Tuesday, July 28, 2009

There's No Place Like Our Time

I am delighted to introduce a dear friend of Our Time's, Dr. Nancy Crown. Dr. Crown is a clinical psychologist in private practice in Manhattan. She works with adults, adolescents and parents. Special areas of interest include deafness and developmental disabilities. Dr. Crown is Assistant Clinical Professor of Psychiatry at the Albert Einstein College of Medicine, and on the faculty of the Child and Adolescent Psychotherapy Training Program at the William Alanson White Institute and the Derner Institute at Adelphi University.
--Taro Alexander


There's No Place Like "Our Time"
by Dr. Nancy Crown

I first became aware of the Our Time Theatre Company when a close friend, (who is way high up on my list of admired parents), invited me to a benefit performance. As the mother of an adult child with developmental disabilities, I was powerfully moved by what I saw. The kids were so expressive, so honest and so proud. I wish there had been an “Our Time” for my daughter. No doubt, she would have benefitted greatly.

As a psychologist who has worked with children who are deaf and those who have developmental disabilities (or both) and their families, I was deeply impressed by the unique opportunity these kids had been given. I thought about all of the painful “side effects” of stuttering for children and for their families. Our Time identifies itself as a “home” for people who stutter. As I watched the kids up on stage performing, that is exactly what I saw—kids, who I imagine, must feel out of place much of the time-- feeling comfortable and positive about being themselves, feeling a sense of dignity. Speaking as both a mother and as a psychologist, that is a rare gift.

In preparation for writing this piece, I went to all of my usual sources; general and psychology data bases, a vast and unfailingly resourceful online community of psychologists, the website for the Stuttering Foundation of America, my daughter’s former speech therapist, even Google. I came up with very little addressing the emotional and psychological effects of stuttering. It may be my bias, but this strikes me as a critically important area for parents and professionals to be thinking about.

When you have a child who struggles, your heart breaks in a million different ways. You watch as their challenges negatively affect their self-esteem, their social functioning, and their academic performance. You witness them shrinking from activities they are capable of, but that will cause them embarrassment or frustration. You see how their personality has to wind itself in and around their difficulties, and how much this costs them in the way of spontaneity, confidence and joy. You see, or hear about your child being made fun of, ostracized, bullied, and becoming fearful, anxious, sad and angry. If the problem is one that interferes with self-expression, such as stuttering, the situation is aggravated by the difficulty communicating about it, which leads to further feelings of frustration, isolation and shame.

Shame and isolation feed off of one another, and both lower a person’s self-esteem. A child who stutters may begin to think of him or herself as “a stutterer” as opposed to a speaker (Linn & Caruso, 1998). Adults and children make countless decisions based on the fact that they stutter, and these decisions can affect everything from what they eat (because saying “hamburger”, for example, at the fast food counter is too hard), to whether or not they answer the telephone, pursue a relationship or apply for a job (MacQuarrie, 1999). Not only does this significantly affect the quality and direction of their lives, but it takes a tremendous toll on a person’s sense of self, sense of efficacy and of having control over his or her own life.

As any parent of a child with a difficulty will tell you, the social fall-out can be devastating. Children who stutter fear speaking in public, meeting new people, reading aloud-- any situation in which they might find themselves unable function smoothly. This leads to anxiety and avoidance, which, while not the cause of stuttering, can certainly worsen it (Rackl, 2000). Anxiety about speaking can lead to generalized social anxiety (Patraka Ginsberg, 2000), further limiting a child’s opportunities.

If a child’s stutter is not alleviated by the time they reach adolescence, most parents realize that while there are ways to help, this problem is probably not going away (Rackl, 2000), no matter how well you love your child or how hard you chase down solutions. Finding room to process what this means for you and for your child—for his or her future--while keeping your family on track, running interference at school, and not forgetting about your other children if you have them, is next to impossible. It is not uncommon for one parent to believe that pursuing everything under the sun is the answer, while the other parent thinks a wait-and-see approach is best. Single parents have a particularly lonely and difficult journey.

The relief that accompanies discovering a place where your child fits in is simply enormous. Meeting other parents who “get” what it is to have a child who struggles, people who have wrestled with this problem, wept over it, and who live it —this is invaluable. When your child is understood, accepted and belongs, countless critical needs are met. First, there is the reprieve for parents of knowing their child is part of something, and engaged in a constructive way with peers.

Socialization is a vital part of learning and development at every age. For a child who stutters, the opportunity to join a community of peers where he will not be made fun of, where she will be given as much time as necessary to say what is on her mind, where the child gets the clear message that what he or she has to say is important, this does more than merely provide invaluable socialization experiences. It also eases some of the injury sustained in the course of day to day life in the wider world. Involvement with others who stutter can reduce the loneliness and stigma. It can also be very helpful to share feelings, experiences and thoughts with others in a non-threatening environment. Openness about stuttering has been found to have a positive impact on relationships and self-esteem (Linn & Caruso, 1998) and enables the person who stutters to use fluency-enhancing strategies, such as slowing speech or pausing to restate muddled words in public. (MacQuarrie, 1999).

For someone who stutters, living in a world of people who don’t, results in constant comparison. This can lead to an over focus on the problem and a resulting devaluing of the self (Linn & Caruso, 1998). However, in a community like Our Time, where almost everyone stutters, dysfluent speech can become part of the background. Kids are given the opportunity to shine. They showcase talents, express strengths, feel recognized and appreciated for who they are. Their stutter is only one part of them. Further, and vitally important, is the opportunity to reverse the passive, out of control feeling of being someone saddled with a stutter by becoming someone who teaches others about stuttering and raises awareness. This is uniquely empowering.

I don’t know if it is true for children who stutter, but those with developmental disabilities and children who are deaf often do not have the opportunity to meet accomplished adult role models. The importance of meeting and interacting with others who have successfully dealt with the very issues you are facing cannot be overstated. Adults who stuttered as children and those who still stutter give children someone they admire with whom to identify. The very fact that these role models are leading full lives becomes a hedge against hopelessness and something to strive for that, perhaps for the first time, feels within reach.

Isn’t this what every parent wants for their child? That they learn to face their difficulties with grace and deal with them, find their strengths and pursue them, and do so in the context of meaningful relationships and experiences? We should all be so lucky to have a home like Our Time.

References

Linn, G. , & Caruso, A. (1998). Perspectives on the effects of stuttering on the formation and

maintenance of intimate relationships. Journal of Rehabilitation, Vol. 64.

MacQuarrie, B. (1999). The lonely battle of adult stutterers: Speech therapy may help, but

Most struggle alone with condition that has no ‘cure’. The Boston Globe, January 3.

Patraka Ginsberg, A. (2000). Shame, self-consciousness, locus of control, and perceptions

of stuttering among people who stutter. Journal of Genetic Psychology, December.

Rackl, L. (2000). Silent on the sidelines. Daily Herald, July 3.

3 comments:

riki said...

I am so happy to have stumbled upon this post! I was trying to go to the Camp Our Time blog when this site came up instead. Nancy Crown's piece moved me to tears. It is so powerful & highly affirming to read the intelligent insights of this mother & psychologist. Thank you, Dr. Crown. Thank you, Our Time, for the post. Thank you, Taro, for making the world a better place for young people who stutter ... each & every day. And thank you, Our Time kids, for your courage, your talents, and your willingness to share your hearts & minds with the world. You make us better people ... you rock!!!

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