People might feel sympathy for Millie and me. There’s one thing I wish they knew
For a doting parent, the first weeks of school for a child with additional needs take on their own special focus.
By Tatyana Leonov
When my youngest daughter, Millie, laughs, it’s a deep, almost belly-laugh, as if her whole body is in on the joke. Her hearty giggles burst in joyful waves, filling the room and drawing everyone’s attention. She finds great delight in the smallest things: the clang of a spoon hitting the floor, the crash of a toy tumbling from a table, a bubble popping … even herself passing wind. Her laughter is even louder when she’s the one making the noise, eyes squeezed tight with unfiltered joy.
Laughing is one of the better-known traits of Angelman syndrome, a rare neurogenetic disorder that disrupts typical messaging in the brain. A single missing gene leads to the absence of a vital protein needed for proper brain function, affecting motor skills, speech and cognitive development. For reasons that are still unclear, it also brings frequent smiles and laughter, sometimes for no obvious reason at all.
Mum and Millie: There’s one thing the author wishes she could tell people who might “glance our way and feel a pang of sympathy”.Credit: Jacqui Turner
Millie started school last month, and one of my biggest concerns was, and still is, that her happy demeanour would be misunderstood. She’s often cheerful, but her laughter isn’t always a sign of joy – it can also be a response to discomfort, uncertainty or even pain. And that’s just one of the many worries swirling in my head. Does she like school? Will she make friends? How does she make her needs understood? People living with Angelman syndrome are usually non-verbal, and while some learn to communicate using an augmentative device – such as an iPad app with symbols to tap for words – we’re not at that stage yet with Millie.
Starting school is a huge milestone for any child, and this was round two for us, but it was vastly different from when our eldest began. On Millie’s first day, there was no skipping through the gates with an oversized backpack dwarfing her small frame. No nervous chatter as she hurried off to make new friends. No excited waves from the classroom door. Instead, we wheeled her into the school and helped her out of her chair to walk into the classroom. She hesitated at the entry, gripping my hand tightly as I felt her whole body stiffen with anticipation. When one of the teacher’s aides knelt down and held out a small toy that looked perfect for squeezing, Millie’s fingers uncurled slightly.
The school that Millie is attending is designed for children with multiple and complex needs, and they are taught both life skills and academics. Officially known as Schools for Specific Purposes (SSPs), these learning environments defy simple labels, each offering a unique space for growth. But it can feel overwhelming at first. The first time I visited the school, the sight of so many wheelchairs and mobility aids was confronting. When your child is little, a disability isn’t as noticeable, but as they grow, the differences become more pronounced.
We’re not sure if Millie will ever learn to run, but she’s recently learnt to walk unassisted for short distances. Her legs, stiff like little poles, carry her forward with a wide, unsteady gait – like a baby bird that’s just left the nest, teetering, unsure, but determined to move forward. Each step is careful, almost calculated, as if she’s still figuring out how her body works. And she is. Balance is a hard-won skill for those living with Angelman syndrome – and not everyone with the condition learns to walk.
On her first day of school, Millie worked out how to walk to the trampoline in the playground, tapping it to show she wanted to climb on. Now, she walks across the entire school, with breaks to sit. Each time she is able to cover a little more distance, her face radiating with glee, as if she’s still surprised that she can do it. When someone claps and cheers her on as she navigates an entire hallway with her hands hovering in the air, resisting the urge to steady herself against the walls, her smile is as wide as the Cheshire Cat’s.
This sense of accomplishment follows Millie beyond the school gates. People might glance our way and feel a pang of sympathy, but I wish they knew: this beginning – the start of her school journey – is hers. It’s not defined by what she can’t do, but by everything she is capable of. And if they saw her on the trampoline, belly-laughing at the sheer joy of movement, they’d know what I mean.
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