Playing from the bottom of the deck

In this card game, poker faces are preferred

I haven’t said too much in the short history of this blog about my daughter Amelia’s diagnosis of autism.

I’ve touched on it and certainly described many related behaviours, but we are only at the beginning of what this news means for our family.

I’m reluctant to be too definitive about it because the diagnostic progress takes a long time and we are currently stuck in the no-man’s-land between one stage and the next.

Since March, when our paediatrican first put the words autism and Amelia in the same sentence, we have spent an agonising four months waiting to see the next specialist in the queue to assess and confirm the diagnosis.

While we have been in this frustrating state of diagnostic stasis, Amelia’s red-flag behaviours have persisted and some have begun to escalate beyond our reach.

As parents, we are running out of strategies to alleviate how far these things impinge upon Amelia’s generally happy day-to-day existence. We needed help at least a year ago, so July seems so far away, even if it’s nearly upon us.

I am trying not to worry, to smother my anxieties as they creep up my spine and into my harried mind. But it’s hard to hold onto the distant promise of answers to the question I ask my husband every night after we turn out the light: “Do you think she’s going to be okay?”

Last week, my Mum and I decided it would be fun to teach Amelia some card games. It was cold and rainy outside, so we thought some old-fashioned parlour games would keep us all entertained.

We opted for ‘Snap’, because it’s easy to teach and is great for learning about matching pairs and turn-taking. The three of us made a little circle on the floor and my Mum dealt us cards from the deck.

After a quick précis of the rules, the first game of Snap kicked off without a hitch. Initially, Amelia seemed more interested in her cards than the object of the game, but she was so happy to be hunched on the floor with us, thick as thieves, that it didn’t matter.

The she warmed up and started to appreciate the simple joy of smacking your hand down over a jumble of cards with a pair on top.

It made me laugh that she kept playing her cards from the bottom of her little deck, almost unconsciously. She would have made the long line of wily card players in my family terribly proud.

I have to admit that my Mum and I are outrageously loud and competitive people when we are fired up and this day was no exception. We were really getting our Snap-groove on, leaning intently over the cards, and screeching like banshees when a match was made.

We forgot to yell “Snap” and instead went with a sort of barbaric “Yaaaaaaaaaaaaaaaaaaaaah!!!” when a King fell onto a King or an Ace met its match on the carpet deck.

This should have been a simple and fun thing for us all to share on a rainy afternoon, and Amelia used to love joining us in moments of carefree hilarity. But this time she became deeply distressed by our laughter, by the volume of our voices and the changes to our facial expressions, caused by the ecstasy of winning. By our happiness.

This type of distress has been happening a lot lately. As soon as voices are raised in excitement or people are talking in higher volumes or laughing loudly she is gripped by a terrible anxiety and starts yelling “No laughing, no laughing!”

Amelia runs at us and puts her hands over our mouths, desperate for the change in atmosphere to cease. We have to hug our girl to reassure her that everything is alright.

Her fingers will frantically pull at my mouth as she shouts at me to “smile, smile, Mummy!” There’s something comforting or recognisable Amelia wants to see restored in my expression, volume and tone.

She watches my face incessantly but her wires are all crossed so the signals that should tell Amelia that I’m happy/pleased/relaxed are being received as a mixed message that is both negative and scary.

This extreme reaction now intrudes on many conversations or occasions of spontaneous laughter both at home and when we’re out visiting people. It is upsetting and baffling to watch and experience.

The rainy day card game was no different. Amelia just couldn’t handle the raucous play going on around her, even though we tried to explain that laughing is good and we were only having fun. But she didn’t understand.

There was something so dreadful about the gulf between the collegial laughter that my Mum and I were so enjoying and her absolute terror – and that’s what it was – at the sound and sight of us.

We fought hard to control ourselves, like naughty schoolgirls confronted by a forbidding teacher who definitely does not get the joke. But in this case, it was my poor daughter, who was now sobbing and begging us to hold her so she would know that everything was fine in the world.

But it’s not, is it? How can it be when a game of cards and shared laughter can reduce Amelia to an emotional wreck? What is happening inside her to make her so increasingly confused and upset by these shifts in the behaviour of people she knows so well? How can the sounds of merriment be so lost in translation that they become threatening to a child?

How did we get here? And how on earth do we find our way out?

July cannot come soon enough for the number of questions we have and the answers we so urgently need.

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6 thoughts on “Playing from the bottom of the deck

  1. Hi Mel, I just read this and have been thinking about this since yesterday. I wonder whether Amelia’s response might be partly due to feelings of being ‘left out’ or ‘excluded’ – whilst the whole point of what you are doing is to help her to learn about sharing in these fun experiences so she can be part of them, I am wondering whether her distress appears when she sees that you and your Mum are both clearly sharing something or experiencing something wonderful that seems inaccessible to her. Does this tend to happen more when there are three people involved? Does she get distressed when you and her do something together that makes you laugh? Try a game of snap with just the two of you and see how she responds – just a thought. And yes, you are one courageous, amazing parent, Helen xx

    • Hi Helen, it’s an interesting idea and I think the ‘being left out’ thing has some credence for sure. Will observe and see what comes up. It’s concerning because in a group of 3 she didn’t used to feel lost so I don’t know what’s changed. Usually when larger groups of people are talking or laughing Amelia will just switch off because she can’t access what’s happening unless people remember to keep including her. Maybe she’s had enough and has chosen a more dramatic way to regain some social control. Who knows? Because she isn’t able to tell me. Thanks for taking the time to turn it over and send me your thoughts. I’m so grateful! See you again soon xxx

  2. Melinda, thank you for sharing yet another precious moment and reflection about your life. Your little girl, Amelia is such a wonderful girl. reading about her and hearing about this aspect of challenge for her where she feels fear at times of sudden excitement and heightened expression is a conflict for you that I can tell pulls on your heart strings. I really believe that in time, she will feel less anxiety and discomfort at these moments and will attribute a positive response and social connection. You will be there every step of the way and she will be okay, I have no doubt in her resilience and your selfless love as her mother, together your determination and hard work will bring a peace and order to any challenge she may face as a result of her special way of living, for she is just marvellous and special. thank you again and please know that I’m a supporter, admirer and believer in you & your little one, Amelia xo

    • Hebah your words are so encouraging. I also think that with some help Amelia will be less anxious – she just needs some guidance to uncross her wires so that messages of happiness don’t come over as something scary to her. Hopefully we’re not too far away from some support. Thank you for always bring so kind and lovely.

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