Issue 15: When Good Enough is Good Enough: Dyslexia, Intervention, and the Whole Child | Melia Keeton-Digby

I know something about you because you chose to read this article: you care about someone with dyslexia. If that someone is your beloved child, I also know something else about you: you have been through a lot.

Although the journey of raising a dyslexic child is unique for each family, some similarities invariably unite us. As a dyslexia specialist and mother to a daughter with dyslexia, I hear echoes of the same sentiments in each family's stories that I am privileged to hear. Feelings of sadness, grief, and perhaps worst of all, feelings of guilt pepper our stories, along with frustration and possibly anger at ourselves and others who "should have noticed the signs earlier." We have worried. Oh, how we have worried!

What will be the impact on my child's future? Will they be able to succeed in school? In life?

My experience watching my brilliant daughter struggle to learn to read and write was heartbreaking and all-consuming. Concern grew over the years and ultimately culminated in a moment forever imprinted in my mind's eye: me, sitting on the edge of an educational psychologist's office couch, flanked on either side by my husband and my sister, tears streaming down my face as I heard the word 'dyslexic' attached to my little girl's name. She was seven years old then, and finally, we had an explanation and, with it, hope. However, the relief I felt was brief and soon replaced with confusion over what to do next.

I recall sharing with my sister in those first few months post-diagnosis that it felt like I was walking a dark and arduous path alone and that I wished someone trustworthy and knowledgeable would come alongside me and light the way-Just tell me what to do, and I will do it. This confusion and overwhelm seem to be a universal experience for parents early on the dyslexia journey. Lacking the clarity, I desperately wished for, I dove headfirst into the dyslexia world and learned to be my own guide. I became my daughter's unwavering advocate and fought hard to obtain the resources she needed to succeed. With the right interventions and enough time and intensity, I watched my daughter bloom into the self-confident, self-advocating, successful learner she is today.

Those who see the light must carry the torch

My work on behalf of my daughter naturally dovetailed over the years into community service, and I expanded my career as a speech-language pathologist to include Orton-Gillingham and dyslexia certificates. This work allows me to support dyslexic learners and their families with evidence-based intervention and advocacy. Through sharing my experience, I get to light the way for others behind us on the path. It is the honor of my life.

Dyslexia is only one part of our children, but it impacts all other aspects. Each day as I walk into my office, I pass by a decorative hanging mobile that my son and I made years ago, similar to the baby mobiles that hang over a crib. It consists of rods from which equally-weighted objects hang, taking advantage of the principle of equilibrium. Often it is just hanging there, perfectly still, and balanced, but if it gets even slightly bumped or jostled, the impact causes a reaction to not just one object but all others. Like the mobile, our children possess many interconnected dimensions – physical, emotional, mental, social, and spiritual – and any impact on one aspect of their lives will affect every other.

Undiagnosed and untreated, the weight of dyslexia wreaks havoc on the rest of the self.

Undiagnosed and untreated, the weight of dyslexia wreaks havoc on the rest of the self. Reading, writing, and spelling difficulties can lead to low self-esteem, frustration, and academic failure. Children with dyslexia often struggle with anxiety, depression, and social isolation due to their learning difficulties. "Dyslexia inflicts pain. It represents a major assault on self-esteem…For many affected children, dyslexia has extinguished the joys of childhood," writes Schaywitz in her seminal book, Overcoming Dyslexia. She continues, "Once a pattern of reading failure sets in, many children become defeated and develop what often evolves into a lifelong loss of their sense of self-worth." Using the mobile analogy, an undiagnosed and untreated dyslexic child filled with anguish is imbalanced. High-quality, evidence-based, and intensive intervention is essential to alleviate the emotional challenges and allow for academic success. Therefore, when you have a dyslexic child, dyslexia and its remediation often becomes a large part of your family's life- researching and learning about dyslexia, encouraging your child, advocating for their needs, educating teachers and administrators, fighting for their legal rights and making peace with compromises when we must, practicing skills, obtaining assistive technology, driving to appointments, paying for tutoring – all of this energy commensurate with the great need in our child, with the hopes of remediation and restoring equilibrium.

Dyslexia is a continuous spectrum, meaning it ranges in the severity of impact. Some people may have severe problems in several areas, such as reading, spelling, remembering, listening, and sequencing. Other people may have less severe or mild difficulty in just one or two areas. The duration of the remediation process varies from person to person as it depends on the severity of the disorder and the individual's response to treatment, the frequency of their tutoring and intervention, and other issues. Regardless, research tells us that with intensive training, the brains of dyslexic children can be rewired to function more like those found in neurotypical readers. Still, by definition, dyslexia is a lifelong condition that cannot be cured.

Depending on where you are on your journey, you may only partially believe this truth. For myself, it wasn't until many years later, when my daughter was, by all measures, remediated, that this reality of the disorder overcame the denial I secretly harbored. You see, our children's difficulties associated with dyslexia will not disappear entirely. Good intervention makes a huge difference, but it isn't a cure.

So where, then, is the remediation finish line? If there's always room for improvement and refining growth, does intervention extend ad infinitum?

At some point (and this will be personalized as no two people with dyslexia are exactly alike), the time is right to discontinue direct intervention or private tutoring and focus instead on accommodations, advocacy, and acceptance. I propose we make decisions with and for our children regarding dyslexia and its remediation from the perspective of considering the whole child and seeking balance.

It is important to note that ending remediation does not mean an individual's learning difficulties have disappeared entirely. Instead, it means they have acquired enough skills where the cost of continued intervention outweighs the benefit. Ending remediation should be based on a combination of factors, such as student progress, motivation, willingness, and resource availability.

One factor to consider is the child's progress. If the child has significantly improved their academic performance and is reading, spelling, and writing with relative ease, it may be time to end remediation. Continuing may not provide any additional benefits. Yes, growth can and will still happen (even as adults, we are always learning!), but one need not spend hours in its singular pursuit as was necessary before. Accepting this may be tricky for perfectionists, especially in a culture that views weaker literacy skills, such as spelling mistakes or dysfluencies when reading aloud, as a sign of laziness or ignorance. No one wants others to view their child in this negative, disadvantaged light. However, striving for perfection regarding dyslexia is futile and can lead to stress, anxiety, and even depression. Rather than pushing our children to an unattainable ideal, a more productive way to spend our efforts is to shift our culture from judgment to understanding.

Striving for perfection regarding dyslexia is futile and can lead to stress, anxiety, and even depression.

Another factor to consider is the child's motivation and willingness to continue the intervention. It may be time to end if they are no longer interested or engaged in the process. Continuing without their buy-in could lead to frustration and a lack of progress. As your child grows into a young adolescent, they become the expert on themselves, and we shift into the consultant role. Our children want to do well, and they will welcome intervention and accommodations when they believe and experience that it helps them learn and perform better. Rather than force our will, we are wise to listen to our older children's feedback regarding continuing intervention. Dyslexia has many negative impacts, but so does feeling controlled. In The Self-Driven Child: The Science and Sense of Giving Your Child More Control Over Their Lives, the researchers contend that "without a healthy sense of control, kids feel powerless and overwhelmed and will often become passive or resigned. When denied the ability to make meaningful choices, children are at high risk for becoming anxious, struggling to manage anger, self-destruction, or self-medicating." A healthy sense of control is related to virtually everything we want for our children, including physical and mental health, happiness, and, yes, even academic success.

Dyslexia has many negative impacts, but so does feeling controlled.

Lastly, we should also take resources into account. Limited resources are available for remediation (time, energy, and finances), and we should use them effectively and efficiently. Ending remediation after significant and sufficient progress can free up those resources for other areas of their life. When a child has dyslexia, they have spent many, many hours learning to read, write, and spell. They deserve to spend at least an equal amount of time doing the things they love, something of passion and ease. Sometimes, the emotional cost of ongoing tutoring may be too high.

We must listen to our instincts when making decisions for our children. Following your instincts means listening to your inner voice telling you what is best for your child. It may only sometimes be the popular choice or even the one others recommend. However, following your instincts as the person who loves and knows your child most is crucial in making decisions that will benefit their growth and development – not just in one area, but as a whole. A whole child is a unique person, comprised of interacting dimensions, each to be honored and nurtured. Regarding our children's dyslexia remediation, we are wise to recognize the threshold of equilibrium where good enough becomes good enough and respond accordingly.

References

• Shaywitz, S. (2020). Overcoming dyslexia: Second edition, completely revised and updated. Knopf Doubleday Publishing Group.
• Stixrud, W. R., & Johnson, N. (2019). The self-driven child: The science and sense of giving your kids more control over their lives. Penguin Books.

Melia Keeton-Digby

Melia Keeton-Digby is an author and speech-language pathologist specializing in dyslexia. She is the founder and creator of The Nest, a sacred gathering space in Georgia, USA, where she first birthed her mother-daughter and mother-son empowerment circles, on which her books are based. She works in private practice, offering dyslexia evaluations, intervention, and advocacy.

Melia is the author of The Heroines Club: A Mother-Daughter Empowerment Circle (Womancraft Publishing, 2014) and The Hero's Heart: A Coming of Age Circle for Boys and the Mothers Who Love Them (Womancraft Publishing, 2016). Melia is passionate about supporting parents in raising confident and connected children.

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The Heroines Club: A Mother-Daughter Empowerment Circle

The Heroines Club: A Mother-Daughter Empowerment Circle offers nourishing guidance and a creative approach for mothers and daughters, aged 7+, to learn and grow together through the study of women’s history.

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The Hero's Heart: A Coming of Age Circle for Boys (And the Mothers who Love Them)

A revolutionary twelve-month journey for mothers and sons, ages 9-14, to explore the core values and themes our boys need most in their passage to healthy young manhood.

The Hero’s Heart is a groundbreaking new approach to raising healthy, compassionate, and emotionally intact young men. Innovative and timely, this mother-son curriculum is an answer to what our boys need in order to thrive – rather than just survive – in the current culture of traditional masculinity. With genuine encouragement and invaluable insight, Melia inspires mothers to create the intentional communities, character-shaping opportunities, and rite-of-passage experiences that adolescent boys crave. The Hero’s Heart is a gift to anyone involved in raising or nurturing boys.

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