Yes, really — take a breath. I know that sounds like such a simple thing, but in the days and hours leading up to our child’s diagnosis, I realized I hadn’t truly breathed in weeks. My chest was tight, my stomach knotted, my heart heavy with fear of the unknown. It felt as though I had been holding my breath, waiting for someone to hand me an answer that I both desperately wanted and deeply dreaded.
And then, the words came — the diagnosis. Even though some part of me already knew, deep down in the quiet places of my heart, hearing it spoken aloud still knocked the wind out of me. It was as if the world paused for a moment, shifting under my feet.
I had known my child was different — beautifully, uniquely different — long before anyone gave it a name. Still, having that label in black and white made everything suddenly feel more real, more permanent. It brought with it an avalanche of questions, fears, and what-ifs.
If you’re in that place right now, I see you. I know how heavy your chest feels, how the tears sneak up on you when the house is quiet, and how your mind races at night, trying to understand what the future might look like. So please — breathe. You are not alone.
Becoming Part of the Team
In the days and weeks that follow, you’ll meet a team of professionals — therapists, specialists, educators, advocates — all dedicated to helping your child thrive. There will be assessments, evaluations, and endless discussions about therapy hours, interventions, and goals. It can feel overwhelming, as if everyone else suddenly knows what’s best for your child.
But here’s something I wish someone had told me at the very beginning: you are part of that team, and not just a small part — the most important part.
You know your child in ways no one else ever will. You understand their laughter, their silence, their signals of joy or frustration. You’ve held them through their meltdowns and celebrated every small milestone that others might overlook. You are their voice in the room, their safe place, and their fiercest advocate.
So listen to the experts, yes — their knowledge can be invaluable. But also trust your instincts. If something doesn’t feel right, speak up. If something feels too rigid or too much, say so. Never let anyone diminish your insight just because you’re “only” the parent. You are the heart of this entire process.
Our Experience with Therapy
When my child was first diagnosed, I was told she needed 35 to 40 hours of Applied Behavior Analysis (ABA) therapy every week. I was told this was the gold standard, the best route for progress. And for some children, it absolutely is. Many families have seen beautiful outcomes through that level of structured support.
But for our family, it didn’t work that way. My daughter was 3½ years old, spending nearly 40 hours a week in therapy — plus preschool, plus at-home speech and occupational therapy sessions. She was exhausted. She cried before sessions, clung to me when I dropped her off, and her little spark — the one that made her so bright and curious — started to fade.
I realized she didn’t need more hours. She needed time to be a child. She needed space to rest, play, and simply exist without constant correction or performance. She needed time with me — not as her therapist, but as her mom.
So I gathered her team, took a deep breath, and said, “We’re cutting the hours in half.” It wasn’t an easy conversation. Not everyone agreed at first. But I stood firm. And slowly, they understood. It turned out to be the best decision we could have made for her well-being — and for our family’s peace.
That doesn’t mean it’s the right choice for everyone. Every child is different, and every family’s balance will look unique. The point is: you get to decide what works best for your child. You always have a say.
Navigating School and IEP Meetings
When it comes time for school planning — the IEP meetings, the accommodations, the supports — remember that those tables are meant to be shared. You have a right to be there, to speak up, to question, to pause.
And when the meeting ends, if you’re feeling overwhelmed (and you probably will), remember this: you don’t have to sign anything right away. You can take the paperwork home, read it again, process what was said, and make decisions once you’ve had time to breathe. There is no rush. Your voice matters.
Finding Strength in the Hard Moments
There will be moments that test every ounce of your strength — nights of no sleep, moments of frustration when communication breaks down, days when it feels like all the progress you’ve made has slipped away. There will be tears and doubts and days when you wonder if you’re doing enough.
In those moments, remind yourself to breathe.
Reach out to someone who understands — another parent, a friend, an online community, a support group. There are people out there who have walked this path before you, and they will be there to lift you up when you feel like falling apart. Find your people and hold them close.
And please, give yourself grace. You are learning, every single day. It’s okay to not have all the answers. It’s okay to cry, to question, to stumble. Darkness will come sometimes, but you will always find your way back into the light. And when you do, you’ll realize that every challenge you’ve faced has made you stronger than you ever imagined.
Discovering Beauty in the Journey
Somewhere along the way, you’ll start to see beauty where you never noticed it before — in the tiny victories, in the quiet moments of connection, in the way your child smiles when they accomplish something that took weeks or months of effort. You’ll find yourself celebrating things that others might overlook — a new word, a shared glance, a moment of calm after chaos.
And those moments? They’re not small. They’re monumental. Every step forward, no matter how tiny it looks from the outside, is a triumph worth cheering for.
You’ll learn to slow down, to live more presently, and to appreciate the little things that make up a big, beautiful life. Your child will teach you how to see the world differently — with more patience, more compassion, and more wonder than you ever thought possible.
So take their hand. Follow their lead. Their path may not look like the one you imagined when you first became a parent — but it’s still full of laughter, learning, and love. It’s not an easy road, but it is an extraordinary one.
You’ve Got This
You will find strength you never knew you had. You will grow into a fierce, loving, determined advocate. You will stumble, and then you will rise, over and over again.
This journey will change you — not because of what’s been lost, but because of what you’ll gain: perspective, patience, courage, and an unshakable love that only deepens with time.
So, to the parent standing at the beginning of this road: take a breath. You’ve got this. You’re doing better than you think. And one day, you’ll look back and realize that while the path was different than you expected, it led you somewhere beautiful — right into the heart of your extraordinary child.