My girl is going to have a spinal operation in two weeks’ time, so she’ll be having some recovery time off school.
Luckily, her school Christmas Show is before the op, so she can still take part. But she’ll miss a planned class trip on the bus to have a Christmas lunch at Wetherspoons.
“I really want to go, Mum,” she told me. I’d already done the usual Prader-Willi prep (checking menu, assessing calorie content, informing teacher of what was ‘allowed’). “I know, sweetheart, but it’s after your operation so you can’t, I’m afraid,” I told her. She wasn’t happy.
Wind the clock on a few hours, and she came out of the school gate, beaming, and babbling: “Guess what, Mum? My teacher said that because I’m missing the special dinner with the class they’re going back again especially for me and everyone is coming and we’re going on the bus and it’ll be a nice dinner and they said it’s to welcome me back to school.”
“That’s lovely. What a nice thing to do.”
“And guess what, Mum, James gave me a special present because he’s having a birthday party but it’s a trampolining party but I can’t go because of my back but you told his mum that and James has got me a present instead and it’s a Smurfs DVD.”
They may be small kindnesses. But in anxious times, they’re treasure.
I put the phone down, and sat down. If I’d have had any brandy in the house, I would have necked one, despite me knowing that it would be bad to have booze breath on the school run.
The hospital had called with an operation date. The three month waiting list turned out to be a bit of an overestimation, and a cancellation has bumped my daughter up the queue.
The metal in her spine is being removed (I don’t know what titanium fetches at the scrap yard, but the NHS needs all the funds it can get). The titanium rods and bolts that were fused to her spine seven years ago, providing the scaffolding for the bendy bones to knit around and straighten up, are coming out. The nerve pain they’ve been causing should disappear along with them. And her posture shouldn’t be affected - the rods did their job a long time ago and are basically redundant. I feel like I should send them for re-training and give them help with writing their CV.
Being mum to a special needs child means you get used to certain reactions from people. I call them the two Ps, which gives me pleasing opportunities to pun on ‘Two P or not two P?’.
The first P reaction, or (P-action if you prefer, although that sounds a bit urine-based) is Pity.
I remember getting angry years ago when a woman did a double take and set her face into Pity Mode as she looked at my young daughter in her buggy, zonked out, strapped up in her restrictive body brace.
I remember wanting to scream at her: “You don’t know anything about her life! She’s just tired, you haven’t seen her giggling and playing and singing! How dare you pity her!”
I was a lot angrier then; I feel differently now. People who give you the pity face aren’t being unkind on purpose. It’s a minor irritation. It’s annoying in the way a wasp is annoying: seeing pity on someone’s face makes you want to swat it away, even though you know you’re bigger than it, it doesn’t know any better, and it can’t really hurt you.
The second P reaction is Praise.
We all need a bit of positivity in our lives, and someone telling you you’re doing a good job can give you a much-needed boost. But it should be earned: being told you’re an amazing parent just because your child has special needs is actually pretty insulting, to both you and ‘ordinary’ parents.
The phrase: “I don’t know how you do it - I couldn’t deal with everything you have to deal with,” is a corker that gets wheeled out by good-intentioned people every now and again, and it’s as wrong as a wrong thing that’s gone wrong that you’re looking at wrong.
Us parents of special needs children are no different from other parents. We just share a few experiences, that’s all. (I’m not belittling this - it’s a very strong shared bond). But we cock things up like all parents do, we snap and shout when we’re knackered, we can be too demanding, too lazy, too strict, too lax, too full-on, too hands-off, too much, too little. We’re just parents.
Sometimes we can be pretty damn amazing, but that’s just because of, you know, love. We aren’t unique for loving our children. Or for thinking that they’re much more lovable than anyone else’s.
There are, of course, other reactions. Not all beginning with P. If I had 2p for every time I’d seen a look of disapproval from someone judging me and my daughter when she’s behaved ‘inappropriately’ in public (having a tantrum, not acting in a way people expect for her age), then I’d have roughly £15.86. (That’s a large amount of 2ps, but perhaps doesn’t illustrate my point very well. It happens a lot, OK? A lot).
I suppose the conclusion I’m rambling towards is this: people will react to your child throughout their life (for good or bad reasons). You can spend an awful lot of time tying yourself up in knots about this. Or you can accept that in the end, there is only one reaction that counts. How you react. That’s the important one. What isn’t important is what other people - usually people you don’t even know - think.
You’re allowed to get it wrong sometimes. But how you deal with it is how you deal with it. Your love is your love. And the rest of ’em can P off.
Song is Ann Peebles - I Pity The Fool This post first appeared in the latest edition of PWS News, the newsletter of the Prader-Willi Syndrome Association UK. They have a very informative website here.
Well, it’s over for my little boy, who's back at the coal face tomorrow, but not for his big sister, because her school has a teacher training day. Wish me luck in the morning with explaining that to a belligerent six-year-old who is already a black belt in “It’s not FAIR!”.
Much of the week has been spent tag-teaming with my husband, taking said boy down to the skatepark on a dragon-embossed skateboard given to him by my next door neighbour. He’s basically taught himself to skate in a week, thanks to YouTube videos. He’s also learned how to speak the lingo, with his sample shouts of encouragement to the bigger boys doing ramp tricks on their scooters being: “Yo, dude, that was epic!” and “You really nailed that, man!”.
My daughter went for her traditional holiday sleepover with her Prader-Willi Syndrome Best Friend Forever. They went to the cinema (see her incisive review here), went to Pizza Express for a leggero (a pitch-perfect, sub-500 calorie, PWS-friendly pizza with a hole in the middle filled with salad), they chatted, caught up with Eastenders, rang me giggling several times on my girl’s new mobile phone, walked PWS BFF’s dog, and had a generally lovely time.
My girl also attended a Halloween party with a couple of friends from school, and looked very glamourous as a glittery witch. We did the trick or treat thing last night, too, with the usual pre-planning (only visiting relatives and close neighbours, with plenty of no-sugar wine gums and low-cal snacks on hand ready to switch with the normal round of lollipops and Halloween-themed sweets). My daughter was quite happy with her ‘special treats’, my son was ecstatic with being slipped her share of chocolate eyeballs when the swapsies were made, and they were both in bed by 8.30pm, which was a blummin’ treat for me.
But it was only today that I realised that there has been an overarching theme, a narrative arc, a subject that has dominated half-term.
It’s boobs.
They first surfaced at the start of the holidays when my son showed an unexpected commitment to continuing his education at home, and asked to go on my computer to practice ‘typing words’ (see photo).
They reared their nipples in the middle of the week, when my daughter, in an escalation of a recent obsession with having dry skin, decided to rub her chest until it was sore because she was concerned about having ‘appendicitis in her breasts’.
And they unexpectedly took centre stage today when I took my mother-in-law back to her care home after having her over for Sunday lunch. An extremely elderly man beamed at me as I was walking along the corridor, and it was a moment before I realised his eyes were fixed firmly on my breasticular area. And then he uttered the immortal words: “Hmmr, argghatuban mmm, ggrgree. BANGERS!”
Oh God, I think I have seen my boy's future...
Song is Cornershop - Brimful of Asha. "Everybody needs a bosom for a pillow, everybody needs a bosom..."
“It was too loud, there was too much fighting, it didn’t have Tinkerbell, Captain Hook has two hands, and there wasn’t a story.” That's my daughter’s review of Pan, the brash Joe Wright film that purports to be a prequel to JM Barrie’s tale of ‘The Boy Who Wouldn’t Grow Up’.
I would say we had found a worthy and succinct successor to Roger Ebert and Philip French.
I would say that, but she also thinks that Nativity 2: Danger In The Manger! is a masterpiece.
Song is Abraham & The Casanovas - Hook & Boogit (or Hook & Boogie)
Is it wrong to...well... stalk someone else’s five year old boy just so he has more opportunities to cuddle me, give me a kiss on the cheek, and tell me he loves me with ‘all his heart’?
Am I wasting my time by seriously considering inventing an Anti-Fit hack to my Fitbit watch, and introducing a ‘Pro’ setting (standing for ‘Prosecco Consumption?)
Am I a bad person for wanting to refer to our lovely, but amusingly-monikered New Forest Holiday Park not by its actual name (Sandy Balls) but by my own, less polite version (‘Itchy Bollocks’)?
Was it my own silly fault that when taking a woolly gang of alpacas for a walk around the caravan park (yes, you heard right) I fell over a bin as I backed up trying to get a shot of them in The Beatles’ Abbey Road record cover formation?
Are alpacas even allowed to use a zebra crossing?
These questions are all burning ones. But the most flammable query on my mind today after returning from a weekend away in the company of a special tribe of special kids, special young people, and their special families, is this: Could we have had more fun?
It was our second Prader-Willi Syndrome Association UK family weekend. And the stress of the car journey (“Are we nearly there yet? It’s taking a BILLION years!”) melted away as we drove through the trees to our miniature home on wheels.
A quick warm-up and scoff of the ‘here’s one I made earlier’ meatballs and spaghetti tea, and it was off to the Activities Room to meet the others. There were babies, toddlers, teenagers, adults, little ones that had grown since the last time we saw them, new faces, mums and dads and sisters and aunts and nans and grandads, and we had Maggie, Karen and Sharon from the PWSA UK, working hard to make us welcome and entertain the troops.
Events were spread over the two days for people to pick and choose and pop along to if they wished - and it seemed like everyone came to nearly everything. Walking the alpacas, with their 80s footballers’ perms, was the most surreal activity. Visiting a country park featured our most chaotic moment (when my daughter decided at the last minute to back out of the steam train ride, thus sparking a low level anxious rash of wavering PWS passenger refusals and readmissions). Making masks and decorating clay pumpkin lanterns provided the most data on how much felt tip my son could cover his face in. Likewise, the soft play area proved it is the most reliable way of making a small child sweat like a bastard. Swimming made my goggles mist up as I took in the sight of our motley crew of amazing children, paddling and splashing - some needing enough flotation devices to sail to America on, and others swimming freely.
A group of us met up for dinner in the restaurant, and my girl sat opposite a young man with PWS who tried to outdo her on the spice front in a Scotch Bonnet v Jalopeno Chilli Pepper face-off. (Neither even broke into a sweat).
Handsome little Clive politely gave out world class hugs (hence my aforementioned stalking). Beautiful little Polly told me solemnly how she had been “so looking forward” to holding my girls hand, promptly did so, and didn’t really let go. (I had to keep reminding my daughter that she was attached to a small person when she approached a gate or a door).
Our family won the quiz, principally because I brazenly cheated and asked friends on social media to identify a cartoon character that no-one could get. “Check the back of the paper for rules, and if there aren’t any, we can Google!” I told my daughter, imparting a valuable life lesson. ‘Sindbad’ (no, me neither) earned me a bottle of plonk, which my daughter strickenly dismissed as ‘a Mum prize’, so Maggie stepped in and gave her a doodle book, and all was well.
Thank you, to the PWSA UK team for organising and running the weekend. Thank you to everyone who came and put a constant smile on my face (you see, no, it was not entirely down to hitting my Pro-secco targets with aplomb).
Thank you for making my daughter happy. In life she is often different. Here she was alike. And she aliked it a lot.
I put my poker face on. Which was hard, because I very nearly burst into tears. Good tears.
"What did you say?"
"I said yes, but I'd have to ask my mum."
I was struck by a sudden thought.
"Do you know what a date is?"
"Er, no."
I explained.
"Well, if someone likes another person, they go on a date. It just means going somewhere nice together, like the cinema, or to a restaurant."
"Oh."
"So that means Kevin must like you. Do you like him?" I already knew the answer to this: she's had a soft spot for him for a while.
"Yes."
"I'll call his mum and we'll sort it out."
She beamed. I beamed. It was very beamworthy.
It's two days later. They've swapped mobile phone numbers (my girl got her first phone for her birthday last week). He calls her from his taxi that takes him to the special school class they both go to. They have faltering, repetitive conversations. He texted her and called her 'Sweetie'. He asked if she wanted to be his girlfriend and, if so, why? She texted back: "Because nice."
I'm happy that she seems quite happy about all this.
