I was woken up by two attention-seeking missiles. I’m not talking about my husband’s testicles, he was on the early shift. My kids, I mean my kids.
They came bearing gifts. An LP (which was not a surprise, as aforementioned husband had told me to order it for myself from them). My little boy had bought me a box of maltesers from the Mothers’ Day table top sale at his school. And my PWS teenager, eyeing the chocs with deep interest, gave me a tapestry handbag, because, hey, I’m a real tapestry handbag kind of woman. “You know you gave me £2 to spend at school on Red Nose Day, well I had 20p left, so I got you this,” she explained. “I know you’ve got a bag, but this one’s got a camel on it.” The messages inside their homemade cards said it all. The lad’s was an outpouring of random stuff (the mercenary bits given top priority, but I was dead pleased with the ‘cuddles’, and hugely relieved not to be thanked sarcastically for ‘all the shouting’). My girl’s was short. Pithy. Misspelt. They were both beautiful.
Happy Morthers.
Video is Public Service Broadcasting - Gagarin, from the LP wot I got.
This week is PWSA (UK) Awareness Week. The Prader-Willi Syndrome Association (UK) want to spread the word about the rare chromosome disorder. They want more people to know about the syndrome, in an effort to allow children and adults with PWS to be understood and accepted, and to make more people across the country aware of what the condition means for PWS people and their families. “Talk about PWS” is the strapline. Today the PWSA (UK) is talking about Education. What experiences do parents want to share about their PWS child's education? Some parents go bananas trying to get their kids into a good school. They run themselves ragged hot-housing little Jocasta into a frenzy, desperate to bag a galaxy of A-stars and bask in their reflected glory.
I don’t think I was ever going to be one of those parents. All I want is for my children to learn, to do their best, and to be happy. (For one horrifying moment, I just had a strange urge to print these three aims on a picture of a sunset, or a kitten, or a kitten in front of a sunset, and post it as a motivational Facebook inspiration status. Don’t worry, I slapped myself in the face, and the feeling passed).
Children with Prader-Willi Syndrome have a lot to deal with. As well as the insatiable appetite and the need for supervision around food, they usually have some form of learning difficulty and are emotionally immature. This means that you discover a whole new side to the education system that you barely knew existed: the world of Special Needs education. It’s a world of confusing codes, acronyms, and jargon. You’ll be meeting SENCOs, agreeing IEPs, arguing over SENs, and trying desperately to resist the urge to yell FFS.
It’s hard, trying to find the right school. It’s tough deciding between special needs education and mainstream inclusion. You discover how local education authority’s finances directly affect the provisions put in place for your child. You realise that you need to be a squeaky wheel, and to question decisions. You learn the value of good advice from people at the Prader-Willi Syndrome Association (UK), fellow PWS parents, and other organisations. You realise that the perfect setting for your child does not exist, but good ones do, and that as your child grows and changes, that good place may not be the right place any more. You realise the importance of real, robust communication between you and your child’s school. You wish that the ‘tradition’ of kids bringing cakes or sweets in on their birthday had never started, but you plan for it by giving your child’s teacher a bag of alternative treats. You worry. You watch. You listen. You learn, often by your mistakes. Then you move house, and have to start all over again.
The people who make all this bearable are the good ’uns. The teaching assistants who seem to get your child, and the ones that think ahead and come up with cunning plans when food is on the curriculum, and somehow manage to persuade my girl that PE is fun. The teacher who calls the PWSA for advice and help, and emails you in the evening about a problem she wants to solve. The school staff who give up their time to make the special school show the hottest ticket in town. The people who connect. The people who can sometimes send my extraordinary, wonderful, happy, anxious, daughter home with her chest puffed up with pride. It’s not every day, but every day that it happens is glorious.
Video is Public Service Broadcasting - Inform, Educate, Entertain.
"It's tiring all this stretching up for something that's just out of reach.
But I'll get it. After all, what I want isn't as easy as all that."
Sometimes my daughter proves to me she has more Random Access Memories than Daft Punk.
Today brought about another entry in the Stuff She Unexpectedly Remembers charts, just as I happened to be listening to a slice of magnificently nerdy, electronic music from a speccy, history-obsessed duo called Public Service Broadcasting. Thanks to some military-style planning on the babysitting front, me and my husband and my brother and his wife had actually been to see this band play live last night.
“Were Public Sir House good, Mum? What do they sound like?” my daughter asked me, after school.
I thought for a moment about how best to describe them. They mix up electronic beats and synth loops with guitar riffs, which underscore fascinating audio clips from old films, news broadcasts, propaganda, and public information films. Some of audio samples come with grainy, flickering visuals, which in the live show are beamed onto projector screens and small towers of valve-powered retro televisions. Now, I understand this sounds a bit odd, but it’s jolly well very entertaining.
I looked at my girl’s expectant face, and decided to let her hear for herself, rather than listen to a rambling load of old guff from me. “Public Service Broadcasting, sweetheart. They sound like this...”
She listened intently. “I like it! This is good. What’s it called?” I told her the track I’d chosen was “If War Should Come”. Ignoring her little brother, who was jumping up and down and shouting that he wanted to change its name to 'Alex' (!), she listened to the rest of the song, which comes complete with air raid instructions to “extinguish all lights” and ends with the sound of Neville Chamberlain, solemnly declaring “I have to tell you now, this country is at war.”
My daughter suddenly looked very excited. “THIS IS FROM THE OLDEN DAYS! THIS IS IN GOODNIGHT MR TOM! WHEN THEY’RE ALL LISTENING IN THE CHURCH!”
I was flabbergasted she’d recognised that the voice clip was the same one used in one of 'her' films.
"Wow. Yes, it is, you're right."
“Who says it, Mum? It is the same man as in Goodnight Mr Tom, isn't it?”
“Yes. Well, it was on the radio and it was the Prime Minister at the time, who was called Neville Chamberlain.”
“Oh.” Her RAM chip kicked in again. “I know who the Prime Minister is now, Mum. He’s David.”
“Yes, he is! And what’s his last name?”
“Er.....Beckham?”
Video is: Public Service Broadcasting - If War Should Come
I was woken up by two attention-seeking missiles. I’m not talking about my husband’s testicles, he was on the early shift. My kids, I mean my kids.
They came bearing gifts. An LP (which was not a surprise, as aforementioned husband had told me to order it for myself from them). My little boy had bought me a box of maltesers from the Mothers’ Day table top sale at his school. And my PWS teenager, eyeing the chocs with deep interest, gave me a tapestry handbag, because, hey, I’m a real tapestry handbag kind of woman. “You know you gave me £2 to spend at school on Red Nose Day, well I had 20p left, so I got you this,” she explained. “I know you’ve got a bag, but this one’s got a camel on it.”
