‘God with us’ in a family with additional needs

In my early adult, pre children life, one of my favourite times of year was the bit between Christmas and New Year. There was no work, Christmas excitement had been and gone and there were days with no agenda other than things we’d put in.

That meant time with people we loved, making plans up as we went along, eating cake for breakfast and cereal for tea if we wanted and so many lie ins - a totally different experience to the rest of life and all the more glorious for it. For me it meant the chance to read lots, sit and be comfy and occasionally pop out or mooch. Bliss

As the parent of children with additional needs, in a household that celebrates its neurodiversity, what I have just described are the very things that would prove most difficult for them were we to try and incorporate them into our Christmas plans. Days with no plan or schedule or changes to mealtimes, days that feel nothing like the ‘ordinary’ of life are now great stressors for some of our children because the rhythm and routine is something that gives safety and structure.

Add to this the buildup in nursery or school which is full of often exciting but always disruptive plans and events, the cumulative effect of tiredness as children (and adults) manage all the changes and ‘excitement’ and you have the potential for Christmas to be the opposite of merry and bright.

However, there are others in our household who relish all this season brings, who love the addition of Christmas markets and Christmassy food and who love the thought of a day of Christmas movies. As adults trying to balance competing needs and wants it’s challenging at throughout the year, at Christmas, it’s even more so.

This feeling can be amplified because it’s the time of year where everyone ‘should’ be celebrating in particular ways. Social media paints a picture of movies by the fire with everyone snuggling, enjoying sharing snacks that have been homemade together and loving it. We can feel like we’ve ‘failed’ if our Christmas doesn’t look like that.

For most families who have those with additional needs and neurodiversity, Christmas won’t look like that, and success looks very different.

For those caring for others with complex medical needs, the timings for feeding, changing, giving medicine and more will be the same regardless of whether it’s Christmas Day or not. For those whose children need routine and structure, breakfast will likely be at the same time as ‘normal’ and feature the same food.

Part of the joy at Christmas is the explosion for our senses – sparkling lights, music flooding everywhere, smells, new tastes and more. For those with sensory processing challenges this is less magic and more overloading meaning more to try and manage and remain regulated in.

And there are so many other ways in which Christmas, in amongst the joy and memory making, can be super complex for families with children with additional needs in the mix. And managing all this, planning for it, doing enough in advance to ensure as much peace and regulation as possible increases the mental load for parents and carers already carrying a lot.

So, shall we cancel Christmas? Am I suggesting that as Christians we should do that? No I’m not.

Here are three things I’d say to other families raising children with additional needs:

 

1. Grieve and make space

It’s OK to grieve what can’t be this year that you’d love to be. It’s OK to grieve the loss of a duvet day with the whole family because it simply doesn’t work. In fact it’s important to feel in the midst of it all. Jesus came – God with us – and, as John 1 in the message version says, moved into the neighbourhood, not remaining distant or remote, but close, Emmanuel. Let Him draw near as you grieve.

And make plans and space for pockets of joy for you. What do you love to do? What’s a version of that you could do this year? How could you invite others to help you so you can have those moments for you too, so you can be fully present with your family and look ahead to your pockets of joy?

2. Comparison is the thief of joy

Turn off social media if you need to! Social media celebrates other people’s highlights (not always ‘real’ ones) and we compare them to our worst days. Nobody wins. We miss the opportunity to celebrate the little wins, the life we do have and the people we do get to live alongside. Let’s all agree not to shall we?

3. Let others in

We’re often not good at asking for other people’s support and help when there may be people who would love to support you and yours. To take one of your kids out for an hour to a park to run around may be relatively easy for someone but if it means you can have a coffee in silence, that could make all the difference.

And for those of you who aren’t raising children with additional needs, here’s a couple of things I’d love to ask you to do this Christmas time for those in your family, church and community:

1. Notice

Some of the most powerful times for me have been when someone has remembered me, not in a pitying way, but a genuine remembering of my family that comes from knowing them simply because they love us. Sometimes raising children with additional needs can feel really lonely – wouldn’t it be great if it was Christians and church community who reached out the most? Maybe there are people you can check in with this Christmas season to see how they’re doing, to ask about their family – it’s likely to be more impacting than perhaps you realise.

2. Ask

Maybe you’re able to go one step further than noticing alone – perhaps you have capacity to ask someone in your world what you could do for them this Christmas? Maybe you could have a few suggestions up your sleeve in case they can’t immediately think of something? Maybe you’ll have to be insistent (lovingly) until they accept some sort of help.

It’s easy to assume that people have it all together, and if we’re honest, most of us don’t. What if we took the call to being the body of Christ really seriously and reached out to do life with one another in the joy and the nitty gritty some more? What a witness to the world around us!

Oh, and in it all, for all of us, let’s continue to pray for and with one another. That this Christmas, for everyone, regardless of need, diagnosed or otherwise, that we would truly experience Emmanuel, God with us.