When Does Self-Advocacy Begin?

This first appeared in a local Down syndrome support group newsletter in October 1997.

7-year-old Sheila discovering magnets © Nancy E Holroyd

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Parents make decisions every day.

Sometimes they are big decisions, like where the family is going to live and sometimes, they are small decisions, like what shoes will I wear today.

There are days when I would like to forget making any decisions.

How will this plan of action impact the plans that must be made in the future?

We see this with all of our children, but most especially with our children who have special needs. At times we can be overwhelmed by the number and type of decisions we need to make.

Decision making is not something that starts the day we gain our majority. The process of learning starts in childhood.

When we hold up two outfits and ask our toddler to choose one, we are helping our child learn how to make a decision. We might limit the range of possibilities when they are small, but it is a beginning. Just as we did this with Sheila’s typical siblings, we also did this with Sheila.

Sheila started learning to make up her own mind and then stick with the decision since she was small. Is it any surprise that sometimes she made a decision that was different from the one Forrest, and I made?

We worked with our district to keep her included in the regular classroom and to ride the same bus her sisters’ rode. A couple of years of riding the “big” bus, she had something else in mind.

Beginning early in December she started signing “little” and saying “bus”. We determined that she was trying to tell us that she wanted to ride the small bus, eventually it came out that the noise on the big bus was bothering her.

Since she was bothered by the noise, she would get down on the floor and then a couple of boys would kick her.

When she retaliated by hitting them, they would complain to the bus driver. The bus driver said nothing until I tried to find out what was going on, then he complained about Sheila’s behavior.

I talked with the principal and she in turned discussed the problem with the bus driver and the superintendent. I announced I would be keeping Sheila out of school until we could resolve the transportation problem.

The first day I kept her out I received a call from the principal. She wanted to have a meeting with Forrest, me, the superintendent, Sheila and herself.

Between the principal and superintendent, they came up with about seven different possible solutions, including putting Sheila on a small bus for a short while.

This was my least favorite choice, I felt we were being manipulated by a master! Since some of the suggestions were not easy to put into place immediately we finally decided that a temporary removal from the regular “big” bus was in order.

At this point the superintendent asked Sheila if she understood, Sheila indicated through gestures, signs and the word “bus” that she would be riding the little bus.

She was quite triumphant at the end of her gesticulating/signing/single word performance by raising one fist as high as she could, bringing it down rapidly and saying, “Yes!” (Hence, why I thought one young girl with Down syndrome managed to manipulate the four adults in the room.)

About a month later she went back to riding the regular bus with the development of “bus buddies”, some children who volunteered to help her and befriend her on the bus. They met with the principal on a regular basis. It worked well for the few months remaining in that school year.

As Sheila aged, I realized that we needed to start talking with her about her school needs and how they are being met. She needed to begin to have some input into what we were doing with her. She had been taught primarily in the regular classroom, although we did give them the go ahead for some pull out time.

It worked pretty well until the week I started getting daily calls about her behavior. Finally, one day I was called and asked to come and get her at 10:00 am. Seems she was being intractable, and no one was able to get anything done with her. I picked her up and called the pediatrician and made an appointment for the next day.

I then spoke with her special ed teacher about what seemed to be the problem. Sheila did not want to be in the classroom during language arts time. Since we had written in the plan some flexibility about pulling her out, Sheila was pulled one day a week for language arts in the resource room. Sheila decided that this was where she wanted to be every day for language arts.

We agreed that maybe it was time to listen to her. Once she was going to the resource room every day, her behavior settled down again, and she started making some gains in an area she had been struggling.

When does self-advocacy start?

Around that time in the mid 90s, we were hearing about self-advocates, older teens with Down syndrome. When does it start and how do we encourage it in our young people?

At her young age, I couldn’t know for certain what Sheila would be able to achieve in the future; however, I suspected she might not have the level of independence that some of our young people were demonstrating.

One thing I did know was that by the age of seven, with limited expressive language skills, Sheila was already beginning to advocate for herself. It was our job to encourage her in her self-advocacy.

Self-advocacy became a goal in all her subsequent IEPs (individual educational plans) and her Life Plans once she aged into adult services for people with disabilities.