As a special educator in both the private and public sector, I have spent many hours listening to parents gripe about the school system, medical field, and mental health professionals, especially when it comes to listening to parents speak on behalf of their child. Having respect for these fields does not excuse the way some of the professionals treat parents. Instead of listening to the child and his parents, considering their perspective, and becoming a partner in solving the situation, some professionals in these fields believe they know better than the parents.
I experienced my own version of this phenomenon many years ago. I raised my children in the 80s and 90s, when several of the diagnoses and medical conditions that are familiar today, had not yet been recognized. Being an educator, in the field of special education, I had first-hand knowledge of behaviors, symptoms, and manifestations of many disorders, disabilities, and learning problems. Therefore when one of my daughters exhibited behaviors such as poor organization of her belongings and her time, difficulty with the processes of math, forgetting to turn in completed assignments, low frustration levels, poor self-esteem, rushing through school assignments, unless she was greatly interested in the topic, easily angered, annoyed, or upset, and did not respond well to any motivator dangled in front of her, I suspected that she was suffering from ADHD. We took her to a recommended psychologist, who spoke to her and us, then decided that this was just her personality. He looked at her report cards, with kudos of great intelligence, curiosity, and excellent reading and writing skills, and deduced that we should work with her on organizational skills and get her a math tutor. We did both, but the problems continued. When we returned to the same psychologist the following year, he did diagnose her with depression and placed her on anti-depressants, as he felt that she was highly affected by a major illness in our immediate family. With the start of middle school, her grades fluctuated wildly depending on the time of year, how structured the teachers were, and how interested she was in the subject matter. But her self-esteem, especially at school, decreased even more. We took her to a new psychologist, who interviewed a more frustrated child and family. This time she did some formal testing, which showed a pre-disposition towards oppositional defiant behavior and mild depression, but no ADHD. We did not agree with the diagnosis, but did agree to try a different anti-depressant, thinking it might help. We were never sure that it did, and our daughter reported mixed feelings about its benefits. High school was a bumpy ride. Despite wonderful experiences in extra-curricular activities, subjects that she loved, and a good social niche, the original problems became more intense and trickier to deal with. More demanding organizational skills led to greater frustration, resulting in lower grades, even in subjects that she loved and could demonstrate solid knowledge. Poor grades meant she did not qualify for some extra-curricular activities, taking her out of the realm where she excelled. It became heart breaking for us, as parents, to watch her struggle in school and other aspects of her life. Upon graduation from high school, this very capable young lady was afraid to attend college, despite her intense love of learning. She did attend several post-secondary options for a short period of time, before deciding to quit and move into the work-world.
It was in the year 2000, when I attended a CHADD (Children and Adults with Attention Deficit/Hyperactivity Disorder) Conference and attended a workshop on ADHD in girls, that all my suspicions were confirmed. Comparisons with boys’ behaviors were the norm, until 1995, when researchers started investigative studies about girls’ manifestations of ADHD. It turns out that the medical and mental health professionals did not know that what they were seeing in my daughter, were typical signs of ADHD for girls. Parental guilt set in, thinking about all the things that could have been, the accommodations that could have supported her in school, the different structures that could have been put in place to help her succeed and build positive self-esteem, and the social punishments that could have been avoided, like ineligibility for extra-curricular programs. I began to read more on the subject and after much soul-searching, my husband and I decided to lay the guilt to rest and move on. Our first step was to have a long discussion with our daughter, apologizing for letting her down in this aspect of her upbringing, but letting her know that we would support her in the next steps she would take as an adult. She has found her niche in life as an independent young adult, though I feel that the scars of the past may still define some of her insecurities. Nevertheless, we are continuously proud of her personal and professional accomplishments, intense love of learning, caring for others, sense of humor, and loving relationships with friends and family.
This very personal experience has guided me in my professional life. I encourage parents to share their concerns with experts who are in the position to support their child; and to listen, but not to accept on blind faith that the medical doctor, psychologist, or educator has the total answer. Misdiagnosis is unfair to the child because she will not receive the correct treatment and it is also unfair to the parent, who now feels more frustration. The diagnosis should be a collaborative exercise, as part of a parent-child-professional team. If the professional is not willing to be part of the parent-child team, then perhaps it is time to find another professional. Parents know so much more than medical and educational specialists give them credit for.
When a child is struggling academically, socially, or emotionally, it is the parents’ responsibility to tirelessly navigate the procedures to get the necessary help. Though it can be hard to share personal hardships with friends and families, it is often these people who can share similar experiences, make good suggestions for useful strategies or recommendations for added resources. Finding a professional can be even harder, due to insurance limitations, finances, or time and location constraints. As parents, we are our child’s best advocates, and though we risk being titled a “helicopter” parent, it is our obligation to push until we find someone who will listen and partner with us to come up with viable solutions. Even with a diagnosis, the professionals should continue the relationship or refer to another professional who will establish a new relationship, while providing services or resources, and periodic evaluations of them. Our child’s self-esteem, desires to be the best, and ultimate success is in the hands of a good collaborative team, who can provide direction, supervision, and teamwork.
