Surviving Summer (E13)

Day... I've lost count at this point. But it's *almost* mid-August- fuck yeah! You'd be forgiven for assuming it was September already given the current state of the British weather, but hey ho, such is life in the UK.

Apologies for the sporadic updates; I'm sure you're all on tenterhooks to hear all the tiny details of my epically thrilling existence. The last few days have been a little crazy. Crazier than baseline batshit level.

The B-boy has finally realised it's the summer holidays and the lack of routine is starting to get to him. Additionally, in order for everyone to emerge in tact in September, we have a rota of carers and me for covering most days. However hard I try to explain it's literally impossible to communicate to people the mammoth emotional, physical and practical drain of caring for a kiddo who needs constant line-of-sight supervision. Add in the inability to communicate verbally, the ADHD, the constant sensory seeking, the processing and social difficulties and the likelihood of monumental meltdown at any given moment and you have a recipe for instant insanity. We can't access much 'mainstream' stuff in the summer- we live in a tourist location.
If the weather's good there's mad traffic to get out anywhere remote, and if the weather's crap the soft plays/rainy day options are stuffed to bursting. None of which works for a kid who swipes at/pinches/runs into anyone he deems to be in his personal space.

The random juggle of us and (super-fantastic brilliant) carers adds more chaos to B's life when school is out, which pains me. I'm headstrong, and hate asking for help, so to be dependent on outside sources to just survive the holidays is a little bit soul-crushing if I'm honest. But it's just not tenable any other way. The last couple of days have been particularly tricky-B has spent most of his waking hours targeting Little Miss Mouth as an outlet for his physical frustration. She's covered in scratches from the times we don't get there fast enough or don't predict it coming, and I'm covered in bruises and pinches from daring to intervene. While we tell him no, I'm not sure he understands his behaviour or has much conscious control over it, but holy hell does it ramp up the emotional tension. I'm exhausted.

Thankfully S is off this week, and we've timeshared the kids to try and give each other some time, but having to constantly plan three steps ahead at every given moment somewhat sucks the joy and spontaneity out of life a little. Sitting down is not a thing. Drinking a hot cuppa? Fuck that. When keeping your child alive is the best you can hope for, life goes from thriving to surviving.

We did manage a nice trip out to Brownsea Island on my birthday. B did really well on the boat, but needed piggy backing and jigging most of the ride back to stop him running into randoms-his current favourite pastime. He's unfortunately crotch height or arse height, depending on which way his chosen victim happens to be standing. Either way, launching into people full pelt and leaving souvenir dribble marks in unspeakable places isn't exactly appreciated by the majority of the general public. Fair. Teen Queen was incredible, as ever, and stood by me while B's increasing agitation at being held resulted in strangleholds round my neck a few times. A few people threw encouraging smiles our way, since it's patently obvious B isn't in any way typical, but most people just prefer to keep their heads down. The occasional insensitive idiot makes a negative comment or rolls their eyes, and instantly regrets it. There are more than enough limitations on our lives thanks to B's condition- something way beyond anyone's control. I point blank refuse to let social pressure and people's intolerance limit our opportunities further. Fuck that.

Given it was my birthday recently, I also escaped for a night yesterday. Live music gig, natch, with a couple of mates, one whom I haven't seen in a really long time. It was excellent. Having such full on life responsibilities is a great (if stressful!) way of realising what really matters- perspective is an incredible thing. I can honestly say I give zero fucks what people think about me or the way I do life- I'm way too busy advocating for my kid, fighting shitty systems, and generally trying to keep my head above water. Part of that surviving involves the occasional space to just be me- that's hugely important. And when I get those times, I make the most of them and party hard. Last night featured beer, jigging, sweating like a lady-who-lunches at hot yoga, and catch ups with friends. It was most excellent. Today features slightly hungover me, lots of water, and S taking a hit and doing The Emoji Movie (😆) with the girls while B is at playscheme.

Oh, and a HOT CUPPA BABY! It doesn't get more luxurious than that! Solidarity to all you special parents treading water. I get it. I so much get it. You rock.