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Day 52: Holidays SEN-style

October half term. A week without school. A time where many fly away to top up on sunshine before the cold, hard winter really sets in. For those who stay at home, there are meet-ups with other families or friends, day-trips out and sneaky glasses of wine for the Mums who are co-ordinating the whole thing. Luckily there's not much sun at this time of year, so the 'yard arm' does not apply. I'm only on Day 52 though, so there's no drinking my way through this one.

So what will we do this half term?

The Cat will recover from the stresses of school by wearing as few clothes as possible - only underpants are obligatory around here, and even that takes some persuasion. Many autistic children are also diagnosed with Sensory Processing Disorder, and in The Cat's case, his skin is so sensitive that just wearing clothing can make a day harder than it should be. Noise and smells are similarly problematic. So at the beginning of the holidays, and on Saturdays, we have a deal that he can sit in a darkened room in his pants and do very little at all. It's our only chance of getting him back out again on a Monday, and by the end of this half term, we were struggling even with that. We got him into school for the last couple of days last week, but I have a lot of work to do before he's comfortable again. I'm so very grateful, though, that there are people at school who will work with me and keep an eye on him. Over the last two days, then, since the half term hols began, he has been floating around the house in pants, with a fluffy blanket. Yesterday he took the reduction of 'sensory irritations' a step further by chopping out a great chunk of hair so it wouldn't tickle his forehead or get in his eyes. Ho hum. Nice to see some initiative, I suppose.

The Dog will rush around madly, missing school and the stimulation it brings. As with many children with ADHD, his brain works at least as quickly as his body, and he needs to be constantly stimulated both physically and mentally in order to avoid the crashing panic of a spare moment, or of not knowing what will come next. (He is diagnosed with 'ADHD inattentive and hyperactive', but you can also be diagnosed 'predominantly hyperactive' or 'predominantly inattentive'. The 'inattentive' version is what used to be called ADD (Attention Deficit Disorder), and I suspect at least one of my other boys has it, but am endlessly frustrated by people saying 'He can't have ADHD because he's not wriggling'. Fine, his body isn't wriggling, but his mind is a seething mass of thoughts and stimuli and reactions, and that actually might be why he's frozen still and not producing any work. If it were appropriate for me to growl as loudly as The Cat, I would.) (Sorry, bits of the ADHD rant I keep promising are starting to seep out!)

So where was I? The Dog at half term. Yes, the reason he's called The Dog is that he needs to be run daily, and occasionally fed and watered. And he's a bit of a greyhound: lots of running, and fast. His record over the summer holidays was seven sporting activities in a day: football, cricket, cycling, running races, trampolining, tennis and pull-ups of various types on the pull-up bar we've had to put up in our hallway to exercise him on wet days. He was a very happy Dog, but the rest of us were our knees. Then we had the (mostly pre-medication) holidays where he ran out of things to do, and we ended up with a wrecked house and a brother with injuries, because if you're bored, a quick way to liven things up is to stab someone with a pencil, push him down the stairs or jump on his head. Now, thank god, we've found not only medication but also football day camps, so for three days of every holiday week he goes out to play football for about five hours, while the rest of the family gathers their strength for the four days that remain. This all sounds really negative, but I actually love his enthusiasm and energy, and because mental stimulation keeps him occupied as well, he's the family champion at board games and can be distracted by crafting challenges as long as he's had a good run-around first. Everything is a competition, so I can even sometimes get him to play 'beat the clock' with a supermarket shop. Waking up to his energy in the early hours almost kills me, but I'm not dumb enough to decaffeinate myself just yet, and he's got used to jumping alone on the sofa until I begin to function. After that, it's just a case of watching him and thinking fast if you see him approaching an empty moment.

And so to The Big Boy. How I love that boy. Although he has Aspergers and suffers with anxiety and very low self-esteem, he is by far the most flexible of the three children, and the most able to go on holiday. As such, he's the biggest loser in our 'adapted' life, with its darkened rooms at home and boring routines. He does like a basic routine, but he is capable of so much more of the type of holiday we'd imagined having with our kids. We ache to take him abroad and up mountains and to do things on the spur of the moment. Yes, we'd have to make certain adjustments to account for his anxiety, but he is now mature enough (and therapised enough) to get something from new experiences. Holidays at home are a form of torture for him, as his anxiety is mostly centred around his brothers and the things they might do. It's even been suggested to me that he might be suffering from PTSD after The Dog's violent pre-medication years, where all the kids watched me restrain The Dog several times a day, and we were all injured at various points. And so our holiday focus for The Big Boy is to build in respite time. He has a Mummy Day and a Daddy Day every holiday. Predictably they follow a strict routine, but crucially can now happen on a day's notice, rather than being booked a term ahead. Progress indeed, and even hope! Mummy Day involves garlic dough balls at Pizza Express, then a walk into town past Smiths, where he spends £1 on sweets, then a browse in Waterstones and the purchase of a book or two. He then reads a bit of each book upstairs in the Waterstones cafe while Mummy recaffeinates. I love it, and so does he. Daddy Day is sports-based. (Mummy sucks at sports, although I did run the Race for Life with him when he was The Not-so-Big Boy. I gasped over the finish line and he asked if we could do another lap.) (I just realised I'd typed 'nap' there rather than 'lap'. That was Mummy's preferred option, not his.)

Anyway, this leads on to this holiday's Big Change. After The Big Boy's school trip to The Peak District, he came home raving about mountains, and hiking. How my soul sang! If I could do anything instead of Real Life, it'd be hiking up mountains - followed of course by a nap on a lounger pulled into the shallow edge of a tropical lagoon. (I did in Tahiti years ago, before I moved to England. I didn't realise my twenties were awesome until I couldn't do things like that any more.) The Cyclist and I met when he wasn't The Cyclist, but we were both desperate to be outside and blowing our minds on beautiful scenery. Our first summer together was 7 weeks in a dying Vauxhall Nova, travelling across Europe and picnicking beside as many mountain lakes as we could access. We were campers and walkers. So after years of dragging moaning boys through the local woods and accepting that they hated the thing we loved most, this new interest in mind-blowing scenery put the biggest possible smiles on our faces. Within days we'd decided he needed this in his life - the break from the day-to-day to get out into the fresh air and feel small in a giant world. Sadly there is no way we could do this as a family, and no way I could be part of it, as The Cat in particular needs me within mewing distance when recovering from a half term of school. And so The Big Boy and The Cyclist are in Wales as I type, soaked to the skin and covered with mud, but having the best time they could possibly have. I am so happy that The Big Boy can have this experience (in spite of our circumstances and all that has gone before) that I could cry.

Here's the thing, though: I could cry for all sorts of other reasons too. For the fact that although we've made something happen that he desperately needs, I am not part of it, and he would hate this most wonderful of activities if we attempted to include his brothers. Family life for us is a case of divide and conquer - or perhaps divide and survive. One size is as far from fitting all as you could possibly imagine. Will that ever change? I don't know. We are all scarred by the twins' pre-diagnosis years and the violence of The Dog's pre-medicated time. I could cry because I wouldn't be capable of hiking up mountains even if I could get away. I abandoned self-care when the going was tough, and now I can't remember how to do it, so I am way, way too unfit to even consider that type of break. I could cry that my boy is now Big, and I can't keep up with him, but the years where I could keep up were spent in crisis control, battles for diagnoses and endless trips to professionals. I could cry that he needs this so much, and that I know he perceives every moment at home with his brothers as torture --  not because it is, but because that's his fixed idea about our family life. The top of a ridge in the back-end of Hurricane Brian feels safer to him than his home. You can think you've accepted something like that, but I'm not sure it's a thought I will ever acknowledge without feeling deep sadness and above all, regret. As Mum, after all, my job is not only to keep him safe, but to make him feel safe.

But you know what? This 90 days is supposed to be about self-care. About me for a change, not the others. So in writing about this week's holiday, what have I done? Talked about everyone else, apart from mentioning my own sadness, which is hardly uplifting. Holidays are tough in SEN families. There are no simple solutions, and in a home full of conflicting needs, Mums are on high alert the whole time, pre-empting meltdowns and balancing the demands of family members. I decided today, then, that my self-care challenge this week is to drink a cup of tea every day before it is stone cold. I will, as always, try to make the most of the time with the kids, because their beautiful smiles make me smile, but nothing will happen unless I get my cup of tea. My other act of self-care is to spend a holiday without drinking every night(/afternoon) in order to stay calm. It can only help when it comes to mornings, even if I'm raging and/or despondent from tea-time onwards. Surely? Yes? I really hope so.

And as soon as the kids are back at school, I will start walking up and down hills, so that one day I can take that Big Boy up a mountain.


In the community created by The ADD-vance ADHD and Autism Trust, many face far tougher challenges - and far tougher holidays - than I. Because ADD-vance is a community online as well as in person, we can share experiences, and celebrate or commiserate as the holidays go by, knowing there will always be someone who understands. Even sitting at home in my son's darkened room, I can reach someone via facebook, should I feel myself slipping into madness! Thanks to ADD-vance, SEN parents in Hertfordshire need not feel alone. To support the community that supports me, please donate via this link:
http://uk.virginmoneygiving.com/LizThompson

Comments

  1. Liz I love your writing so much. Another fab post x

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  2. oh please don't cry! I think many of us have had to accept that life is not what we thought it might be, that we can't follow our own personal dreams and make our children do it too - I guess that's what sets us apart from many parents and drives the need to find our own tribe who just 'get it'. Sending hugs, and caffeine for the rest of the holiday week. You know where I am ;) x

    ReplyDelete
  3. I just love your writing and I love the names you've given your family. I look forward to reading more ❤ I relate so much to you having three young sons myself, who I believe are all somewhere on the Spectrum x

    ReplyDelete
  4. Thanks so much everyone. So many of us are living this life that I sometimes begin to feel like we're a majority!

    ReplyDelete

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