Tuesday, January 24, 2012

What Worked for Gabriel

(In observance of National Autism Consciousness Week in the Philippines, which this year falls on Jan. 22-29. Please feel free to share this with families of children with autism.)

When you write in the Inquirer every now and then about your son with autism, people you meet start talking to you as if they’ve met your son before.

“How’s Gabriel?” they ask. I’ve gotten used to their familiarity with my son. I figure this is what I get for writing for the largest selling broadsheet in the country

At one Autism Society of the Philipines forum, I gave the parents in the audience a list of things that worked for Gabriel that they could try with their kids.

Before I knew it, the Power Point version was being circulated on the Internet. Without annotation, those tips don’t make much sense, so I’ve made time to sit down and elaborate on those points for sharing here.

But first an update, for those who've been asking.

Gabriel was diagnosed with autism syndrome disorder (ASD) when he was almost 4 years old. He’s now 25.

In March last year, he finished his Library Assistantship program at Centro Escolar University.

It took him six years to finish this two-year course. I wasn’t in a hurry, his dad wasn’t in a hurry and he certainly was in no hurry. Like I’ve always said, he has a lifetime to learn what he needs to learn, and we his parents have the rest of our lives to watch him do it.

Over lunch once I brought up the subject of getting him some kind of work. Maybe a library job? He said no. How about in a bookstore, his dad said. Again, no.

“But everybody has to go to work,” I said. “Dad and I go to work, your sister goes to works, your cousins go to work...”

Tito Conrad stays at home,” he said, referring to my brother Conrad.

What could I say? This uncle does stay at home, but that’s because he works from out of his home. He writes a business column and works with various organizations as a strategist.

“Well then, I’ll write,” Gabriel said. That night when I came home he showed me several pages of what he wrote. He had copied some pages from a book onto his notebook.

‘There,” he said, “I’m writing.”

A moment like this jolts you back to reality. Despite the progress we have made with Gabriel to teach him “the stuff of life,” he has apparently not picked up on many things—a classic weakness among people with ASD.

This young man, the son of two people who make their living writing and editing, does not realize that writing is both a physical act (pen in hand or using a keyboard) and a mental act (composing an original story to convey a message).

I praised him for keeping busy the whole afternoon. “That’s good writing, Gabe,” I said. “Next time, you’ll have to write your own story.”

I am sure he can do that. He’s always inventing names for characters that have no names in movies. He likes to make up stories when I ask him about certain scenes.

But back to the subject of work. Gabriel’s dad asked him one time, “Don’t you want to work so you’ll have money to buy your gluten-free cookies at Healthy Options?

“No, I don’t want to work,” he said.

“Don’t you want to work so you’ll have money to buy Belo soap for your face?” I asked.

“No,” he said. Then he looked at his dad. “You buy the gluten-free cookies, Dad.” Then he turned to me. “You buy the soap, Mom.”

Yes, we’ve raised a bully and a freeloader. And they said he wouldn’t amount to something!

Now for the tips… what have we done that worked wonders for Gabriel?


Encouraging language by asking him to “use his words”

When Gabriel was very young, every time he wanted something, he’d pull or push me to wherever he wanted me to get that thing for him. But I’d always say, “Use your words” and teach him the sound. “Koo-kie,” if he wanted a cookie. If he uttered an approximation of the word, if he even gave me as much as the “k” sound, I’d give him the cookie. This proved to be a good step in encouraging him to talk. Even now, whenever he’s getting frustrated and starting to make weird sounds (a sign that he’s about to lose his cool), we remind him: “Relax, use your words.”

Backward chaining for teaching him complex skills

For parents who are new in the game, backward chaining means teaching the last step first. For you, any task may be easy. For a child with autism, even the simplest task is daunting. So break down a task into steps.

Do you know how many steps are involved in putting on a shirt? Let’s say you’ve already laid out the shirt on the bed and now your kid has to put it on. What will that involve? (Out of habit, I'll be using the masculine pronoun from hereon.) Step 1, the child has put the shirt over his head. Step 2, he has to insert his left arm into the left sleeve. Step 3, he has to insert the other arm into the other sleeve. Step 4, he pulls down the shirt.

In backward chaining, you start with step 4. As soon as he pulls down the shirt, you praise him. Exaggerate the praise but be clear about what you’re praising (Good putting on your shirt! That’s sooo cool!) Make it fun (High five!). Note, I did not say “make fun.” I said make it fun.

Next you teach step 3, then step 2 and finally step 1.

By doing the first steps and letting Gabriel do the final step, we gave him the opportunity to get the task done easily. We framed him for success and minimized his frustrations.

We taught Gabriel the so-called life skills - how to brush his teeth, how to put on his shoes, how to button down his shirt, etc. – every task that involved many steps—using backward chaining.

Placing him in an age-appropriate regular classroom

The best place to learn language, make friends, play games, etc. is the regular classroom. I’m not discounting what special education (sped) classrooms can do. My son started in one. But after kindergarten, I made sure he was placed in a regular classroom. He was the only child with disability in his class every year, and a teacher’s aide was assigned to him. He was pulled out for speech therapy. But for the most part of the day, he was in a class with regular kids who did typical things and talked. Most important to us, he was with kids who cared for him and could help him. Some of the girls spoiled him rotten. One bright sped teacher started what she called a “pit crew” for Gabe. What’s the secret behind a racing champ’s success? The pit crew, that’s right. So that’s what Gabe had. His crew was made up of classmates who volunteered to assist him in many areas. They even videotaped the steps in borrowing a book from the library, the steps in eating at the cafeteria, etc.

Keeping "Talking" Notebooks

We kept a "Talking" Notebook (TN) for Gabriel’s classroom teacher and another one for his tutor. We would write down what happened at home that might have an effect on behavior at school (“He coughed all night and hardly slept.”) In turn, the teacher would write about what happened in school. (“During the fire drill Gabriel kicked the PE teacher on the leg.”)

The tutor would write down what skills were focused on that day. (“We started on the ‘more’ and ‘less’ concepts today.”) I’d write down what help Gabriel needed for school. (“Gabriel’s class is learning about the scenic spots in RP this week.”)

Why a TN? Children with ASD cannot talk much, if they talk at all. They can’t really tell you what went on in school or with the tutor.

I’ve kept all our TN. Every now and then, I leaf over them and read some entries. They take me back to a time when it seemed so much had to be done to help Gabriel and I always end up feeling thankful that we never gave up.

Beginning with 2-hour attendance at start of the school year, gradually adding an hour every week

All the years that Gabriel went to grade school and high school, we started with him going to class for only two hours the first two weeks of the school year. Then we added an hour every week. Just as you have to break down tasks into steps, it is important to do other difficult things in gradation. Six hours in school after a summer break is such a big chunk of time for a child with autism to handle on the first few days of school.

Holding a disability awareness session every year at school opening

Every year, I’d ask the new homeroom teacher (class adviser) to give me one hour in the morning to speak to the class. Gabe’s dad would take him to the donut shop while I was in his classroom. In that one hour, I’d tell his teachers and classmates things about Gabriel that I think he’d like them to know. I’d answer their questions (Why does Gabriel do this or do that?) I’d ask them questions. (What do you like about Gabriel?) I’d invite them to volunteer to be in my son’s Circle of Friends.

Making partners out of his teachers and tutors

We always stressed to the teachers and the tutors that we were a team, Gabriel’s team. We also included the principal, the school’s workers and the security guards. Do not antagonize any of these people. It is better to get them on your side, believe me. You have a very vulnerable child in their care. You need them to watch over him and be protective of him because you can’t always be there.

Whenever we needed to meet to discuss either problems or progress relating to Gabriel’s education, I’d always bring merienda for everybody. This is what you do with people whom you consider part of your family.

Taking advantage of “teachable moments”

We are all still learning, right? More so with our children. There are things that fall under the “must-know” list, such as, name, address, phone number, parents name, etc. Plus how to read signs like poison, enter, exit, men’s room, women’s room. These are the things that you need to teach first, and you need to review them every now and then because phone numbers change, people move and some signs become more complicated before they become simpler.

And then there are the other things that you will find you need to teach as your child is getting older. Even now, at his age, we still give Gabriel exercises on comprehension and communication.

Teaching him to mastery (errorless teaching)

Gabriel’s behavior therapists stressed this: If you’re going to teach a child with ASD something, it had better be right because as hard as it was for him to learn it, it would be even harder for him to unlearn something wrong.

Also, in teaching Gabriel, we didn’t stop teaching until he had mastered it. Pronouns, for example, are tough to teach to children with ASD (English pronouns are tough for Filipinos, too). So we taught each pronoun to mastery, which meant we didn’t stop until he was answering correctly 10 out of 10 times. We kept charts to monitor how he was doing with each skill. Once Gabriel has mastered something, he won’t forget it.

Of course, he has an unusually good memory, too. The other day, I was doing the crossword puzzle. It was asking for the name of Paul Bunyan’s ox, which I couldn’t for the life of me remember. So I asked Gabe. The ox is Babe, he said. He was right.


Allowing him to do what he enjoys doing

We’ve kept Gabriel engaged in something that he has fun doing. He likes painting, so he takes painting lessons every summer. Gabriel tried bowling, but he didn’t care much for it, as it turned out, so we stopped it. He enjoys swimming, so he has been taking swimming lessons, along with his dad (great for bonding). While I have yet to meet an autistic child who doesn’t like water, some children have all sorts of fear, so test the waters, as they say, before you insist on swimming lessons for your child. Make sure your swimming coach is a nice, patient person. Bert Lozada Swimming School has instructors who have special training on working with kids with disabilities.

Making the decision to take him wherever we go as a family

In my book, this is another must for parents of autistic children. After Gabriel was diagnosed with autism, we stopped taking him places because he was unbearably hyperactive. It was too inconvenient for us to deal with a kid like Gabriel at, for example, a restaurant where other diners were obviously irritated by a child who couldn’t sit still.

By leaving him at home, we didn’t have to worry about what he would do, didn’t have to apologize constantly for his behavior. But then, I always felt bad about leaving him at home and never enjoyed myself.

I talked to my husband and my daughter about how I felt and it turned out they felt the same way. So we agreed that from then on we’d take Gabriel wherever we had to go as a family. That was the only way he’d learn his social skills. We knew we couldn’t rehearse these things at home. If something untoward happened, then we apologized, we made up for it by paying if we had to, but we didn’t stop taking him.

Thanks to that family decision, Gabriel can now go to movies, join parties, ride an airplane -- go anywhere with us. We’ve been going to the movies once a week. For an autistic child, Gabe has been a ring bearer at an older cousin’s wedding, has watched plays on Broadway, has visited Disneyland and Disneyworld many times, has taken cruises, has traveled to Melbourne, Sydney, Thailand, Malaysia, Singapore, HK, and the US, specifically NY, Orlando, LA, SF and Sacramento.

Dressing him in the style the other guys his age are wearing

From haircut to shoes to backpack to shades to watch, Gabriel has always been “in.” He wears Adidas and Nike shirts and shoes. He wears straight leg jeans from Bench and Levis and Guess. His watch is a Swatch watch. He wears Rayban and Oakley shades. You don’t have to buy expensive brands. Just dress your child in the style other kids his age are wearing. Make him blend in. He’s already different, don’t make him stand out even more by dressing him in a shirt two sizes too small or too big.

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