Christmas …

I have this wonderful idealistic image of Christmas. We are all together, glowing bright. The kids are patiently opening their presents, taking time to appreciate each one. The grown ups are sipping champagne, there is the smell of roast turkey (nut roast) in the air, and MrM and I are looking on at our children with pride and love. Scratch that. Christmas is a nightmare!

Last year I made my last Christmas Dinner. Ever! I worked so hard to make it nice, I spent hours in the kitchen, preparing and cooking, I dressed the table, I chose the wine blah blah blah! Aine kicked off after five minutes and ended up on the sofa with a tray, Ned ate six pigs in blankets, mine was cold by the time I sat down to it. I vowed that never again would I cook Christmas Dinner. This year, we are having a buffet. Ned can eat his pigs in blankets without reprise, Aine can sit wherever she wants to, and my sandwiches can be cold, because they are meant to be.

The kids are always ill at Christmas. I type this from a hospital ward as we are admitted for another status seizure. I have missed a meal with my friends because I’m here. I knew I shouldn’t have bought something new to wear! I set myself ridiculous targets, unachievable by ‘normal’ parents, to create the perfect Christmas. It just isn’t doable in our house. And this year, I accept it. If they don’t want to open anymore presents, that’s ok. If they want to open everybody’s, that too is ok! If they want to cry because they didn’t want that gift, cry away! If they want to eat chocolate for breakfast, at least they’re eating. It’s just a day. One day. Life is full of challenges, I’m not going to create my own. Cheers!

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The ‘R’ Word …

All SEN parents know it, the majority will ‘shrivel’ a little when someone uses it in their presence. Tonight, the use of the word has offended me.

A fellow SEN mummy and I were only discussing this earlier today. We started on the subject of racial hatred and switched to disability as we got more angry about it. We visited our children’s school to watch the Christmas play. We had coffee and ‘Christmas’ pies (nod to another SEN Mum) and talked about how kids still use the ‘offensive’ words, and in days gone by, we shamefully did too. (We may be ‘super’ but we are not perfect.) And then tonight it pops into my life. I have a child with learning difficulties. She’s not a ‘retard’, she’s a child. I am going to find this term unacceptable. Not one to rush into a battle, I ask myself ‘Am I being over sensitive?’. So I google ‘retard offensive’. Kind of wishing I hadn’t because it’s a bit late to be getting the soap box out and I have work in the morning. [removes soapbox from under bed anyway and hastily dusts it off.]. Said link, says its ‘not offensive’ because ‘one’ is generally using it about someone who is not ‘mentally impaired’ so therefore it’s not being derogatory. What a crock! We see someone behave in a way that, is in our opinion, ill thought out. We make a judgement about that behaviour and judge that it is akin to the actions of someone with learning disabilities. So we call them a retard. But it’s not offensive. Seriously? I have to say IT IS OFFENSIVE!!!!

Whilst we are on the subject, mong, spaz, spacker, window licker – all highly offensive.

I know that we use insults flippantly, that mostly we don’t mean to cause offence, and I know that generally people who use these words are not bad people and not really aware of the impact it may have. So please, if you must insult someone, and I might hear, or read it, find a word that’s not offensive to someone else. Eg – Dipstick, donut; offensive to dipsticks and donuts but they have no feelings. Because each time a friend uses one of these words, I die a little bit. [Repacks soapbox and stuffs hastily under the bed until next time.]

I love my girl, I can’t change the world, but if I can stop someone using that word in future, my work here is done!

Sleep is for wimps …..

My next blog was going to be about respite. I hold that in reserve because sleep has been a bit of an issue of late so I’m shoehorning this subject in. 
Aine was a great sleeper. Through the night by 11 weeks old, transitioned into her own room without a murmur, cot to bed without a fuss, two hour naps during the day and 11/12 hours a night. I was blessed! She would ask to go to bed, quick story, our little ‘ask the Angels’ ritual and a kiss goodnight and she was settled. Then we had the pleasure of introducing sodium valproate into her medication regime; the juice of the devil! Our great sleeper became an insomniac. I write this at 8.50 pm as she is wired next to me. That’s not so late you think, and you’re right. However, this is a rewrite after the original version got lost in the copy/paste nightmare at 11.50 pm a few nights back. The hazards of being a technophobe!  
I start stressing about bedtime at about 10 am. I know the nighttime battle will involve wanting to sleep in my bed. Objections to this will result in meltdowns, not tantrums, meltdowns. (Will cover those and my utter annoyance at the word tantrum another time.) I may eat my tea before 10pm, I may not eat at all. Or I may have Dominos at 10.30 pm. It’s a lucky dip! Generally if I’m doing bedtime, I fall asleep before Aine! MrM has been squeezing himself into a single bed almost nightly for about a month. Sometimes he gets to sleep in his own bed, but generally Aine and I share the marital bed these days. It’s not funny! I stress that she will be tired and grumpy the next day. I stress that it will impact on Ned. I stress that I won’t get enough sleep. I stress that I will have to deal with the meltdowns. I stress about watching Balabloodymory again! 
Once she’s asleep, she pretty much stays asleep. That’s a huge blessing. I get to sleep eventually and if Ned sleeps through its ok. But that doesn’t stop the nightly bedtime battles eating slowly away at my nerves! My poor tattered nerves! I know that there will be special needs parents reading this, nodding, smiling, frowning and thinking I have it easy compared to them and I agree but my mum had a saying ‘what you never had, you never miss’ and I miss my peaceful, quite beautiful, bedtime girl.