The Untold Stress Families Face When Raising a Child With Additional Needs.

A Father’s Raw and Honest Reflection on Loving a Child With Cerebral Palsy, Epilepsy and Autism.

When Family Life Begins to Break Under the Weight

There’s a kind of exhaustion that lives deep in your bones when you’re raising a child with additional needs — the kind few people ever truly see. It’s not just tiredness. It’s emotional heaviness, fear, responsibility, guilt, hope, frustration, and heartbreak all layered on top of one another.

If I’m honest, lately we haven’t felt like a “whole” family. Not because our love has faded, but because the pressure of daily life has stretched us thin in every direction.

Penelope’s epilepsy has worsened. She has cerebral palsy, autism, and a body that is constantly fighting its own battles. Her medication has been increased, and a second anti-seizure drug has been prescribed but not yet started. Every change brings uncertainty — you never know which side effects will appear, or whether this will help or make things harder.

The Battles Behind the Scenes

While we are managing Penny’s medical needs, we’re also dealing with a local authority that has issued an EHCP which is not only inadequate but unsafe. It makes no provision for her epilepsy at all. We’re heading to tribunal in January.....2027! to fight for the support she should have already had.

We are also still waiting for something as fundamental as a wheelchair, despite having had her assessment over a year ago. A year of chasing. A year of explaining. A year of watching her struggle unnecessarily.

School Exhaustion and Daily Meltdowns

Penny attends school full-time, and while her school is wonderful, it’s clear that full days are taking a toll on her. She comes home exhausted, overstimulated, and emotionally overwhelmed.

Most days she goes straight upstairs to her safe space and stays there until dinner. Evenings no longer feel like evenings. They feel like recovery missions, and our family routine has fractured around it.

Her siblings feel it too — the confusion, the strain, the love, the sadness. They are extraordinary children, resilient and kind, but it breaks my heart to see the emotional weight they carry.

When Big Plans Collapse Under the Reality of SEND Life

This weekend was supposed to be special.

We had a family photo shoot. We planned to go to the Christmas market — something we’ve done every year.

Instead, the weekend unravelled. Meltdowns, aggression, overstimulation, tears — from Penny and from us. Watching your child struggle is painful. Watching your other children struggle because of it is something else entirely.

The look in their eyes — wanting to enjoy the day but being pulled into the chaos — that’s the part that hurts the most.

The Invisible Weight SEND Parents Carry

There’s a loneliness in SEND parenting that is hard to explain. You carry fear for your child’s future, guilt over whether you’re doing enough, sadness when things fall apart, and a constant mental checklist that never quiets.

You want to give every one of your children the best of you. Some days, you just don’t have it to give.

That’s the truth people don’t see.

Why My Penelope Exists — A Father’s Need to Ease the Burden

My Penelope wasn’t created as a business idea. It was born from panic, from fear, from sleepless nights writing down seizures and meltdowns on scraps of paper. It was created because we were drowning in information we couldn’t organise, recall or evidence.

SEND parents already carry more than most people ever will. Remembering every seizure, every meltdown, every change in behaviour… it’s too much.

My Penelope is my attempt to ease a little of that load — for us, and for families everywhere.

Penelope’s story is painful and beautiful and messy and extraordinary. And it deserves to mean something. If this app can ease the burden for even one family, then everything we’ve been through will have a purpose.

To Every Parent Living This Life

If you see yourself in these words —If your family feels fractured…If your weekend fell apart…If your other children feel the strain…If you’re exhausted and grieving and hopeful all at once…

You are not failing.

You are surviving circumstances that most people can’t imagine.

And you are doing an incredible job.