Issue 25: Lessons in Advocacy: Jay's Story

The Beginning

Jay was a very happy, 'busy' child - he was quick to smile, fun-loving and rambunctious, hitting developmental milestones as expected. Jay is our only child. As a family, we read bedtime stories every night. We also sang alphabet songs and connected the sounds of the alphabet to each individual letter – we did this religiously from about 6 months old. By the time Jay turned 1, we realized his language skills didn't seem to be developing as they should - the few words he did use were very unclear and difficult to understand. This created a lot of frustration for him (and us). Jay understood everything we said to him and was obviously a smart, intelligent child, but his speech was not developing naturally.

When Jay was about 2, a chance conversation with another parent led us to have Jay assessed under the early intervention program offered in our state. Jay was evaluated and diagnosed with a speech and language delay, which made him eligible for Pre-kindergarten speech therapy. By the time Jay started kindergarten he had been receiving speech therapy for 2 years. Jay would continue in speech therapy for an additional 4 years.

First Grade

In first grade, we realized that Jay was struggling academically in the classroom. We knew he was aware of his letters and the sounds they made, but he did not seem to be able to connect the two. When he did read, it was very, very slow and laborious, and he couldn't remember what he had just read. Weekly spelling tests were awful – we would work on the word list 3 or 4 times every day for a full week prior to the test. Usually, he would score well but promptly forgot how to spell the same words a day later. He found it difficult to write, had an odd pen grip and would complain of his hand hurting when doing so. I distinctly remember raising concerns with Jay's teacher, who told me not to worry. I also met with the school speech pathologist, who told me that this was very usual with boys: that Jay was doing fine and that it would 'click' eventually. I trusted them as professionals and believed they had Jay's best interests at heart.

Second Grade

In second grade, Jay was still struggling, and again, I raised my concerns to his new teacher, and once more, I was reassured that everything was fine. I could see Jay's anxiety rising, and he had developed school avoidance behaviors. Jay would tell me he had stomach aches almost daily. I recall his teacher sent a note informing us Jay was going to the bathroom several times in an hour. After visits to a doctor and a referral to a specialist, they couldn't find anything wrong. Years later, Jay would tell me he would sit in the bathroom so he didn't need to read out loud. Homework was a horrible experience for us, and it usually ended in meltdowns and crying on most days. As a family, we were stressed and desperate for answers.

Years later, Jay would tell me he would sit in the bathroom so he didn't need to read out loud.

Third Grade

In third grade, my intuition told me I was missing something. I became a detective, reading, researching, googling and desperately hunting for the 'missing piece.' Eventually, I stumbled across a webinar by Susan Barton on the website 'Bright Solutions for Dyslexia'. In the presentation, Ms. Barton referenced the classic warning signs of dyslexia, listing each red flag in developmental order. Notably, she said that if a child exhibits 3 or more of the signs, dyslexia should be a consideration.

Jay had 16 of the warning signs.

• delayed speech
• mixing up the sounds and syllables in long words
• constant confusion of left versus right
• late establishing a dominant hand
• difficulty learning to tie shoes
• trouble memorizing their address, phone number, or the alphabet
• a close relative with dyslexia
• dysgraphia (slow, non-automatic handwriting that is difficult to read)
• extreme difficulty learning cursive
• slow, choppy, inaccurate reading: - guesses based on shape or context - skips or misreads prepositions (at, to, of) - ignores suffixes - can't sound out unknown words
• terrible spelling
• often can't remember sight words (they, were, does) or homonyms (their, they're, and there)
• difficulty telling time with a clock with hands
• trouble with math - memorizing multiplication tables - memorizing a sequence of steps - directionality
• when speaking, difficulty finding the correct word - lots of "whatyamacallits" and "thingies" - common sayings come out slightly twisted
• dreads going to school - complains of stomach aches or headaches - may have nightmares about school.

By this time, Jay had been in special education for nearly 5 years - no one had ever mentioned the genetic liability for dyslexia or seemingly noticed any of the common red flags. I felt tremendous guilt for not knowing. In hindsight, I feel ridiculous, considering there is neurodiversity on both sides of our family. On September 15th 2017, I sent the first email to Jay's school (officially) asking for help. I trusted the school and naively expected them to be proactive about helping him. At this point, we had no idea of what was ahead - our fight would continue for over 2 long years. We spent multiple hours in meeting after meeting trying to convince 'the team' that Jay needed help. We were told, 'Jay just needs repeated practice' or 'Jay doesn't stand out as a student who needs significant support.' No matter what evidence we presented or how much we begged, the school refused to evaluate Jay or look deeper into our suspicion of dyslexia.

I knew the school team wasn't following federal or state laws, but when challenged, they didn't seem to care. Jay struggled on for the next 5 months, but after a particularly bad day at school, he had a huge meltdown and told us he wanted to die. He was 8 years old. His words were like a gut punch, taking the air from my lungs. That day, we knew enough was enough. We took matters into our own hands and paid for a comprehensive evaluation from a Neuropsychologist, and Jay was diagnosed with dyslexia (and, a little later, dysgraphia). When we gave the private evaluation report to the school team, they said, "We agree Jay is disabled... but he is not disabled enough."

And so, the battle continued on. Further private testing showed Jay was in the 1st percentile for phonemic awareness and decoding. He was seriously deficient in the skills that would be necessary for reading more complex words as he moved through each grade. Yet the school team still refused to listen to us. We filed a state complaint (part of the resolution process in the USA under the federal law IDEA). Our complaint was upheld; however, the school then refused to provide a program that was appropriate for Jay. By now, we had spent the entire academic year fighting for Jay's right to read, and finally, we realized it was unlikely the school could – or wanted to - serve Jay's needs. We felt forced to remove Jay from the school and subsequently filed Due Process against the school district. On October 29th, 2019, 25 months after we had first asked for help, we entered into a settlement agreement with the school district.

Why are parents forced to fight so very hard for their child's right to read? Literacy is a civil right that should be accessible to ANYONE. Sadly, our story is very common. However, there are two things that set our family apart from the majority, and those things are time and money. I was a stay-at-home parent, and my husband had a very flexible schedule, which meant we could attend the many, many hours of IEP meetings. We were able to pay for private testing and evaluations that can cost several thousands of dollars. We placed Jay into a private school for children with learning differences and then continued to fight, knowing he was 'safe'. Most families do not have the luxury of time or money.

Why are parents forced to fight so very hard for their child's right to read? Literacy is a civil right that should be accessible to ANYONE.

Imagine what could be accomplished if schools fostered a proactive approach and worked in true partnership with families? We are told that funding is the issue, but in truth, with solid evidence-based early literacy practices in place from the outset, many children may never need specially designed instruction or have to enter special education. Without accountability or oversight, the resolution process that was set up with the intent of leveling the playing field for parents fails, leaving no free mechanism to resolve conflict. Personal wealth should not determine whether a child can access an appropriate education.

In the past 2 years, our home state has embraced the 'Science of Reading' mandating that literacy instruction and interventions are aligned as such. Educator Preparation Programs must ensure new teachers possess the requisite knowledge in scientifically based practices prior to licensure. The state has also mandated that all pre-kindergarten through 5th-grade teachers participate in a program that teaches the five essential components of reading. Positive change is coming, but for so many children, the changes may be too late.

Today, Jay is a confident and chilled-out 15-year-old thriving in 10th grade. He was able to transition out of the 'dyslexia' school after 4 years and is now back in a 'regular' academic setting. While he will never 'love' reading (or writing!), he is fully remediated and doing well. Certain things will always be difficult for him, but he now understands that his neurodiversity is the reason why. It was actually a relief for Jay when he was diagnosed because he finally understood he is smart, and he is intelligent.

Our family is definitely the epitome of 'recovering loudly’.

Reading failure has such an impact on children's mental health - every child deserves to move through their academic career with their self-esteem intact. Our experiences motivated me to join other parents in creating community spaces on social media to ensure any family can access accurate information, advice and guidance. We also advocate for accountability in the supervision and monitoring of districts across the state. I have been handed the opportunity to 'pay it forward' and do so by supporting other families in literacy spaces. Our family is definitely the epitome of 'recovering loudly’.

Q & A

Mental Health

How did your family come to understand and address the emotional challenges Jay faced during his struggles?

We didn't realize that Jay's behaviours were actually anxiety-induced and symptoms of a deeper issue until years later. I still feel an enormous sense of guilt for not recognizing this earlier. Looking back, as a family, we were all struggling to understand what was happening. In hindsight, I am not sure we did a good job of supporting Jay's emotional needs. When we told Jay he was dyslexic, he was relieved and finally understood why it was so difficult for him.

Private School Experience

How did the private school and additional support help Jay in his learning journey and build his confidence?

After filing due process and settling with the public school system, we were able to place Jay at the private school. In addition, he also received private tutoring. His remediation was intensive over a period of 3 years.

The private school Jay attended is a school for students with learning differences – specifically dyslexia, dysgraphia and dyscalculia. The school uses an individualized, structured approach to literacy, but beyond this is a nurturing environment that recognizes each student's unique needs. Jay's confidence soared once he started to feel academically successful.

Hobbies and Interests

What are Jay's passions or hobbies outside of school? Are there any particular achievements or milestones outside academics that Jay is especially proud of?

Jay started playing ice hockey at age 6. He eventually played travel hockey at a very competitive level, and frankly, without his success on the ice, I truly believe our journey would have been very different. He found camaraderie and community with his teammates; the rink became his 'safe space' and gave him a source of mental health therapy and emotional support. Jay's passion is now golf. He found his passion for golf through his grandfather (my dad). They enjoyed a mutual respect for the game and relished any time they spent together on the golf course. Despite Jay living in the USA and his grandfather in England, they regularly exchanged golf stories by WhatsApp or FaceTime. In the summer of 2023, Jay played his final round with his grandfather, who sadly passed a few weeks later. Jay is incredibly proud of his success in tournament golf, having started to play about 2 years ago. He is enjoying his newfound passion and was privileged to play in Scotland and California this past summer. Jay is focused on playing golf in college.

Remediation Success

What does "fully remediated" mean for Jay, and how does he manage any remaining challenges today?

The intensive remediation Jay received has enabled him to read, write and spell at a level comparable with his peers. While his dysgraphia still does present some challenges, Jay understands the need for self-advocacy and does ask for support when needed.

Looking Back and Moving Forward

How does Jay reflect on his dyslexia journey, and what goals is he working toward now?

Jay rarely talks about his own dyslexia journey – in some part, this may be a trauma response, but also, he hears me talking about dyslexia a lot. Frankly, I think he is fed up with hearing about it!! On one particularly trying day, he did thank me for fighting so hard and never giving up on him. Jay has his sights firmly set on playing golf in college and is working hard in the classroom and on the golf course.

Amanda Harrison

Jay Harrison

Extracts from Dystinct Magazine