I Stand Quietly

I stand quietly while you do somersaults on the bed as you aren’t being naughty, you are just trying to get your out of sync body under control.

I stand quietly by the toilet door every time you need to go, and come with you around the house, and sometimes even just across the room, because I know you can feel truly frightened when you are not near me.

I stand quietly at the supermarket checkout while everyone stares at you barking like a dog and blowing raspberries on my arms to cope with the buzzing lights.

I stand quietly while you tell the baffled shop owner that you are looking for shoes that feel hard like splintered wood because your skin can’t bear soft things.

I stand quietly when the attendant gives us scornful looks when I ask for the key to the disabled toilet because the hand dryer noise is too overwhelming for you.

I stand quietly while the nice old lady who lives over the street tells me you wouldn’t be like this if you had siblings.

I stand quietly watching the part-cooked dinner flush down the toilet as the smell was becoming too strong for you to bear.

I stand quietly as you diligently brush your teeth even though it feels like the toothpaste is burning you.

I sit quietly while you scream at me, trying to control the panic you feel because I gently touched your head when brushing your hair.

I sit quietly while the teacher tells me she knows about autism and that you are not autistic and asks if I would benefit from some parenting classes.

I sit quietly while the GP, the occupational therapist and the paediatrician agree how bad it is but say that there are no resources to support us further.

I sit quietly while you cry because your friends say you can’t play with them any more because you tried to change the rules once too often, even though it was only so you could cope.

I sit quietly watching you desperately try on countless items of clothing, searching your cupboards, feeling the textures, knowing that we will have to cancel your beloved horse riding lesson again because they all feel too bad to wear.

I sit quietly as you explain to me that you can go to no more birthday parties and no more clubs as people are just too scary when they are excited.

I sit quietly when my family tell me that you will grow out of it, you just need more routine and earlier bed times.

I sit quietly and rack my brains for something for you to eat as everything you try today makes you gag and wretch until your eyes stream with tears.

I sit quietly when an old friend suggests I would be better off putting you on the naughty step and taking away a beloved toy.

I sit quietly all night whilst you sleep on the cold wooden floor with your head on my leg as you are really poorly but the warm softness of the bed that should be a comfort is making you feel worse.

I sit quietly while you try to regain some kind of control over your body in a meltdown, scared and sobbing and writhing about, hitting yourself harder and harder and begging me to hit you as hard as I can too.

I lay quietly with my back to you as my smell makes you feel sick and although we both desperately want and need to cuddle, you can’t bear to.

I lay quietly beside you when you tell me that you are the wrong sort of special and the wrong sort of different and you want to die.

— — — — — — — — — — — — — — — — — — — — — — — — — — — — — — — — — — — —

Thank you to everyone who has shared their love, support and personal experiences in response to the poem.  I am forever changed by the magical rollercoaster ride on which this poem has taken me…

If you came to see more of what was here before, it has all been retired.
Midlife encroaches.  The blog wasn’t evolving in the way that I was.
I’m trying to do more of what I want rather than just that which I feel I should.

If you are here because your child is autistic, good luck on your parenting journey, do your best, enjoy it.  You are no different to any other parent whatever anyone says.  You are not in Holland or Italy for that matter (unless you literally are), you are travelling your own unique path with your own unique family, go you.  Your kid is autistic, that’s their story, sometimes it’s hard to distinguish that but you must.  It can take time, it did for me, but ultimately that understanding will set you free to be the best parent you can be.  Maybe this makes no sense, I think eventually it will.

Be the wind beneath their wings, don’t ride their coat tails.  With love x

— — — — — — — — — — — — — — — — — — — — — — — — — — — — — — — — — — — —

88x31Please note: I Stand Quietly by Jill Finch, Dirty Naked and Happy is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

And please consider a donation to the National Autistic Society – thank you:

https://www.justgiving.com/fundraising/autism-awareness-jill-finch

For commercial use, please contact me.

From March 2015:

It is one month until World Autism Awareness Week, so last night, rather than sit quietly googling for answers as I normally do, I wrote this open letter to share on social media.  I wonder how many times people could ‘Like’ and ‘Share’ and ‘Tweet’ this over the next month?  #istandquietly

I have had to learn to do these things quietly because my daughter needs me to.  She is seven; bright, super funny, articulate, thoughtful and loving.  She also has autism spectrum disorder.  If you saw her on a good day, you’d maybe think she was a little shy and kooky.  You’d maybe wonder why I am letting her wear flip-flops in the winter rain.  You’ll never see her on a bad day as she can’t leave the house.

She has severe sensory processing difficulties.  A normal day exhausts her and when she feels overwhelmed, even a gentle voice trying to soothe her with loving words can be too much to process, making her feel crazy.  She describes walking into a room of people as “like staring at the sun”. She’s incredibly empathetic but you may not realise as she feels her own and others’ emotions so deeply she can’t bear it, and so sometimes she has to just shut down.  Forget about a hug.  She is also desperately trying to come to terms with having a hidden disability that few people can understand.

This is just one story among thousands of different stories of autism, not everyone is like Rainman or like my daughter.  I know it’s no great piece of prose but it’s from the heart.

Thanks for reading.

Other useful links:

I Stand Quietly

672 thoughts on “I Stand Quietly

  1. I loved reading this post. My step nephew has asbergers (think I spelled wrong) with adhd. His is not as severe as your daughters, his is more he’s interested in everything and once he find that one thing he will take it apart and rebuild. His curiosity is never ending. He is 12 and is on about 15 different meds. He has in the past berm put on institutes due to throwing chairs, punching and threatening peoples lives. I hope one day soon they will figure out a way to treat or reverse autism. I feel bad and take my hat off to every parent that has a child with autism.

    Liked by 1 person

  2. My brother has autism too and my friends all told me that he would grow out of it as well 😐 they first asked “why is he being weird” it’s annoying because we are all human just we all develop in different ways, yet some think that they are higher up and more advanced than others 😒.

    Liked by 2 people

  3. I am so sorry. Hope all is better now. It is well. I really do pray that her good days will far outweigh the bad…and with time you both will forget they ever were.

    You are an amazing parent. Dont let no one tell you different. She is well. All is well.

    #Positive affirmations all the way.

    Liked by 1 person

  4. This is a very touching writing. It had me cring for all those who suffer from this but fight with all there will. My prayers are sent to your daughter and to you. Thank you so much for sharing your life with us.

    Liked by 1 person

  5. Thank you so much for this post! I never understood what autism is and why people make such a big deal. This really helped opening my eyes, and I sure have a better understanding of autism. I would love to help people who suffer from it. You are brilliant. ❤

    Liked by 1 person

  6. This piece is beautiful just as you and your daughter are. We don’t choose our journey and often wonder why it is our path. Keep sharing and telling your story. Be brave, be scared, be secure and vulnerable how ever you feel be it. You are a light for many and my thoughts and heart are with you and your daughter.

    Like

  7. Thank you for sharing. From one mother to another, I wish there were some way to offer you comfort. Please know your post has been fully received . I will hug my son a little tighter tonight as I pray for you and your family. Please continue to share.

    Like

  8. peter dunn says:

    thank you jill for such a powerfull poem. it strikes a nerve with us. as you stateno two autistic people are the same. makes us realise we are not alone. had a sad time today our 4 year old daughter went to a playpark in the cz republic where we live some older children were calling her stupid and dumb in cz. trouble is our daughter is non comunicative autism. but 4 years old responds to people talking in cz english and german, can cloth her self and has taught herself to swim. oh and always is cheerful and wakes up happy. whos the dumb person her or theignorant people who just stare and laugh at us.

    Like

  9. jbh says:

    Reblogged this on abbey lane… and commented:
    it is a rare thing for me to re-blog someone else’s post but this one really knocked me– 

    the whole thing about liking, reading and commenting is normally a foreign thing to me as i have been writing a personal blog for a decade, formally a web page, and rarely had a like or comment for years–  my blog has always been more of a diary…

    however, when i can, i DO read other writers posts, look at their pictures and enjoy seeing the many different perspectives of all the bloggers–

    this post that i am re-blogging truly rocked me and although autism is not something that i am aware of, the poem and post seems to be enough to knock even me out of my normal complacency–  the least i can do is re-blog–

    peace–

    Like

  10. if I’ve ever met an autism person I don’t know it…all I have is “rainman”, sorry…if I do meet someone I hope I don’t appear to be fake or goofy…and I hope i’m helpful and not a problem…awesome post

    Like

  11. What to say. This is so powerfully presented. Blessings for your patience. Prayers for more understanding from others. Hope for the discovery of something helpful. Appreciation for helping more people to understand.

    Like

  12. derbzilla says:

    I know what you’re going through. Not as severe though; my daughter is diagnosed ASD (etc, etc… But isn’t it always?), and has some processing issues. While my son hasn’t been officially diagnosed as ASD, he’s a SPD and very tactile/seeker. I’ve had to stand aside and deal with the stares and RUDE comments about his behavior – spinning, hiding, running, screaming…

    Are you in an area with much support for kiddos with sensory processing disorder/ autism spectrum disorders? What’s the issue getting an evaluation & diagnosis? (Or am I just missing it because I’m a n00b lol)

    Keep fighting the good fight, sister. It’s so rough when people don’t get it!! I also started here mainly to share all the things I’ve learned about my kids needs and disabilities with others who might benefit from it. Not much there now, but there will be. It’s up to US to teach the world about our children, right? OK, I could do on for days but I’ll stop! Thanks for writing that, it really was beautiful 8)

    Like

Start a Conversation...

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s