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ParentingAdvocating for My Neurodiverse Child - Dyslexia Diagnosis

Advocating for My Neurodiverse Child – Dyslexia Diagnosis

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On a frightening fall afternoon, my daughter lay balled up in a corner, shaking her head and crying, “I am stupid. I want to die.” My highly verbal, sociable and bright seven-year-old daughter had been drifting into an abyss and had finally hit her wall. 

Over the past two years, I had watched her gradually lose steam in her many attempts to learn how to read. Despite several reading tutors, Lily had not yet cracked the code. 

In fact, she was becoming more and more resistant to the learning process and, more importantly, it had taken a toll on her self-esteem. Meanwhile, the teachers at her school looked at me with blank faces and were doubtful about my claims that she was falling behind. 

Related: 10 things I wish someone had told me about raising a neurodiverse child 

I felt like an out-of-touch tiger mom, amidst a group of educators who had all drunk the same progressive school Kool-Aid, believing each child came to learning at their own pace. I was told that I had to be patient and that Lily would catch up on her own time. 

But I knew in my gut that something was wrong. Parenting is not linear, and it is often a struggle to toe the line between staying in the moment, pausing to see how things will turn out, and knowing when to be flexible and change course. 

I had picked this progressive private school and had felt fortunate to be able to send my daughter to school where I could have only dreamed to have attended. Indeed, one of the many trappings of parenting, living out one’s own fantasies and giving one’s children all the opportunities that one missed. 

When we were first looking at schools, I had been drawn to the school’s progressive philosophies on social justice and equity, along with its emphasis on child-centered learning. They didn’t push homework and tests. 

Instead, they valued the notion of play, in the early years of development, as being the vehicle to ultimate learning. Their philosophy was deeply aligned with my own, one in which I had developed over the years of my clinical training as a clinical psychologist. 

Yet now, after three years into the school, no one had any concrete answers to give me, and I was sitting on the outside. In fact, no one had any real sense of what Lily could and couldn’t do in the classroom. They had done away with any formal assessments. There were no baseline assessments and no way to see if any of their teaching strategies had made any real impact on her ability to progress as a reader. 

Relying on both my clinical training and motherly intuition, I reached out to my former neuropsychology professor, and she generously offered to speak with me about my concerns. I felt fortunate in that moment, and I understood my privilege. I had access to information and a sense of the path forward to help my daughter. 

I quickly arranged to have Lily evaluated by my mentor, and she came back with a clear diagnosis of dyslexia. Her recommendations were that we move Lily out of her progressive, unstructured school environment and into one that would directly and explicitly teach her how to read. A school that had frequent assessments of some form or another for us to be able to track the progress of her learning. 

Before long, parents in my community came out of the woodwork and began asking me similar questions about their children’s potential learning issues. These were concerned parents who were looking for answers, but more importantly, they wanted to feel heard. These parents were seeing their children suffer and they were looking for their own path forward. 

I was scratching my head. Why were all these parents ill-informed about their children’s learning struggles? Why were these attentive parents without resources to help guide them along? 

I made it my personal intention to help as many parents as I could by offering referrals for neuropsychologists and tutor recommendations, along with advice about various specialized school options. I encouraged them to gather data before deciding how best to proceed while holding their child’s very delicate self-esteem as a top priority. I knew how critical this period was to self-esteem development as well as to establishing strong foundational academic skills.

A child misplaced in a learning environment simply struggles. I knew as a clinician that you can’t treat a patient without accurately diagnosing the problem. And yet this same methodology—diagnosis dictating treatment—appeared to be absent in the classroom.    

After Lily’s neuropsychological assessment findings uncovered her dyslexia diagnosis, we decided to pivot, moving our daughter from a mainstream setting into a specialized school setting with supports in place to help her bridge any learning gaps. 

Related: My two kids need two different types of parenting—and it took me a while to realize that 

We were fortunate enough to be able to scrape together the funds to do so. With full awareness that not every family has the means or the access to means to make the necessary changes their child needs. Our educational system routinely fails low-income children who suffer from learning diagnoses such as dyslexia.

When I think back on those years of not knowing, what plagued me most was how rapidly our sociable, bright young girl was drifting. Her high emotional intelligence made it such that she was great at masking her deficits, and she was equally aware of the widening gap between her performance and that of her peers. She could have easily slipped through the cracks.    

Now, almost three years after making this transition, Lily can read beautifully. Her head held high. She delights in her ability to complete one novel per week and has a great aspiration to be a fiction writer. 

With her strengthened confidence, Lily is now advocating for another change, a return to a mainstream school setting with some academic supports in place. 

I hold my breath. Reassuring myself that listening to, attuning to my daughter has been the very thing that has ushered us down this transformative path.  As parents, we must certainly pause, but we must also be ready to pivot.

Editor’s Note: We know it can be difficult to get your child evaluated and find the services they need. For advice on how to get your child evaluated by a professional, consider reading up on the Learning Disabilities of America’s Right to an Evaluation of a Child for Special Education Services.

This story is a part of The Motherly Collective contributor network where we showcase the stories, experiences and advice from brands, writers and experts who want to share their perspective with our community. We believe that there is no single story of motherhood, and that every mother’s journey is unique. By amplifying each mother’s experience and offering expert-driven content, we can support, inform and inspire each other on this incredible journey. If you’re interested in contributing to The Motherly Collective please click here.

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