Susan's Blog

Saturday, February 28, 2015

Asking for, needing, help

I remember once, when I was in first grade, Mrs. Newman had us write all the numbers up to 100 and beyond. I can see the lined paper in front of me, and the fat pencil with its silver rounded match-head size tip gripped in my chubby hand. I wrote the numbers, “1, 2, 3..” I thought ahead and realized that I did not know what was after 100. Mrs. Newman was mean and so I knew I could not ask her. Everyone was writing their numbers and I asked to go to the bathroom. I left the room and just hid outside the classroom door for the rest of the period, my stomach in knots, because I just did not know those numbers and there was never any help, anywhere.

I still hate numbers, math, my old school, and especially that feeling of not knowing something everyone else seems to know: that feeling of being cut off from the others, floating, looking in from the outside. Loneliness, stomach ache, desperate to go and cry.

I was lucky enough to be able to arrange my life so that I am rarely ever in that position anymore. Because I still hate to ask for help. It’s amazing to me how quickly that teary choking feeling rises up when “I don’t get it.”

Most people probably don’t like to admit they need help. I guess there is shame that gets attached to it somehow. So I wonder how someone with a disability, who often needs help, feels about this. I wonder how Nat feels about his dependency on others.

I also wonder how Nat feels about the fact that so many people around him assume he needs help. This came up recently at a medical office, a practice I knew a lot about and was considering for Nat. I liked the way they were trying to think about adults with autism, to offer services beyond childhood.

Yet immediately I had to fill out paperwork that was all about “my child.” His year in school. His classroom therapies. His siblings, anyone else “in our home.” Nat is 25. He’s been out of school for years and he does not have therapies nor does he live in our home. Okay, I filled it all out anyway. But then the nurse came and chirped “Nathaniel?” and off we went.He was asked to take off his shoes, and asked if he could take off his shoes himself. He could. “Great job, Nat!” He was asked if he could step on the little red footprints to be weighed. He was congratulated for getting that right. He had to get his blood pressure taken, “This little band is going to squeeze your arm!”

At this point I wanted to squeeze her head but I said, “Oh, Nat is fine with being in a doctor’s office,” and I said it in a trailing way that invited Nat in to the conversation. He said nothing, but I felt that at least I had opened up the circle for him.

Similarly, when we were meeting with the doctor, I got ready to work out how to ask and answer questions about Nat with Nat right there in the room with us. I want to include him, but I know that he cannot always/often access the accurate responses about his health and life. My solution is to listen to the doctor’s question about his sleep habits for example and then answer, saying, “Nat, I think you sleep well these days, do you?”  Or about diet “Nat, you like most food, right? What did you eat today for lunch?” I try to give him a way into the conversation.

The doctor was better than the nurse had been but there was still that cringing moment when she said, “Great job, Nat!” after he’d answered a question, as if he’d discovered the cure for the common cold. I wanted to ask her, “How would you feel if someone squealed, ‘Great job!’ to you like that?” But I didn’t. Instead, I tried to show her another way. At the next opportunity when Nat responded to something, I said in a normal voice, “Nat, I like the way you’re talking to us.”  Just a small noticing, then we just moved on.

It’s hard enough being unable to keep up with everyone in the room — especially when they are talking about you. But Nat doesn’t withdraw in shame like I did/do. Nat just soldiers on,  listening carefully though appearing “in his own world,” talking to himself “stereotypies,” as the doctor put it. “Expressing himself,” as I put it. Thinking his thoughts.

But nothing proves it to you until that smile of his breaks loose all of a sudden, and his eye flickers at yours for an instant. Seductive in its powerful intelligence, he is almost winking at you across the room. If you are one of the lucky ones, it will stop you cold, and you are humbled.


“I wanted to ask her, ‘How would you feel if someone squealed, “Great job!” to you like that?”

The next time a nurse — or anyone — acts that way to your son, watch to see what’s the next thing that this person does (such as affixing a blood-pressure cuff, or whatever). When s/he does it, squeal at her “Good job, Nurse!” (or “Good job, [person’s title and/or name]!” generally) with a hugely exaggerated smile (or whatever other infantilizing facial expression/gestures/etc. the other person had been using on your son). As the other person begins a silent response — or gives signs of being about to utter a verbal response — right before the other persin actually says anything, ask (very unemotionally): “What were you feeling once I spoke to you in the way that you have been speaking to my grown son?”

— added by Kate Gladstone on Saturday, February 28, 2015 at 1:28 pm

And if you can do that, I promise NOT to tell you “Good job, Susie!”

— added by Kate Gladstone on Saturday, February 28, 2015 at 1:30 pm

Kate… 🙂 <3

— added by Susan Senator on Saturday, February 28, 2015 at 2:55 pm

I want you to know I forward your articles to my grown daughters because you express so eloquently what I have been trying to tell them for the past 15 years. Thank you.

— added by Susan on Sunday, March 1, 2015 at 7:37 am

I am curious why Nat has no form of Augemnt. Communication? With all the great augment. communication apps for use on the iPad now (Touch Chat and many others) every individual with limited verbal ability needs some form of communication. He is very bright and could learn so he WOULD have his own voice in a situation like this and all other situations.

As far as the nurse and others saying “great/good job” Soma M./RPM developer explains exactly why that term should NOT be used. Her books are great. Her metholodgy also teaches kids to systematically learn to express themselves by answering questions through choices and then through spelling and then through typing. It’s very long process but works well also.

I think every person who can not verbally express themselves deserves to have some sort of alternative way of communication to let people know their wants, needs, and feelings. Sadly, the ABA centers do not teach or encourage this well which is a shame since ABA and Augment. communication can easily go hand in hand.

— added by LP on Sunday, March 1, 2015 at 4:41 pm

Not sure why you think Nat has nor form of Augmentative Communication — he does type in Facebook, for example. The thing is, not every person with ASD *wants* to communicate and Nat may be one of those (though not always). It’s not necessarily about the technology all the time; sometime it is about him wanting his own space.

— added by Susan Senator on Sunday, March 1, 2015 at 7:02 pm

Susan, it’s as if you were channeling my last doctor’s appointment with Justin. I “model” too and sometimes the practitioners actually catch on. Loved this, and particularly loved your last paragraph. I love days when I’m one of the lucky ones too. Thanks for sharing this!

— added by kim mccafferty on Monday, March 2, 2015 at 2:26 pm

“As far as the nurse and others saying “great/good job” Soma M./RPM developer explains exactly why that term should NOT be used” — I’d like a link to that, please. I could send it to the “Gooooood JOB!”-squeakers, as occasion arose.

Re ABA discouraging the use of keyboards, etc., to converse — from my own (limited and generally unproductive) contacts with ABA trainers, I suspect that this is because they emphasize becoming “behaviorally indistinguishable” from.peopke who are without autism. In other words: if ABA had been invented before the invention of eyeglasses or the invention of walking-canes or wheelchairs, the use of either too (by people with a reason to use it) could have been considered an undesired behavior, to be prevented (and to be extinguished, if already in use) so that the person who can benefit from any such thing will appear “indistinguishable” from others who don’t need or use the same tool.

— added by Kate Gladstone on Monday, March 2, 2015 at 5:12 pm

Susan, I learn things from you I need learn. I am catching on to not speak for my son. When I have, still do …. I do not mean to marginalize him. It is because I am so protective of him and it is just in my mindset. And, thinking of the other phrases does not readily come to me. I am a mother and I am a nurse involved with children diagnosed with autism. So, I need to learn and grow in both places.

Having been shamed for things in my life, saying “good job” to a person for their own ignorant, unskilled talk would not feel right to me. Simple, authentic talk expressing myself would as well as modeling.

Lastly, Kate, I appreciate your comment regarding behaviorally indistinguishable. That said, we all are different, including those working in ABA. I have had experience to have services from ABA people that did not try to eliminate certain things about my son’s behaviors, I had some that did approach a change. There, I communicate how autism is not removed and all instruction/approaches need my involvement and thought. My son is my son. If I am fine with hand flapping, then I am fine with hand flapping. Just as I do not expect a blind person to appear not blind, I do not expect people with autism to not appear as though autism is there.And, in being picky about a “best haircut” I can obtain and being told people will not see the haircut as much as the autism … again, he is a person and I want what best it is I discern.

— added by Stephanie on Friday, March 20, 2015 at 6:58 pm

Interesting comments. I’ve worked with individuals with autism for over 30 years, mostly in applied ABA settings and we used AAC all the time, in every way, once it became available, if it was the right thing for the child/adult. ABA is not person or an entity, it is made up of people, some great, some not so great, some skilled, some not so skilled, much like anything else. I am not an ABA trainer, I’m a teacher who uses ABA to teach, individualized for each person with home I work, changing and growing along with the person. I don’t say “great job” I use language much like Susan describes (Thanks for answering, going in, looking at me, etc.). Generalization can be both good and not so good. M

— added by Michele on Wednesday, March 25, 2015 at 9:36 pm

Just saw this post and wanted to compliment you again on your ability to put scenes into words. I love reading your writing.

— added by Donna on Sunday, April 5, 2015 at 4:55 pm

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