Getting on With Life and Another Kind of Letting Go
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About the presenter: Adam Demello writes: I was born in Alaska, on September 7th 1988 and I have lived in Alaska all my life. I love sports, acting, and debating. I do all of those things around my city. I'm in Youth Court. I've done high school and community plays and I'm in my school's leadership class. I've been in speech therapy since second grade. I am now in the 8th grade at Kenai Middle School in Kenai, Alaska |
by Adam Demello from Alaska, USA |
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About the presenter: Louise B. Heite CCC/SLP, is speech pathologist for the Kenai Peninsula Borough School District, in Alaska. She received her training at Temple University, where she studied under Woody Starkweather. She has previously been a classroom teacher, an entrepreneur,and an archaeologist. Her interest in stuttering is both professional and personal. |
by Louise Heite from Alaska, USA |
Getting On With Life
by Adam Demello
from Alaska, USA
Growing up with stuttering has been very tough. I started speech therapy when I was in second grade. At first I thought it was kind of cool, but then kids started to tease me. I would get teased constantly. Some of my so-called friends would tease me too. I guess it was a way to make themselves feel big. I would go home and cry at night because I hated stuttering. I hated being looked at differently. All I wanted was to be "normal". I used to dream of waking up and not stuttering, but that's all it was; just a dream, one that would never come true. At school, I could barely hold back the tears from being humiliated in front of the class. It seemed so impossible to cope with it.
It felt like I was an outcast at school, at the store, everywhere. The only safe place in my eyes was my house, until my brothers found out how much stuttering bothered me. When I would come home from the torments of school, it would start all over again with my brothers. They always seemed to know just what to say to tear me apart.
I can remember at school I would try to say easier words so I wouldn't stutter, and so kids wouldn't tease me. And it wasn't just stuttering that I did this with, I also had the problem with my "r". I would say things like "wight" instead of "right". And on top of that I would stutter. It was terrible, especially when we had to start giving oral presentations in front of the class in fifth grade. I would go up to the front of the class, start stuttering, and say words like "wowld"(world). The teacher would make me say it again; I would try to slow down, but that never helped me. It just made me more nervous. I would stutter like crazy. Then the teacher would finally feel sorry for me and send me back to my chair. I could feel everyone's eyes on me. Oh, how I hated that feeling! Red faced, with all my self-esteem gone, I would go back to my group of friends that never, or very rarely, made fun of me. My friends, my speech therapist, and my parents were the ones who got me through the day. They never looked at me differently. My speech therapist would tell me to slow down. At first it would just make me feel funny so I would stutter more, but after awhile it finally started to help. Slowing down is really the only technique that honestly helped. What really hurt was that everybody else in speech therapy got out. I felt like I was in prison and everybody else had been released.
When I was in fifth grade, I started to think about how people's words affected me. I slowly started to realize that it didn't matter what others thought of me, or how I sounded, because that is what kept bringing me down. I started to realize that it only mattered what I thought because that is what affects me, affects how I live my life. The only way bullies could bully me was if I started to believe them. Then it could, and did affect me. Once I realized that, life started to get better! I could finally put myself above the people who teased me. That's when I decided that no matter what other people said to me, or no matter how people looked at me, I would always be optimistic. It was hard, terribly hard, but others could notice that what they said or did didn't bother me anymore. I started to make new friends. One even asked me why I was so optimistic. I guess the answer to that would be, I "got on with life". Suddenly the bullies almost stopped coming. I was really happy! The bullies had stopped winning. Now I was winning. Every once in a while a new bully will come along. What they say still hurts, but I just smile and walk away so they are the ones that are being laughed at. There are still those hard days that it really hurts when people tease me, but I think of my options and just think to myself, "I can be happy or I can be sad". For some reason it always seems to be better when I choose to be happy.
After I did that, I had more opportunities in my life. Now I love public speaking! I'm in a program called "Youth Court". It's a court for delinquent youth. I'm not a delinquent, but I defend or prosecute delinquent youth. A prosecutor is the lawyer who is representing the state, I like that more because everything is up to the prosecutor. The prosecutor can call the whole thing off, and drop all the charges, because he is the one that is bringing up the charges in the first place. I enjoy that a lot. I talk to a judge, and I get to debate, which I love. It is a lot of fun. I like telling people what they have done wrong. The only thing is that when I stutter, the judge just smiles at me, the defendant looks at me, and I get the same ugly feeling that I got when I was in fifth grade.
When I get that feeling, I just want to break down and cry, but the only thing in the court that I can do is take a deep breath, pause, and think about it. It usually works. On the times that it doesn't, I just totally stop and start over because I'm usually reading an important document. That always works.
I'm also in my school's leadership class. Now I host assemblies. I talk to 400 kids and adults at once. Now I love to talk to people. I love the rush that it gives me. I'm not afraid anymore. I do announcements in the morning over my school's intercom. I'm also involved in my church. I give talks to my 300 member congregation. And it's all because I made that one decision to change, that decision to not let what people say affect me. Now I'm happy, and I have people asking me how I "get on with life". The truth is that it all came from inside me, it was my decision to make and no one else's. It didn't matter what my teachers said, it was my decision. Last year I decided to take a break from speech therapy, and in my eyes it doesn't affect me like it would have five years ago. I can finally get on with life.
In my future, I would like to have a law career. I love being the prosecutor; I enjoy that burden of "proof". I like having a little control of things. Ever since I've made the decision to get on with life, I feel in control of my speech, and my future.
Another Kind of Letting Go
by Louise Heite
from Alaska, USA
Those of you who have read Adam DeMello's essay have doubtless noticed that he is presently "taking a break" from therapy. This section will deal with how and why he, his family, and I together decided to take the rather unusual step of suspending therapy for the immediate future.
I began working with Adam in the fall of 2001, when I took a job as speech therapist at Kenai Middle School in Kenai, Alaska. He impressed me right away with his open demeanor, his cheerfulness, and his willingness to work. More than that, he did not display any of the poor self-esteem that so often develops in young people around the age of puberty, particularly when they have an extra burden such as stuttering to try to integrate into their blossoming personalities.
Adam is a "moderately severe" stutterer, at least in terms of raw dysfluency count. However, he shows almost none of the physical tension or avoidance behaviors that usually plague people who are as dysfluent as he is. His stuttering consists almost entirely of open, unstruggled consonant-vowel syllables at the beginnings of words. He does avert eye gaze on occasion, but not often. In developmental terms, his stuttering resembles more nearly what one might find in a preschool child in the early stages of stuttering than what one might expect from an young teenager who has been stuttering most of his life.
Adam has been in speech therapy for a long time. He has described learning some therapy techniques that seem to be based on fluency shaping. He has expressed a preference for reduced rate of speech as a management mechanism. He has told me that he never avoids a word in a class discussion just to avoid stuttering, and his classroom teachers have confirmed that. In reference to his family background, he once laughingly referred to himself as "The Stuttering Hawaiian."
During therapy sessions, Adam did everything I asked. In an exercise designed to help him become aware of the details of his stuttering behaviors, he learned quickly to be aware of his articulatory postures and his eye gaze. He discovered that he could "head the stutter off at the pass," so to speak, by employing some stuttering management techniques, which were new to him. Like most people who encounter pseudostuttering for the first time, he found the idea of deliberately stuttering in order to diminish stuttering to be somewhat absurd, but he gave it a try anyhow. To his surprise, it did relieve some of the involuntary stuttering, but not as much as his reduced speech rate did.
Over the course of the year, it became increasingly clear to me that for Adam, his stuttering was a characteristic but not a problem -- at least, not enough of a problem that he wanted to take time from his busy and rich life to work on it. That is a very important distinction, which has some legal implications in the context of the Individualized Educational Plan (IEP).
The raft of Federal regulations that surround the IEP process require school staff to consider whether termination of therapy would do harm to the student. If we cannot document that the student's disability impacts either academic performance or social interactions in the school setting, the student may not be eligible for special education services, no matter how severe the disability. However, schools are required to make accommodations for students who have differences and disabilities but who do not necessarily qualify for special services, to enable them to perform to the best of their ability. Because Adam is an A-B student and holds positions of leadership among his peers, I had to consider carefully whether to dismiss him from therapy despite his stuttering, and to require accommodations instead.
As well-adjusted and self-directed as Adam is, it was evident to me that stuttering still held some threat to his future successes. He mentioned in his essay that the occasional bully can still hurt him, although he handles that occasional bullying with great aplomb. He still has some trouble maintaining eye gaze when he has a noticeable stuttering moment. The temptation to avoid words always lurks in the shadows. And, as any person who stutters knows, the severity of one's problem can vary greatly over the course of several years.
However, Adam wanted "out of jail," and I could not see any immediate reason not to grant him his "parole." Therefore, when his Individualized Educational Plan (IEP) conference came due in the Spring, I proposed to him and to his mother that he take a vacation from speech therapy. I outlined my concerns to both of them, but I also stated that for the time being at least, Adam did not seem to be very interested in pursuing therapy. In a team decision, we placed him on "monitoring" status, which retains his eligibility for speech services, but does not require him to visit the speech room on a regular basis. Nevertheless, if he should experience a setback, he can quickly return to direct services without having to go through all the paperwork that would be required if we had dismissed him outright.
I really wish that I could claim some credit for Adam's remarkable success in learning to deal with his stuttering and, as he has said it, "getting on with life." I can't. I have to take my hat off to his family, to his prior therapists, to the teachers who have recognized his talents and encouraged them, and most of all to a remarkable young man who has learned a lesson at a very young age that many people decades older than he is are still struggling to master.
August 20, 2002
