To stay or go? When getting out means melting down.

Boy on a path by Someone's Mum

In the words of Bilbo Baggins, it’s a dangerous business, going out your door. If you have a child with autism, leaving the house can take on the epic highs and lows of a trip to Mordor.

When we began to appreciate Biggest’s difficulty with routine and rigidity, when we knew that it was something he wouldn’t grow out of, at least in the traditional way, we decided that we would do our best to still get out, to still do the things we knew he would find joy in, if only everything went to plan. But it is a decision that causes me constant worry, constant doubt.

It’s fifty-fifty.

Flip a coin for delight or despair. On excursions I thought he would love, he is overwhelmed with anxiety –

At the Westonbirt Christmas lights the crowds at the entrance disturbed him from the beginning and he sobbed until he could barely breath.

At the top of Broadway tower, the castle that so enthralled him on the pictures, the wind made him scream as if he was in pain.

At a beach by a lake, the touch of sand was unbearable, even though he will play for hours in sand at home.

But…

Away for a night in a strange hotel, sleeping with all of us in a different room, he was calm, relaxed – a huge upheaval, without the slightest fuss.

On a different, windless day, at a different castle, he was curious and excited, exploring each echoing room and laughing gleefully as his own voice was reflected back at him.

When we nervously decided to go to the fireworks, despite the noise, the crowds, the dark – he was a whirlwind of delight. A slight wobble before his ear-defenders were secure was quickly forgotten, and he spun and flapped and danced, shouting out each colour as it exploded into the sky.

All too often, it is small, unpredictable things that spell disaster. The things I thought he would relish are disturbed by something I cannot control, by expectations that are not met in ways I can never see beforehand.

There is no way to know which tiny details he may fixate on.

At a wildlife centre, bales of hay tormented him. Other children climbed and leapt from them but he stood and screamed. They were too high up, they would fall, it was dangerous. He could not bring himself to look away, could not be persuaded or cajoled to leave. He had to be carried away, kicking and screaming, until he could forget the fear that consumed him.

At a farm, another boy insisting that a well was for wishing made him rage and howl. It was just like the drawing from a book at home – a picture of a well that was not used for wishing. The boy was wrong, wrong, wrong and none of the other sights – no animals or play parks or tractors – nothing could distract him from his rage.

We plan excessively. We show pictures. We explain. “First we will do this…. Then, next we will go here. There may be lots of people. This is what it looks like. Here is where we will have lunch…”

Everything is set out. Reminders are given over many days – sometimes weeks. Headphones and tablet and the right cup and the right spoon and the right hat are packed and always ready.

But it is never enough. We flip the coin, we run the gauntlet.

The doubt is always there. Is this wrong? Should we have brought him? Am I making it harder for him? Even worse, am I selfish? Are we enforcing the life we thought we would have, with no regard for what he needs?

I do not know.

On the dark days, when I can bring no comfort and he is lost in a storm that I cannot control, that I must wait to subside, the thought resounds in my head – would this be happening if we had not come? Would he be happy and calm?

Perhaps. But there are no guarantees at home either.

I hope that as he grows, as we all learn together, we will find a balance. For now, going out the door will always be a chance.

Heads or tails?

 

The world is indeed full of peril and in it there are many dark places. But still there is much that is fair. And though in all lands, love is now mingled with grief, it still grows, perhaps, the greater.

― J.R.R. Tolkien, The Fellowship of the Ring


To read more about our autism journey, you might like ‘Autism? More like bad parenting’.

14 Comments

  1. 15th December 2016 / 2:17 pm

    I wish I had the answers. It’s a question I’ve asked myself so many times. Number One enjoys things more with hindsight than at the time. She often looks incredibly stressed at the time but then once home will reflect on the day with pleasure. In theory she wants to go out, the reality often looks different x

  2. Angie Watts
    15th December 2016 / 2:43 pm

    This LOTR nerd thanks you for another beautiful post! My kiddo is 8 and it’s still a coin toss. He’s a runner too so the safety issue keeps us home more.
    Your little ones are lucky to have a mom that so obviously loves them and wants what’s best. And we readers are lucky that you share your journey with us. <3

  3. 15th December 2016 / 4:51 pm

    For us it’s been less of a question of whether we should try them, as our girl generally refuses to go out in the first place… so I would say yes, while your preparations work and he will leave the house, try and do whatever you want to as it’s less isolating and will be exposing him to situations which he may learn from. But only do as much as you have the energy for; don’t feel like you have to go everywhere and tick all the boxes which parents with NT children might… x

  4. Standard Deviation
    16th December 2016 / 7:19 am

    What a beautiful post. My child doesn’t have ASD, but does suffer from anxiety, and I recognise a similar dilemma – regardless of the preparations and his previous responses, much is unpredictable. Avoiding situations confirms and ‘validates’ his anxieties, but a bad experience whilst facing them can exacerbate them hugely and undermine his hard-won security.
    Your Tolkein quote sums it up perfectly.

  5. 17th December 2016 / 5:38 pm

    It sounds to me like you’re doing your absolute best as a parent. If you stayed home all day everyday what sort of life would that be?

    Take care x

  6. 17th December 2016 / 7:08 pm

    I admire your strength – still making sure that you provide variety in experiences for your children, not knowing how they’ll react on that particular day. You have my utmost respect. Beautifully written post x

  7. 18th December 2016 / 10:32 am

    The more we go out the more we learn. But it’s not always the problems that we expect. But if we never left the home we might never figure things out. We only figured out why Davids meltdown when we went to get the Christmas Tree on the way home. It’s on the blog tomorrow.

    It’s also hard when there are other siblings who want to do things and you want to go out as a family. Every now and again we have separate days.

    Love and hugs xxx

  8. 19th December 2016 / 12:13 am

    You have good strategies to help him with his anxieties and I hope with you that the reinforcement of this over and over again will yield more calm responses and delights in the future. #UKParentBloggers

  9. 9th January 2017 / 12:39 am

    I admire and appreciate your flexibility 🙂 As an Aspie/autistic person myself, I always appreciated (and still appreciate) when my mom/doctor/dentist/husband/etc (fill in the blank) makes the effort and takes the time to explain to me beforehand what to expect. It reduces the anxiety for me by making uncertain blank slates, well, more certain 🙂 Sometimes details that weren’t thought of as important (no one’s fault) get missed; no one’s perfect 🙂 But I think your son will probably grow to accept certain unknowns as an unavoidable fact of life. It certainly helps when mom is cool, which you clearly are :))

  10. 10th January 2017 / 8:40 pm

    All of this! It’s usually the things I’m sure she’ll enjoy that end up as disasters, and the things I think will pose problems that she breezes through no problem! Funny things, aren’t they? @mumsomeone #SpectrumSunday

  11. Kim Styles
    13th January 2017 / 7:15 pm

    It must be so difficult, but you have to give them learning experiences .

  12. 15th January 2017 / 7:16 am

    Loved this Danielle. I know so many times we have had all the best intentions and made the right plans and it’s gone terribly wrong and then other times when we least expect it it’s gone right-with less planning! #spectrumsunday

  13. 17th January 2017 / 10:33 pm

    Everything in moderation is one of my favourite sayings 🙂 I think you’re doing it all right, you’re still getting out and you are learning from every experience x

  14. 18th January 2017 / 12:59 pm

    Yes. This.

    You just never know whether leaving the front door – to nip across to the shop or to go for a whole day out – will lead to a joyous outing or screaming and kicking.

    #SpectrumSunday

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