Navigating Autism: Our Family’s Heartfelt Journey of Awareness, Acceptance, and Hope

This is a deeply personal post, a confession of sorts, one that has been stirring in my heart for a long time. While this blog often celebrates food and daily life, today, I want to share a profound and integral part of my world: our journey with Autism.

Especially today, on World Autism Awareness Day, it feels more important than ever to open up. Autism isn’t just a topic I’m aware of; it’s woven into the very fabric of my existence, touching my family, shaping my days, and residing firmly in my heart.

Meet Max: Our Sweet Boy and His Unique Path

This is my son, Max.

Max has Autism. But that’s just one facet of who he is. He’s also incredibly sweet, possesses a wonderful sense of humor, and has a smile that can absolutely melt my heart. Yet, Autism is an undeniable presence, and it comes with its own set of challenges that are undeniably difficult.

The Unexpected Turn: Early Milestones and Fading Words

Our journey to this point has been quite a winding road. For Max’s entire first year, he not only met all his developmental milestones but often surpassed them. I recall a beach vacation when Max was just five months old; we fully expected him to be content sitting under an umbrella on our beach blanket. Instead, he was crawling with surprising speed across the sand! There were no concerns with his smiles, sitting up, walking, or even a good amount of babbling.

But then, slowly, subtly, the light began to dim. It happened gradually over time, and a part of me wishes every day that I could revisit those moments, to truly see what I missed, what I should have recognized sooner. The signs, in hindsight, were all undeniably present.

We started to notice a loss of previously acquired words. What was once clear babbling and even early words began to recede. New, obsessive behaviors emerged, accompanied by tantrums that escalated beyond typical toddler outbursts. Our once happy, calm boy seemed perpetually angry.

My sweet boy, who once greeted me with joyful hugs at the door after work, would now cry when I returned home. It was heartbreaking, and confusing. Yet, during those months, our lives were also riddled with other major stressors. Max was constantly battling illnesses, leading us to pull him from daycare and hire a nanny after a severe infection required hospitalization. My husband and I were taking so many days off work that year that we genuinely feared for our jobs.

Perhaps it was easier to attribute all these changes to his recurring sicknesses. In our exhaustion and worry, we reasoned that his developmental regression and behavioral shifts were a side effect of his physical health struggles. Looking back, the clarity of hindsight is a cruel companion, reminding me of all the puzzle pieces that were right in front of us.

Seeking Answers: Navigating Doubts and Advocacy

What complicated matters further was the lack of concern from others. Friends, grandparents, his nanny, and even his pediatrician seemed reassured. When I filled out the M-CHAT, a standard Autism screening tool for toddlers, and a few questions clearly indicated potential red flags, I was still told that everything was likely fine. I had to strongly advocate to even receive a number for early intervention services.

Oh, how I wish I had made that call the very same day. Instead, I hesitated. I doubted my instincts, questioning whether something was wrong with me for even thinking such a thing. It took until Max was 20 months old before I finally had early intervention specialists come to our home for an evaluation.

By that point, things had become incredibly difficult. I was counting the hours until the Early Intervention (EI) team arrived, feeling completely overwhelmed. This was my second child, yet I felt utterly lost, unsure how to parent him through these complex challenges. The moment they detailed the extensive services Max would require, and presented me with a wealth of information about developmental delays, I knew deep down what was coming. The certainty of an Autism diagnosis settled heavily in my soul.

That day, the one where those compassionate women stepped into my home, was arguably the hardest day of my life, even though the official diagnosis wouldn’t come for another year. I was paralyzed by fear, and the tears seemed endless. Yet, it was also a truly pivotal moment in our journey. I know now, with absolute clarity, that those women, those early interventionists, saved us. They provided a roadmap and the first glimmer of hope.

A Path to Acceptance and Progress

By the time his developmental pediatrician finally uttered the words, “Max has Autism,” I had already navigated through many stages of grief. I was well on my way to acceptance, armed with knowledge and a burgeoning sense of purpose. Crucially, Max was not just surviving; he was thriving.

We had already embarked on a year of intensive therapy with the most incredible team of dedicated therapists. In a bold move, I made the decision to quit my job to fully focus on Max’s treatment and well-being. We also implemented significant dietary changes, going gluten and dairy-free, a decision that seemed to lift a fog. Max began to find his words again, building an impressive vocabulary that surprised us all. He started making eye contact, looking at us, connecting. He was happier, more engaged, and we, as his parents, began to truly learn how to help him navigate his world.

Ongoing Challenges and the Unexpected Role of This Blog

Of course, our journey isn’t without its ongoing challenges. We still face many, and life can be incredibly demanding. But as I write this, I am profoundly reminded of just how far we have come, celebrating every small victory along the way.

I feel like I’ve only scratched the surface of everything I want to convey, every thought and emotion swirling in my head. There’s so much more I wish to share, perhaps enough to warrant starting a dedicated second blog entirely focused on this aspect of our lives. But for now, I am simply immensely grateful that you’ve allowed me this space to pour out my heart.

You, my dear readers, need to know this: this blog has been an unexpected lifeline, saving me in countless ways. After quitting my job, my days became completely consumed with therapies, managing anxiety, addressing aggression, navigating endless doctors’ appointments, understanding sensory dysregulation, making countless phone calls, researching tirelessly, handling tantrums, and constantly redirecting. My nights are often spent awake in my son’s room, as we are still working on finding consistent sleep for him.

It has been a relentless battle not to let Autism completely take over every corner of my world, to retain some sense of self amidst the intensity of special needs parenting.

This blog, and the wonderful community of all of you who read it, entered my life at precisely the right moment. For that, I offer my deepest gratitude. You will truly never know how much your support and presence mean to me.

Empowering the Autism Community: A Call to Action and Support

As I said, I could continue sharing our story indefinitely, but I will conclude here with a few vital messages, just in case that second blog never materializes. These are lessons learned from the depths of our own experience, offered with love and hope:

For Parents Questioning Their Child’s Development:

If you are out there, questioning whether your child might need help, I implore you: take action now. Trust your gut. You are strong, capable, and you can do this. If necessary, bypass your pediatrician and seek a direct evaluation. Early intervention is incredibly critical, and nothing negative can come from seeking more information. The sooner you understand, the sooner you can provide the support your child deserves.

For Those Caring for a Child with Special Needs:

To every parent and caregiver of a child with special needs, I see you. Your strength, resilience, and unwavering love are truly remarkable. Now, go find your tribe. Join a support group—even an online one if getting out is difficult, as I know it often is. Just a few months ago, I serendipitously met the most wonderful group of Autism moms, and it has genuinely changed my life. Never underestimate the profound power of a strong support system. And please, remember to take care of yourself; you cannot pour from an empty cup.

For Friends and Family of Special Needs Parents:

If you know someone with a child who has special needs, especially those newly diagnosed, I understand it can be challenging to know what to say or do. Keep it simple, but make it genuine. Say, “I’m here for you,” and truly mean it. Send a text to check in. Drop off a warm cup of coffee. Prepare and deliver a meal. These small, thoughtful gestures will go an incredibly long way, I promise.

For All the Amazing Kids with Autism, Like Max:

And finally, for all the sweet, incredible kiddos like my Max, who are working tirelessly, day in and day out, to navigate a world not always built for them—you are the real heroes. Your resilience, your unique perspectives, and your strength inspire us every single day. Keep being amazing, keep pushing boundaries, and keep showing the world all you can do.

Much love, my friends.

xo

Photo credits to the incredibly talented Kristen Burrell Photography.

More Updates on Our Autism Journey:

• Our Autism Story – 2018 Update
• Our Autism Story – 2019 Update
• Our Autism Story – 2020 Update