Christmas With A Child With Additional Needs: When The Magic Gets Harder To Hold On To.

An honest start.

It has been a couple of weeks since I last wrote a blog. There are a few reasons for that. We are working hard to get the My Penelope app out and released. We are in the middle of the Christmas period. There have been hospital appointments to juggle. Mostly though, I have been managing life and managing Penelope, and there has not been much space left for anything else.

This blog is an honest view of Christmas and, heartbreakingly, how it is changing for us. Each year it seems to become more of a battle to make it magical, and it feels important to say that out loud.

The golden Christmas we thought we would have.

We are a family of five. We have a beautiful, intelligent seven year old, a strong and determined five year old, and everybody’s baby, a two year old. On paper, we should be in the golden era of Christmas. These are the ages where the magic is supposed to be at its peak.

I have always loved Christmas. I really do believe in the spirit of the holiday. As a family we have always tried to make this time fun and exciting for our children. We love the little things: decorating the tree together, the excitement of advent calendars, watching Christmas movies under blankets, and of course, every parent’s worst nightmare, the cheeky elves and their late-night chaos.

In my head, this was the season where all three children would be swept up in the same magic. Instead, this year has taken a very difficult turn.

When autism and Christmas collide.

This year, Penelope just cannot cope. It feels as though her autism has stepped forward and raised its head in a way that makes almost everything about Christmas harder for her.

We are dealing with constant meltdowns, and they have become more aggressive and more violent over time. Seeing Penny attack her siblings and her mum is truly heart-breaking. You know she does not want to hurt anybody. You know she is overwhelmed and cannot cope with the size of her feelings. But knowing that does not make it easier when you are physically separating your children first thing in the morning.

Something as simple as coming downstairs to see what the elves have been up to every morning can tip her straight into overload. What is meant to be a moment of magic is, for her, sometimes just another unexpected change, another demand on her senses when she is already stretched to the limit.

School, which carries on trying to deliver all the “nice” Christmas events and changes to routine, becomes another battlefield. Concerts, parties, non-uniform days, noisy halls and timetable changes are supposed to create memories. For Penelope, they are often just too much.

The weight she is carrying into Christmas.

I know this is the reality for many parents of autistic children, but for us this year feels like it has come out of the blue. Penelope has never reacted like this before, at least not to this extreme. There are so many factors that might be feeding into it all.

She is now on two separate anti-seizure medications, Oxcarbazepine and Brivaracetam, because her seizures are still not under control. Her body is processing powerful medication every day. She is at school full time, which clearly exhausts her even when things are “normal”. On top of that, she has been given a CPAP machine because she has severe sleep apnea, so she cannot even find proper rest in her sleep.

Her right limbs are tightening, a sign of her cerebral palsy becoming more pronounced, and it is clearly causing her more pain and discomfort. She is tired, medicated, in pain, masked at night, overwhelmed by sensory input and expected to keep up with the demands of school and the chaos of Christmas.

When I stop and look at all of that together, I am not surprised she is having big emotions. I am not surprised her body and brain are crying out in the only ways they know how. Understanding that does not fix it, but it does make me fiercely protective of her, even when her behaviour is frightening and hard to manage.

The guilt we carry for our other children

The hardest part to admit is how all of this lands on our other children. Trying to provide the best Christmas experience for them while also managing Penelope’s needs is becoming increasingly difficult.

There are moments when our older child and our youngest are asked, without it ever being said out loud, to make sacrifices for their sister who cannot cope. They listen to screaming when they were expecting laughter. They are told plans have to change because things are too much. They adapt to an atmosphere that is tense and fragile when every advert and storybook is promising joy and calm.

There are times when it feels like they are meeting demands that, if we were completely honest, are not really acceptable for any young child. They are avoiding certain toys, staying quiet when they want to be noisy, giving up activities they would enjoy, all to keep the peace in an already high-stress household.

The guilt that comes with that is enormous. We know they only get one childhood. We know these are the years when Christmas is meant to be pure fun. When we cannot keep up the magic for them in the way we always imagined, it feels like we are failing them, even though we know we are doing everything we can with the situation we have.

That guilt sits alongside love. It sits alongside the pride we feel when they show empathy beyond their years, when they are gentle with their sister even after they have been on the receiving end of her frustration. But it is still guilt, and it is heavy.

Why we keep going and why we are building something from this.

Despite all of this, we keep trying. We keep putting up the tree. We keep doing the advent calendars. We keep trying the elves, even if it ends in chaos. We keep trying to balance what each child needs, even when the scales feel impossibly uneven.

As a family, we endure because that is what families do when they are built around a child with additional needs. We learn, we adapt, we cry in private and then we get up and try a different way.

My Penelope, the app we are building, comes from exactly this place. It comes from hospital appointments crammed into Christmas weeks, seizure logs scribbled on scraps of paper, and the exhaustion of trying to explain to professionals what life is really like at home. It comes from wanting to hold onto the details of what is happening to our child, even when our brains are fried and our hearts are sore.

We are not creating a product from a distance. We are creating something in the middle of all this, with a CPAP machine by the bed, medication bottles on the kitchen side and three children who need different kinds of care. That lived experience is at the core of everything we are trying to build.

You are not alone in this kind of Christmas.

If any of this sounds familiar, if you are reading this with a lump in your throat because your Christmas looks nothing like the ones on television, please know you are not alone.

You might also be watching your autistic child unravel at the sight of an advent calendar. You might be battling to keep seizures under control while everyone else is talking about late nights and parties. You might be negotiating with siblings who are trying to understand why everything feels so tense at a time that is supposed to be happy.

It is easy to feel like you are the only family who cannot keep up with the magic. The truth is there are many of us quietly doing exactly what you are doing: making hard choices, cancelling plans, lowering expectations, clinging to small moments of peace and wondering if that is enough.

It has to be enough, because it is what we have.

As always, we will endeavour, because that is what families like ours do. We may not manage the Christmas we once pictured, but we will keep trying to carve out moments of safety, comfort and joy inside the chaos. And if you are a parent dealing with the same things, please know that while your house might feel loud and lonely at the same time, you are not walking this road by yourself.