Self-determination in a nutshell

Self-determination has been defined as “acting as the primary causal agent in one’s life and making choices and decisions regarding one’s quality of life, free from undue external influence or interference” (Wehmeyer, 1992).

Many individuals with severe disabilities have little say in basic life events. They don’t get to choose where and who they stay with or what and where they eat. A majority of them are unemployed and poor. They seldom participate in leisure activities. They have few or no friends. They are not part of any social networks. A life of no choices, no friends, no financial stability, no job satisfaction, no fun, and no quality of life. If you think about it, this is one very sad life to live.

And that’s where self-determination comes in. Self-determination is a contemporary best practice in instruction of individuals with severe disabilities because it emphasizes teaching these individuals skills to be self-determined. It involves teaching choice-making, decision-making, and problem-solving skills. It involves supporting the individuals to be as independent as they can be. It involves providing supports so that they can initiate and complete a task without relying on others to do it for them. It doesn’t mean having them do everything on their own, it just means providing them the skills and supports to experience a satisfactory life.

I guess an analogy would be a baby who is learning to walk. A wise parent would hold out a hand and provide just enough support so that the baby can do baby-steps across the room to where s/he wants to go. An unwise parent would carry the baby everywhere and baby does not learn to walk and does not get to go where s/he wants to go. An uncaring parent would leave the baby on the floor. An individual with severe disabilities is like a baby who will never walk on their own.

So like everything else in this world, self-determination does not take place independent of the community. Unfortunately, it is easy to ignore those who are weak.

Inclusion in a nutshell

Inclusion is a term used to describe the ideology that each child, to the maximum extent appropriate, should be educated in the school and classroom he or she would otherwise attend. It involves bringing support services to the child (rather than moving the child to the services) and requires only that the child will benefit from being in the class (rather than having to keep up with the other students)(Council of Exceptional Children)

Inclusion is actually not a contemporary practice. For years and years, advocates for children with disabilities have been pushing for inclusion. Although the Individuals with Disabilities Education Act does not specifically say inclusion, it says that children with disabilities should be educated in the least restrictive environment (LRE). For some kids, LRE would mean the general education classroom with normal kids. And for other kids, LRE might mean spending their school day in a combination of general education and special education classrooms. And for some other kids, LRE might mean the whole day in special education classrooms.

That sounds fine and dandy. Unfortunately, even in the “progressive” USA, more and more kids are not being included in general education classrooms. Many kids with disabilities spend their whole day in special education classroom with no social contact with normal kids. I’ve observed emotional support classroom for children with behavior problems, and these kids even spend their lunch-time and recess away from normal kids. This has come to a point where a group of parents in Pennsylvania has filed a class action lawsuit against the Dept of Education for violating the rights of children with disabilities to LRE. So, although inclusion is not new, it has not become a reality for many children with disabilities.

Inclusion is also an idealism that I’ll have to leave behind when I return to Malaysia.

The grass is not always greener

I remember the days I was back in Malaysia and I would read about special education in the United States. I looked through the very thick Individuals with Disabilities Education Act (IDEA) documents. I read numerous books about the intensive Applied Behavioral Analysis (ABA) programs for children with autism. I read about the extensive funding and services individuals with disabilities receive. It almost seemed like the United States is a nirwana for individuals with disabilities.

But now that I’m in the United States and I’ve observed in special education classrooms, both at the elementary and high school levels, and I’ve seen programs for adults with disabilities, I realized the grass is not always greener. While there exist strong special education and disabilities laws that require certain things to be done, there also exist a higher moral law where accountability is a big issue.

I’ve seen children with emotional behavioral disorders in a room filled with adult helpers and yet not much teaching and learning takes place. I’ve seen high school special education classrooms where the students listened to their iPods while the teacher was leading a discussion on “current events”. And a current event could be last night’s wrestling match on TV.

Maybe I’m only seeing some of the worst case scenarios. But it does make me reflect on some of my former students in Malaysia, I wonder if they would do any better if they were in the same classrooms that I’ve observed here. Although back home, teachers without the special ed degrees struggled to teach the special kids, at least they were trying. When I see a special ed classroom that’s not functioning well here, it is very disturbing to me.

I wonder if the effects of
Law - Human Element = Human Element - Law?

“Belimbing, tembikai, betik”: What do I teach next?

In my first job as a special education teacher at the House, they already have an established program, so I only had to do what I am told. When I moved on to the Society, I was working at the vocational center and there was not much teaching going on. Most of the time, the students were packing drinking straws, and I had to make sure that the products were of acceptable quality and that the students were being watched over. Then I started my first real job as a special education teacher at the Center, and that was where my troubles began.

The Center was started because some parents were not satisfied with the education their children with Down syndrome were receiving at the special education classrooms in national schools. The purpose of the Center was to enhance/supplement the education of the students. The Center was functioning more as a tuition center rather than a full-fledged school. The students were coming in for three hours, twice or three times a week. The students were of varying elementary ages and functioning levels.

When I started as the head teacher at the Center, I was in charge of everything-from teaching, acquiring teaching resources (making, modifying, searching and buying), and even collecting school fees from the parents. However, my biggest problem was that I did not know what to teach. There was not a curriculum in place that I could follow. Although the Center had a copy of an early intervention program, most of my students had already outgrown that. The center had an individual education plan (IEP) for each student, unfortunately the IEPs were the cut-and–paste sort, with no appropriate goals or behavioral objectives that I could work towards.

So the program that I developed and stuck with was that each month, the assistant teacher taught a theme (e.g. fruits, vegetables, types of emergency services, types of automobiles, etc) and one/several concepts (e.g., up-down, left-right, front-back, etc). There was a new theme and a new concept each month. The assistant teacher also taught some basic mathematics. While I worked one-on-one with the students: teaching reading in Bahasa Melayu or the alphabets (depending on the student), and also working on cognitive and fine motor skills. Both of us worked on gross motor skills together.

Unfortunately (or fortunately), some of students progressed faster and us, teachers, were not able to keep up with them. Some of the students learned the theme and concepts in one week, while others did not manage to grasp the lessons even at the end of the month. Before the end of each month, I had to come up with a new theme and concepts for the next month, make the teaching materials and work on homework sheets. After close to a year, I ran out of themes and concepts because we have gone through most of the common things around us. At one time, I wanted to modify the national curriculum for my class but when I looked at the different textbooks, it was overwhelming, and I did not know where to start.

Now that I know more, what would I have done differently?

a) I now realized the importance of a curriculum to tie everything together. I would insist that the administrator and the consultant provide a good curriculum. Even if it means to modify the national curriculum, time and resources should be allocated for the teachers to work on modifying the curriculum.
b) The consultant, teachers, and respective parents should come together and write up a workable IEP for each student. The IEP does not have to be an extensive document, but just several appropriate and realistic goals for the student. (A topic for a another day)
c) Instead of working one-on-one for reading, I would separate the students into two groups. The advance group would work on reading in Bahasa Melayu, while the basic group would work on the alphabets. (A topic for another day)
d) Instead of whole group instruction for mathematics, I would separate the students into two groups. The advance group would work on addition and subtraction, while the basic group would work on basic number skills.
e) I would also like to include a stronger element of lifeskills and social skills in the curriculum.

Catch them being good

I was the lead teacher at the Center for one and half years. With the help of an assistant teacher, everyday from Monday to Friday, we taught six children with Down syndrome. The children ages range from 4 to 9 years old. Since there were “only” six children in the classroom, we pretty much have the classroom under tight behavior control. There were unwritten rules and routines to everything that went on in the classroom. Some days, things went well in the class. Other days, I spent the entire journey home from the Center wondering what I did wrong or what I could have done differently. It was tough making sure that the students behaved appropriately in class:
a) Ensuring that they did not roll around on the floor when they should be sitting on a chair,
b) Ensuring that the students were lined up properly before going to the restroom to wash their hands before and after snack time,
c) Ensuring that they did not snatch one another’s snack,
d) Ensuring that they did not push or hit one another,
e) Ensuring that they shared the toys,
f) Ensuring a multitude of other things.

Looking back, I realized I had absolutely no training in classroom management. The classroom was under control because it was relatively small. I would also liked to believe that I built up a rapport with my students. And it was this rapport that smoothed things out in the classroom. I hoped it was because I gave them plenty of attention, so that they did not have to resort to problem behaviors to gain my attention. I hoped it was because the activities in the class were fun, so they did not have to resort to problem behaviors to escape the activities.

Even so, now that I know a little more, there are many things I could have done differently. However, if there is one intervention that I wish I had put in place at the Center, it is school-wide positive behavior support (SWPBS).

SWPBS emphasizes a proactive approach to school discipline and supporting students in schools. The SWPBS practices that I would have liked to implement at the Center are:

1) Define schoolwide behavioral expectations

I never explicitly taught my students what the expected behaviors were in the classroom. When they misbehaved, I would tell them what they did wrong. When they behaved appropriately, I may occasionally praise them. My expectations were for them behave appropriately in class. I just assumed that they knew my expectations, but I never told them what the appropriate behaviors were.

SWPBS recommends that behavioral expectations be written and posted throughout the school. The behavioral expectations should also be written in the positively. For example, Be Safe, Be Respectful, Be Responsible. The children are then taught these three expectations and to memorized them.

2) Teach the behavioral expectations

In terms of teaching appropriate social skills, I failed miserably. It is probably because I had no idea how to teach social skills. It always seemed to me that children learn social skills by observing the adults around them. This may be true, but some children require more concrete instruction and practice to learn these skills.

With the three behavioral expectations, the children are then taught the behavioral expectations in different settings in the school. For example, Be Responsible in the classroom may be putting shoes and bags in the proper place, while Be Responsible in the restroom may be turning off the tap.

3) Monitor and encourage performance of expected behaviors

As for praising my students for behaving appropriately, I doubt I did enough of that. Just like most teachers, I probably paid more attention to inappropriate behavior, and did not catch my students behaving appropriately.

After teaching the students the behavioral expectations and modeling to them what each expectation looked like in different setting, I would also liked to implement a chart on the wall to monitor the students’ behaviors. For example, a student will earn a sticker for putting his/her shoes away. There will be a list of appropriate behaviors that will earn stickers. At the end of the day, the stickers will be added up for a bigger reward (e.g., snacks, extra play time, good behavior certificates, etc).

There is a lot of work involved in implementing SWPBS, but once it is in placed, the school environment is much more positive and pleasant. In many ways, it is the teachers’ behaviors that change in SWPBS. Teachers are required to start noticing and praising students being good. This may be harder to do then one might think. Often times it is easier to criticize then to praise.

Buzzword for this intervention:
Schoolwide Positive Behavior Support (SWPBS)

Fighting over food

Kit was a 5-year-old child with autism who went to the House. Kit was very picky about food, due in part to the nature of autism (where change can be difficult) and the fact that Kit’s mom was a Japanese and he grew up eating Japanese-style food and not to the usual Malaysian fare. When unusual food was placed before him, Kit would throw a major temper tantrum. The House was insistent that Kit learned to eat various types of food. So during lunch, another teacher would be in charge of making sure Kit ate what was set before him. Since his mom usually packed lunch for him, usually Kit would have no problems with his food. However, when he sensed that something was not right with his food, he would throw a major tantrum. Because of the House’s policy, many times a piece of the undesired food was placed in his mouth, Kit would refuse to eat and swallow it but the teacher would not allow Kit to spit it out. The battle over that one piece of food would last through lunch and sometimes till afternoon lessons began. Kit would continue to hold that piece of food during lessons, and of course, he could not concentrate on his lessons at all during those times.

These food fights were happening too often. It was a very stressful time for both teachers and students. In the end, both parties lost. Precious time was spent on fighting a losing battle. Kit’s tantrums during meal times did not decrease, many a times, afternoon lessons were unfruitful, and teachers were very stressed out.

Kit’s parents had experienced times when they went out to a restaurant for dinner together, and Kit would freak out when some strange food was brought to their table. That caused tremendous embarassment to his parents and his parents were very reluctant to bring Kit out for meals together. So I do understand the House for trying to get Kit to eat as many different types of food as possible, but there is a better solution.

What would I do differently now?

Kit was a strong and healthy boy for his age. He was not malnourished, in fact, he was taller than most kids his age. Most people have some type of food that they absolutely hate, and no form of praise or force could make them eat it. And that is OK. So Kit is entitled to reject foods that he does not want (since his health has not been affected by his choices) and the teachers have no right to force him to eat anything.

Even without a functional behavioral assessment, it was obvious that Kit’s temper tantrums, both in the House and the restaurants, had an escape function. He was using his temper tantrums to avoid having to eat the undesired food items. So Kit should be taught a more appropriate and efficient form of escape. He could be taught to indicate that he did not want something, by either shaking his head or maybe by pushing the undesired food to the side. Since nutrition was not a problem here, the parents and teachers would have to respect Kit’s wishes and not force it down his throat. When Kit learns to communicate his wishes appropriately, and when the adults learn to listen and respect his wishes, I am sure meal times would be more pleasant for everyone.

I have learned since then to carefully pick and only fight battles that I know I can win (Sun Tzu’s Art of War), and fighting over food is a losing battle. Ultimately, it is his mouth and his decision to swallow the food. And as a teacher, you can only go so far as to persuade a child to do that, anything more would be abusive.

Buzzwords for this intervention:
Functional communication training (FCT)
Self-determination

What Michael taught me

I met Michael when I was working at the House. He has severe mental retardation, non-verbal, and has few self-care skills. The curriculum at the House has few things to offer Michael. Michael was relatively problem-free since he was contented just watching others, and because of that he really doesn’t do much at the House.

I think of all the students that have crossed my path, Michael is probably the one who has taught me the most about respect and love for an individual with disability. The House then was using aversives to “teach” the students and after being there for some time, that got to me. One time when I was with Michael helping him put on his shoes, he was slow as usual, and I don’t know what came over me but I gave him a light slap on his face and he was shocked by that. At that time, I justified the act that the students need some stimulus to “awaken” them. But I knew what I did was wrong and that act still haunts me. Noone deserves to be treated that way, I would never do that to my nieces or nephews, I would not even do that to a cat or a dog, so why did I think I could do that to Michael?

That’s not the only lesson that Michael taught me. The teachers would take the students out to the community for lunch once a week. And there I was taking care of Michael and another student at a food court. Michael just had his lunch and he was quite a mess. All of a sudden a very smiley man came over with two of his friends and I was perplexed seeing this man approaching my table. Then he carried Michael in his arms and declared proudly to his friends,”This is my son!” and then he affectionately embraced his messy son. I realized then if an earthly father could love his disabled son with all his “imperfections” so very much, our Heavenly Father loves Michael and all my students with disabilities even more. And that has been my guide towards being a better special education teacher, and more importantly, a better person.

So that’s what Michael taught me.