Have you ever experienced a moment so intense that it felt surreal? That was my son's birth, he came into the world screaming, literally. He was an unexpected home birth, and it was a blur of panic, instinct, pain, and euphoria. When he arrived, he let us know. The midwife, calm and seasoned from 30 years of births, looked at me in surprise and said, “I’ve never heard a baby cry like that the moment they were born.”
It wasn’t just crying, it was wailing. Fierce, guttural, and heart-piercing. He cried so hard that I often strapped him into the car and drove to A&E, sure he was about to internally combust. He would fall asleep before we arrived.
As a baby, he was intensely sensitive. Light, sound, texture, all of it seemed to reach him louder and stronger than it did for other babies. He hated laying on his back. He’d flail and cry as if something invisible was crawling under his skin. Routine became essential, not for me, but for him. If we veered even slightly off course, the day would fall apart.
Everyone said he would grow out of it. I didn’t believe them. Not because I didn’t hope he’d find comfort in his world, but because I could see even then that this wasn’t a phase. It was how he was wired.
I flagged my concerns to the health visitor and the GP several times as a baby and a toddler. Mainly due to his positive eye contact, the professionals were not concerned. My son is now 9. He still doesn’t officially tick enough boxes for a diagnosis or for support. However, there is no denying that something is different. He feels more, needs more, reacts more.
That’s why I’m writing this blog. Because this “in-between” space, where your child doesn’t qualify for help but clearly needs it, can be incredibly lonely. It’s the space of hearing, “He’s fine at school,” while you absorb the aftershocks at home. It’s having referral and referral rejected and sitting in front of professionals who say, “Let’s monitor and reassess in six months,” when you’ve been monitoring for years already.
This blog isn’t about chasing a label. It’s about creating a space for stories like ours, stories that don’t fit into neat checklists but are real and raw. It’s for parents who live in the margins, who are told their instincts are overreactions, or that “nothing’s wrong,” even when their whole life says otherwise.
I’ll be sharing our story. Not with tidy conclusions, but with honesty. I want to speak the parts of this journey that are often invisible. The exhaustion, the second-guessing, the beauty, the guilt, the impact on the rest of the family, the deep love, and the long wait for understanding.
If you’re walking this same road, I want you to know you’re not alone. My son is not broken. He doesn’t need fixing. He just needs understanding, space, and support, like every other child.
Let’s begin.
I can understand your experience. My son, too, was born screaming almost 50 years ago. It was trial and error and second guessing what was wrong. It's a journey where we have had to put our own ideas of what parenting this particular child would be like and begin learning a whole new 'language'! And, it will bring so many positive, joyous experiences.