Am I a fraud?

Sometimes it is easy to feel like a fraud. It’s something I’ve said many times at the Fathers’ Club when I’ve listened to how badly some parents of children with autism have it. I hear stories of non verbal, physically violent children that don’t go to school or if they do, are segregated or excluded. I hear how the pressure of day to day life is driving parents apart and how financially difficult many find it to give their child the support they need, especially those that are unable to work as they have become full time carers for their child. Often children with autism have other challenges such as ADHD to contend with and it’s not uncommon for their siblings to also have learning difficulties.

So I’ve got things pretty good all things considered. Victoria is a normal little in most respects, a little quirky at times and behind academically and socially but stood in a line of her classmates most wouldn’t spot the autism.

Victoria’s autism doesn’t stop us doing what normal families do. We had a pub lunch followed by the cinema last Wednesday for Emily’s birthday where Victoria polished off the burger and fries like a normal 8 year old,  played in the pub garden afterwards like a normal 8 year old and fell asleep watching the film like… her mum and dad! It had been a long day but all pretty normal.

 A couple of days later we spent the afternoon at our village Jubilee celebrations where V had her face painted, joined in with the games and played with her friends. She even surprised us when she marched up to the stage to be the first to sing to the gathered crowds her amazing rendition of Frozen’s Let It Go. Despite having been blessed with daddy’s terrible singing voice, it was a beautiful moment that filled us with pride. I found myself almost excusing her behaviour to those around me: Autistic kids don’t do stuff like that do they? Apparently this one does!

The weekend was then spent at the home of some very good friends of ours. Victoria hadn’t seen them since she was 2 so we were essentially travelling to Buckinghamshire to stay with strangers as far as she was concerned. She strode into their house with confidence, said hello to everyone whom she addressed by name and was to all intents and purposes a very normal 8 year old having a sleepover with friends. I tell everyone who’s interested that Victoria needs structure and routine so how was it she was able to have such a nice weekend with people she didn’t know, a couple of strange dogs (strange to her – they are actually very normal dogs!) and sharing a bed with kids she’d never really met?

To friends, family and those she met for the first time over the past week or so, I’m sure it’s crossed some minds: why does he keep banging on about her autism? She’s fine. I think he’s overreacting…

And often I feel the same too. After all we have it so much better than many. Victoria “only” has autism. She attends mainstream school. She’s polite and chatty and otherwise healthy and happy. Emily doesn’t have any conditions other than being 5 going on 15 and as sharp as a tack to boot. We are ok financially and Becs and I haven’t killed each other. Yet. So why do I bang on about autism all the time? Well, like the average kid in class that is easily overlooked, often it is the perception of things being ok that give us our greatest challenges. Take Emily’s birthday for example. A birthday is obviously a beautiful occasion full of surprises for a little girl, but Victoria doesn’t handle surprises very well and is honest to a fault, so how do we keep the suspense going for Emily prior to her big day yet give V enough information that she does going into meltdown as soon as the day arrives for her little sister? The same was true of the Jubilee party – we wanted to see the look of surprise on their faces as they saw the games, heard the music and met their friends on the green, but that could have sent Victoria over the edge.

It is now normal for us to live a life with very few surprises as we balance Victoria’s needs with those of Emily. We don’t even realise we do it most of the time, so there was no discussion between Becs and I before visiting our friends on how to handle things; I didn’t even know Victoria had seen pictures of our friends’ children and their dogs on Facebook the day before so she knew exactly who she was visiting and what to expect. So that’s why she strode into their house so confidently! It’s a minor bit of preparation that were it not for the autism we would not need to do, but it’s now our normal.

I will call out here that I was taken aback a few days before the weekend when I was simply asked “what can we do for Victoria this weekend?”  It was a simple gesture but meant so much; it’s not often people give Victoria that much thought before a potentially difficult situation but we have some amazing friends that show great empathy and love for our little girl. As it was our advice was as it always it: let’s just roll with it and see how she is. If she needs some quiet time then we can give her that but otherwise there’s nothing specific as no amount of preparation can prevent that sensory-overload-that-turns-into-a-meltdown moment.

So what were the real challenges over a week so busy and full of noise, colour, strangers and surprises? The biggest was definitely the comedown. Once home from our road trip and for the next couple of days I lost count of the number of times Victoria needed some time out. As is usual, Emily bore the brunt of V’s meltdowns, being kicked, pinched and grabbed over the slightest of things. The hardest thing in the world is seeing your eldest hurt your youngest and your youngest saying it’s not Victoria’s fault, it’s just her autism. I never want my girls to accept being a victim as being normal but this is a tough one to manage. Emily will sometimes retaliate in kind, so balancing the “naughty” with the “autism” is tricky too to ensure there is no perception of favouritism. If Jasper gets involved then things escalate to a whole new level, but like me he’s learning when to keep his head down and stay out of it!

Like many parents, we were praying for them to go back to school for some normality but V in particular needs the routine of school days more than most. By the time I got home from work yesterday the girls were bathed and ready for bed and telling me, as best they can, about their day. It only took Victoria an hour to deal with a tooth that came out after we put her to bed so things are definitely improving!

So on the face of it maybe things aren’t too bad, but that is exactly why I bang on about it so much. It’s not that life is terrible and I want some sympathy. It’s simply that by explaining some of our challenges and normalising V’s condition it might make things that little bit easier all round. The slightest adjustments can have a big, positive effect on her and in turn us. It’s normal for us to live in this way, carefully planning surprises and being aware of the triggers (most of which we miss until it’s too late), and there is no way I would expect everyone to be aware of every person’s challenges. But when interacting with someone with autism, or any other condition, just think “can I do anything to make things easier?” After all, you’d offer a chair to a physically disabled person, wouldn’t you?

So back to my original point – am I a fraud? Of course not. Everyone has their challenges and there is always someone worse off that you are. Apart from situations I’ve described here and elsewhere, our biggest challenges are often not with Victoria herself but with officialdom that stands in the way of her thriving in life. I seem to spend more time dealing with red tape, local authorities and school than anything else at the moment but compared to how bad things could be I’ll take that right now. And me banging on about autism here and elsewhere isn’t just for my benefit or that of Victoria or the rest of our family. It hopefully makes a very small difference to others in a similar boat to us. It’s comforting knowing others have done what you are doing, thought what you are feeling and experienced what you are going through.

Even if they are just a stranger on the internet.