One Mother's Story
Sam Goldstein, Ph.D.
This is a SamGoldstein.com Monthly Article - May, 2003
Copyright © 2003 Dr. Sam Goldstein - All Rights Reserved
I recently had the opportunity to speak in Santa Barbara, California on behalf of the Dyslexia Awareness Center, founded and operated by two wonderful people, Les and Joan Esposito. At this talk as at all my talks, I routinely invite parents to email their questions and stories. I was touched by Patti Gaultney’s story about her son Wesley and wanted to share it with my subscribers this month.
Wesley
Many in the system (legal, medical and educational) do not respect and value our children with learning differences. They are not routinely educated about their needs. They do not view these children as unique individuals with unique gifts. Many people, period, would rather not treat our children as full members of society. I have always tried to emphasize the positive and sing the praises of those very special angels who have touched my autistic son, Wesley, and our family in a very special way. And they are dear, dear people. I have prided myself on having non-adversarial Individualized Educational Program (IEP) meetings. For the most part Wesley’s IEP meetings tend to be non-adversarial and more recently effective. However, in the past, my son was very poorly treated and I did not speak out. I left the situation but I did not fight it. However, I now feel that it serves no purpose to keep silent about the injustices my son and our family have experienced.
Ten years ago, soon after Wesley’s diagnosis, he began to see a therapist who used Applied Behavioral Analysis (ABA). Using ABA, she and her group made tremendous progress with regards to Wesley’s behaviors. At the time, the local Regional Center offered no help except respite care. When Wes was around seven years old I requested speech therapy from the Regional Center. I was denied. I appealed. I was denied. The Executive Director at the time was so condescending that I swore I would never have anything to do with Center again. It is only within the last year that I have started using Regional Center services again, which continue to be minimal. Medical insurance has never paid for any therapies (speech, occupational, behavior) for my son classifying autism as a psychiatric condition as opposed to a neurological disorder.
At his elementary school, I had to beg to get him included. By the time he started Kindergarten he had spent 2 years at Head Start and 2 years in ABA and was continuing to see an ABA therapist during Kindergarten and 1st grade. His behavioral issues by this time were not severe. Although, the Kindergarten teacher thought he did wonderfully; when it came time to put him in 1st grade, the school argued that he should be in special education class all day. The only way I got him to be included even partially was to pay an outside expert to observe him and write a report to the school. At the time, I had a personal friend who taught at the school. When Wesley was assigned to Mrs. R’s 2nd grade class, my friend said Mrs. R came fuming into the teacher’s lounge saying “Damn, they put an autistic boy in my class.” She was really angry and she had not even met Wesley. Needless to say, we were met with resistance at every request with this teacher. We wanted to prep him for class the day before as suggested by experts we had consulted. Research had concluded that this would help him focus in on the material being presented. We were certainly prepared to go to the extra effort of prepping him for his class. Nevertheless, she refused to cooperate with that plan saying that she did not know ahead of time what she would be teaching. (I thought teachers had lesson plans!) I never asked for an aide or challenged the teacher. I honestly believe that Wesley could have made terrific progress during that year had we been allowed to implement the plan.
During third grade, Wesley became the victim of bullies. These boys told him they were his friends and he believed them. He was desperate for friends. One day he came home with a huge bruise on his back. It was plate size and very dark. I showed the principal and school nurse. They chalked it up to “boys will be boys.” He, also, had money, food and other things taken from him or conned out of him. Our complaints fell on deaf ears. But the worst incident was when I got a call from his third grade teacher telling me that during the time while the kids were waiting for the bus, one of the bullies, “M”, became annoyed with Wesley for asking him the same question over and over again. So he forced Wesley into the bathroom, stuck his head in the toilet, and flushed it. I was absolutely aghast but the next thing that came out of her mouth was even more disturbing; she asked if Wesley could please write a note to “M” to apologize for annoying him!! I was so dumbfounded I could hardly speak. I finally said, “I don’t think so,” and hung up. It was then that I knew we had to leave that school. We only had a few weeks left of school. I asked the principal how I could be assured of Wesley’s safety during the time between when school got out and the bus arrived. He told me that he thought Wesley should wait in the office until the school bus arrived. Not “M” but Wesley! The next time we spoke to the third grade teacher a couple of weeks later, she told us that Wesley would start to weep when it came time to leave the Special Education class and come to her class in the afternoon. Then she sort of tilted her head, and suddenly came out with this brilliant statement, “you know, maybe, I shouldn’t have “M” and Wesley sitting at the same table. Maybe that would help. And I guess I shouldn’t have had Wesley and “M” paired together when we went on that field trip.” My husband and I just looked at each other in total disbelief. I told her to just leave Wesley in special education class for the rest of the year.
As I look back on those years, I regret that I did not have stronger voice. But I was raised to respect authority and teachers. Challenging the system is not something that comes naturally to me. At the same time, I had a very powerful parental instinct to protect my child. The answer, in the past, to these two conflicting emotions was to flee the intolerable situation, which is what we did by moving to a new school district. And, also, to pay private providers for the educational services my child was entitled to. But over the years, little by little, my desire to protect and defend the rights of my child and others like him has overcome my desire to run away. My deepest desire is that I can continue to help serve children with special needs and those that love them in whatever way I can.
Postscript
Ms. Gaultney shared with me that Wesley recently received the Special Courage Award for his accomplishments in track. It was awarded to him at a local dinner by Olympian Carl Lewis. In March, 2001, Wesley as a sixth grader joined the Santa Barbara Youth Track Club. Though he struggled initially to understand the nature of this sport, within two weeks he participated in his first major track meet and won a silver medal in the 400 meter dash and placed fifth in the 200 meter dash. In 2002 he won twenty-two ribbons, including nine first places. Track and field has become an island of competence for this amazing young man. He and his family truly exemplify the power of parents and the role of protective factors in supporting youth at risk. In an effort to support and stimulate the development of a clinical psychology of resilience, Dr. Robert Brooks and I are editing a scientific volume bringing together the best and brightest minds in this field. Our volume titled, Handbook of Resilience in Children, will be published by Kluwer Press in the summer of 2004.
