This post is more than an account of what kiddos on the autism spectrum can experience day to day. It’s a story about parenting, about courage and learning, about understanding and listening, about encouraging and pushing when you have to in order to help someone succeed. It’s a story about a parent just as much as it is about a child, I think, and that mingling of perspectives caught my eye as I read. Sho H, author of this post and its blog source, H2Au: the stuff of our life, is a blogger, copywriter and freelance writer. Also published on The Mighty, she writes about Autism, hidden disabilities and parenting children with additional needs. She lives in Scotland, UK with her husband and two daughters, and her work can be found at the following links:
Author: Sho H.
“It’s been a very bad day Mummy” was the phrase repeated continually yesterday evening after I collected Little Miss H from school.
Standing in the playground I knew it had been. I could tell by her gait, by her facial expression, by the purple bags under her eyes against her too pale skin, by the sadness of her aura. As she slowly walked towards me, scuffing her boots along the salted concrete of the playground, her eyes downcast, her hand up to her mouth chewing her sleeve and her water bottle hanging forlornly from her other hand, I knew we were in for a tricky evening.
I suppressed the urge to say “stop scuffing your boots” (do you know the damage the salt does to the leather?), or “stop chewing your sleeve” and instead just held my arms open for her. She doesn’t usually like public displays of affection especially at school (“It’s against the rules to hug and kiss at school”) but I could see she needed some overt love.
She didn’t come into my arms for a cuddle but she was demure and allowed me to touch her arm.
Her water bottle had been broken that day and she was frightened she’d be in trouble. Mostly though she was just sad. Disproportionately heartbroken actually. You see change is hard for her. Saying good bye to things is really hard. Her stuff is her portable safe space that she attaches so much love and importance to, it keeps her grounded so to have a piece of it broken is like someone throwing a brick through your window. It is devastating for her.
Of course I reassured her that the broken water bottle could be replaced. [No it won’t be the same one, it’ll be a new one but you can choose it. No I can’t fix the old one. Yes I know X person gave it to you for your birthday and yes I know it’s the fourth one that’s broken in however long. Yes I know it matched your pencil case and yes I know it was a ‘Frozen’ one].
With an unexpected burst of energy she was suddenly confrontational. These shifts come out of the blue.
We were due to take Tiny Miss H to Rainbows and this was suddenly proving too much for her.
She was shouting at me that she didn’t want to take her to “stupid rainbows” and it wasn’t “fair”, that she’d “be bored” and why should she have to go with us just because Tiny had an activity…. And so it went on. The real issue is she wanted her safe space, she wanted to hunker down after an exhausting day.
The challenge is enabling Tiny to maintain an ‘ordinary’ life, which includes after school activities, at the same time as supporting Little’s needs. If anyone has the answer on how to get the balance right please let me know.
There isn’t an option, she is eight years old, she was coming with us, so with my arm wrapped tightly around her shoulders we walked towards the car. The deep pressure, once she’s ready to let me touch her, is very reassuring for her and being hypo-sensitive she needs a very tight squeeze. So it was that I held her as firmly as I could with one arm whilst holding Tiny’s hand with my other hand and walking clumsily as if in a sort of three legged race, bags bashing against my shins, all of out of sync, we somehow managed to get to the car!
That’s when she said it “it’s been a very bad day mummy”
Chats in the car are usually the most successful; no expected eye contact, the crowd and melee of the playground has dispersed and we are away from the source of stress.
It turned out that she had been “mobbed” and crowded around at lunchtime in the playground and she didn’t have the ability to extract herself. She didn’t know what to do, what to say, who to go to for help. So stuck in the mob, she drowned. She’s carried that with her all afternoon.
The physical toll it had taken on her was visible to see. She was anxious, stressed and absolutely exhausted.
This on top of the broken water bottle made it “a very bad day”.
Within the 7 minute journey home she had told me it was “a very bad day” about twelve times.
This is echolalia, repeating herself is a form of stimming. It helps her cope with anxiety.
When she has bad days we have a ritual which helps her get from the car to the house and that is a “Mummy squeeze” once in the kitchen – a prolonged super tight cuddle. It physically hurts me she is so strong, but it is what she needs so squeeze away we do. I feel like a tube of toothpaste being squeezed, I can barely breathe, she feels like I’m lightly holding her yet I’m using as much force as I can muster! “It was a very bad day” she mumbles into my chest.
This helps her calm and from there I was able to persuade her that whilst Tiny was at her Rainbow’s Pyjama party we would go and choose her a new water bottle.
Meanwhile she’d also clocked the box of books in the hallway that we inherited a while back from cousins and I’d been storing in the garage. Luckily they proved a timely distraction! “It was a very bad day mummy” she muttered to the books as she rifled through the box.
We successfully deposited Tiny at her pyjama party but with all the distraction I had forgotten her cuddly toy and blanket…cue a mini tantrum from Tiny!
Finally extricating myself from the clutches of the Tiny tirade – I escape outside frazzled and on tenterhooks to persuade Little to walk with me to the butchers before going on to buy her bottle. Reluctant to walk anywhere normally I was braced for the fall out but in response all I got was “It was a really bad day Mummy”. She was so well behaved in the butcher’s that they gave her a fudge. She decided it had been worth walking! “Still a bad day?” with an eyebrow raised, “Mmm” she shrugged, “it’s getting better”.
On to the supermarket to buy her bottle, I managed to persuade her to make a practical and useful choice that would withstand at least some playground action without too much argument. We’d been playful and chatty walking round the supermarket. Things had turned around. I was still on edge keeping it light, keeping her happy. Then we bumped into Tiny’s class teacher who stopped to chat. The transformation from playful and chatty was marked. Little Miss went quiet and couldn’t make eye contact. Out of the context of school, her confidence had melted away and her anxiety kicked in. To a stranger this would appear as ‘shyness’ but it’s different.
Selective mutism is an extreme social anxiety that results in an inability to speak. It is involuntary and more than simple shyness. I’m proud though as she did manage to squeak something to me as the teacher was walking away. Then straight back to being chatty with me once we were safely alone again.
At the till, the cashier told us the amount and Little Miss repeated it in various voices, over and over and over again. Anxiety making her repeat the words. Again, her echolalia. The opposite if you like from selective mutism. Still anxiety driven and not necessarily ‘appropriate interaction’. I could see the anxiety ramping up so a quick distraction technique was needed. Her forte is maths so I made it her job to tell me how much I still owed each time I produced a coin and that busied her brain but in between each amount she still repeated the total amount in a strange voice. The cashier was so patient, smiling and friendly and put absolutely no pressure on her, instead only complimenting her on the maths. The fact there was no queue and no one else around at that moment helped all of us enormously. I didn’t feel stressed or self-conscious, and Little Miss just did her thing.
Once back in the car she asked for water and I didn’t have any. I, almost flippantly, suggested she run back in to buy some. My genuine intention was to buy time whilst I was finishing putting something away in my bag before going back in myself but to my utter astonishment she said “OK”!
So…We talked about what she would do, where she would go, how to choose what she wanted, where she would pay. We talked about the change she’d wait for, the route back to the car and the fact I would not move from the spot I was in. We land marked where I had parked for her to reference it. It was a HUGE amount of information we covered.
She hesitated. She took the coin. She ran. She went round the corner…… I watched and watched and watched, heart hammering and holding my breath until finally there she was running back with a bottle of water in her hand, a smile on her beautiful face, pride in her eyes and flushed cheeks to show for it.
She had gone round the corner to the door of the shop, walked in, turned right to the fridge, chosen still water (not flavoured, not fizzy, just plain , it’s all she drinks), she stood in the queue with two people in front of her and waited calmly (“feeling very nervous mummy” she told me), and when it was her turn the same lady recognised her and helped her through, I’m still not clear whether she actually spoke, but she waited for her change, and ran back to the door, turned left, round the corner and sprinted back to the car “7 spaces down” she told me. Climbed in out of breath, heart hammering (or was that mine?), asked me to open her water and drank it. “I’m so proud of you darling” I told her, “I’m really proud of myself” she said.
SHE DID IT. I smiled with tears streaming down my face as we drove to collect Tiny.
“It was a very bad day mummy” she told me at bedtime, “but it ended well” we said in unison.