“I need a drink after meetings ’cause I’d just feel like I was banging my head against the wall.”

October is Dyslexia Awareness Month. It is a time to look beyond the slogans and focus on the lived reality for families. Dyslexia does not just affect how children learn to read. It reshapes family life. Parents are forced to take on the work of a broken system, carrying the advocacy load to make sure their children get the support they need.

“My son is 12. I have been pushing for help since he was 4. Slowly and with a mountain of effort on my part, ADHD, generalised anxiety, sensory processing difficulties, fine motor delay, gross motor delay and finally dyslexia have been diagnosed.” - DVS Parent Survey (2020)³

For many, that Specific Learning Difficulties (SLD) diagnosis feels like a turning point. But relief quickly fades. Reports are often ignored by schools, or the recommendations are watered down. Parents are left to keep pushing, repeating the same conversations with new teachers every year.

The financial toll

Getting help for a child with dyslexia costs money. Assessments can run into the thousands. Private tutoring and therapy add up quickly. Families talk about cutting back workdays, giving up family holidays, or even taking on debt just to afford the basics⁷. For many, the cost of intervention is simply out of reach. The result is inequality. Children with access to financial resources get help. Others are left waiting⁴.

The mental health toll

Parents describe the weight of constant advocacy as exhausting and overwhelming. often say to me, “You try and do everything you can. But I always think I should be doing more. It feels so grossly unfair. It shouldn’t be so difficult.”⁵ That kind of pressure wears families down. Anxiety, guilt and burnout become part of daily life¹. Children feel it too. Their confidence and well-being are eroded while they wait for schools to act².

Access to intervention

Even when families fight for assessments, access to evidence-based intervention is patchy. Too often, schools fall back on outdated approaches or offer minimal support⁶. Parents end up coordinating everything themselves, paying for private tutors, and trying to hold schools accountable for following through⁷. The energy and the time this takes is staggering.

The acceptance problem

Perhaps the most frustrating part is when a carefully prepared professional report is dismissed by the school. Families arrive at meetings armed with recommendations from psychologists or speech pathologists, only to hear that the school cannot or will not follow them¹ ⁷. This is where many parents feel powerless. They have spent months or years getting answers, only to be told the report is just a piece of paper.

What needs to change

Families should not have to mortgage their homes, sacrifice their health, or give up family holidays just to secure support and accommodation. They should not have to beg schools to accept professional advice. They should not be left carrying the advocacy load alone.

It means teachers should be trained to deliver effective, evidence-based instruction during work time. And it means schools respecting and acting on the reports families work so hard to obtain, and acting upon them.

This Dyslexia Awareness Month, let’s remember that awareness is not enough. Families cannot keep patching the gaps of a broken system. Parents have carried the advocacy load long enough. It is time for governments, schools and communities to share the responsibility.

References

1. Anthony, H., Reupert, A., McLean, L., Rabba, A. S., & Gregory, H. (2025). Parents’ stress and satisfaction with dyslexia assessment in Australia. Educational and Developmental Psychologist. https://doi.org/10.1080/20590776.2025.2545250

2. Delany, J. (2017). A fair go for all: Advocacy and equity in education. Melbourne: Australian Scholarly Publishing.

3. Dyslexia Victoria Support. (2020). Parent Survey Report. Melbourne: DVS.

4. Leitão, S., Nayton, M., & Shanahan, M. (2017). Exploring the impact of dyslexia on families in an Australian context. Journal of Learning Disabilities, 50(3), 322–332. https://doi.org/10.1177/0022219415617165

5. Leslie, L., Graham, L. J., & Harper-Hill, K. (2024). Parent perspectives on navigating support for children with dyslexia. Australian Educational Researcher, 51(2), 233–251. https://doi.org/10.1007/s13384-023-00623-4

6. Wilmot, E., Graham, L. J., & Miller, J. (2023). Parents as advocates: Negotiating dyslexia support in Australian schools. International Journal of Inclusive Education. https://doi.org/10.1080/13603116.2023.2229470

7. Woolley, M. (2021). Dyslexia, disadvantage and social justice: The hidden cost of diagnosis. British Journal of Sociology of Education, 42(7), 1005–1020. https://doi.org/10.1080/01425692.2021.1948312948312