Additional Needs

Christmas as a Special needs Family

Posted by Ceri-Ann Brown on 13th December 2017 Additional Needs, Disabilities

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All over the world people are scurrying around at every spare moment they have to decorate their trees, buy their presents, and get it all wrapped.

I feel like I am still finding my feet when it comes to the whole Christmas thing as a mum.

As a child Christmas is quite literally one of the most exciting things ever.

Each year you become more aware of the traditions and magic and immerse yourself in a world of chocolates, parties and presents with the ones who matter most.

When I knew I was going to be a mum one of the first things I got excited about was how Christmases were about to change forever.

As an adult, for me at least… Christmas can be a bit expensive and inconvenient.

I love getting to see my family, eating the tasty food, and attending various social events; I even love the pretty decorations and cosy nights in.

Having a child re-ignites that love of Christmas and evokes a deep nostalgia from your own childhood.

I am still determined that one she day agrees to watch a feature length Disney film with me and all of the Christmas classics!

For now I will continue to accept the same few episodes of Dora and Friends. The girl knows what she likes.

Accessibility to Christmas events remains an issue and as time goes on I am becoming more vocal in ensuring that any activities for children at Christmas are wheelchair accessible and that staff involved are aware of additional needs.

I still find it a shame that a lot of the Santa's grottos involve presents that are food when my child is tube fed... though this year we do actually have a chocolate advent calendar just so that she can have a little taste on the tip of her tongue.

Christmas markets aren't easily navigated with a wheelchair and stressed out shoppers have little patience for letting you through busy aisles.

At this time, internet shopping is my friend as is well timing our trips out to avoid crowds!

This year will be our daughters’ 4th Christmas.

The more I think about Christmas the more I see what an abstract concept it must be for a child to understand; especially when that child is severely neurologically impaired.

I am not sure she knows who father Christmas is… though she has been known to pull on his beard on occasion. She certainly doesn’t understand the story of Jesus’ birth and who he was.

Or maybe she does? So much of this is a guessing game for all of us.

She is an incredibly bright little girl and very aware of what is going on around her, but sometimes her being non verbal leaves me wondering what is going on in her head.

I imagine there are a lot of parents out there like me who wonder how Christmas will be in the future. This year we are very much still on “baby” toys.

I made it clear in some of my posts last year that if the child enjoys a toy it doesn’t matter at all what age or gender it is intended for. If it makes her happy, then that’s all I care about.

I do wonder how things will be 5 years from now, 10 years from now, and so on. I wonder what kind of presents we will be buying?

One of the hardest parts about shopping for presents is seeing all of the “developmentally age appropriate” toys for her age group.

I hate seeing scooters, or dolls houses… things that require you to be physically able and to also have fine motor skills.

I am so grateful that she gravitates to electronic toys with large buttons. It’s almost as if she knows her own limitations and knows exactly what she can access and enjoy.

It makes me so proud. But it also makes me worry for future enjoyment.

My favourite thing about my little girl is when I imagine what her Christmas list would be.

If we looked at everything that brings her joy and wrote it into a list… none of those things are material possessions, and in that I think there is a big life lesson.

Number one on the list would be being around all of her favourite people (family and close friends), after that would be very physical interaction such as being swung and thrown around by her daddy.

(It makes me cringe horribly and I know from a physio perspective it is far from ideal… but when you see that absolute delight and hear those squeals of excitement... you’d want to swing her around too!).

After that would be a trip out somewhere, even just to the shops to walk around looking at things. Watching videos, listening to music. These are all what she would have on her list.

Toys always factor in at some stage, but she really does want great human interaction, patience, fun, and kindness. Which is essentially what most of us want I think.

Sometimes I wish she was that child begging me to buy her a new toy in the shop, or that she were able to write up a comprehensive list of all of the latest trendy toys she wants… but in reality, I couldn’t be more proud of her attitude towards life and her thirst for sensory entertainment.

I know that as time goes on my approach to the present buying will have to be more inventive and that I need to try and encourage her to experience as many different things as possible, but right now being led by her seems to be working well for us.

For example we recently tried going to the cinema. We had to leave with in about 15 minutes as she got so distressed.

I was thinking that this would be an amazing hobby as all you need to do is be in your wheelchair and watch and enjoy. But maybe it was the wrong film, the wrong day, or just too soon, I don’t know.

As I left a group of little girls walked beside a lady who said “Are you excited for the cinema, girls?” to which they joyously responded “yeahh!!” with woops and cheers.

I got in the car, slumped back in my seat and had a good long cry at how different our world can be and some of the challenges we face together.

But then we went home, cuddled up on the sofa, and watched the pirate episode of Dora for probably the 200th time. And it was awesome.

Have an amazing Christmas everyone.

Also a shout out to some of my closer friends who have been in hospital now for a good few months, I hope to whatever is out there that you are all out for Christmas.