Parenting. A funny old game isn’t it? Well actually, there is a reasonable amount of time where it isn’t actually funny, it’s just bloody hard. It doesn’t matter whether you are parenting an only child, a whole brood of them, one (or two) with a disability or a step-parent; it brings its challenges.
Whether you’ve read the Perfect Parenting Manual or not, we’re all just winging it. There are days we are high-fiving ourselves as we believe we’ve got it nailed and there are others where we’re wondering how we fucked it all up. And when I say we I mean those of us who have the honesty to say that despite our best efforts, we’re not actually perfect.
I’m the one who thought that once I became a parent there would be nothing that would phase me (unless my child actually turned out like me and then I would be scared shitless). The reality was something different and it started as soon as he was born. There are some who tell me I’m this amazing mum who does everything and more for their child. They tell me that Joseph is lucky to have me and they tell me Joseph has flourished because of me. If truth be known, there are a team of people behind that success that include family, friends and teachers. I’m simply a good PA who ensures he gets everything he needs.
I’m not Supermum. I’m simply A Mum.
I’m told I’m incredibly positive in spite of the things I have to deal with and on some days that may be true. Others days, I’m definitely a half empty cup sort of girl and wondered what the fuck I did to deserve my crazy life. I’m no different to anyone else, in that shit happens and some days you are all over it (the shit) and other days you simply want to roll over and go back to bed.
Juggling life as a parent, worker and partner is like navigating around the London Underground. I love it, I get a buzz out of it but it means lots of hopping on and hopping off to get to the right destination. I’ve never been fearful of getting off at the wrong stop as I know it can usually be rectified but it’s busy and often draining.
There are certain times of the year that is emphasised more and for me it’s usually around the end of the school year, start of the school year and Christmas. Trying to ensure that the children get to where they need to be is a task and a half but ensuring that a child with autism is adequately prepared often takes more planning.
My own stress levels increase around this time. I try not to apply too much pressure on myself and concentrate on the basics (brushing hair and teeth cleaning usually gets me by..only joking!!). It’s hard to be everything to everyone; be a good friend, daughter, partner, worker, mum. Shit. The list is actually endless but I think by now, people know that I give as much as I can and they know when they need to step in and help.
The saying goes You can’t teach an old dog new tricks but I would disagree. Since Joseph was born, I’ve acquired a whole host of skills. I know when to fight the fight and I know when to turn the other cheek. I know which people I want on my side and I know which people wouldn’t even make first reserve. I’ve never been one to shy away from fighting for the truth and for justice and that skill has enabled me to be a great advocate for Joseph.
His autism sometimes makes life very different for us. His autism often causes him challenges that I wish he didn’t have to face. His autism will make his future uncertain and for those reasons, I wish he didn’t have it. It doesn’t mean I wish I didn’t have him (although if we’re a little bit honest here, I’m sure there are times when we all question our decision to have children!), it doesn’t mean I am wishing for him to be someone else and it doesn’t mean I don’t love him. I simply want him to not have the struggles his autism inevitably brings.
There are a group of Perfect Parenters who lurk in the darkness of social media, hanging on to every word, every sentence that people such as myself say. They read words in isolation and then make their move, clawing away at every bit of progress a family has achieved.
NOBODY has it easy. Some have it harder than others but unless you have walked in that person’s shoes, you cannot judge a person for the thoughts and feelings they have. Every situation is entirely unique, even those who have common ground in disability and whilst everyone has a right to an opinion, the Perfect Parenters feel it acceptable to berate another person’s feelings just because they don’t match their own.
Parenting a child with autism is hard but it’s not the hardest thing I’ve done. The hardest experience I’ve had was speaking about how I felt when Joseph was diagnosed with autism. I heard so many people saying it was a relief and they wanted the diagnosis to access more help. I heard yet more people saying that life parenting a child with autism was beautiful, special and they felt that they had been blessed and because I didn’t feel any of that, I felt inadequate and a failure. This impacted on my ability to come to terms with the diagnosis and support Joseph effectively. I sank into a depression that I didn’t think I would be able to come out of but counselling got me where I needed to be.
His diagnosis was six years ago and I’m thankful that most of those dark days have gone but somewhere out there, there’s a person similar to me. They are sat alone reading the flowery stories and believing that some people’s kids shit rainbow out of their arses and cannot see a light at the end of their tunnel (metaphoric tunnel, not arse tunnel).
I want them to know that my child does not produce rainbow coloured turds and we’ve experienced meltdowns, flapping, sensory overloads, dietary struggles and communication problems to name but a few. But we are here and we have learned how to manage and cope with all of it. I want them to know that there will be days that they will be high-fiving and days that that they will be crying but they are not alone. I want them to know that social media is brilliant in that you can find support and solace but sometimes you have to search a little bit harder to find a kindred spirit.
Joseph may not produce rainbow turds but he has the most amazing spectrum coloured coat and I’m certain he will continue to progress (and drive me nuts). For all the times I slate him for being The Sleep Thief, he is undeniably the most inspiring small (big) person I have ever met (and he happens to be something I helped create!).
And yes, if he does have the ability to access this blog in years to come, I want him to know all of this. I want him to know how I told his story, that I found life difficult because I was fearful of the future but we came through it.