when I was slow someone just asks if I want the usual and I just have to be able to nod.

    Of course it isn’t really right to be offended because it seems like they think I have cognitive deficits that I don’t because of course even if I did they should act like decent human beings and have some patience and politeness. Still it is hard to be talked down to by people you could run circles around academically in a tolerable environment

    There are days I just give up and stop even trying to get a word out when they are coming too slow for people to wait for them and that’s less stressful but tends to lead to more of my being grouped into “people like them” (what people who get stressed in an inefficient healthcare system and can’t take the noise and the light in what has to be the worst designed waiting room in a building under 5 years old in the world? Those terrible people who need only minimal care because after all what does it matter? (That’s essentially what I went through last week only I wasn’t a those kind of people for the reasons I stated which were the reasons that led to my lack of responsiveness and increased rocking)

    People just are not patient enough, understanding enough or kind enough on average.

    • “If that isn’t a tragic misplacement of intelligence”. Wow. And yet, if people were better educated, if it was understood and expected that people’s speech and abilities shift and change and society was able to embrace and include those who lose speech, are non speaking or have unreliable language, without mistaken assumptions, then it would not be “tragic”. In fact, what is really tragic is how ignorant so many people are. What is tragic is that the housekeeper didn’t know better. What is tragic is that so many people like yourself carry the scars of such rabid ignorance.

      (((Gareeth)))

      • What’s tragic for me in it all is that I have never had what I believe may have been fairly minimal formal supports to keep me moving forward and to become something, It isn’t entirely wrong at all to see it as a tragedy that (or maybe a crime) that despite knowing what I could be capable of that didn’t matter at all to the system. Wouldn’t it have made more sense to spend a little money 25 years ago to turn me into a taxpayer than to have me live in poverty my entire life, open to exploitation because change is worse than that etc…

        Short of illness or accident people spend the bulk of their lives as adults and all the emphasis is put on childhood. After that please just sit quietly in a pit of a place and try not to bother either the system or the taxpayer.

        As things stand in the place I live the housekeeper was 100 percent right because the way it tests out this mind could have done something important for humanity it shouldn’t be in a person who can barely stay alive, and mainly just passes the times with various diversions. It’s a waste. I know it is a waste. I know I have nothing approaching the life of an adult.

        I feel often like a kid who is mostly forced to look after themselves as 90 percent of adult things don’t apply to me at all. I know people are supposed to hate paying taxes but I wind up in tears at the thought I may never do it.

        • Gareeth – I hear you. You ARE of value. You are. Your life does matter, despite the cruel treatment you’ve been subjected to, despite how awful people are and the terrible things they say, despite all of that, you DO matter. You have made a difference in my life, you have affected my thinking, your words have changed me. I am but one person, but there are others who have also been affected, who’ve read your words and been deeply affected by them. All of this may sound hollow or perhaps isn’t helpful as far as your day to day struggles and what you have to cope with, but you ARE of value and your words are powerful and they DO resonate for a great many.

  12. It’s not that they ring hollow. It’s just it hurts so much just to stay alive. I have never felt worse and I feel guilty that’s the case because compared to other times in my life I have far more people who care about me. I don’t know why it doesn’t stop hurting but it doesn’t.

    Tonight (well Friday night) two friends picked me up to have dinner with another person who’s birthday it was before Friday night services. The person who’s birthday it was gave me a present.

    At services I was called to light the candles and I got tongue tied. (Maybe so this reply would at least be related to the topic) I blurted out it always comes out fine for my dog and the rabbi was very nice explaining to everyone how people get nervous etc… even though you almost never see a woman screw up when she goes up there.

    As always they sent me off with the left overs from oneg (delight – like coffee hour but more elaborate because one is commanded to take delight in Shabbat and food is a primary way humans are delighted) So home I went with chocolate, cheese, and challah.

    The day before people arrived with cheese (it is lucky I am not lactose intolerant, chicken, crackers, oranges. A few days before stew and vegetables. I am cared for by my religious community in the most concrete way they know how . Having watched me lose half my body weight they feed me endlessly but the rest they are powerless about like everyone. They are wonderful people. Not a jerk in the entire bunch.

    Tomorrow (today I guess) I will go to Torah study. Odds are high I will be the only scholar. More of the same. My mind must not be neglected but at some point copious quantities of some food will be offered up.

    While the official people who control my care make terrible decisions and are mean its not like I lack kindness in my life too including from you and other bloggers so no it doesn’t ring hollow I just don’t know why it doesn’t get better.

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