“So here it is, merry Christmas”

This time of year, it’s hard to escape from the deluge of Christmas tunes, whether it’s on the radio, in shops, in TV adverts, the same old songs are everywhere. Probably the most recognisable is that 1970’s classic from Slade, ‘Merry Xmas everybody’…

Hearing it again for the millionth time today, the chorus of the song broke through to me and I heard the familiar words in a different way; I heard them as if they applied to a family with a child with additional needs.

“So here it is, merry Christmas,

Everybody’s having fun.

Look to the future now

It’s only just begun”

I shuddered. It evoked a physical reaction in me as I pondered on those words, words that I have heard and even sung so many, many times, but had never considered in this way before. Words that suddenly, unexpectedly, stopped me in my tracks as the new meaning that had now been revealed to me through them sunk in.

“So here it is, merry Christmas”

Christmas can be a challenging time for the families that we are journeying with who have a child with additional needs in any year, but this year it is looking like Christmas will be really difficult as the cost-of-living crisis bites deep. Families with children with additional needs are statistically far more likely to be struggling financial anyway, and the current crisis will tip many of them over the edge. 

All of the different things that Christmas brings can also be really hard for children with additional needs to cope with. Whether it is at school, home, church or in other activities, everything is different as we enter Nativity season: we transform our houses into Blackpool illuminations, see people that we might only see once a year, eat different food, even the TV schedule is totally different. Many children with additional needs struggle with all of that and it can make Christmas an unsettling time for them.

“Everybody’s having fun”

It will be hard for additional-needs families to escape the social-media posts of friends and family who are having whatever the ‘perfect’ Christmas looks like this year, while additional-needs families just try to survive the day with everybody still alive at the end of it.

Coping with meltdowns, trying to make it a special time while recognising that their children would perhaps rather it was a familiar day of routine with no changes, while seeing photos of friends that look like they are having a Hello magazine Christmas, can be draining.

It most certainly doesn’t seem that “everybody’s having fun”! Families need our support at this time, to know that we see them, we hear them and we’re there for them when it all gets too much.

“Look to the future now”

Here’s something that additional needs parents need to do, but the future can be hard and uncertain. They plan for their child’s future, whether it is short term as they go through school or long term as they explore what options there might be for them to live some kind of an independent adult life.

All of this can appear very different to what most families experience. Or maybe the time in the future they find it hard to look to is when their child with a life-limiting condition or disability will no longer be with them. Again, this a hard place to look to, but are we doing all that we can to journey with families when they are in these tough times – times when they really need to know that their church family is in there with them, supporting them, even grieving with them.

“It’s only just begun”

We can end with a more positive note from the lyrics to this song. Christmas is still coming, a time of hope and expectation, a time when love was born in difficult circumstances, and we have time to help make Christmas work as well as possible for the additional needs families that we journey with.

We’re never going to compete with the Hello magazine Christmas crowd. In many ways I’m not even sure I’d want to, but we can help make Christmas special for our additional-needs families, in our own way, even if that is very simple.

If a successful Christmas dinner for them means helping them have chicken nuggets and alphabetti spaghetti then so be it! If it means no Christmas lights, but we spend time together with them making some craft decorations, then that’s OK.

If it means sitting watching DVDs of Thomas the Tank Engine with them instead of Mrs Brown’s Boys and Call the Midwife, while their family get some much-needed respite, then I’m in!

Here’s three more top tips that we can do as children’s, youth and family workers to help children with additional needs and their families during Christmas.

1. Try to keep to as much of a standard routine as possible. Make sure that there are familiar things in each session or service that you run that can help give them as much of their typical routine as possible.
2. Help them know about any changes, special visitors, parties etc in advance. Give them a visual timetable for the service, session or event (using images, symbols, whatever works best for them).
3. Give them a ‘safe place’ they can use if they are overwhelmed, maybe a sensory calming gazebo set up for them, or a dark den or tent, with ear defenders, fidget toys, blankets and cushions. If they are struggling to cope with sensory overload, lots of change, too much social interaction etc, then they can use their safe space to recover.

And as for that future? Well, that can wait until the new year, can’t it? It will still be there, waiting for us and the families we journey with, but for now let’s just focus one day at a time. You’ve got this and so has God. And if you can, if you’ve found yourself on the ‘good list’ this year, then try (I’ll whisper it quietly) try and get a few minutes (OK, maybe seconds…) to look back at the year gone by and despite all the really hard stuff, give yourself a little pat on the back for making it through another year and keeping the additional needs families you journey with along with you. After all…“IT’S CHRIIIISTMAAAAAS!”