Susan Senator
All happy families are not alike...
All happy families are not alike...
Taking Nat At His Word
Where I last left off in this blog, we had dipped our toes into the world of Facilitated Communication. Nat had gone to two sessions. He’d typed with the therapist’s hand under his wrist, his pointer finger poised at the screen and the stuff that came out was extraordinary, breathtaking.
But in the end, I just could not believe in it. At the time, I wondered if I was betraying him, if this was his True Self, finally coming out. But the sentences just did not sound like him, other than in one or two instances. Yet I was to believe that just because a therapist (a person he’d only just met) supported his wrist in a particular way, that he was now typing what was in his soul, not simply the usual words shredded by his tongue. Never mind that he types independently on Facebook. No, this new approach was supposed to override all of that, as if all of his previous struggle to speak and communicate with us counted for nothing. The sentences were so long, not his clipped, economic use of only the necessary phrases. The first revelations were about how he loved me and how his brain was all there.
Rather than making my heart soar, this was what made me have my doubts — not about his brain, or his love, but about Facilitated Communication. Why in the world would Nat think I needed reassurance — about his brain or anything else? Our relationship is healthier than that. We are bonded unalterably. We take our love for granted. No, he does not say “I love you,” of his own volition. So what? Why should I be so vain as to need to hear that from his mouth? Parents are supposed to be there for their kids, not the other way around. My two neurotypical sons rarely just blurt “I love you, Mom,” except maybe on my birthday or if I’ve been sad about something in relation to them. It’s a high when they do. But it’s not my focus. Hearing “I love you, Mom” is definitely soul-satisfying, but the more important thing is how are they doing/growing?
And from Nat, who has a hard time speaking: I cannot expect “I love you” out of him, except in echolalia.
And as far as believing in his intelligence — I have nearly two decades of written evidence that I believe to my best ability that he is indeed competent and comprehending. Original, unique, loving, beloved. I don’t need a typewritten intentional testament to believe in Nat.
****And if you are using FC and feel good about it, then take that and run with it. ****
But now I gotta ask, why in the world would I disregard all of his labored utterances as well as his noisy silence out of some need to hear him sound like a Hallmark Card Man? When in fact, Nat is always communicating, always telling everyone what’s on his mind–it’s just that I don’t always know what he’s saying. But if a human being sits there and speaks in sounds that make him smile and laugh, he is indeed sharing with you that something is making him feel happy. If he sits there and then jumps up and starts flailing his arms and walking around really fast, you can assume that something’s on his mind that he needs to express. And so he is. Or he needs to express it stronger, so he finds another way. Sometimes it works, sometimes not. Okay, we are all works in progress.
There are at least three ways that Nat has always communicated: the tuneless phrases that answer our questions and tell us not to deviate from our promises, our schedule. The singsong self-talk that I believe is compressed or elongated meaningful words that he does not want to say directly, or cannot say directly. (“Mah-ee” is Mommy. “Wheels,” might be wheels, but it might be something else because it always makes him laugh.) Finally, there are his physical actions, the way he listens with his whole body when we are talking about events to occur. The way he jumps up to do any favor I ask of him.
I felt so guilty at first for having doubts about FC. Here was Nat, typing sentences, using “you” and “I” correctly, writing about the past, the future. Using metaphors. How could I not support that?
I asked him if he wanted to go back. But after all the wonder we expressed at what he’d written, and all the praise, Nat took no time at all to answer, “NO.”
And that’s a word I can believe.
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Very interesting,Susan. Nat is the best source of Nat. I believe it.
Dear Susan,
You have given the impression that Nat’s FC assessment and intervention was done at The Lurie Center in Lexington. I would like to correct that impression:
1. I am the clinician who was conducting the study, and Nat was definitely not a study subject. I have never met him or you, Even if you are using a pseudonym, the facts don’t match any situation I know of. If Nat was assessed by someone, you should be very clear who that is.
2. I typically do not support someone at the wrist unless he can’t isolate his index finger, and even then I move quickly up the arm to fade support.
3. My documentation will support me: all sessions were videotaped, and data was collected. Nat was NOT seen by me, but perhaps he was seen by another person somewhere in Boston who was experimenting with FC. Please remove all references to The Lurie Center in your posts, because it is simply untrue.
Lisa Keller
Hi Lisa,
There is nothing at all in this post that connects Lurie to anything I’ve said about Nat’s experience. You are correct, however, to point out that Nat did not go to Lurie for FC, ever.
[…] “Taking Nat At His Word” […]
Lisa [Keller]:
When I commented in September I mentioned the Lurie Centre, though I did not know the town it was in.
So, yes, I probably did have that impression through other knowledge and research.
I now know that Nat did not go to the Lurie Centre. Thank you.
And there are probably lots of experimenters.
Thank you for your clinical work, Lisa Keller. Arm support is best practice – and fading it is very important.
And Lisa [Richardson]:
Yes. Nat is the best source of Nat.
He types independently on Facebook after all – that’s a big validation for many who have never heard of facilitated communication training / supported typing.
But now I gotta ask, why in the world would I disregard all of his labored utterances as well as his noisy silence out of some need to hear him sound like a Hallmark Card Man? When in fact, Nat is always communicating, always telling everyone what’s on his mind–it’s just that I don’t always know what he’s saying. But if a human being sits there and speaks in sounds that make him smile and laugh, he is indeed sharing with you that something is making him feel happy. If he sits there and then jumps up and starts flailing his arms and walking around really fast, you can assume that something’s on his mind that he needs to express. And so he is. Or he needs to express it stronger, so he finds another way. Sometimes it works, sometimes not. Okay, we are all works in progress.
There are at least three ways that Nat has always communicated: the tuneless phrases that answer our questions and tell us not to deviate from our promises, our schedule. The singsong self-talk that I believe is compressed or elongated meaningful words that he does not want to say directly, or cannot say directly. (“Mah-ee” is Mommy. “Wheels,” might be wheels, but it might be something else because it always makes him laugh.) Finally, there are his physical actions, the way he listens with his whole body when we are talking about events to occur. The way he jumps up to do any favor I ask of him.
I felt so guilty at first for having doubts about FC. Here was Nat, typing sentences, using “you” and “I” correctly, writing about the past, the future. Using metaphors. How could I not support that?
I asked him if he wanted to go back. But after all the wonder we expressed at what he’d written, and all the praise, Nat took no time at all to answer, “NO.”
And that’s a word I can believe.
I read somewhere in your blog a reference to Mass General and FC. For 2 1/2 years I created and implemented a quantitative research study on FC, to respond to all the people who kept insisting that FC wasn’t evidence-based. In a very short time, most of my minimally-verbal adult subjects were typing complex thoughts and ideas with minimal support at the shoulder or back. They continue to do so away from the study, with their own facilitators. I also encourage the use of verbal speech whenever possible because, after all, that is the ultimate goal.
Despite this documented success, the Lurie Center administration did not have the strength of their convictions, and have decided to phase out the “touch” part of the study. One cannot have an FC study without touch, at least initially, so we have parted ways. I continue to see clients in my private practice. I ALWAYS use/insist on Best Practice Standards where FC is concerned.
FC has gotten such a bad rap that even our attempts to legitimize it (through a quantitative study in which every aspect was operationalized, videotaped and documented) is attacked. The haters refuse to meet anyone who actually types with minimal or even no support, and cite research that 1) is 20+ years old, and 2) demonstrates poor methodology. Our attempts to publish results in a Catch-22: the reviewers insist that FC has been debunked and therefore refuse to review any articles. Since the articles aren’t reviewed/published, no one sees them and then people continue to insist that the research is not there. You can see how frustrating this is.
I hope that you will give FC another try with Nat. I would be glad to assess him myself.
Lisa
Thanks for this Susan, I’ve been waiting to see how it all turned out. I’ve always felt the same about hearing “I love you” too. Appreciate your insight on FC and have a wonderful Thanksgiving!
I have no trust in FC. That’s the it, all and my nickel’s worth. My son types the way he talks. My son has been taught grammar, spelling and all that good stuff and like all children about the age of 8 (developmentally – although he’s nearly 16), he doesn’t always use what he’s taught.
I would rather he communicate with me as he can – even in lists, body movements and sounds and his usual 1-3 word phrases. He does write in longer sentences at school to do work but in his day to day stuff he’d rather write lists on his iPod touch. I wouldn’t trust anyone else’s “talking”.
Now, saying that, we learned a lot of skills – including using a computer mouse – using hand over hand. But, until he could repeat my actions independently, I never believe he did it himself.
My opinion is just that… mine. What other people do… totally up to them.
Lisa Keller:
“In a very short time, most of my minimally-verbal adult subjects were typing complex thoughts and ideas with minimal support at the shoulder or back. They continue to do so away from the study, with their own facilitators.”
How do you define a complex thought? Minimal support? Shoulder and back …
When you had said “Verbal speech is the ultimate goal”, I felt something inside of me. “When possible” you qualified with
And citing 20-year-old research except in a literature review/meta-study … research has been getting better and better. Methodology is something I look at a lot.
Good strategy for the quantitative. So we are in May 2015 when you began to make the study?
“Touch” – with touch or without touch? And we can’t have a study without touch?
Since the articles aren’t reviewed/published, no one sees them and then people continue to insist that the research is not there. You can see how frustrating this is.
Yes!
And have you seen what Boskovic has written?
My questions regarding FC are these:
1. How in the world are we supposed to believe the unbelievably sophisticated language suddenly coming out when using FC? I mean, come on. Where would kids (many very young kids) learn this kind of language/grammar? Most of it is not even developmentally appropriate. I know typical kids at the same ages not even using this level of language. I think FC is a hoax in this way. I would believe it much more if they were using grammar in a basic manner.
plus
2. WHY do FC providers have to support their wrist or hand? Many kids on the spectrum are very good at typing either on a keyboard or iPad. So WHY are the FC therapists guiding them? Sorry, it just will never pass the test for me.
Just my opinion.
Thanks for posting a follow up, I was curious how it worked out. My daughter is fairly verbal but usually only to express needs/wants.
I know this is a late post, but good for you for listening to your gut.
If someone is using FC and it works for them, good for them.
But I think you bring up some valid concerns and I’ve had them with other family stories I’ve heard with FC. Just my two cents. Thanks for the follow up.