A Change In The Flight Plan

Monday was tough. Not tough in the usual sense (my usual sense), where I struggle to wake up, spill coffee on jeans, can’t find something vital, miss the bus and see a domino effect of chaos over the course of the day; resulting in me counting down the minutes till home time and anxiously anticipating a 7.30pm G&T arrival. Monday was a different kind of tough.

I was actually 100% prompt and organised. The night before we had come to the realisation that I’m fucking horrible with money; that due to the way I disregard any letter with my name on and shove it in Shit-Drawer (the kitchen one that’s nearly spilling out with its elastic bands, bus tickets and receipts from 2015 – I know everyone has one), I’ve ended up building up an enormous debt. We sat and talked, I cried a bit – sometimes I do – adulting tends to overwhelm me, and then I manned up, wrote a 4 page to-do-list and set to work at sorting myself out. And Monday morning, I got up and did just that. I dealt with things, felt an enormous sense of relief and calm – and then it was time to go to the meeting.

That meeting.

My daughter’s school feels that the next best step to take is to apply for funding for 1:1 assistance in the classroom. This needs to be done in order to meet her needs and help prevent the social and academic gap between her and her peers expanding even further. It’s a decision I’m completely on-board with. I want the best for her, I want to maximise her chances and give her all the possibilities in the world.

But in order to get this funding, they had to go into detail about what she can’t do. I know it had to be done, I was even warned beforehand, but I still hated every second of it. As a parent, you can be hyper-aware of your child’s weaknesses but just put it down to being a parent; naively thinking well, maybe not everyone sees that side of him/her, maybe I’m panicking, maybe it’s not that bad, but when someone actually does say something negative about them, you’ll be resorting to thoughts such as: you shut your stupid mouth.

Hearing them lay it all out made it ten times more real, and internally I was on the defensive. They weren’t being mean. They were compiling a list of every area she’s below age-expectancy so they could present it to someone at the end and say: look, this is why we need your help.

Yet every time someone mentioned the fact she’s behind academically, my fists were clenching. When they mentioned the fact I’ll have to decide whether she’s going to stay in mainstream school or go to a special school, my eyebrows were doing that frowny thing and I could feel myself staring at people like they’d just taken a dump in the middle of the floor. When they said she tends to play by herself in the playground, I felt like I was about to cry. I don’t know why this was so hard to hear. Or maybe I do.

When you’re pregnant, you have these hopes. Mine were something along the lines of:

We’re gonna go camping. Every year. We’re gonna ride bikes. We’re gonna stargaze and talk about planets. I’m gonna get her into decent music and we’re gonna go to festivals. I’ll be that mum with tattoos on her arms, with the kid with the flower hairband and the Metallica t-shirt and we’re gonna be best mates.

I imagine for a lot of mums, both with children who have disabilities and those who don’t, we quickly realise this kind of thinking is silly. We know its silly as soon our real offspring enter the world and they’re nothing like the imaginary ones we conjured up. They’re even better than you could have ever imagined, for a start – they’re not imaginary! But there are the days when being a mum isn’t fun.

We romanticise motherhood until we actually experience it; creating materialistic unattainable goals. During pregnancy, or even before, we might think of the names we could call them and overthink the name we actually settle on to a stupid degree. We might picture them sharing our interests, as opposed to us sharing their’s.

If I name her something cute and tomboyish will she be awesome and fierce and play in the mud and dig? If I name her something pretty and princessy, will she be dainty and doll-like and angelic? How will I dress her? Will she be a mini-me? She should be a mini-me! I’m going to get her into Lego and superheroes. She’s going to be a zoologist. She’s going to be a painter. She’s going to be the coolest kid known to man.

Unsurprisingly, not just because I was a self-indulgent 17 year old, but also because I was a new expectant mum getting over-excited and carried away, these were all the things that went through my mind during pregnancy. They continued through to my daughter being a tiny, tiny baby, and I even held on to some for years afterwards.

When I realised I was bringing up a little girl who was very different to (what seemed like it at the time) everyone else’s little girl, I went through this almost grief-like process. Now I know it that it was a selfish kind of grief.

I never expected to be *that* mum. I wanted to have mum friends and go to coffee shops, do play-dates, raise her wonderfully and pat myself on the back at the end. Now we’ll never do any of those things I wanted to do and she’ll never grow up to have what I wanted her to have and I-I-I-me-me-me. – Whiney McWhineson, 2012.

Kids are hard work; and the unexpected can be just around the corner. They’re also unique little creatures with their own personalities and quirks. And although nature and nurture play their part, these personalities are not destined to be carbon copies of yours, or even yours and your partners mixed together. Your child can be not only the polar opposite of you, but something different entirely.

My mum likes to tell me her theory – “there’s a reason you’re a special needs parent.” She thinks I’m a strong enough person to deal with the challenges it presents. She also thinks I have an immense amount of patience and love. Sometimes I doubt it. Sometimes I want to bang my head against the wall because I’ve explained the same thing to my daughter literally 45 times. (I’m saying literally because I mean literally, not because I’m annoying and overuse the word when I actually mean figuratively. While I’m on this, when will people stop that?)

During that meeting, when I listened to professionals talk about her, it was a confirmation and a kick to the stomach and a relief all at once. All those “my child will be…” moments – I had to let go once and for all. I thought I had already, but obviously my subconscious had clung on to a couple for safe keeping. People were in agreement over the fact that this is a child who needs extra help. This is a child who’s different. This is a lifelong thing.

There’s this poem, you might have heard it, called Welcome To Holland. If you haven’t, you should – Click-Click. Some Autism parents don’t like it, but I do. It’s one of the only poems I’ve ever read and felt something, and it was the turning point in my thinking.

I never got the festivals and the bike rides and the camping. I never even got arm tattoos.

But I did get a best mate and the coolest kid known to man.
Someone who’s funnier than me and any other adult I know without meaning to be. Someone who cares deeply and worries and feels things for other people – even though experts would tell you “people on the spectrum usually struggle with empathy.”

Those things aren’t superficial, they’re not an image to share on social media, they’re not a lifestyle blogger’s envy-worthy post.

Monday was tough and I did cry, but once I got to the end of it, poured myself a 3.49 horse-piss flavoured glass of wine because I couldn’t afford gin, read the poem again and reminded myself that yes she’s different, but different doesn’t have to be something to cry over, I went up, gave her a cuddle and just felt happy – properly happy – to have her.





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