Tuesday 27 March 2018

Muppet

I love my texts from my daughter. She sends them to me from school or college if she's forgotten something or has something on her mind.
('Landyard' in this one means the lanyard on her ID card for school):






Friday 23 March 2018

Cappucinnapology

The phone rang. It was my daughter’s carer, telling me my girl was in Café Nero, she had dug herself in, heel-first, and wasn’t leaving. It was a full-on, 'horse-at-Becher’s-Brook-in-the-Grand-National' refusal. 

We haven’t had one for a while.

Every other Saturday my daughter goes out on a little trip, with a handful of other young people/adults with disabilities. They have a coffee, and go to the cinema or the bowling alley. They are encouraged to use their money to order and pay, and it’s basically good practice in social interaction and independence.

My girl was acing the independence bit and flunking out of the social interaction module, by getting herself tied up in knots over the discussion of what film they were going to see, putting her blinkers on, and basically shutting down to any instructions. Tears and a little bit of temper were involved.

Putting me on the phone didn’t help: she ‘mysteriously’ couldn’t hear me.

In the end it needed a mercy dash in the car to get her home so the other girls could head off to the film my daughter hadn’t liked the sound of.

Later, when my girl left the Zone of Anxiety, I was able to chat to her and tell her how important it was that she does what her carer says. 

She nodded.

She went very quiet. 

She fetched her tablet and painstakingly tapped out an email to her carer:

I verry sorry I had a melt down and shouted at you in cafe neo and I am excremliy sorry that I refused to in your car and didn't come as i was told and i realised i was acting like a little girl and not acting like a 19teen year old. mummy explain to me that i have to come as i am told overwise it isnt safe to come out with you and i wont do this kind of behaler agan see hyou inweek on onsaturday and iam worried that you dont wont to take me out eney more but i still wont to come out with you


And yesterday I found this letter of apology to...erm...Café Nero.


Translation: I am very sorry I had a meltdown and shouting in your cafe. This is my favourite coffee shop. I have realised people want to have peace and quiet to drink their coffee and not listen to me crying and shouting. Yours, sincerely xx


As for my apology?  Nope, still waiting. But, hey, I know my place, and it's way down the chain. Beneath the coffee franchise, obviously.


Song is Nirvana - All Apologies

Sunday 4 March 2018

Thaw


I am, by extension, better informed about recent snowfall across Britain than most TV weather presenters. Seriously, slap a bit of lippy on me, give me a green screen and a little button thingy to press, and I could give Carol Kirkwood a run for her money.

This is because there was a new entry in the charts of my daughter’s Prader-Willi Syndrome Next Level Obsessions this week, as SNOW rocketed up the bestseller list, passing BOOKS and - incredibly - FOOD, to take the coveted No 1 slot.

“Mum, how much snow is there where [insert different family member or friend’s name here] lives? Mum, we’ve got more snow than [insert random place name], haven’t we? Mum, my school is going to be closed isn’t it? Mum, is [insert random school name] going to be open? Mum, [insert random day] is going to be the most snowy, isn’t it?”

All of these questions (which continued for approximately four days) have needed to be answered. And have been responded to with daughter’s alarming new habit of essentially accusing me of #fakenews. So I’ve had to put the Google results, Met Office pages, online photos and videos from social media right under her nose, several times over, to convince her of the validity of my answers.

Today, things were back to normal. The temperature has gone up a few degrees, and the snow has pretty much melted. I was supposed to be doing my usual Sunday morning duties of helping corral eight and nine year olds at minis rugby, where for some reason I have ended up as an Assistant Coach, despite the fact that my boy tried rugby for four weeks, then decided he’d prefer to be home in the warm, so I go and he doesn’t.

But today’s session was cancelled, so I took my girl for a little walk down to the pub for a bit of mum and daughter time, a cup of coffee and a chat.

“We’re going out for lunch on the last day of term, Mum, so you need to see the menu, and I liked it when I had pasta arrabiata when we went on the Prader-Willi weekend, and McDonalds’ peri-peri wraps are quite healthy aren’t they, and can I have a melon for my fruit today.”

Yep. all back to normal.



Video is Laura Marling - Goodbye England (Covered In Snow)