It’s the summer holidays. Six lovely weeks of sun, fun, days out and making memories! Or… not. If, like me, you have a child on the spectrum, the summer holidays can be six long weeks of misery.

The holidays, whilst needed to give our children a break, are also a break in the structure and routine that our children often so desperately crave. The sameness of a school day makes them feel safe; they know what to expect and this reduces anxiety and fear of the unknown.

Holidays mean ‘different’. Less structure. Other siblings to account for. New activities, new places, not really knowing what’s happening from one day to the next.

So far this week we spent the first two days at home, mostly entertained by tablets and the mud in the garden. But, yesterday and today, I have tried to do two fairly ‘normal’ activities with Tink. Activities that I would take for granted with H, but that both had an unsuccessful end.

Yesterday we went to the cinema. I saw that there was a ‘big screen’ showing of ‘Paw Patrol on. It was early morning, so likely to be quiet. Tink has only been to the cinema twice before, when she was much younger and more compliant! I know she’d never sit through a regular kids movie, so I’ve never bothered trying to take her and tend to just go with H. But this was just three episodes of one of her favourite shows. What could go wrong? She was excited when I told her: “I see Paw Patrol, Mom?” (over and over…).

It all started quite well; the cinema was all but empty (phew!) and we sat right at the back, as far away from the other two families as we could. I say ‘sat’, but that was problem number 1: Tink doesn’t do sitting. At least, not in one place for very long. She jumped up and down, ran along the row again and again (noisily) and repeatedly threw her dummy across the rows of seats in front, meaning I had to keep searching for it in the dark.

Then about fifteen minutes in, she declared, loudly, that she wanted to go home. I managed to hold her off for another half hour, but we did indeed leave before the end. She’d barely watched any of it anyway.

I felt like we'd failed, even though, deep down, I know that it's just one of those things. Click To Tweet

It was very dark when we went in, and I think this unnerved Tink. Then the sound was loud and I had, stupidly, forgotten to pack her ear defenders. These things probably made an already ‘different’ experience just too difficult for her to bear.

Who sits down at the cinema anyway?!

Today’s fail was something we’ve done countless times before, and even used to do as an activity: shopping. Just a simple, quick trip to the supermarket to pick up a few things ended in tears (mine). Tink loves going to the supermarket – always has. But now she’s too big to sit in the nice, safe trolley, restrained and controlled! And now she knows where the toy aisles are. Shopping is a nightmare that I usually try to avoid if she’s with me, but Daddy is away and we needed stuff… “It’ll be ok,” I thought, “we’ll just nip in and out.”

The first problem came when I realised I didn’t have a pound coin for a trolley. Tink likes to push the trolley and at least I know where she is if she’s doing so. Most of the time. So, today, a basket had to suffice. I had a re-jig of my mental shopping list, eliminating anything that was heavy or not absolutely essential. But, carrying an increasingly heavy basket at the same time as trying to hold the hand of a desperate-to-escape Tink proved too much. She repeatedly ran away from me, leaving me standing in the aisle, calling her name, scared to move in case we missed each other as we went in different directions. The list of absolute essentials was getting shorter by the minute.

We eventually got to the self-service checkout (why do I keep using these?! Every time I swear never again!) and I dumped the heavy basket and arranged my shopping bags ready. As I did so, Tink ran. Back up the shop, towards the toy aisle, of course. I shouted her name, and several people looked at me, and then at her, disappearing up the shop, but not one person made any attempt to help. I abandoned the shopping and ran after her to encourage drag her back. By now, I was pretty much in tears, but Tink was laughing; it’s all just a game to her. I managed to get her to help scan the shopping (it was still there, phew!), including her magazine, which she then wouldn’t stop asking for, and paid so we could get out and back to the safety of the car and, ultimately, home.

And so, home becomes our sanctuary. The one place I know she’s safe – mostly. A place we don’t get the stares and judgey looks from others.

Knowing what often awaits when we do attempt to go out can mean that staying in is a much, much more appealing option. But there’s only so much you can do indoors in a confined space, and so, after a while, home becomes not a sanctuary, but a prison.

We start to feel trapped within the confines of our own walls and by my anxiety about what might happen if we venture out. The places I can take Tink on my own are becoming few. We can just about manage the park and playground, and, bizarrely, even places like CBeebies Land, as we did recently. But, these are places that have lots of things for Tink to do and to focus on, so the chances of her running away are much reduced.

Simple day-to-day activities that I once took for granted are becoming almost impossible, or, at best, not at all enjoyable.

I am keeping everything crossed for good weather in a week or so, when we plan to go camping. I know that this is something Tink loves and absolutely thrives on, even though it’s something different. I’m hoping we can all feel more relaxed, for a week at least.

And then, when we come back, I need to put some more structure into our days so that our home does not imprison us for the remainder of the holiday, but once again becomes somewhere we can all feel safe and happy.

 

Lucy At Home
Mummy Times Two
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Summer with my spectrum child: when home becomes a sanctuary – and a prison
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5 thoughts on “Summer with my spectrum child: when home becomes a sanctuary – and a prison

  • July 31, 2017 at 3:06 pm
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    My son has yet to be diagnosed (we’re on a waitlist for a reassessment) but we share the exact struggles as you share. I felt a weight off my chest when I read this knowing that I’m not alone in our day to day struggles. I thought I was being a lazy parent but as Sarah mentioned so many activities aren’t worth the stress. Thank you so much for sharing so openly!

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    • July 31, 2017 at 3:50 pm
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      Thanks for reading! I don’t like to come across as negative, but I think it’s important to highlight the struggles so people (like you!) know they’re not alone. I feel so lazy often, but then I think about the impact a ‘bad’ day out can have and it makes me feel better!

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  • August 2, 2017 at 1:43 pm
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    Oh I feel the same. My pre teen has autism, she will sit in her bedroom and watch tv and play on her tablet all day if i let her but taking her out though is really hard work. She will wander of when she loses focus completely unaware of where she is. She is very defiant and have abandoned our days out on many occasions because something has happened and she wants to go home. My 6 year old needs a visual timetable of what we are doing every single day and if there is change then we have tears and tantrums. I have to be so choosy when we go out to make sure it is right for both of my kids. #postsfromtheheart

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    • August 3, 2017 at 7:50 am
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      It can be so hard, can’t it? And even more so when there’s a few years between them, as what suits one often won’t suit the other! Thanks for reading x

      Reply
  • August 6, 2017 at 9:54 pm
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    Harry doesn’t have any additional needs and this still happens to me . I spent £30 in food & tickets to take him to see The Lego Movie and we saw 3.30 minutes of the film before Harry decided he wanted to go home. We have also put Morrisons near us on total lock down when he ran away from me and a lady said she saw a man holding his hand walking off with him. Luckily it wasnt Harry and the poor man was holding his grandsons hand. harry was found in the pic&mix Aisle #PostsFromTheHeart

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