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.

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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…

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

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 have shared this post on my blog where I write about our family’s ASD journey and the challenges of inclusion in a very different society. I think my readers will really benefit from hearing your words. Thank you very much for sharing. Sending you strength and love. One ASD mum to another.

    Like

  2. Your daughter is lucky to have you. Having an autistic son, I know how you feel. Raising a child like this is tough, to say the least. My son was beyond difficult when he was younger. I know what you mean by 3 months straight of bad days. Sometimes it seemed endless.There were many days when I didn’t know how we would make it another day. But each day came and over the years, as he grew and matured and I learned, the days became easier and easier. Hang in there. All the battles are worth it. These children are amazing and have so much to teach and to share with us. They are gifts. Beautiful post and thank you so much for sharing it.

    Like

  3. WoW!! I am too shaken right now to say anything. I AM Truly Very Sorry! This hit me hard. Cant explain why, but it hurt just seeing what all u r going through. I can feel some little part of your pain and all i can do, for now, is say Sorry. I feel very silly. Inconsequential in your scheme of things. Thank you for the heart rending account. I wish you strength. I pray for good things to happen with you. …. Raju

    Like

  4. Brenda Powell says:

    Just saw this post from a Facebook lead. Thank you for sharing your heart and your wonderfully made daughter. Wishing you happiness and stamina,

    Like

  5. Kim s says:

    I loved this. I have often woken up to find my daughter has slept on the floor again. She is mostly non-verbal. I struggle every day to second guess her needs and moods. Today was an exceptionally good day for her. Thanks for sharing this, I could really identify.

    Like

  6. This post is really incredible. It’s informative, tugs at one’s heartstrings and really puts things into perspective making me appreciate what I have far more. For what it’s worth, you and your daughter will be in my thoughts and prayers. Your strength really is inspiring!!!

    Like

  7. This has left me speechless. I may not fully understand your situation because I am only a teenager, a few months away from being 18, but I do work with some of the younger autistic students at my school. I’m only in the classroom for approximately 2 hours a day but I am there enough to know that a lot of these kids are in need of parents who are as outstanding as you are. This comment may not seem like much coming from someone so young, but it is people like you who inspire me to continue to pursue a career in which I can work with more autistic children. They are some of the loveliest people I have ever met. Thank you so much for sharing and for inspiring me.

    Like

    1. Nick says:

      I work in the care community I work currently with aquired brain injuries … But it’s a recent change from autism it’s a amazing privelage to work and support these people ….. But it desperately needs people like your self to join and help ……. But let me give you a heads up its hard work sometimes for nearly always terrible money and the two eloquent posts that are making me comment might make mine seem innapropriate ….. But there is some big companies out there making money from supporting children and adults with autism and they make it very difficult for genuine people like yourself we need young people to work in this environment to help change people’s opinions of autism I want to encourage you but open your eyes there are days as a 40 year old man who has worked in the frontline of the fire service when I have come home and cried at the world for its ways 😦 …….. Let the beautiful minds of autism lift you encourage you and guide you because when it’s not a bad day …….. Or the day they allow you to touch them …….or the day they give you a pressure free hug a very unusual way to describe a autism hug which when you get one will understand ……. Best of luck to both xxx

      Like

      1. I hope for the day when caregivers, family and professional are held in higher regard and treated as some of the most precious people in our society…

        The only ones who make it to the media are the bad ones, the abusers, taking everything away from not only their victims but their genuine honest compassionate selfless colleagues and peers.

        I did some voluntary work caring for severely mentally disabled kids when I was a teenager and whilst I didn’t pursue it as a career, it has deeply affected me as a person. I believe we should return to some kind of national service for youths and this type of work would definitely be on the list for me xxxxxx

        Like

        1. Nick says:

          Problem is this job is a calling …..rather than put anyone in it ……think of the abuse people would suffer if the people who look after them don’t want to be there 😦 I believe that’s part of the reason we get abuse in this industry now ……..however we do need to get as many autistic people into the mainstream towns,schools and let people get used to seeing autism and other equaly disabling mental and physical inabilities to let people see theres nothing to be scared off ……. My daughter comes on on day trips with myself and people I work with so she will grow up understanding it’s a natural thing and be relaxed Round all people …….. As a single dad it’s difficult to know when your doing the right thing sometimes …. But this I know is definitely the right thing and allready she is showing to be a caring loving girl ( only 3 lol) …… My heart goes out to you the words in your blog……… Touch a cord showing you understand the hardship and patience and frustration ………. It’s not my daughter but I can imagine it intensifying the situation huge amounts …….. If you could give virtual hugs you got it ……… Or there’s one here from me and little cute 3 year old xxxxxxxxxx

          Like

          1. yeah, you make a fair point about forcing people into it… I had not thought it through that way… but i will stay hopeful 🙂

            I think your daughter has an amazing dad, massive hugs back to you both! xx

            Like

  8. I also have a 7 years old Doughter and she is beautiful and smart and all kind of other things and she also has autism.
    I read your words and find my self in do many of them. Thank you for sharing and writing.
    I also write a blog but it is in Hebrew maybe I’ll ask someone to translate some of the posts and share.
    Thank you for writing my feelings I hope u know you are great and that you will walkways belive in yourself.

    Like

  9. moderndadpages says:

    what a wonderfully honest post! I have dealt with high functioning autistic children on my soccer teams and I felt myself almost brought to tears reading this as I have a small understanding of what you wrote. I really thank you for linking on #wineandboobs such a beautiful post!

    Like

  10. Reblogged this on She Writes to Say and commented:
    #istandquietly #autismawareness
    This brave and graceful mother has great talent that stems from the heart. I encourage you to read this, and challenge you to pass the word. Thank God for brave, loving, and beautifully-hearted moms.

    Like

  11. My heart aches for your daughter and you, her mother. I can’t imagine a day in her life or yours. I’m going to share this because it’s the only thing I know to do that makes me feel like I’m “helping”. I have a cousin with Aspbergers (sp) autism so I can definitely understand a tiny bit. I’m praying for you & yours and for more research to be done and a cure someday soon!! Much love and gentle hugs.💙❤️💛💜💚

    Like

  12. le says:

    Thank you for this, you are inspiring and have brilliantly explained the day to day struggles that a child with autism and their family faces. I want to give you a massive hug because I know how they can help. I have an autistic brother and i am proud to be his older sister and I and truly proud of my parents who have raised us all brilliantly. I can understand the hurt of when your parenting techniques are insulted by strangers who have no idea.I remember being asked how i could be so well behaved while my brother was so naughty. My advise is to treasure the good days and hold them tight on the bad days. Fill your walls with smiley photos! I remember being 5 and my dad picking me up from school and telling me i had another baby brother. The photos show how tightly i held him and the proud luck on my face is clear. Even though the hugs are few and far between now they are still as tight and every time im proud. I’ve stood quietly and witnessed so many of the event you’ve listed and watched my parents struggle to cope. ive watched my parents argue, cry and bounce back from everything thrown at them. Now im going to university and I already know how much i will miss him, it will take a while to get used to the quietness.
    Hugs and kisses

    Like

    1. Thank you!!! That means a lot, and as a sibling, I think you’re an inspiration. You’re so right – fill the walls with smily photos – that’s such a good motto for life for anyone!! Hugs and kisses back, your brother and parents are very lucky people xxxxx

      Like

  13. Sara says:

    This post could have been written about me, your daughter sounds so much like me. Even down to leaving the house, I’ve been struggling with that for three and a half years now. At present I can leave the house if all the very restrictive and rigid criteria are met; this has been the case since mid-March, but before that I hadn’t left my house for 18 months (aside from an unwilling hospital stay). If your daughter ever wants to talk to someone who is experiencing the same things as her please give me a shout. I may not (and probably shouldn’t, since I’m not qualified) have solutions but I can offer sincere understanding. I know exactly what she means about being “the wrong kind of special”.

    Like

    1. Sara – thank you for commenting and sharing, that must be so hard to do… I very much appreciate your offer and will keep it in mind as daughter grows older and want to connect with others… xxxxx

      Like

  14. michelle says:

    How eloquent. I facilitate a group for parents with kids on the spectrum. I would love to share this with them, with your permission. Sounds like you have a wonderful relationship with your daughter.

    Like

  15. Natasha says:

    Hello and thank you for this moving story.
    I know many children and adults who struggle through life with sensory processing challenges. There are helpful strategies that can make life much easier. I have found the Wilbarger Therapressure protocol when done correctly to be miraculous and a sensory-motor routine of specific movement and deep pressure exercises can change brain chemistry and body awareness and bring much needed relief.
    There are many Occupational therapists who specialise in this.
    I hope you can all find one that can support you.
    Blessings of strength, peace and joy.

    Natasha

    Like

    1. Hi Natasha, yes I agree, the Wilbarger protocol is amazing… it helped our daughter a lot. Sadly a different therapy that she reacted badly to undid a lot of that progress but I’m looking to repeat the Wilbarger for a few months and see if we can regain what we lost. It is a big commitment but for us, worthwhile. xx

      Like

  16. Thanks for posting this. I was diagnosed at 21, after 15 years of questioning. Some of this hits pretty close to the bone, obviously, and I know my mum’s been on the receiving end of a fair amount of what you mention – particularly the bits about being a bad parent, and “no, of course it’s not autism, girls don’t get that”. Every time I see something like this, even though my situation and your daughter’s are pretty different, it comforts me to know I’m not the only one. As to the last line – it breaks my heart to hear someone else feels like that.

    Thank you again, and good luck to both of you – I hope the world gets a bit better around her, and things get a bit easier to manage and explain.

    Liked by 1 person

  17. Reblogged this on Memordee and commented:
    This just makes your heart bleed. Some of these things are just what our poor boy goes through too. The Psychologist tried to tell me that it’s not very autistic to feel or notice other people’s emotions that much…. so wrong!

    Liked by 1 person

  18. Aydan O'Connor says:

    Reblogged this on An Anarchic Mind and commented:
    This is written from the other side of my aisle so to speak. I guess one could say that I am lucky, as I am not at the same point in the spectrum as the author’s daughter, but there is no luck when it comes to having ASD. As someone that has to live in a world that isn’t always equipped to handle someone like me I want to thank the kind people out there that are like this mother. That are our lighthouse when we feel like we are lost at sea. People like her and like my wife are the only reason that people like me can even function in society today. Thank you.

    Like

    1. …and friends. Those wonderful rare people that have the patience or some other quality that means they can also be the lighthouse. Today is a good good day, I am sat on a bench at a farm/play park watching my little one laugh and run and play and look almost like any other kid here, thanks to her wonderful best friend who gives her so much love and courage ☺️

      Liked by 1 person

  19. Aydan O'Connor says:

    I found this post from a Facebook page that I follow about Autism. Until about three or four months ago, I thought that I was alone in my crazy quirks and inability to handle what “normal” people considered to be just day to day life. I ended up having an ASD screening done by my therapist and when that came out as positive we began to move on to a formal diagnosis. Until that point in my life, I never really knew the degree to which ASD could vary. My parents had always labeled me a trouble-maker and said that I was always just being difficult. As I read your post, I cried, because of the similarities of what I experience and the support that you so selflessly give to your daughter. It’s not easy being a person with special needs or being a caretaker of that person. I want to thank you for providing your daughter with such overwhelming support.

    Like

    1. You’re right. It’s not easy but I will always fight to give her what she needs… And having “met” so many humble, thoughtful, inspiring people via this poem, I will always fight until society changes towards recognising and accommodating autistic people’s needs… Ironically I don’t think much of it is that hard, it just needs to become an imperative. Xx

      Liked by 1 person

  20. Jenna Fleming says:

    My 2.5 year old has an ASD and SPD. I am constantly trying to get people around us to understand you cannot talk to him when he is having a meltdown, he isn’t trying to be a ‘brat’, spanking/yelling isn’t going to help or make him stop.

    I send people this link constantly with, “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.” and, “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.” To try to help them understand him a little better.

    Thank you for writing this, thank you for helping me verbalize how my guy is feeling and thank you for letting me know I am not alone.

    Like

    1. We’re neither of us alone, although it does often feel like it! I had a review / catch up with our local family support worker from the NAS the other day and honestly made me feel a lot better… Someone who gets it, and who can offer ideas where I’d got into a bit of a rut managing certain behaviour… The one thing she said that is so true is that you just don’t understand it unless you live it. Frustrating but true xxxxxx see what the NAS (national autistic society) do in your area? Xxxxxxx

      Like

  21. John Goodfellow says:

    Wow! Very rare is it when one comes across a piece of writing that stands out like a mountain. This is one of those occasions. Such a powerful piece, full of empathy and understanding. Such patience and love and not a little sorrow. I have learned so much from this open letter. God bless you and your little girl and may time mend things a bit

    Like

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