I didn’t plan to write this to be inspirational. This isn’t a story neatly tied up with silver linings or lessons learned. It’s a piece about the reality of raising a disabled child in South Devon, the isolation, the constant fight, and the quiet grief that lives alongside love.
Most days, I put on a brave face. Parents like me get very good at that. We smile, we say we’re coping, we thank people for asking. We do it because the truth makes others uncomfortable, and because explaining our reality over and over again is exhausting. Strength becomes an expectation rather than a choice.
The Isolation No One Talks About
Life with a disabled child is incredibly isolating. Friendships fade when spontaneous meet-ups are no longer possible. Playdates disappear when your child’s needs don’t fit neatly into other families’ routines. Invitations stop coming — not always out of cruelty, but out of uncertainty or discomfort.
You can feel alone even in busy places. At toddler groups, school gates, birthday parties, you stand surrounded by conversations about milestones your child hasn’t met and may never meet. First words. First steps. Independence. These moments become quiet reminders of what’s missing.
A System That Feels Impossible to Navigate
Services are scarce. Waiting lists are endless. Support feels fragmented and inconsistent, often dependent on postcode, persistence, and how loudly you’re able to shout, even when you’re already exhausted.
Funding is a constant battle. Every application feels like you’re being asked to justify your child’s existence, to prove their needs are “severe enough.” Support is not offered; it’s fought for. And often, by the time help arrives, families are already burnt out.
Finding a suitable school can feel like an impossible task. Mainstream settings may lack the resources or understanding to support your child properly, while specialist placements are limited and oversubscribed. Parents are left carrying the fear: Will my child be safe? Will they be understood? Will they be allowed to be who they are?
Accessibility Isn’t Just About Ramps
Accessibility in the community is about more than physical access. It’s about understanding, flexibility, and inclusion. It’s about having activities that welcome children who don’t fit the expected mould, and spaces where families don’t feel judged or unwelcome.
Too often, we are met with stares, assumptions, or silence. Behaviour is misunderstood. Needs are minimised. The burden is placed on parents to explain, educate, and advocate…endlessly.
When You Need a Hospital and No One Knows Your Child
One of the hardest realities is how little knowledge there can be when you’re unfortunate enough to need hospital care. You assume that medical settings will understand disability but often, they don’t understand your child.
You become the interpreter, the advocate, the constant presence ensuring your child’s needs aren’t overlooked. There’s little room for rest when you’re afraid that stepping away might mean something important is missed.
Grief and Gratitude Can Exist Together
There is a loss that comes with raising a disabled child. It doesn’t mean we don’t love them fiercely. It doesn’t mean we aren’t grateful for who they are. But it does mean we grieve – for the life we imagined, for the ease others seem to have, for milestones that pass us by.
And that grief is constantly reopened. At every birthday. Every school year. Every comparison that was never invited but always arrives.
So when people tell us we should focus on the positives, or say things like “everything happens for a reason” or “they’re here to teach you something,” it can feel like a slap in the face. Positivity, when imposed, becomes dismissive. It silences the reality instead of acknowledging it.
The Hard Truth
The hard truth is this: love doesn’t make things easy. Strength doesn’t mean it hurts less. Gratitude doesn’t cancel out grief.
Families like ours don’t need platitudes. We need understanding. We need properly funded services. We need inclusive communities. We need systems that work with us instead of against us.
And sometimes, we just need permission to say: this is hard, without being told how we should feel about it.
If this piece makes you uncomfortable, that’s okay. Discomfort is often where understanding begins.
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