Revelations of a Slummy Mummy

January is a tough month for most people. The financial wasteland that seems to stretch on forever before the long awaited January payday, the Monday-morning feeling which lasts for a whole friggin’ month, and the shitty weather - in the UK predictably alternating between crap-it’s-so-cold-I-just-accidentally-keyed-someone’s-car-with-my-nipples and oh-shit-it-looks-like-I’ll-have-to-swim-to-work-again. Not forgetting of course the in your face promotion of all things ‘healthy’ directly after a month of shameless media-driven hedonism involving alcohol, cheese, and a substantial increase in waistline. January is difficult again for me. It’s the month I lost my mum. Three years ago now she got unexpectedly sick with pneumonia, partly due to her poor general health but partly due to the one inadequate gas fire heating in her home, which she didn’t put on out of fear of not being able to pay the bill. All round, January is not my favourite or my best when it comes to happy months. If you ...

As much as I’d like to think of myself as an all singing, all dancing, all crafting Pinteresting super mum, I’m honestly not. The reality is I high five my reflection when I make it through the day with all four children plus my sanity intact. Parenting is some seriously tough shit. As those of you with small people will know, Christmas time amplifies the toughness tenfold- overtired tears, tantrums over nativity costumes, three thousand Christmas discos….and that’s only the parents. The military precision needed to execute the last two weeks of term borders on some mad real-life version of Risk. Day one: child one - school uniform, party clothes in bag, no snack. Child two - non-school uniform, party snack for sharing. Child three - School uniform, disco clothes in bag, pick up an hour later than usual. Child four - money for ice cream at the panto, school jumpers but any trousers (seriously, what sort of crap is the half school uniform thing?!) Day two- you get the picture. Dr...

When you have a significantly disabled child who isn't a wheelchair user, and who looks 'normal,' you step into a whole new realm of ignorance and intolerance. Basically, people can be judgmental arseholes. But we all knew that already right? Weight, parenting techniques, drinking habits, diet, haircuts, music taste, political preference.. you name it, people have probably judged it. The thing is, when it's aimed at a kid who is usually pretty vulnerable, and often can't speak out for themselves in the same way as an adult, it crosses a line. I've heard countless friends from the disability community recount times where they were judged for the behaviour of their children, often loudly, in public and without boundary. These are some of those genuine gems: 'Did you know before he was born he was going to be like that? Why did you carry on with the pregnancy? It would have been fairer on everyone if he wasn't born, don't you think?' *mid-melt...

Yesterday was World Mental Health Awareness Day. I know there seems to be an awareness day for something pretty much every day of the year these days- my favourite being National Dogs in Politics Day, September 23rd if anyone's interested- but mental health is a topic that has influenced the very core of my being.... and so I couldn't let the day pass without adding my voice to the growing song of wellbeing, a song whose music is sometimes uncomfortable, often chaotic, but always achingly raw and honestly real. My first thought was to write about my Mum; she was plagued with various mental health issues for most of her fleeting existence. St Ann's, the local psychiatric hospital, featured regularly in my every day as a child and even now, as an adult, just thinking about it sends a cold jolt of adrenaline through me. Everything about it was scary as hell; it seemed alive, the looming stone walls hiding the secret of a swallowed section of society. But a story is always ...

Useful things I learned while camping. 1- Kneeling on a tent peg shits all over stepping on a lego brick in terms of ouch value. 2- Putting your tent up in the garden pre-festival is ALWAYS a good idea, unless you want to provide the tent neighbours with two straight hours of comedy gold. 3- The poles on the back of portaloos are ingeniously engineered for those desperate moments where hovering is the only option. Trust me and try it next time- that little gem is a keeper! 4-Wearing the same clothes continuously for the whole weekend really doesn't make you smell as bad as you'd think. Or everyone else smells just as bad. Either way, win. I spent the last few days camping at End of the Road music festival. It was incredible; the music was amazing, the company even better (big shout out Ben, Dave and Stew) and I lost count of how many pints I polished off. (Thanks again Ben, Dave and Stew, I think I owe you all at least seventeen drinks...) But the name is apt- I arr...

It’s hard to describe the feeling. The feeling when you walk into a room full of strangers who you instantly recognise as family. People from all corners of the globe who are linked intimately with you through random happenstance (I only just learnt that was an actual word- I LOVE IT). People who get it, who face the same struggles daily and who understand, really understand, how crazy life is without you ever having to utter a syllable. Last week I had the incredible opportunity to attend my second conference for families affected by dup15q syndrome, the rare chromosome disorder my son B has. The dup15q expresses itself differently in different individuals, but the overarching symptoms are the same throughout- low muscle tone, autistic features, communication difficulties, sensory processing disorders, cognitive disabilities and seizures. Living with this cocktail of issues is hard, and a big part of that difficulty is the isolation factor. Families with kids of the same age are now ...

Today is Monday. And today I am exhausted. After a couple of weeks of feeling like we were winning the battle against epilepsy, we had an epic fail over the last few days. I can’t describe exactly how draining this journey is; every single day is an unknown and the Lennox-Gastaut syndrome demands every ounce of our energy in caring for B.   Up until now the most prevalent seizures B has had have been obvious. Big head or body drops, being flung backwards across the room, being unresponsive and vacant. Distressing to watch, and time-consuming to record, alongside the constant background decision making on what necessitates extra meds intervention versus what B can cope with. The seizures are so sneaky though. Once you think you have a handle on what’s going on, it all changes. On Thursday B needed to be woken up- for a child who regularly wakes between 4.30 and 5.30 am bouncing off the walls and ready for the day this was highly unusual. More alarm bells started ringing ...