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Pure Friendship for Individuals with Special Needs
Janice Fialka
Special Education

Respecting Parents' Feelings in Special Education Planning: 8 Facts to Remember

I was sitting in one of those meetings where everyone wished they were someplace else. The fake smiles could not dissipate the thick fog of tension that impaired our vision. I, the parent of a child with disabilities, was being told that my son's dysfluency (I used to call it stuttering, but I've caught up with the jargon) had reached serious levels and needed immediate and intensive intervention. My husband and I believed the recommended intervention was inappropriate and might lead to an awkward self-consciousness for my son. As far as we could tell, he did not appear even remotely aware of his dysfluency. Our fear was that if we drew his attention to what we were learning to call his "bumpy speech," it would result in even more bumps and bruises to his ego. Our gut told us that the proposed intervention was too much for him. The upward curves to the glued-on smiles began to sag as the tension mounted. This, however, did not stop the team members from lecturing on their perspectives. The speech therapist even shook her finger in my husband’s face to emphasize her point. In a weak attempt to "stay cool," I allowed my eyes to wander around the classroom. I tried to distract myself from the tension by looking at the numerous posters decorating the walls. My eyes rested on one with the heading: "How are you feeling today?" I glanced at each illustration and stopped on the faces that fit my feelings: angry, hysterical, frustrated, hurt, disgusted, frightened, enraged, depressed, overwhelmed, lonely, surprised, anxious, and shocked. As I reviewed them again and again, I felt my body loosening just a bit. It helped me to acknowledge my intense feelings of the moment. It's not easy for parents to hear about their children's disabilities. Intellectually, we know we need to hear the information, but certainly it is not anything we look forward to. When unexpected or troubling information is shared, our unruly feelings invade our bodies and stab our hearts. Yet no one seems to be prepared to deal with the strong emotions. We just pretend that "they" aren't there or that "they" will go away soon. Feelings seem irrelevant and inappropriate to the content of the meeting. Professionals wonder judgmentally: "What do feelings have to do with setting goals for the child and reestablishing interventions? Let's get on with the 'real work.'" Guess what? Sometimes the real work is dealing with feelings. What would it be like if we were "good" at feelings? What would our team meetings be like? What would happen if we acknowledged that huge elephant in the room which everyone sees and no one speaks about? We would, at the very least, understand the following facts.

1. Feelings, especially strong ones, are to be expected during meetings.

Raising and educating children, especially children with disabilities, are among the most challenging adventures we adults face. If we are doing it well, both parents and professionals will experience strong emotional reactions, including intense feelings of fear, investment, care, responsibility, concern, protection, and commitment. Feelings arise in part because of our values, our past experiences, and current expectations. They need to be acknowledged and understood, not judged. Feelings can influence behavior, but feelings are not actions. They are not a result of a conscious and willful decision.

2. Feelings are not predictable, nor do they follow rules of logic.

Emotional reactions sweep over parents unexpectedly. Triggers for such strong responses can be as simple as a school display of children's art; the sight of a typically developing child at the school's entrance; planning for an in-school party; seeing one's child standing alone on the playground; or the off-handed use of a single word by a well-intentioned team member during a meeting. Suddenly, the feeling is there, unexpectedly, without an invitation.

3. Actual events and future possibilities mean different things to parents and professionals.

Something a professional might celebrate might trigger sadness or worry in a parent. I recall a school concert for which my son was asked to be the flag-bearer during several patriotic songs. His face beamed with pride as he strained to hold up the pole. At first, my husband and I were pleased with the important role he played. We were happy he had a meaningful role in the concert and that he was feeling a warm sense of accomplishment. Then, like a bolt of lightning, I was struck by the moving mouths of all the other fifth-graders. They sang all the songs and read all the music. l was rudely reminded of my son's limitations that prevented him from reading and remembering the words. There he stood, tall and proud, but with closed mouth out of which no song flowed. I saw his differences, and I saw him standing apart from his peers. And I wondered how we could all do more to ensure that he had a meaningful role at the concert. Did my feelings of love and pride for my son vanish? Absolutely not. But other feelings of sadness, uncertainty, and fear crept into the concert. I wondered if he would continue to find meaningful ways to participate. I wondered if his accepting peers of today would be as tolerant of him as they approached those difficult middle school years. It is usual for parents to anticipate future isolation or difficulty as they see their child with disabilities function within a typical peer setting. What seems wonderful to a teacher may be bittersweet, even troubling, for a parent. I am appreciative when professionals are alert to the presence of my feelings and respond with empathy.

4. Validation of feelings is a powerful strategy.

Validation occurs when the feeling is named or acknowledged: "This seems frustrating to you. Tell me more about that." The spirit of the acknowledgment is one of respect and understanding. It may be useful to ask for elaboration or clarification of the feeling: "How did you get to this feeling? Tell me a bit more about the worry." There should be no judgment of the feeling, as in, "You shouldn't feel angry; I was just trying to help." Note that validation does not imply agreement with the feeling. When you validate, you communicate that the feeling is genuine and understandable from a given perspective. Sometimes professionals seem to skip over a discussion or recognition of feelings, yet parents often report that they work best when professionals display compassion or support. Out-loud identification of feelings is one way to express compassion. Referring to my earlier description of the meeting at which no one wanted to be present, it would have been helpful if one of the professionals had offered some insight, as in, "It seems that we are at a standstill. Feelings are strong right now. What do you worry about the most? Help us understand what troubles you about this plan." Genuine inquiry and sensitivity to our worry would have allowed us as parents to voice and clarify our concerns and to feel the support of the professional.

5. Different people have different needs.

Sometimes, a brief acknowledgment of feelings will be sufficient. At other times, naming the feeling and talking a bit about it are important. Professionals can take their cues from the parent. It is useful to "listen" to a person's nonverbals as well as verbals.

6. It is not helpful to ignore tears.

It is normal and appropriate for a person to cry when feeling discomfort, worry, or sadness. Pause, offer the person a tissue, and wait a bit. It may be appropriate to lean toward the person or to inquire, "Can you tell me about the tears?" The professional can normalize the emotions: "This is hard stuff to experience. It is understandable that you'd cry or feel sad."

7. Feelings frighten us.

We all feel inexperienced around feelings. Although we all know what it's like to be the target of undeserved displays of emotion, we have had little training in how to deal with them. We received strong messages as children about ways to handle and not handle feelings. Thus it makes sense that we often avoid them, deny them, or just ignore them. But feelings can be our best friends. They let us know when something is brewing inside that needs attention or consideration. Strong feelings are often present when we care about someone or something.

8. Feelings can strengthen relationships.

When we respond to someone's feelings of grief, frustration, or fear with sensitivity, we create an opportunity to enhance the relationship. Think about a time when someone validated your strong feeling of sadness or joy. Their comment—their recognition—probably increased your sense of connection with that person. Feelings can lead us to insight and deeper understanding of what is really important. It is not enough to hang the poster "How are you feeling today?" in the classroom. If we want to be effective in our relationships, we need to take the question off the poster and use it in our conversations with ourselves and our partners.   What Matters by Janice Fialka[Adapted from What Matters: Reflections on Disability, Community, and Love by Janice Fialka, published by Inclusion Press, 2016.]

WRITTEN ON March 13, 2017 BY:

Janice Fialka