Future Reflections         Fall 2009

(back) (contents) (next)


by Joan Guthrie Medlen, R.D., L.D.

Reprinted from <www.disabilitysolutions.com>.

From the Editor: Joan Guthrie Medlen is the mother of a son with Down syndrome and is a long-time advocate in the Down syndrome community. She can be reached at her Website, <www.downsyndromenutrition.com>.  Although this article is not specifically pertinent to advocacy for blind children, it addresses issues that can have a profound effect on any parent who fights for a child's rights in the special education system.

Living the life of a disability advocate can make the world seem like a very adversarial place. Of course, a lot depends on your experience. Most of the time, parents of children in early intervention services feel nurtured by their early childhood specialists. Everyone is concerned about the development and health of your baby and looks for the typical milestones along with you. Parents feel supported as specialists suggest strategies to keep the baby from sliding out of the high chair, to get up on all fours to crawl, or to sign his first word, "More," which everyone regrets later. I hear many parents describe early intervention services as a type of cocoon, protecting them from what lies just around the corner: school-aged services.

Over the years, I've had to advocate staunchly for my son. I remember walking into a "brainstorming meeting" to find it was a full-blown IEP review with no notice. Seventeen people sat around a table smiling pleasantly at me, reassuring me that there was nothing to worry about. My son was only five at the time. In those early years I was devastated after every meeting. I felt exhausted--as if one of the dementors from Harry Potter had sucked all but a last breath from me. In just a short time, "advocacy" became synonymous with anger and frustration.

Since then, I've learned that being an effective advocate for my son, who has significant disabilities, means having impenetrable skin. It also means not thinking of him as my son, or myself as his mother, at school or during the meetings. Rather, advocacy becomes a business deal from my perspective. I force myself to sit back and watch the interaction of the team, listen to comments, and then ask for the time I need to process the information. All must be done with as little emotion as possible. Sometimes I am more successful than others.

There are times when my feelings get the best of me and I am overwrought with anger, hurt, and resentment--every negative feeling we have words to describe and some we do not. It is easy, perhaps too easy, for parents to fall into a constant pattern of righteous indignation. One of the best things about the years Andy was included in elementary school was being able to spend time with other parents who were constructively involved with the school community rather than being surrounded by anger and frustration all the time. The school did not have a special education room. When Andy moved on to middle school, I cried when I met some of the parents in his homeroom, a visually based classroom. The first meeting I attended was filled with anger, bitterness, and blame. I felt like I was being poisoned.

How did this happen? I agree that more often than not parents have a lot to be frustrated and angry about. Constantly maneuvering to find someone who sees your child as a great kid (rather than being told all the things he can't do) is not easy. Living under the microscope of special education without feeling judged at some point is impossible. The "evaluation" is not limited to academics, school situations, or your child's strengths. Folks tend to want to know just what we are doing at home to teach our children.

I've been doing some reading on forgiveness over the past year. I am increasingly convinced it is the missing link in advocacy efforts. Not being able to forgive eats away at us and breeds bitterness. The injustice takes on a life of its own; it is all-consuming. It becomes a part of daily life. That means your adversary wins.

My first introduction to this concept came from the book How Good Do We Have to Be? by Harold Kushner. He tells the story of asking a woman whose husband had an affair, left her, and fell chronically behind in child support payments to forgive her husband. When asked how he could suggest such a thing, he replied, "I'm not asking you to forgive him because what he did wasn't so terrible; it was terrible. I'm suggesting that you forgive him because he doesn't deserve to have this power to turn you into a bitter, resentful woman." For me, that was a new spin on forgiving someone.

The last thing my children need is a bitter, resentful, angry mother, nor do I want to be that person. I enjoy life and like to revel in the good things, large and small. I love watching my children learn and grow, each at his or her own pace. I enjoy being helpful and looking for constructive solutions to overwhelming situations. I like to laugh. I want to be a nice, warmhearted person, not a sour, negative, cross one. I want to be able to walk into my son's school community and be the person I was before special education entered my life.

Like many people, I wondered if by forgiving people who have hurt me--whether it was intentional or not--I also am agreeing that nothing wrong happened. I have learned that this is not the case. I had to learn what forgiveness is, and what it is not. Here are some of the things I have learned.

Forgiveness is:

Forgiveness is not:

I believe forgiveness strengthens my ability to advocate effectively. When I let go of resentment and anger, people are more willing to talk and problem-solve. They are less likely to worry that the discussion will become a battle with an angry parent. Remember, forgiving someone does not mean they are not accountable for their actions. No one loses rights by forgiving an injustice.

Learning about forgiveness has given me a lot to think about. Have I truly forgiven every situation I am resentful over? No. But I am working on it. I am learning that it is harder to forgive those things that I have held onto for a long time--such as the IEP meeting I mentioned earlier--than events that are recent. Perhaps our response to a situation becomes so ingrained that changing how we feel about it takes time and work. After all, forgiveness is not meant to be easy, if done correctly.

These days I am not as easily upset in meetings about my son, though I have my moments. I am working on remembering to examine the situation, tease out the lessons, and then to work on forgiveness. It feels much healthier. And I am much happier for the work.

(back) (contents) (next)