by Dr. Jendia Grissett
If the jargon in the title did not confuse you, you are already ahead of many parents who are learning the special education or psychoeducational lingo this academic year. Midterms for the fall semester are looming, many parents and students are awaiting the results of their child’s evaluations. This screening process is a double-edged sword filled with anticipation, anxiety, hope, and fear. For those parents who are embarking on the journey with your child with a learning disability, you are not alone.
In 2001, my son was born healthy and happy. As he grew, we realized he had language impairment. At three years-of-age, he began receiving speech-language pathology services twice a week. He graduated from speech services and kindergarten on the same day. We were thrilled with the early invention and believed we are cruising the road to first-grade success. Throughout the first grade, he struggled with spelling and reading. I was beside myself. After all, I am a social worker and an educator with a doctoral degree. I had read to him since he was an infant, we did not use baby language in our home, and he was working on these skills each night.
With a great sense of despair and confusion, he spent the summer between first and second-grade completing psychoeducational testing. We were hopeful that after spending nearly $2,000.00 out-of-pocket for the evaluation, we would have answers. However, like most investigations, one must be ready to learn the results. Upon completion of the assessments, my husband and I met with the psychologist to hear the news. One week before second-grade was to begin, we learned that he had a very high verbal IQ with other scores demonstrating a significant gap in his academic ability. We learned that he has dyslexia and would need different instructional strategies to move forward academically.
In 2009, the Alabama State Board of Education did not recognize dyslexia as a specific learning disability. And, because he was not failing, there were no additional resources for him. I was in a further state of panic and felt inept to seek the appropriate level of assistance for my son. However, as I walked into his second-grade teacher’s classroom, I was met with the essence of calmness and direction. She had been one of the first teachers in Alabama to undergo the Alabama Reading Initiative training. She was able to provide me resources and bolstered my confidence in seeking resources. It was at this time that I learned of the Scottish Rite Dyslexia Training Program, which is akin to the Orton-Gillingham multisensory approach. I worked with him each night until he had completed the two-year program.
I continued to train myself to pre-teach and re-teach lessons using appropriate instructional strategies to assist him throughout this elementary and junior high school experiences. And, as time progressed, I taught him how to manage his studying and learning techniques and to become a self-advocate in high school. As he continued to be heavily involved in sports, he graduated high school, completed his freshman year of college with a 4.o, and now proudly serves as a United States Marine.
In sharing my family’s story, I have had the pleasure of talking to many parents who have received news that their child has a learning disability. In doing so, I have held onto their stories and reactions. Many of these stories carried the same issues. The five most common themes mirror Kerrie Delany’s 2017 study in Australia: grieving the loss of “normal,” fierce but reluctant warriors, navigating systems failures, the changing sense of self, and hope for the future.
As evident from the recounting of my family’s story, there is a tremendous sense of grief. Often families can recognize something is amiss, and seek answers to an invisible problem. And, in our academic culture, we approach learning disabilities through a medical model lens: evaluations inform families of what “needs fixing.” Inadequate resources deepen the sense of grief as parents experience self-blame and guilt (Findler, Jacoby, & Gabis, 2016).
Through their journey with their children, parents are learning as much as they can about their child’s learning disability. This knowledge becomes powerful as parents shift from grief to assertive advocate. In their stories of pioneering ways forward, one particular tale recounted in various ways. Often the student is denied access to the curriculum through labeling children as “unintelligent” or “lazy” (Thompson, Bacon & Auburn, 2015). This conflicting view of the learning disability, particularly dyslexia, leaves the parents feeling as if they must “fight” for their child. Initially, this “fight” is viewed by the educational system as “demanding”; however, over time, it develops into more positive and collaborative relationships (Damen, Veerman, Vermulst, Nieuwhoff, de Meyer, and Scholte, 2016).
Navigating systems failures and learning to adapt is very common. According to Poon-McBrayer & McBrayer (2014), systems failures have required parents to become advocates for their children. The faults within the educational system result in parents educating children at home and outside of school hours. In navigating systems failures, the importance of home-school relationships is apparent. A successful home-school relationship reduces the stress level of the parents and meets the unique learning needs of children within the mainstream school (Hedges & Gibbs, 2005).
Adaptation and change move parents toward personal growth and well-being, a changing sense of self. As parents can reframe their roles within their families, they can strengthen parenting competencies, which enhance their well-being as well as their children. As parents positively embrace the unexpected changes brought about by a learning disability, they can alter their role within their families, adjust personal life activities, and personal values (Damen et al., 2016).
And, finally, as parents realize their internal strength, they gain self-efficacy (Bandura & Locke, 2003). This newly found self-efficacy provides the foundation for hope for the future. Parents have made positive choices, and successfully problem solved to benefit their child. Parents now voice the expectations of positive outcomes and can find personal meaning in their experiences (Schermuly & Meyer, 2015).
As with any journey, each parent and each student experiences the process differently. This framework of themes is not meant to be exclusive nor sequential. I hope that each parent who has just begun the journey realizes that he or she is not alone. Reach out to other parents who are different destinations along the way. At the center of our initial parental response to discovering a learning disability, it is essential to remember this simple truth about our children:
“maybe “I’m having trouble” is not the same as “I can’t.”
― Lynda Mullaly Hunt, Fish In A Tree
As an addendum, I would be remiss if I failed to acknowledge the strides that have taken place in Alabama in regards to dyslexia. On April 8, 2015, the Alabama State Board of Education Dyslexia Resolution was unanimously adopted and set forth dyslexia amendments to the Alabama Administrative Code, defining dyslexia as a “learning challenge that is neurological in origin.” Further, the Alabama Reading Initiative and the Dyslexia Advisory Council have designed the Dyslexia Resource Guide and other resources for schools, teachers, administrators, and families to use in providing dyslexia-specific services and support for students in Alabama’s public schools.
References:
Bandura, A., & Locke, E. A. (2003). Negative self-efficacy and goal effects revisited. Journal of Applied Psychology, 88(1), 87–99. doi: 10.1037/0021-9010.88.1.87
Delany, K. (2017). The experience of parenting a child with dyslexia: An Australian perspective. Journal of Student Engagement: Education Matters, 7(1), 97–123.
Damen, H., Veerman, J. W., Vermulst, A. A., Nieuwhoff, R., Meyer, R. E. D., & Scholte, R. H. J. (2016). Parental Empowerment: Construct Validity and Reliability of a Dutch Empowerment Questionnaire (EMPO). Journal of Child and Family Studies, 26(2), 424–436. doi: 10.1007/s10826-016-0568-5
Findler, L., Jacoby, A. K., & Gabis, L. (2016). Subjective happiness among mothers of children with disabilities: The role of stress, attachment, guilt, and social support. Research in Developmental Disabilities, 55, 44–54. doi: 10.1016/j.ridd.2016.03.006
Hedges, H., & Gibbs, C. (2005). Preparation for Teacher-Parent Partnerships: A Practical Experience With a Family. Journal of Early Childhood Teacher Education, 26(2), 115–126. doi: 10.1080/10901020590955770
Hunt, L. M. (2019). Fish in a tree. Farmington Hills, Mich: Thorndike Press, a part of Gale, a Cengage Company.
Poon-Mcbrayer, K. F., & Mcbrayer, P. A. (2014). Plotting Confucian and disability rights paradigms on the advocacy–activism continuum: experiences of Chinese parents of children with dyslexia in Hong Kong. Cambridge Journal of Education, 44(1), 93–111. doi: 10.1080/0305764x.2013.860084
Schermuly, C. C., & Meyer, B. (2015). Good relationships at work: The effects of Leader-Member Exchange and Team-Member Exchange on psychological empowerment, emotional exhaustion, and depression. Journal of Organizational Behavior, 37(5), 673–691. doi: 10.1002/job.2060
Thompson, C., Bacon, A. M., & Auburn, T. (2015). Disabled or differently-enabled? Dyslexic identities in online forum postings. Disability & Society, 30(9), 1328–1344. doi: 10.1080/09687599.2015.1093460