I haven’t posted for a while. The Rose was so sad about breaking up with The Boyfriend in early December and I was so busy with Christmas sparkling that it just got lost. But now we face a shiny new year and looking back – Christmas was far more fantastic than it ever looked like being.
Firstly there was the redundant Christmas present which The Rose had bought The Ex.
Chocolate – (every present is usually chocolate) which she kept ‘just in case’ and was not going to share with anyone ‘just in case’ but pained her deeply every time she thought of it (it pained me too – it was Lindor! ) – was shared out in a fit of largesse and boyfriend revenge. Delicious
The overpowering smell of Lynx – The Ex Boyfriend’s deodorant of choice which was like incense to The Rose. Smell is very special to her and she enshrined everything she touched with drowning sprays of ‘Africa’. I went to work and was complemented on my ‘new room spray’
Christmas day – facing the difficult prospect that our precious Christmas routine of ‘just us’ – was going to be upset with the arrival of my sister’s family and Grandma on the magical day. The Rose was very angry about the fact they might be coming at all and we lost weeks worrying and arguing and not wanting to upset anyone.
I have never shared with my extended family the nitty gritty of the angst we deal with daily, because no one outside ASD parenting ever really gets it, however much they try. It all sounds so self serving and indulgent the lengths we go to make life easier for our ASD kids. Sometimes I think it feels like an excuse – especially when you have a daughter who is so good at pretending it’s all fine in public – other people never see what it costs her to be that way.
The Rose eventually explained to me though tears and shouting and my piecing together bits of coherency, that she has her Christmas plan and aims to do these things:
“Stay out of my room all Christmas day and keep downstairs so we can be a whole family” and “I keep all the anger inside just for Christmas”.
The volume of noisy and loud excited cousins, aunt, uncle and grandmother would be too much, impinging on the magic of her delicate and preciously held together perfect day. She basically said she’d never forgive herself if she spoiled it by being angry and melting down.
We finally agreed a solution.
We had got down to the root of what she needed – to be the same:
- Getting up and running downstairs together with The Brother in slippers and pyjamas
- Reading aloud the note Santa has left and ensuring the reindeer have munched the carrots (passing these round for inspection)
- Sitting in the same seats (she photographed them so we knew for sure, even though they are exactly the same seats we sit in every year)
- Opening our stockings which are slightly different for each person (I must also take photos and film and get a Satsuma from Dad!).
- Going for a morning walk and eating sweets on the walk before dropping into to The Family Friends for Bucks Fizz.
- Back home by midday and into our seats for main presents (always start the Christmas CD with Rockin’ Around the Christmas Tree)
- The Bother snuffles under the tree and distributes presents. We have to watch each person open their present in turn –they have to tear the paper harshly or they get into trouble!
- Dad makes coffee and eats Quality Street while wearing a Jester’s hat
- Mum writes down who got what from whom so thank you notes can be written properly
- An hour playing with gifts before any dinner, TV or drinking!
- Self imposed computer amnesty (yes !!!)
And do you know what? – that’s exactly what most families up and down the land love about Christmas – family traditions, routine, sameness and security in a shared familiarity.
It’s magic. Turns out we really are all the same.
That sounds a bit like my Christmas actually…. arguments over who is coming over!!
I’ve read your blogs for the past few months now, and I’ve found them very informative, and interesting, I was wondering if it would be okay if I included the link to your blog in a list of websites and blogs that are useful for those wishing to learn more about Autism/Asperger’s syndrome and how it affects people?
To provide you with a bit of context, I run the website, http://www.whatsitliketolivewithautism.com , I’m a 19 year old with Asperger’s Syndrome, and I’ve always enjoyed reading your blogs, mainly because a lot of the situations sound not too dissimilar to some of the goings on in my family!
If you have any concerns or questions about the use of your blog, just email me at email@example.com, or even leave a comment on the blog somewhere, and I’ll try to reply as soon as possible!
I would be delighted to have you link my blog. If it helps anyone stop feeling so isolated or misunderstood then I am very very happy to share.
I am so glad that you find what I write interesting and informative. I try to depict how a parent sees or copes with the difficulties and stresses you must deal with yourself everyday. I also try to depict the love and humour that can so often be overlooked in the dynamics of family life that can often seem like a battle ground. …it also helps keep me sane when I want to scream or cry or rationalise what’s happening to us and her.
Thank you so much for making contact and for following the blogs. X
and you do it so so well xx
Sometimes as I read you I wonder ‘if I touched the monitor cold I feel the love you write with’? Then I realise I already do. The way you talk about the Rose in your writing is just that, I HEAR you ‘talking’ without knowing your voice and yet I know it is the sound of mothers love. Your remarkable daughter has an even more remarkable mother. and I just know she has to feel blessed to have you.
I adore reading you. Thank you, and you and ‘the Rose’ have a happy joy filled new year. xx
Andy. I can’t tell you how happy and humbled your post made me feel. Thank you doesn’t even cover it. You have made me glow. I carry that with me for a long time. Xx
A truth is always easier to write than a fiction. I should love to write so well.
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Wow that was unusual. I just wrote an very lokng comment but after I clicked submit my comment didn’t show up.
Grrrr… well I’m not writing all that over again. Anyway,
just wanted to say great blog!
How frustrating for you. Would have loved to have read but appreciate your kind word anyway. Thank you.