Updated: Mar 3
by Michelle Niedens
Emily Dickinson wrote a poem that has framed much of my life. On the whole, her poems have never been among my favorites, but, for me, this one articulated a message that I know to be true, even when there is a gap between what we expect and what occurs, even when losses are sustained and even when we are unsure of what is ahead.
“Hope”, she writes, “is the thing with feathers - That perches in the soul - And sings the tune without the words -And never stops - at all.” When my son was in the 4th grade, he decided he was going to play clarinet. He would sit and polish his instrument; he would practice to the best of his ability and was undaunted by those who conquered the necessary process quickly. His band teacher told me that she had never seen anyone want to play the clarinet as much as he did. She went on to say, however, that the school music program had a pace by which students must learn and that his more tedious pace could not be obliged. He took private lessons. He started to play the cello. Eventually we figured out something we should have concluded long before.
He needed someone who had what he had – the ability to listen to that wordless tune in the soul. Rather than music teachers, we engaged a music therapist. That partnership has given him more than an ability to make music. It has provided a language of sharing, of confidence and one of the strongest coping strategies in his toolbox.
For me, that experience affirmed a set of key questions. These questions avoid an inconclusive and limiting verdict as to whether someone can or can’t. Rather, key questions are about recognizing sustained desire, understanding barriers, and defining the resources that can test adaptions and strategies that overcome the barriers. Interest is one thing, desire is another. Desire can serve as a motivator and move to an action.
My son, like so many young people with or without a developmental disability, wanted to attend college. Classroom lectures, however, went too fast. As his mind would attempt to grab on to a concept, others flew by him or were left behind when additional information was discussed. The barrier really was that he couldn’t get all the pieces only listening to the lecture once. Another barrier was organizing important notes and information. 2-hour tests were too long. Trying to take 3 classes at a time proved too much. But that thing with feathers persevered. We learned that online classes were better for him. He could listen to the lecture as many times as he needed. Instructions for assignments and checklists when turned in were simply part of the class set up. We incorporated tutors. The college access office advised useful accommodations such as breaking up a test into 3 parts over several days. After five years, he finished a program in interior design. The significance of that accomplishment was as tangible as water in an ocean. Not because of what he had done or would do, but because of what he felt.
“Hope is the thing with feathers - That perches in the soul - And sings the tune without the words -And never stops - at all.” Whether it be him, or me, or you, or a person you love that has an intellectual/developmental disability, it is a knowing there is path, there can be peace and that something new or to be understood is just around the corner.