Journal of Psychosocial Nursing and Mental Health Services

Youth in Mind 

Who Will Help My Son?: A Family's Journey with Dyslexia

Jacqueline DeBrew, PhD, MSN, RN

Abstract

It may seem unusual for a nurse to intervene and assist a child with a learning disability, but a mental health nurse who knows the warning signs of dyslexia is able to help families who are going through a difficult time. The current article details the author's experience regarding her son's dyslexia diagnosis. For her family, a nurse was a valuable resource. The impact the struggle had not only on her son, but also her family, and the changes brought about by getting a diagnosis and treatment, demonstrate the impact that nurses can have when family-focused care is provided. [Journal of Psychosocial Nursing and Mental Health Services, 55(8), 27–30.]

Abstract

It may seem unusual for a nurse to intervene and assist a child with a learning disability, but a mental health nurse who knows the warning signs of dyslexia is able to help families who are going through a difficult time. The current article details the author's experience regarding her son's dyslexia diagnosis. For her family, a nurse was a valuable resource. The impact the struggle had not only on her son, but also her family, and the changes brought about by getting a diagnosis and treatment, demonstrate the impact that nurses can have when family-focused care is provided. [Journal of Psychosocial Nursing and Mental Health Services, 55(8), 27–30.]

Addressing psychiatric and psychosocial issues related to children and adolescents

Several years ago, my 10-year-old announced that it was time to get rid of the “baby books” from his room. After all, a fifth grader should never be caught with books like Chugga-Chugga Choo-Choo (Lewis, 1999) stacked beside Diary of a Wimpy Kid (Kinney, 2007). Of course, I obliged to avoid his potential humiliation. As we sat on the floor of his bedroom and pulled books from his shelves, I was surprised at the emotions I felt. My son has dyslexia. He was diagnosed at age 8. Before his diagnosis, we both knew that something was wrong, but we didn't know what. The journey to diagnosis was difficult and challenging, but I found support and advocacy in a surprising resource: a nurse.

Being a nurse myself, I thought dyslexia was an educational issue only. However, the physical complaints that my child had as a result of the dyslexia led to my consultation with a fellow nurse, who helped steer us in the right direction toward diagnosis and treatment. Engaging medical professionals in the care of my son helped get a treatment plan implemented and interventions started. All nurses, particularly mental health nurses, can play an important role in supporting children and parents who are undergoing this journey.

What Is Dyslexia?

Dyslexia, simply defined, is difficulty reading; it is a language processing disorder characterized by difficulties with word recognition, decoding, and spelling. It is a neurological condition that causes difficulty of the brain in interpreting sounds. These difficulties occur despite normal intelligence and proper instruction. Contrary to popular belief, it is not seeing words and letters backwards (National Center for Learning Disabilities, 2013).

There is a lack of consensus on how to define dyslexia. Siegel (2006) believes the disagreement arises because of the variability of the disorder, as well as a lack of diagnostic agreement. The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (American Psychiatric Association, 2013) does not include dyslexia as a diagnosis, but rather uses an umbrella term, Specific Learning Disorder, which includes specifiers describing the academic domains of impairment. Educators often refrain from using the term “dyslexia,” stating it is too broad and does not focus on the actual problem. Yet, both the Individuals with Disabilities Education Act (IDEA) and the Code of Federal Regulations for Public Education name dyslexia as an example of a learning disability (Youman & Mather, 2013).

A Family's Journey

When I sought professional help for my son's reading difficulties, the question I was asked was always the same: Do you read with him? When I explained that I had always read with him, and he loved being read to, I was given the suggestion to try different books for him—rhyming books, books with prepositions in them, graphic novels, non-fiction, fiction, leveled readers. You name it, we tried it. Hence, the reason we had to clean off his book-shelf years later. Each book represented a psychologist's, teacher's, or specialist's suggestion on how to get my son to read. What I eventually understood, but none of the “experts” seemed to understand, was that my son's reading difficulties did not come from a lack of desire or interest in reading, but from a neurological disorder that had not been addressed. No amount of bribing or searching for the right book was going to make him read. He was physiologically unable to read with the traditional methods being used to teach him.

Feeling ignored by teachers, I knew I had to pursue this journey alone. The path to diagnosis is difficult and costly to navigate. One reason it is difficult is because there is no single test that can be given to diagnose dyslexia. After searching the internet, I decided that we would first visit a psychologist for the traditional psycho-educational testing. This testing would give an indication of a learning disability. I learned later, however, that with the traditional differential testing method, a ≥15-point discrepancy between IQ score and achievement score indicates that a learning disability exists, yet fails to identify the type (University of Michigan, n.d.). Furthermore, I also learned that IQ testing is not always accurate in children with dyslexia because it measures skills that are deficient, such as vocabulary and verbal memory. Although IQ testing may not be valid in children with dyslexia, some public school systems require that it be the first step toward a child receiving specialized services (Siegel, 2006). Schools are required to provide this testing at no cost; however, the wait can be long and many parents choose to have their children tested privately, which is costly if insurance does not cover the testing.

My son's psychological testing revealed an above-average IQ with very high scores in some areas and very low scores in others, such as working memory. Poor working memory is common in individuals with dyslexia and a major contributor to their reading difficulties as well as other academic difficulties (Jeffries & Everatt, 2004). My son did not present with the discrepancy between IQ and achievement, yet some subsets were so low that I knew the findings meant something. Unfortunately, the psychologist only looked at the overall scores, and not the individual tests, and said my son was fine.

The next year was spent perusing the internet, getting second opinions, and arranging tutoring for my son. School became a huge struggle for us during this time. School anxiety, homework struggles, and physical complaints became daily occurrences. My son's teacher told me that he was very “sweet” and “well behaved” and that she had other students with “real” problems to deal with. She also told my son that his mother “worried too much.” My son was aware that he struggled more than the other children in his class. He began school saying, “I don't know why this is so hard. I'm much smarter than the other kids.” However, that soon became, “I guess I'm just dumb. Everyone is smarter than me.” Because the psychosomatic complaints occurred so frequently, I consulted with a fellow nurse, who worked in mental health. She was the first to propose that these issues were the result of a learning disability and offer suggestions on the steps of diagnosis. The nurse was also the first professional who listened to me and did not make me feel like these issues were somehow the result of poor parenting. I believed that she was “on my side,” which I had not experienced in encounters with other professionals. The nurse recognized that my son's physical complaints were real and warranted further investigation. She suggested we visit a pediatric neurologist for a more thorough investigation of my son's headaches, and finally, we were on the road to help.

Children who are poor readers are more likely to experience other mental health issues that, if not addressed, can continue into adulthood. Eissa (2010) found that adolescents with dyslexia felt different from their peers and were more likely to deal with depression, anxiety, and feelings of aggression than other teenagers. These findings support the need for a collaborative approach to caring for children who are newly diagnosed with dyslexia and their families. Yates (2013) examined the relationship between dyslexia and drug abuse by interviewing clients in a drug rehabilitation program and screening them for dyslexia. Although the sample was small, Yates (2013) found that the prevalence of dyslexia in this population (40%) was twice as high as the occurrence in the general population. Although more research is needed, Yates (2013) asserts that there is a connection between a dyslexia diagnosis and drug-dependent behaviors. Furthermore, he found that participants in rehabilitation who were found to have dyslexia also reported more serious drug offenses and more psychological issues than participants without dyslexia (Yates, 2013).

What Can Mental Health Nurses Do?

This particular nurse was so receptive to my family because she also had a child who dealt with a learning disability while in school. Her personal experience prepared her to look beyond physical complaints of patients and become a more holistic practitioner. Not all nurses will have had personal encounters with learning disabilities, but nurses who are knowledgeable about common learning disabilities, such as dyslexia, are equipped to help struggling families when school issues arise. Educating oneself on the common warning signs of dyslexia and treatment steps is one way to provide support and advocacy. The nurse who helped my son was clued into the possibility of dyslexia when he told her that his head hurt after reading, math, and other taxing efforts, but not after watching television or doing some enjoyable activity that might also result in eye strain.

The Yale Center for Dyslexia and Creativity (2017) provides guidance on typical signs of dyslexia in children, teenagers, and adults. Pre-schoolers often have trouble memorizing the alphabet as well as difficulty reciting common nursery rhymes. My son, when tested, was unable to recall any rhyming words, which his pre-school teacher attributed to being “an uninterested boy.” When reading instruction begins, children with dyslexia are unable to sound out words and begin to rely solely on context clues, such as pictures, to read (Yale Center for Dyslexia and Creativity, 2017). For example, my son might read the word “locomotive” as “train” because he was guessing at the word based on the picture provided.

As school becomes more complex, difficulties are shown in spelling, punctuation, and handwriting. Furthermore, completing work on time becomes a struggle, and these children may find that they need more time for tests and other written assignments. These difficulties can lead to a poor self-identity as a learner, and especially as a reader. Eventually these children will avoid reading and even public speaking due to insecurities (Yale Center for Dyslexia and Creativity, 2017).

Nurses who are aware of the signs and symptoms of dyslexia can advocate for children and families as they navigate the maze that occurs when the two complicated systems of health care and education combine. These children need someone with a strong voice to speak for them. Often, the child with dyslexia is overlooked because he or she is shy and quiet. In our case, my well-behaved son was often paired with a talkative child, in hopes that the quiet child would be a positive influence on the disruptive child. However, because children with dyslexia have difficulty managing too many outside stimuli, this only led to a stressful learning situation (Yale Center for Dyslexia and Creativity, 2017).

Providing support for parents and families is another important role of the mental health nurse. Bonifacci, Montuschi, Lami, and Snowling (2014) found that parents of children with dyslexia showed “higher parental distress” when compared to other parents due to “…the perception of having a ‘difficult’ child” (p. 187). This stress has the potential to affect the entire family system, particularly siblings. Anticipatory guidance from the nurse would be helpful to families who are dealing with a new diagnosis of dyslexia.

Mental health nurses can also help children with dyslexia by advocating for policy changes at both local and state levels. Locally, classroom strategies based on rewards should be eliminated. Rewards only work for children who can perform the task. A teacher could wave a $100 bill in front of my son and it would not encourage him to read any better. In addition, many schools require that an IQ test be done to determine whether services are warranted for a child. IQ testing does not identify the nature of the child's disability, and in many cases, only delays treatment. Nurses who understand this situation can advocate for children to begin receiving services based on initial screenings rather than waiting until a full IQ test is performed. Finally, mental health nurses could advocate for more professional collaboration in the treatment plan for children with dyslexia. Morgan, Farkas, and Wu (2012) found that children who were recognized as poor readers in third grade identified in later grades as being angry and unpopular. These findings support the need for a more holistic approach to caring for children with dyslexia and makes clear that this is not just an educational issue, but one that affects the child's self-esteem and feelings of self-worth. Although educational issues may seem to be outside the scope of practice of nurses, their voices may be the ones that are heard because of the trust the public has for the nursing profession.

In addition, educational policies must be carefully assessed to ensure that they do not punish children with a reading disability. In some states, all third graders are tested for reading proficiency. If they fail, they are re-tested. If they fail again, they are retained (Institute for Multisensory Education, 2017). This policy is dangerous for children with dyslexia, unless an instructional approach intended for those with dyslexia, such as the Orton-Gillingham method of remediation (Institute for Multisensory Education, 2017), is provided. Policies such as these should be viewed as discriminatory against children with a neurological disorder. Nurses aware of discrimination laws can better advocate for children with dyslexia.

Conclusion

It may seem unusual for a nurse to intervene and assist a child with a learning disability, but a nurse who knows the warning signs of dyslexia is able to help families who are going through a difficult time. For my family, a nurse was a valuable resource. She listened and helped us navigate a complicated system. My son is now 14 years old and attends a private school for children with learning disabilities. He has fewer headaches and is a happy, healthy, and growing teenager. The effect this struggle had not only on my son but also on our family and the changes brought about by receiving a diagnosis and treatment demonstrate the impact that nurses can have when family-focused care is provided.

References

  • American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: Author.
  • Bonifacci, P., Montuschi, M., Lami, L. & Snowling, M.J. (2014). Parents of children with dyslexia: Cognitive, emotional, and behavioral profile. Dyslexia, 20, 175–190. doi:10.1002/dys.1469 [CrossRef]
  • Eissa, M. (2010). Behavioral and emotional problems associated with dyslexia in adolescence. Current Psychiatry, 17, 39–47.
  • Institute for Multisensory Education. (2017, March13). Understanding third grade reading retention laws. Retrieved from https://journal.orton-gillingham.com/understanding-third-grade-reading-retention-laws
  • Jeffries, S. & Everatt, J. (2004). Working memory: Its role in dyslexia and other specific learning difficulties. Dyslexia, 10, 196–214. doi:10.1002/dys.278 [CrossRef]
  • Kinney, J. (2007). Diary of a wimpy kid. New York, NY: Amulet.
  • Lewis, K. (1999). Chugga-chugga choo-choo. New York, NY: Disney-Hyperion.
  • Morgan, P.L., Farkas, G. & Wu, Q. (2012). Do poor readers feel angry, sad, and unpopular?Scientific Studies of Reading, 16, 360–381. doi:10.1080/10888438.2011.570397 [CrossRef]
  • National Center for Learning Disabilities. (2013). The state of learning disabilities: Understanding the 1 in 5. Retrieved from http://www.ncld.org
  • Siegel, L.S. (2006). Perspectives on dyslexia. Paedeatrics & Child Health, 11, 581–587. doi:10.1093/pch/11.9.581 [CrossRef]
  • University of Michigan. (n.d.). IQ testing and dyslexia. Retrieved from http://dyslexiahelp.umich.edu/answers/ask-dr-pierson/iq-testing-and-dyslexia
  • Yale Center for Dyslexia and Creativity. (2017). Signs of dyslexia. Retrieved from http://dyslexia.yale.edu/EDU_signs.html
  • Yates, R. (2013). Bad mouthing, bad habits, and bad, bad boys: An exploration between dyslexia and drug dependence. Mental Health and Substance Use, 6, 184–202. doi:10.1080/17523281.2012.699460 [CrossRef]
  • Youman, M. & Mather, N. (2013). Dyslexia laws in the USA. Annals of Dyslexia, 63, 133–153. doi:10.1007/s11881-012-0076-2 [CrossRef]
Authors

Dr. DeBrew is Clinical Professor, Community Practice Department, School of Nursing, The University of North Carolina at Greensboro, Greensboro, North Carolina.

The author has disclosed no potential conflicts of interest, financial or otherwise.

Address correspondence to Jacqueline DeBrew, PhD, MSN, RN, Clinical Professor, Community Practice Department, School of Nursing, The University of North Carolina at Greensboro, PO Box 26170, Greensboro, NC 27402-6170; e-mail: jkdebrew@uncg.edu.

10.3928/02793695-20170718-04

Sign up to receive

Journal E-contents