Guest Blog Post – Christmas, Autism & My Family by Kizzi from AWARE’s BEAT Team

Festive Deep Breaths, Mamma
(**and Daddy/Carer/Sibling/Family Members).

I wanted to write this one as, I’ll be honest, I still find this time of year difficult. I figured it’d be cathartic if nothing else but I hope it might be helpful too…

Firstly, I LOVE Christmas…like REALLY love Christmas, ‘give Mrs Claus a run for her money’ type of love Christmas! Because of this I think perhaps I put too much pressure on myself to make Christmas amazing for our family and, well it doesn’t always come off that way. I think I try to recreate the magic of my childhood and my Christmases. I want the children to experience that magic. When I think of my Christmases I think of my Gran taking us all to the pantomime on Christmas Eve, lobbing foam bricks at the baddies, shouting “He’s behind you” as loud as I could then going back to her house for a Christmas Eve party with all of my Aunties, Uncles and Cousins. She put so much thought and effort into Christmas for us all.

I think of walking back to our house, avidly searching the skies for a glimpse of Santa’s sleigh. I think of our new pyjamas that Mum and Dad would always get us for Christmas eve! I think of my Nanna and her tradition of baking Christmas cakes for the whole family and her famous chutney that we’d all fight over and her being adamant that she MUST order a ‘Stand Pie’- what even is that, I still don’t know? A massive pork pie? Someone will tell me I’m sure! I remember my Aunties and their mad Christmas jumpers, my Dad driving up the drive with a Christmas tree on the roof, him meticulously painting the windows with fake snow, putting black tape across them in a criss-cross to make it look ‘cottagey’…or when he’d dress up as Santa and climb up outside our bedroom windows to create the magic! He was obviously just buying the REAL Santa some time!!!

And my Mum, she’d decorate the house so it was always so festive and work her socks off to make it extra special. Her cooking, her stuffing balls……Oh my word…THE BEST! She’d have bells that she’d ring deep into Christmas eve when my brothers and I were pretending to be asleep! Again, at the time I really thought they were sleigh-bells but she too was helping Santa in making us go to sleep earlier! Anyways, I could go on for hours about my Christmases but enough rambling- it was amazing! We weren’t super well-off by any means but the effort and magic was ALWAYS there. I was so lucky, I know. That’s all I want to give our three children: the perfect Christmas.

As many of you know we have a wonderful neurotypical girl and two amazing, neurodiverse boys.

Two big things bite me on the butt at this time of year and they are:

1) The pang of hurt when two of your children aged almost six and three years old do not enjoy Christmas as their neurotypical peers would. Some things are even painful for them, sensory overload is an even bigger issue at Christmas, there are more crisis points which I won’t fully go into to protect their privacy but sometimes they chuffing well hurt! I couldn’t care less about the ‘Negative Nancies’ that witness some of these crisis points and like to give their opinion on how my children are behaving. Pfft! Somebody once told me three years ago, “You’ll develop a Rhino thick skin to this stuff” and it’s so true!

The main concern is and will always be that we make damn sure Imogen and the boys are ok during these crisis points and that we learn from them and seek ways to help them. I would be lying if I were to say that I don’t feel a sting of pain when I see my friends and their children enjoying Christmas the way I used to…and if you feel that way too, that’s ok. I used to feel guilty for feeling that pain but it’s natural. It’s only because I love them so blooming much and want them to have the best of everything! I’ll go on to talk about how I alter my mindset to better help my children…

2) This one is a super, size-11 boot in the goolies: Imogen. Gorgeous Imogen. On many occasions our family time goes wrong. The boys can have a crisis and we need to get them out and safe. There are times when we can distract, calm, help and carry on but on the occasions we have to skiddaddle pretty rapidly, I feel awful for Imogen. The sad truth is that siblings of children with additional needs have to make sacrifices most children wouldn’t even think about. But then, there’s always magic there too if you open your eyes to it.

Last Christmas…I gave you my heart. Bad joke.

Last Christmas we attended an SEN-friendly Christmas party and one of the boys had a massive crisis because he’d carefully lined up four Little Tikes cosy coupes and was loving life but other children wanted to play with them (the cheek!) and it was enough to send him into crisis. I tried to calm him, distract him, all those things but inevitably we had to leave unceremoniously. I was on my own as Rich was at work and I’m pretty sure I walked to the car in just my socks carrying two boys like handbags (as one set the other off) with poor Imogen in tow carrying some of our stuff with another really kind lady. That makes you feel inadequate really. Try not to let it! It’s just the situation, not a reflection of your ability as a parent/carer. The sadness for Imogen is crushing though.

REMEDY: Rich and I arranged a girlie ice skating trip for Imi and I so she had the freedom to do something she loved, uninhibited (as mean as that may sound towards the boys). We then went for a cinema trip to watch Frozen 2 whilst Daddy had a boys day at home with Evyn and Awstin. The boys hate the cinema so it would not have been enjoyable for them. They did some activities that they loved with Daddy, in the comfort of their own home and a great day was had by all.

If you are a single parent family and cannot do this type of thing, here are some organisations who are amazing at supporting siblings of children with additional needs:

Kooth counselling service- an online, anonymous service who provide support to young people.

SIBS- a charity who support the siblings of children with additional needs.

Carers’ Resource- They offer support for the sibling of children with additional needs.

This year…to save me from tears. Joking again, sorry.

This year, because Covid has trounced our Christmas plans (as it has for most of us), one night we decided to have a Christmas pyjama party in – you guessed it- MATCHING CHRISTMAS PYJAMAS! We thought this would be quality family time with Imi as she loves matching jammies but also something the boys would enjoy too because they both LOVE matching things. We tried to get the coveted CHRISTMAS PJ PICTURE and holy guacamole the proverbial did in fact hit the fan.

I’m not sure what happened. Imi is always an absolute beauty and ordinarily the boys aren’t interested and don’t pose for the camera but it doesn’t upset them either so we get what we can! NOT TODAY SUNSHINE! Woof did it plummet like a lead balloon. We all got a few flailing arms and legs to the mush and needless to say Rich and I felt terrible for Imogen once again.

REMEDY: Phone (camera) away, flashing lights, telly etc OFF! Rich and I gave the boys deep pressure (tight hugs, feet/hand squeezing and massages) and allowed them to run the length of the living-room like clog dancing millipedes in order to regulate themselves. When calmness resumed, the boys went to bed and Rich, Imi and I had a film night (we watched The Borrowers- epic!) where the focus was solely on her.

When Imi went to bed I cried my eyes out and spoke to Rich about the fact I worry that she must hate it sometimes staying here. He told me to talk to her. So I did, the next day. I explained why things sometimes go wrong and that we worry about how she copes when that happens and that maybe she may not want to come up here. She laughed at me and told me not to be silly! She’s ten!! I guess we’ve always tried to keep her as knowledgeable as possible about autism so that she has that understanding of why things happen whilst making sure that she knows we will always try to do something different when things go wrong, at some point….and of course that we love her endlessly.

Imi recently won an award for entering an ‘Autism Awareness Pudsey Bear design’ in a competition for Children in Need to raise awareness. She’s just amazing and understands so much. What I’m trying to say is honesty is the best policy and knowledge is definitely power.

We are safe in the knowledge that Imi has a fantastic family in Wales with whom she gets to do some amazingly fun activities with, along with her other brothers, and during the difficult times when she’s with us, that’s reassuring to us no end. I know that isn’t the situation for many families and I sincerely empathise.

So, after all my yapping. I think I’m trying to highlight the fact that I don’t help myself where Christmas is concerned!! We are a family with autism within it and always will be and I wouldn’t change any of our children for the world, so why do I do this to myself? I try too hard to give the three of them my idea of Christmas with the most loving of intentions but in reality that does not fit our family.

It causes upset for us all. It’s a real revelation when you realise in some ways, it’s me- I’m the problem here. My husband Rich is very logical and also very laid back. He looks at things and will say “No we don’t need to do that” yet I will worry that “We didn’t do that for our children”. Equally he will also say “Yep, let’s give that one a go and see what happens” whereas I’ll be the maniac with the SAS on standby, walkie talkies and clipboard, our ‘grab and go bags’ at the ready, filled with ear defenders, sensory toys etc and a back up plan for if it goes T-U. It’s exhausting!

So my advice, if you want it, is to take a leaf out of Elsa’s book when it comes to trying to achieve your idea of Christmas and “LET IT GO”. Go with what is best for the family, not what a traditional Christmas looks like to you. I’m trying to do this myself and I’m still very much a work in progress. Rich is definitely helping me with this!

Look for and make the magic in different ways. Have you ever seen the look on the face of two boys who love lights when the Christmas twinkly lights go up? Or how happy you make a ten-year-old girl just by making S’mores on your front doorstep with the Christmas lights in the background? That’s magic, and whilst not quintessentially Christmas, it’s our Christmas and it’s perfect just the way it is, warts and all, because we make it so.

Here’s just some things that I try to do differently now. I realise this is not appropriate for everyone but it’s just what we do because it works for us….

-Make a social story to try to prepare the children for Christmas and what it entails (see video at the bottom). Incidentally I made mine at 4am one November morning because I was worried about the kids coping with Christmas…..Were they bothered? Were they heck?! Will try again next year with that one!

-Two Christmases ago the boys wouldn’t entertain their presents at all…because they were wrapped. I couldn’t get my head around Santa not wrapping the presents for them so we compromised with Christmas bags (reusable) that they could see into last Christmas….worked a treat. WINNING!

-Of course, still ask Santa to wrap up Imogen’s presents because she loves it! (and we adults also get the joy of watching them being unwrapped)

-Just as we don’t second guess what Imogen asks for on her Santa list, don’t second guess what you think your neurodiverse child would like. You genuinely know best, if they can’t tell you themselves. I have it on good authority that Santa is bringing one little boy 100 artificial leaves and a washing up bowl in his set of gifts!!! Genuinely! He’s obsessed with leaves and water play. Orbeez in washing up bowl…. exciting times! Santa is actually bringing all three kiddos a washing up bowl and some orbeez! Hilarious! We’re genuinely so excited to see their faces with them! This is exactly what I mean about altering your mindset.

-If you are able, try to set aside some time and plan some mainstream activities that show the child who often has to sacrifice just how special they are. In our case it’s Imogen and she is a little Queen with the biggest heart who deserves the world!

-Try to think of activities that the whole family will like ahead of time and have simple back up plans at the ready. We were going to a light festival (until covid took a tinkle all over those plans) but had Christmas walks, S’more making, Christmas party at home, Christmas baking and sensory Christmas activities at the ready.

Christmas sensory ideas:

Reindeer food-making and spreading: oats, crushed Weetabix and raisins (no glitter/plastic that could harm wildlife). If your children are anything like mine, they’ll almost wet themselves laughing after they’ve thrown it at you!!!

Christmas sculptures: Rice Krispies and melted (but cool enough) marshmallows to make Christmas trees out of and paint with food colouring; add smarties or similar for baubles.

Salt dough baubles. Umm, I can’t remember the quantities of ingredients so you may have to google but it’s a nice activity.

Elf on the shelf: mix it up. Ensure that the children who understand and are interested see the mischievous activities they get up to overnight but don’t be afraid to enjoy some sensory play with him/her during the day. Make a beach with crushed digestives and blue icing or simply dunk the little beast in flour….hilarious to some.

Don’t sweat the small stuff. There are many difficult challenges that you can’t always change or make better. Nobody is perfect however much we try to be. We will burn out mentally and physically, believe me! Take just ten minutes somewhere for yourself, just to gain some clarity. I have genuinely sat in the bathroom with a cup of tea pretending I’m on the loo- NOT ASHAMED! It’s easy for things to seem insurmountable when you’re looking through the foggy eyes of sleep deprivation, stress or worry so always try to make time for you. Carers’ Resource are amazingly helpful (see link). Don’t compare your Christmas to other people’s- so what if your Christmas PJ picture is blurry? So what if you didn’t even get a picture? So what if Christmas PJs are not even on the agenda- it’s whatever works for you!
Don’t bottle things up, talk to someone if things are hard, accept help. It doesn’t make you weak or less of a parent/carer/ family member!

And lastly, take some festive deep breaths Mamma (and/or Daddy/Carer/Sibling/Family Member) you are all blooming warriors and you’ve got this .

From my family to yours,
Merry Christmas!

4 thoughts on “Guest Blog Post – Christmas, Autism & My Family by Kizzi from AWARE’s BEAT Team

  • Emma Wilkins

    Thanks for sharing your experiences! We are always worried for our NT daughter, as she seems to miss out on so much. Lots of top tips here and you’re right that so much is about mindset and lowering expectations x

  • Margaret Nash

    Kizzi sent me this wonderful blog at the end of late December 2020 and I have been LONGING for December 2021 to share it with our members … in time for them to hear they are not alone and that it’s OK to (as Elsa says): LET IT GO” … . Go with what is best for YOUR family this Christmas. You and Rich sound an amazing team!

  • Rakhshandah Jabeen

    What an amazing insight. Loved reading every single word of it. Thanks for sharing. Its all about “the capacity of the child” and their needs. About time to make a change and lower the expectations set by society. Just go with the flow and make memories in a slightly different way to what we experienced as a child. As long as our kids are happy and safe. Wish you all a happy holiday.

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