Autism Awareness

Dear Parents of Neurotypical Children

Dear Parents of Neurotypical Children

I wake up in the morning and I listen to the sounds in my house. I wait, I listen.   I’m waiting to hear with how much jarring force the doorknob is twisted.  How heavy the thump of the footsteps are as my daughter wakes up.   These sounds are the barometer by which I gauge how challenging my day might be.

My daughter has sensory problems.  I have known this since she was two.  But it was only last year following tests by a specialist that it was confirmed. And with the diagnosis, came insight into a magnitude of her struggles, quirks and strange behaviour.  They explained to us that her brain is not getting the signals from her body to tell her where certain parts of her body are.  When she has been asleep all night, her brain can’t work out exactly where her feet or hands are, so she stomps her feet harder, she yanks that doorknob with a smidgen more force than is necessary.

On a day that those sounds are louder, I steel myself.  The same shirt that she’d worn the day before might make her itch, the same size tights are suddenly too small, the same cereal that she ate the day before tastes of the tin it was in.  Her sensory system is out of control and she rages at those around her in an effort to gain control of the assault on her brain as it struggles to control the sensations hitting her body with brutal force.

On these days, it’s a little harder to get her to school.  She is anxious.  She knows that she will have to work harder to concentrate in class as she tries to shut out every small noise and sensation that floods her brain.

You see, our brains are designed to filter out noise, so we can concentrate on what is relevant.  Her brain does not do this.  She has to work really hard to filter through the cacophony so that she can concentrate on what is important.  So, if she is really focused on a task, she may lash out at your child because it’s taken her an enormous effort for her to shut out the unwanted sensations.

Along with her sensory issues, she is a perfectionist. No, not just a phrase that is loosely thrown around as many of us do.  An observation by a specialist psychologist.  So she sets extremely high expectations for herself and gets very anxious and upset if she fails.  We certainly can’t do anything right.  She spends quite a lot of time shouting at us for getting things wrong. Perfect is hard to achieve. Most things I do for her is met with scorn.  It’s not that she is ungrateful. It’s just not perfect.

She is very rigid.  She needs to have things done her way.  Or she gets very upset.  If she can’t have things done her way, sometimes she screams.  For a very long time.   Sometimes she gets a little violent and throws furniture.  Sometimes she threatens to hurt herself.  Sometimes she threatens to hurt the people around her.     Sometimes she asks me how she can kill herself that hurts the least.

Sometimes I shout back.  And always, when she’s calmed down, and she tells me she loves me, I cry.  I feel like a terrible human being for getting angry.  She didn’t ask to have these difficulties, she can’t help that we’ve gifted her these neurological differences via our genetic pool.  I am angry at myself for being weak.  And then I’m angry at myself for being angry at myself.  I remind myself that I have a tougher job than most parents.  With little support, it’s inevitable that I falter sometimes. I  rebuild my defenses, make myself stronger.  She needs me.

If you see me passing you in the street, looking moody or unfriendly, I’ve probably had a horrific morning. I’m trying to get her to school, my only respite. The time I can rebuild my tough exterior.  Sometimes I come home and just sit in a quiet room.  Recovering. Taking in the silence.   Preparing myself for when I have to pick her up.

If you see me standing alone in the school playground, hanging back, not talking to anyone, it’s because I’m trying to see her face.  Looking for that set jaw, an angry glint in her eye that tells me she has struggled to cope with the day.  Looking for warning signs of how difficult the afternoon might be.

We used to go to the park after school.   But now she refuses.  Unless I buy her an ice-cream.  She might be anxious after an incident with other children in the park.  I could see that they were being mean to her, but knowing how aggressive she can be, I just took her home.  Maybe I should have done more.  But I dislike confrontation.  We have enough of that at home.

Because of her sensory issues, she doesn’t like shops.  Too noisy. Too bright. Too warm.  Even a trip to the supermarket can turn into a maddening experience.  We avoid most crowded places.  Most places that we have to get to by train.  She doesn’t like trains.  She pinches and digs her nails into me.   Sometimes she doesn’t want to leave the house. One school holiday, we were trapped indoors for 10 days. On the last day, we ate beans and bread as there was nothing else left.   Sometimes we coerce her, but it’s exasperating and unpleasant. We weigh it up.  Is it worth it?  Habitually we stay at home.

We are lucky.  She is very determined.    It’s this determination that makes her face her anxiety and battles every day.  She is desperate to fit in.  She wants to be liked.  She wants to have friends.  She doesn’t want to fight, she doesn’t want to be rude.  She doesn’t understand that she is being hurtful.  Sometimes it’s too overwhelming. She can’t cope.  She lashes out.  She might not even realise she’s done it. Because in her worst phase of anxiety, her brain is flooded with cortisol, adrenalin, and rage. She is not in control.  She is learning, but it takes time.

She’ll probably upset your child.  We don’t condone it.  Please understand that we teach her every day.  It just takes a little bit of work for it to sink in.  Shouting at her won’t help,  it will tip her overloaded senses into an abyss where she loses control.  A torrent of screaming anxiety. A spiraling vortex of emotions, leaving her exhausted and sad.  “T feel like there is something missing in me, mummy”

When she offends you, or your child, consider all of this. Hug your child and tell them you love them.  Explain to them that some people have invisible struggles.  Some people are different.  Teach them not judge. Teach them to be kind.

Tomorrow morning I wake up and listen for those sounds that tell me how tough our day is going to be.

 

 

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Comments

  1. This is so well written. I don’t have any experience of what you’re dealing with but wanted you to know I’m listening x

  2. ❤️ this post made me cry …. you probably think that’s very self indulgent because of what you go through every day…. I cried because of your bravery … yours and your daughters for getting up every morning and dealing with a world that doesn’t really understand… and for being the very best you can be throughout it all…. and for laughing and smiling despite it all…. and for understanding and for guiding your gorgeous girl through all her difficulties.
    You are a legend and an inspiration ( actually both of you are) I hope people read this and think and learn.

    1. Author

      It’s not self-indulgent at all, it shows compassion and that you care. Thank you for reading and your kind words, I appreciate it xxx

  3. Such an interesting – and heartbreaking – insight into what you all go through. Thank you for sharing, I know I’ll be taking more time to consider the invisible challenges that other people may be experiencing.

    1. Author

      Thanks, Laura, our normal is just very different from everyone else’s. Sometimes simple and straightforward things are not as simple as they should be, but it’s just the way it is xx

  4. I just wanted to take the time to thank you for all the support and help you have given me. All the phone calls, taking the time to listen, when you have your own issues at home.
    I read this and I remember lying in a corn field with your daughter and my son, screaming as loud as we can. Beating to our own drums. Love you lots

  5. So many struggles that are hard for everyone to understand. Thanks for educating with this post & explaining a typical day that you experience.

    1. Author

      Unless it’s something you experience, it’s very hard to fathom. I was the the same, my idea and understanding of ASD was so different before I learned more. Thank you for taking the time to read it xxxx

  6. What a beautiful, challenging and honest article Vanessa! I salute you <3 My asperger daughters struggles seems mild by comparison. So you taught me something today. Thank you for that! And all my best wishes for your daughter, you and your family!

    1. Author

      Thank you Hild. I don’t think our struggles are any worse than anyone else’s. Just different. My daughter probably has Aspergers too, they have just stopped calling it that, but the sensory issues just add a layer of extra complications and makes it a little tougher for her to manage her emotions in situations where she is having a sensory overload.

  7. You are doing great!
    From a Mama with 3 girls with various extras going on (Aspergers, Anxiety and Adhd!) xxxx

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