All of the different things that Christmas brings can be really hard for children with special needs to cope with.
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 a parent of a child with special 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.
Christmas can be a challenging time for families who have a child with special needs any year, but this year it is looking like Christmas will be unlike any that we have ever known or experienced in our lifetimes.
All of the different things that Christmas brings can be really hard for children with special needs to cope with. Whether it is at school, home, or other activities, everything is different as we enter nativity season, 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 special needs struggle with all of that and it can make Christmas a really unsettling time for them.
The expected restrictions this year, though lighter that they have been during lockdown, will limit the number of people that we can invite or go to visit, which could be a help to children who struggle to socialise, or indeed to leave the house, however…
It will be hard to escape the social media posts of friends and family who are still having whatever the ‘perfect’ Christmas looks like this year, while we’re just trying 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 our 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”!
Here’s something that as special needs parents we need to do, but the future can be hard and uncertain. We plan for our child’s future, whether it is short-term as they go through school, or long-term as we explore what options there might be for them to live an independent adult life.
Perhaps the time in the future that we are most reluctant to look to is that time when we are no longer here to protect, provide for and advocate for our child. That’s a place that’s hard to look to, but we can’t ignore it, we can’t hide from it, we have to plan and prepare for it to give our child, whatever age they are at that point, the support they need.
Or maybe the time in the future we find it hard to look to is when our child with a life-limiting condition or disability will no longer be with us; again, a hard place to look to, but are we doing all that we can to make sure that that time as gentle and peaceful and loving for our child and for us as possible?
We can end with a more positive note from the lyrics to this song. Christmas is still coming, but we have time to make it what works best for our family.
We’re never going to compete with the ‘Hello’ magazine Christmas crowd, in some ways I’m not even sure I’d want to, but we can make Christmas special for us, for our family, in our own way, even if that is very simple.
If a successful Christmas means having chicken nuggets and alphabetti spaghetti for dinner then so be it! If it means no lights, but we spend time together making some decorations then that’s OK. If it means watching DVD’s of Thomas The Tank Engine all day long instead of Mrs. Brown’s Boys and Call The Midwife, then I’m in!
And as for the future? We that can wait until the New Year can’t it? It will still be there, waiting for us, but for now let’s just focus one day at a time.
And if you can, if you’ve found yourself on the ‘Good List’ this year, and Tesco tell us we’re all on it 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 if, like me, you have a faith, spare a thought for the true meaning of Christmas and give thanks for the birth of that very special Bethlehem baby. After all…
Mark Arnold, Director of Additional Needs Ministry at Urban Saints. Arnold blogs at The Additional Needs Blogfather. This article was re-published with permission.
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