In Search of Words: Say it, and Say it again

On the last day of the school year after 4 weeks in this school, as I inventoried my caseload, there was one child whose code I had not cracked. I was concerned. I wore long sleeves in 80+degrees because it was my day to see him. He made no verbal sounds that anyone could identify, couldn’t hold an object in his hand without assistance, and tended to scratch the adult with him. My passion is, as you may know, something called AAC, Screen Shot 2016-06-23 at 11.41.43 AM.pngwhich my son uses to communicate, in his case via iPad and an app (for more information on what he uses, click here.) The iPad “speaks” for him because essentially his own vocal tract doesn’t respond to his commands and intent at all well.

The district I’m in now, however, follows rules which
strictly limit children’s “screen time,” meaning no television babysitters or canned lectures, and their access to cause-and-effect toys, which are useful when a child cannot speak. So I had been leaving my touchscreen AAC devices and touch-button toys at home, bringing velcro’ed, laminated pictures instead. Most kids like them.

But laminated pictures make no sound.

It being the last week, I had begun to take liberties, however, and had already used my iPad for all sorts of vocabulary lessons with children in general education. This iPad is mine now, but it was my son’s very first one (the iPad 1), old and heavy. The app my son uses for communication includes various levels of  “vocabulary sets.” A vocabulary setScreen Shot 2016-06-23 at 12.00.27 PM.png is an interlocked set of screens with pictures that, when touched, say a word or phrase and show its spelling, or navigate to another screen. The “Things” button goes to a menu including buttons for more choices, such as “Toys” and “Food.” The “Food button in turn offers “Breakfast,” “Fruits,” “Vegetables,” Meats,” and there to pictures of “fish” or “burger.” You can “say it again” by pressing a speech bar at the top that holds the spelled message.

Using an iPad for communication at home requires a parent or student to take Screen Shot 2016-06-23 at 11.55.38 AM.pngcare of the equipment, charge it, and run updates. In school, breakage and loss are less likely.  Several students in this school clearly Screen Shot 2016-06-23 at 11.55.58 AM.pnghad used touch screens, but this child had not. Furthermore he had dropped many of my toys. For many reasons, an iPad was not my first or second choice for him.

Screen Shot 2016-06-23 at 11.58.13 AM.pngHowever, tour hands are always with you and never need a charger. So I
started to have this boy request (“give me”) by touching his open, flat hands to his chest. At some point when I had beenScreen Shot 2016-06-23 at 11.59.21 AM.png showing him sign language, I realized his limp arms were not responding to my touch at all. I had tried to get him to understand that sign language really is a way of “saying” things. He was not producing the signs with floppy arms and hands, so while he might learn to point eventually, he wouldn’t today. I only had him with me today.

So I held him with me for a longer session than we had ever had. I wasn’t going to let him end the year until he’d experienced the joy of communicating clearly. We started to use the iPad to “say” various things, my hand holding his. In a picture of Beach, you could “say” sand,” “water,” “ball,” and in the page of “needs,” you could say “break” and “I need a break.” He began to touch the iPad independently to make it respond. I’d tell him to “Say it again,” which meant touching the letters at the top so the iPad would repeat it for you. I’m not sure how far into this exercise it was, but he became very calm. He focused and stopped moving or flopping. He didn’t scratch me for the rest of the session.

Screen Shot 2016-06-23 at 12.01.54 PM.png

Kitchen scene (TouchChat)


I don’t know how much of he understood, but he stopped getting mad when I told him to “say” something.

Children who cannot speak may not understand the words we say a lot of the time. They do often understand the emotion and intention behind what we are saying. With the utmost sincerity, certainty, and calmness, I told him,”This is how you say things. Your mouth doesn’t do what you want. I know. It’s hard. You say it with the iPad.”

Softly, at a speed about 5-7 times slower than typical slow speech, he said,”I want iPad.” I will never be able to prove that he said that. I do not need to because I understand what he meant. I told him, “You will be fine.”

I had kept his group an extra half-hour. It was a half-day. In fact it was the last day that school building  would ever again be filled with students. It was antique and closing permanently. “We may see each other again. You will be fine,” I said as we went out to the playground. I knew he does not understand the conditional word “may,” but I was talking for myself more than for him. And who knows. Maybe we will.

A-B-C-s of Behavior for Children, #autismdiagnosis #communicationdisorders #earlyintervention #EI #specialneeds #preK #latetalker

Good Boy, Bad Boy
When my son was two, a younger cousin bit him. I was shocked. Never, my son would never ever do that. He was an “easy” baby, not demanding, never clingy like other babies. Not my beautiful, perfect son.

What’s the Word: Autism diagnosis
When our son reached age three, he still wasn’t talking. I’d hear maybe 1 or 2 words in a day. A few more parts of syllables, here or there. I never heard “Momma,” and he never called for me . My name was a rare, mumbled sound like wawrah, an attempt at my first name.

At 3 years old almost to the day, our was diagnosed with severe language and cognitive problems. He’d spent a few minutes with speech and language pathologist, and she told us the bad news. Our son hadn’t learned “object permanence.” That means that objects continue to exist when he can’t see them, and people live beyond his view. “Object permanence” is what infants learn that makes peekaboo so much fun. Then he went to a developmental pediatrician who said it was Autism, and wouldn’t explain. She said, “Read this,” handing us a photocopy of the cover of a 700 page book by another developmental pediatrician. My husband was a lawyer whose charms included loving to talk a lot, to tell stories, and to crack jokes. His job involved reading hundreds of pages a week. Before the diagnosis, he had confided that having a “disabled child” was his worst nightmare. He immediately got the book out of the library and started to read. By about Saturday, he was finished. Cover to cover, without taking a day’s break, or and without making a comment to me. For the next four days, he was silent, making just a few monosyllabic replies.

Expelled from Pre-School: third time’s the charm
Soon our son was established in an autism pre-school program five days a week. He’d been tossed out of a day care center (only going 4 hours a week), and a Montessori school the previous year. Within a few months in this special program, he was having difficulty. He still wasn’t talking at all and couldn’t hold a crayon. The class had 10 children, 8 or 9 aides, two full-time teachers in one large, loud room, with a speech therapist next door. On its face, the program sounded terrific. He was miserable.He knew he couldn’t do what they were asking him to, and that the other children with autism could. He bit his aide once month, the next month bit a different aide several times, and so on. He was smitten. One day, a new child joined the class. A girl in a sea of boys. Blonde, silent, and adorable. One day at circle time, she was sitting at the circular table next to him, when he bit her. Her mother removed her immediately and permanently from the class. (In a future post, you’ll see that “the girl” and my son crossed paths again, with a different result.)

Bad Boy
My beautiful, perfect son who was never going to be one of the bad kids was now singled out. One of the classroom teachers took over as his aide. She kept him separate from the others, inside a squared-off set of child-proof gates, corralled all day. His work? “Object discrimination.” It sounds fancy, but he had to point at a small water bottle when told “water,” instead of pointing to a tissue on the table. The teacher would switch the objects’ places. He couldn’t do it, and the frequency of biting increased. (Another post will cover how, at age 14, I helped him get over this early childhood trauma.) It seemed now that he was biting the teacher every day, sometimes more than once. He’d attach himself to my arms now, too, with teeth that were large, sharp, using strong jaws. My forearms were increasingly bruised, and sometimes bloodied. In a parking lot once, he attached himself, and, desperate, I sank my fingernails into him, hoping he’d release before taking a piece of my flesh.

Breathe, dear reader, and remember this story has a happy ending.

Angels Come to Our House
My beautiful, perfect son was kicked out of the autism pre-school for behavior. The county program seemed even less well-staffed. So the school district agreed services would continue, but at our house, and I would have to find people to provide them. We found angels. Dr N, now tenured faculty at Columbia University, signed on to design our son’s program. I found a woman who had years of experience teaching children with autism in their homes, J from Alpine Learning Group Outreach, to work under Dr N. Within a half hour with J, she had shown me how to get my son off my arm. Self-defense, against a 4 year old! Hope! (The training is called crisis intervention training.) J’s quick lessons were the first step in getting our beautiful son to be our beautiful perfect son once again.

Look here next for: Crisis Intervention Training, concepts and resources

The next post will cover crisis intervention training concepts and resources with links. I cannot provide you with this training. Concepts and techniques are similar regardless of the age and size of the person. I can tell you, fearing the person you love or need to work with doesn’t help the person at all. You have to be safe, confident, and fearless.