Issue 16: Dyslexia and Anxiety - Our Family Journey | Heather Down

As parents of a dyslexic, dyscalculic, and dysgraphic son who was not diagnosed until he was 11 years old, we have found that the effects of anxiety, stress, and those early traumatic years are interwoven into his and our daily existence. At times more so than others. As a teacher and parent, I have a growing interest in understanding the intersection between dyslexia and anxiety and the impact those early traumatic years of our son's undiagnosed learning difficulties have on him today. We often question how this has affected him and how we, as his parents, can best support him as he approaches the National Certificate of Educational Achievement (NCEA) and beyond.

Our learning journey as a family with dyslexia started when our son was seven. We noticed that despite spending two and a half years at school, he was having great difficulty reading, writing, and spelling. Some days he would "get it," but not at all the next day. We were made aware by his teacher of his disruptive behaviour in class. We also noticed other things; he constantly had a sore tummy, headaches, angry outbursts at home, and a distinct disinterest in reading and writing activities.

As his school years progressed, so did the regression of his behaviour both at home and school, as well as the constantly sore tummy, headaches, and general feeling of unwellness. At the time, we were encouraged to pursue food allergies for his physical symptoms and use charts at home and school for his behaviour. We had ups and downs with his behaviour. We trialled a dairy-free, sugar-free, and low-gluten diet with him.

We didn't have a lot of knowledge about dyslexia. I knew the word, but not much else. We didn't know that it was a learning difficulty that is neurobiological in origin, nor did we understand that individuals are born with it. All we saw was a child who had poor spelling, writing, and reading abilities despite all the hard work we were doing at home to support him and foster a love of reading and writing. We also didn't understand anything about the co-morbidity of dyslexia occurring with dysgraphia and dyscalculia (among other conditions), as is the case with our son.

We had no idea of the impact his undiagnosed dyslexia was causing and did not make the connection that this was contributing to his behaviour and general feeling of unwellness.

By the time our son was 11, it seemed as though a week did not go by where we were not in the principal's office for our son's behaviour. He had mastered many things: the art of rudeness to get out of class, of needing to go to the toilet every 5 minutes (in fact, he trained his body to do this), and the art of chatting and distracting others around him so he was not the only one not completing work. He mastered the art of hiding behind his long fringe. What he had not mastered was learning to read, write and spell. Home life for us was at times toxic, with angry outbursts upon leaving school, meltdowns, overwhelm, and a pattern that we did not recognise at the time when Sunday nights would be full of arguments, fights, and anger. Unfortunately, this pattern of behaviour became learned and normal for him.

That same year, we pursued a dyslexia diagnosis. Lightbulbs started to switch on for us. However, we had no idea of the long road ahead based on the impact of five long years at school for a kid who did not know why his peers around him were learning, and despite his best efforts, he could not. He labelled himself as 'dumb' and spent a lot of time believing this.

When looking at trauma and anxiety, trauma can be defined as "an emotional response to a terrible event" (APA, 2023a), and anxiety can be defined as "an emotion characterised by feelings of tension, worried thoughts, and physical changes" (APA, 2023b). The emotional effects of trauma can include unpredictable emotions and physical symptoms. Physical symptoms can include feeling sick, having a sore stomach, and having constant headaches (APA, 2023a). Anxiety can also present with physical effects, such as trembling, sweating, and dizziness (APA, 2023b).

When faced with a phonological deficit, a writing deficit, and a mathematics deficit in a place built around literacy and numbers, we saw the results of our son being regularly confronted by tasks at school that were hard for him. This was the reason behind his extreme tension and worried thoughts. This was causing the manifestation of physical changes such as a sore tummy and feeling sick all the time. Acting out in class was the opportunity to escape from the learning environment. Our son would often have a racing heart, and for a while, he was convinced he was having a heart attack on a regular basis. This was most distressing for all of us.

Neither we as parents nor our son could figure out why these symptoms were occurring as we did not fully understand the nature of dyslexia, anxiety, or trauma and how these were linked. It's important to dig deeper and consider the bigger picture of what is going on.

Our son did not have the emotional intelligence or words at the age of 11 to explain his symptoms or why they were happening, and as his symptoms persisted, so did the decline in his school performance, along with the decline in the way he valued himself.

We, as parents, realised we needed to support our son and move him from a place of anxiety and stress to a place where he could experience feelings of competence and confidence. We began this journey after his dyslexia diagnosis and started by teaching him how his brain learns differently and why. We stressed the importance of understanding that he was not 'stupid' or 'dumb'. We enrolled him with a Multisensory Structured Language (MSL) tutor and spoke to his school about educational accommodations that would address the challenges he faced in class. Most importantly for our family, we sought counselling. The more I learned about dyslexia and the way the brain learns to read, write, and spell, I developed a passion for supporting my son. I did not want him to become a statistic - of any sort.

As our learning journey continued with dyslexia and anxiety and the effects of an undiagnosed learning difficulty, we made the decision as a family for me to leave my early childhood teaching job and retrain as an MSL Educator in order to teach our son to read, write and spell following Multisensory Learning based on the Science of Reading. It was important for us to have a wrap-around for our son so he could achieve.

From here, we focused on his strengths. This was a game-changing pivot point for him, as we worked hard to ensure he believed in himself and saw his intelligence and creativity.

We did this by focusing on his passions and providing an outlet for them through various interest-based clubs, sports, and fitness. We understood the importance of him learning to believe he could do anything he set his mind to.

Recently, he turned 16 and wanted to get his driver's license. Roll in the support service! My husband read him the New Zealand Road Code each night and tested him with oral questions. When the time came to sit his license, I booked a Reader. He nailed it in 10 minutes and walked out with his license in his hand.

The long-term effects of trauma and anxiety, coupled with his dyslexia, dysgraphia and dyscalculia, however, always lie close to the surface. This was particularly relevant when he started college. The change in school, coupled with a changing teenage brain, put him on a stress-induced mental overload, and his anxiety came back with force. It was a trying and, at times, heart-breaking two years both for him and our family as we worked to pick up the pieces which seemed to unravel around us, brought on by cognitive overload and a tendency for unresolved trauma and anxiety to claw their way back up to the surface. By understanding the signs of when his anxiety was peaking, however, we were able to support him and encourage him to take care of himself.

At times, and especially recently as he works his way through NCEA, he still has a racing heart and a general feeling of unwellness when he is faced with complicated and overwhelming tasks of a written or mathematical origin. It's a tough job to advocate for learning difficulties constantly and consistently, especially when there is a lack of knowledge about the bigger picture of how this affects day-to-day life. Our son has had to learn to advocate for himself and speak up about his dyslexia. He has the security of knowing that he is smart and capable of achieving what he sets his mind to - something he has worked hard to embrace and believe.

My personal top 6 support tips for parents of dyslexic children to help build confidence and reduce anxiety:

• Embrace any strength-based interests your child has and provide support to encourage these where you can.
• Become familiar with educational accommodations and how to get these applied in the school setting.
• Work closely with the school to create a 'safe space' and a person to turn to if needed when anxiety is peaking during school hours.
• Don't be afraid of counselling. This is not a sign of weakness; it is a sign of understanding the bigger picture and knowing support may be required through a professional.
• If available, enrol your child in multisensory tuition for reading, writing, and spelling.
• Show empathy and understanding where you can; children feel secure knowing you are on their side.

Being aware and understanding the signs of anxiety or stress for dyslexic students is also very important:

• Be aware of changes in behaviour patterns - for example, after-school meltdowns (this can also be called after-school restraint collapse). Does your child perk up on Friday and then have a deterioration in behaviour by Sunday
• Does your child have angry, unhappy behavioural outbursts for no reason?
• Is there learning avoidance both at school and home?
• Do they act up in class, have a constant need to go to the toilet, or are the 'class clown'?
• Do they constantly have a sore tummy or headache and experience a racing heart or trembling body?

Dyslexia, anxiety, stress, and unresolved trauma was interconnected in our family, significantly impacting learning and well-being for all of us. Our son, being so young, was particularly vulnerable. Individuals with dyslexia, alongside parents, would benefit from understanding the physical and emotional side-effects of anxiety and trauma, and it's important that the correct supports are in place. It's important to know the signs of anxiety. They can be different depending on individual ages and stages of development. Experiencing and understanding individual success is important to cultivate a growth mindset.

References

• American Psychological Association. 2023a. Trauma. Accessed 29 May 2023. [apa.org]
• American Psychological Association. 2023b. Anxiety. Accessed 29 May 2023. [apa.org]

Further Reading

• International Dyslexia Association. Definition of Dyslexia. Accessed 29 May 2023. [dyslexiaida.org]
• International Dyslexia Association. Understanding Dysgraphia. Accessed 29 May 2023. [dyslexiaida.org]
• International Dyslexia Association. Specific Learning Disabilities: Plural, Definable, Diagnosable, and Treatable. Accessed 29 May 2023. [dyslexiaida.org]
• Schultz, j.  Is Dyslexia Hereditary? Accessed 29 May 2023. [readingrockets.org]
• NIH. NIH-funded study finds dyslexia not tied to IQ. Accessed 29 May 2023. [nih.gov]
• International Dyslexia Association. The Dyslexia Stress Anxiety Connection. Accessed 29 May 2023. [dyslexiaida.org]

Heather Down

Heather is a dedicated literacy specialist who is committed to assisting children and their families who require additional support in the areas of reading, writing, and spelling. Despite initially pursuing a career outside the realm of education, Heather recognised her passion for teaching and underwent retraining in Early Childhood Education. Her desire to help her own son, who struggles with dyslexia, dysgraphia, and dyscalculia, led Heather to further retrain in Multisensory Learning based on the Science of Reading principles.

Heather holds a SPELD New Zealand Certificate in Specific Learning Disabilities and is an MSL Specialist Trained (IMSLE). Heather gained valuable experience working with a private tutoring company in New Zealand. However, in 2022, she took the leap and became a Sole Trader, establishing her own tutoring service called Love Literacy Mount Maunganui.

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Extracts from Dystinct Magazine