A Parents Role In Developmental Advocacy

You are at a birthday party for your neighbours one-year-old. The crowd begins to sing, and you see the little boy clapping his hands in rhythm, making eye contact with the camera and smiling the biggest smile. You can picture the Facebook post his mom will make later that evening, listing out all the milestones he’s hit in his first year of life. You wonder why your eighteen-month-old has yet to do anything on that list, and how you still haven't managed to catch her looking at the camera. The next year at that same little boys’ party he sings along to the song, and it hits you like a ton of bricks that your almost three-year-old still isn’t saying mom.

In the same breath you are telling a concerned mom that “they will do it when they’re ready” you will stress because your child seems behind in another aspect of development. These thoughts are normal, but they are right when they say comparison is the thief of joy. Nobody wants to feel like their child is being left behind. They will often do it when they are ready, but that phrase has gotten more eyerolls from me in the past three and half years of parenting than I’d like to admit. It’s supposed to be comforting, and I catch myself saying it often to parents who share their concerns while at the playground. My issue with that phrase is, how are we supposed to know when to advocate, and when to step back and give them time. Especially when giving them time puts them further back on a waitlist for diagnosis that is already years long. Early intervention is key they say, so hurry up and wait. In this blog post I’ll be introducing you to a mother who knows this feeling all to well.

But first, some things you need to know:

You are doing a great job! 

Too often parents believe that if their child is missing the mark on a developmental milestone, it has something to do with their parenting. You know who worries about being a good parent? Good parents. If you are doing whatever is in your means to care for, support and love your child, give credit where credit it due.

Your feelings are valid!

Every child is unique in their development, whether it be milestones, behaviour or emotional growth. If you’ve been told you are overreacting, remember, although others may have an outside perspective and a less emotional connection to your situation, you know your child better than anyone.

But don't take it from me. Melissa (Cormier) Hewlett is a social worker with 16 years of experience and who currently works in Eastern NL as a Mental Health and Addictions Consultant, and is also the mother of her four-year-old son, Connor, who was recently diagnosed with Autism Spectrum Disorder and ADHD. While she brings extensive professional knowledge in child development and navigating support systems, she is also a mother with lived experience—one who has faced the uncertainty, frustrations, and gaps in accessing services for her child. When asked to share advice on knowing when to ring the alarm bells and push for answers from a system that is already at its capacity, and the tole it takes on parents in that situation, this is what she had to say:

Mom/Superhero

Every time I think about sharing our story, I hesitate. It’s personal. It’s exhausting. And honestly, it’s painful. But after sharing a poem about our journey on “The Waitlist”, the response was overwhelming—parents, caregivers, and friends all saying the same thing: “I’m struggling too,” and “I’m so glad you shared this.”

I knew we weren’t alone, but I didn’t realize just how many families are fighting the same battle. That’s why I’m writing this. Because if sharing our experience helps even one person feel seen, less alone, or more empowered to advocate, then it’s worth it. And because those making decisions—those shaping policies, funding, and access to services—need to hear what’s really happening.

The Isolation of the Pandemic

Having my son just a few weeks into the first lockdown of the COVID-19 pandemic meant entering parenthood in complete isolation. Baby groups? Canceled. Support groups? Virtual or nonexistent. Public health check-ins? Over the phone. With my husband working as a rotational worker, much of the day-to-day fell on me, as even when he came home he had to isolate from us.  I was often left in limbo, wondering: Is my son okay? What’s typical behavior? Is this developmentally appropriate?

Friends, family, and fellow moms (all with good intentions) would reassure me: “He’ll get there in his own time.” “Every child develops differently.” But I knew. I started tracking his behaviors when he was just over a year old, documenting every detail. I knew I would have to fight for him, to build a case to make people listen and take notice.

Beyond the emotional toll, there was the impact of growing up in a world of six-foot distances, no touching, and face masks that hid the facial expressions he needed to see and learn from. How was he supposed to develop social skills in a time when human connection was so limited?

The Battle for Services

Newfoundland and Labrador has the highest Autism Spectrum Disorder (ASD) diagnosis rate in the country. We have great services once a diagnosis is made—Child Management Specialists, the JASPER program, Janeway follow-ups—but what about before that? What about the children stuck on waitlists, struggling without support? What about those who are neurodivergent but remain undiagnosed, left without the help they desperately need?

Early intervention is everything. But the wait? Two years. Two years in a system that preaches the importance of early support. My son was 16 months old when I knew something wasn’t right. I reached out, got referrals, and then waited. We were lucky to access Direct Home Services early on, but when that ended, we were on our own. Our other option? Travel out of town and pay $3,500–$4,500 for a private assessment. That’s an enormous financial investment. And with the cost of everything already sky-high, how do families make that decision? Are we really expected to drain our savings—or go into debt—just to get the answers our child needs? How many parents hesitate, unsure if they can afford it? How many kids miss out on crucial early support simply because their families can’t shoulder the cost? And why is this even a choice we have to make? Shouldn’t essential diagnostic services be available through MCP? Shouldn’t every child, regardless of their family’s financial situation, have access to timely assessments and support? The system tells us that early intervention is critical—but then makes it nearly impossible to access without deep pockets or endless patience. Neither should be a requirement for getting a child the help they need.

So, I fought. I researched, I advocated, and when the system failed, I paid—out of pocket, out of town, out of sheer desperation. We sought private Occupational Therapy, and Play Therapy sessions in St. John’s. Without a family doctor until he was four, we had to navigate the healthcare system without consistent medical guidance.  I’ve implemented sensory diets, structured sleep routines, heavy work activities, and emotional regulation strategies. We even tried therapeutic listening programs, investing in special headphones that cost $300 in hopes of making a difference. Every step required persistence, advocacy, and an incredible financial and emotional burden. 

We’ve lost 5 different daycare arrangements. Yes there's programs for Inclusion and Support, but you can only access it if you're in a registered daycare (even then, it's not guaranteed). The waitlist for a spot in Clarenville? On average, three years. We've been waiting for two, and with school starting in September, he won't even get in before then. So what's the point? The only solution – travel an hour away to Port Rexton, to the nearest Pre-K YMCA Daycare that had space available for him and work remotely nearby. If I didn’t have an understanding and accommodating employer, then this wouldn’t be an option. I would be left having to take a leave of absence from my job, like many have had to do in my situation.

The Invisible Work: Research and Scaffolding

Before my son was officially diagnosed, I immersed myself in research. I read books, listened to podcasts, consulted specialists, and implemented behavioral management techniques. I became an expert in my child’s needs because I had to.

And through this, I realized just how much scaffolding I do every single day—how much effort I put into helping my son navigate a world that wasn’t built for him. I hadn’t even known there was a term for it until recently, but it perfectly describes what so many parents like me do. We provide the supports, the structure, the preparation that allows our children to succeed.

I’ve had to become hyper-aware of every environment we step into, anticipating the challenges before they arise. Loud spaces like arenas, stadiums, and gyms mean packing noise-canceling headphones to help him cope with the overwhelming sounds. In chaotic settings—where whistles blow, people shout, and applause erupts—I rely on his iPad to provide a moment of calm amidst the sensory overload. If I know transitions will be hard, I bring a favorite toy, a sensory tool, or a plan to ease the shift. Every outing requires careful planning and backup strategies because regulation isn’t something that comes easily for him. It’s not about being overly cautious—it’s about making the world more manageable for my son. And when that scaffolding is in place, when he’s given the right supports, he thrives. What people often see—the smiles, the engagement, the participation—isn’t because he doesn’t struggle. It’s because we’ve worked hard, every single day, to help make things accessible for him.

A Spectrum of Needs and the Urgency for Change

We need better early intervention. We need real inclusion. We need accessible daycare. We need a system that doesn’t make parents feel like they are drowning while fighting for the bare minimum.

Autism Spectrum Disorder is just that—a spectrum. If you’ve met one person with autism, you’ve met one person with autism. Get to know them, try to connect in a way that reaches them. Learn how they communicate, understand their struggles with this environment. Keep in mind that autism isn’t a look. It’s a different way of experiencing the world. My son is brilliant, funny, and deeply loving. He sees the world in a way that most of us will never understand. As a parent, my only hope is that the world accepts, understands, and supports him. Please continue to teach your children kindness, curiosity, and ways to support differences. Model for them how to treat others with respect. 

For parents who are still in limbo, questioning their child’s development, comparing them to their peers, wondering what they should be doing—you’re not alone. The system makes it difficult, but your concerns are valid. Early intervention needs to happen earlier. No parent should have to fight this hard just to get their child the support they need.

To the parents still in the trenches—keep going. Reach out. Advocate. And if you need someone to talk to, I’m here.

To those in power—listen. Do better. Imagine if this was your child.

·        From a mom who understands the weight of the wait.

Melissa Cormier-Hewlett

The Waitlist - Melissa Hewlett