Today is Autism Awareness Day and I realised how very little I know about Autism. So I asked Kelly from ‘It’s a Tink Thing’ to share what it’s really like to have a child with autism.
There’s a feeling that many parents of children with special needs have. We live with it every day. It ebbs and flows, depending on the situation we find ourselves in, but it never leaves completely.
I call it ‘The Fear’.
The Fear is there when I get up in the morning; I don’t know what kind of mood she’ll be in. Will she be cooperative today? Or will we have a battle of wills over every part of the morning routine? Will we manage to get out of the door on time for school?
The Fear is there when we arrive at the school gates. Will today be one of those days when another child comments on how she has a dummy in, asking their own parent why? Will it be a day where I either pretend I haven’t overheard or else brave it out and smile at the other parent as they try to answer their child’s question with tact? Will she stand quietly, waiting for the gates to open, or will it be a flappy, spinny, bouncy, shouty hey-everybody-look-at-me kind of day?
The Fear is there while we wait in the playground for the Nursery doors to open. Will she play nicely with the other children, or will this be a day where she pushes someone or runs into them, (by accident, but she doesn’t know to apologise) or will she scream and shout out, making everyone else turn and look? Will I see the other parents whispering to each other, giving knowing looks?
The Fear is there when I leave her at Nursery. Will she sit and do as she’s supposed to, or will she be in a contrary mood, shouting “no!” and refusing to do anything she’s asked? When it’s time to collect her, will the teacher bring her out and tell me she’s had a good day, doing this and that, or will she tell me that, ‘unfortunately’, this or that happened, or that she’s spent the afternoon crying for me, unable to tell anyone why she feels so sad?
The Fear is there when I take her to the soft play to burn off some energy before collecting her big brother later. Will she steer clear of the other children, or will she interrupt their play, taking their ball on the basketball court, or jumping on them in the ball pool? She’s only trying to play in her own way, but her way is different from their way. Will I catch the looks from the other mums as she illegally climbs up the netting, or runs up the slide? Will I see them, wondering who on earth that child belongs to and why aren’t they doing something about her? Will today be the day she comes happily and quietly when it’s time to leave, or will it be a day for screaming, protesting with shouts of “no! I can’t a-go home!”?
The Fear is there when we pop to the shops before heading back to the car. Will she stay by my side, or will today be one where she runs off, disappearing in amongst racks of clothes, giggling as I chase her, desperately calling for her to come back before I lose her completely? Will she pull all the clothes off the rails as she sweeps her hand along them, as she enjoys the sensation of different fabrics? Will she spot the scooter she’s had her eye on, look at it, and walk away, or will today be a day where she screams her displeasure at having to leave it in the shop, making everyone turn to wonder what on earth the matter is with that child?
The Fear is there when it’s time for tea. Will she eat today? Or have I wasted my time and food cooking a meal that won’t be eaten? Again. Will I send her to bed, once again, knowing that she’s pretty much existed on chocolate and biscuits today? How long will this continue? Weeks? Months? Years? Will she grow as she should? Will my parenting be called into question when someone eventually spots her bony frame?
The Fear is there when it’s time for bed. Will she go happily and quietly tonight? Or will it be a night when she refuses, screaming and demanding to have her tablet until it’s late enough for me to be going to bed? Will she be spending the night in her own bed, or will she be in with me? Fidgeting or still, it won’t matter, I will hardly sleep anyway. Will she wake at a reasonable hour, or will this be another night she decides that 2am is get-up time?
And that’s when The Fear really takes hold. In the dark of night, when I have only my own thoughts and a finally-sleeping child for company. That’s when The Fear grows, like a cancer feeding on my insecurities and paranoia.
And the cycle repeats.
Thanks for sharing Kelly, Tink is beautiful.
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How is this informative about autism? It does analyze what it is like being an autism mom but little does it say about life on the spectrum from the child’s perspective. Not that having to overcome as a parent such challenges is minor or should not be written in words. I would prefer a different title, that’s all.
Hope she gets some sleep (6yrs of sleep deprivation here😞)
I apologise if the post or the title caused any offence. That definitely wasn’t my intention. Hope your sleep deprivation gets better.
Offence? No no no. Nothing offensive about people expressing themselves. It just that sometimes and because our children don’t talk we end up talking about our personal fears rather than their difficulties. I think we need both.
That’s a very fair point. If you ever wish to write about their difficulties then please just let me know as I would like to help raise awareness. Thanks for your comments Sophie. Really appreciate it.
Great post Kelly! I feel your fears from every angle with my two at home!
Although one is home educated at the minute while the LA are finalising details of a suitable school, I still have the fears when I wake up, during meal times, when we go out, when (its rare!) We have visitors over, at appointments etc, and with my other child, she is at nursery, like Tink, and I have the same fears dropping her off, picking her up – and the hours it takes to get her ready each morning for nursery. To top it off being up at 2am every single morning isn’t fun, the exhaustion just exagerrates all the fears!
Its hard ignoring peoples comments, but over the nearly 13 years, I have a “I don’t care what you think” attitude to people who are ignorant. At first every negative comment from strangers would make me cry, but , I suppose you become hard hearted to it all as times go on!
Anyway, lovely post, brilliant mum you are!!
Good for you Doris 😊
Thanks for your comments Sophie. If you’d like to take a look at my blog or facebook page, you will see I write about all sides of autism, but, of course, it’s from a parent’s point of view, because I am a non-autistic parent!I am unable to write from Tink’s point of view as she is unable to express it verbally, so I can only guess from her actions and reactions. I think it’s perfectly valid to talk about my personal fears and I do think it makes others without first-hand experience more aware of another side of autism, which affects the whole family, not just the person diagnosed with the condition.
Thanks to Kirsty for sharing my piece.
My pleasure Kelly x