Not Less

Not less by Someone's Mum

Sweet boy, you’re different.

Not to mummy. Not to daddy. Not to Little Bean. You are our whole world and everything in it. Each eccentricity, each little quirk and trait – they are the rich and joyful substance of our lives. We know no ‘normal’ but the world we inhabit with you. And, to us, it is perfect; we would want no other.

We’re all different.

Not a single being on this earth is exactly the same as another. However close or far apart someone else’s life seems, there are always things that we will struggle to understand about each other. That is a reality of what it means to be human.

But your differences begin to stand out more and more, every day; the cloak of your youth is beginning to lift and your peers are starting to be aware of behaviour that is strange to them.

I see the glances from parents as they notice the stiff, bright lip of your nappy creep above your waistband. Very soon, you will be four. Too old, those glances say. He is too old to be in that nappy. I wonder why his mother hasn’t made sure he is potty trained before now.

I was once told that there was no such thing as a child who was late at developing the skills to potty train – not if they could speak and understand asking for a potty. Past two years of age, they said, it is a reflection of the parent’s laziness, not the child’s inability.

And I felt the burn of shame, despite the knowledge that it was not true boiling fiercely and silently within me.

In the supermarket, a slightly older boy and his brother are wind-milling and skipping around their mother. They wander over to you, and he speaks.

“Hello! I am Sam and that boy over there is my brother!”

You stim, squeeze your hands close up to your eyes and contort your face as if you are in agony. You are so excited that he has spoken to you. You gesture towards yourself, clumsily, your whole hand forming a point.

“This boy… this… boy… this boy is H’s brother!” you struggle to get your words out. I recognise all the quirks of your conversation. You have mimicked what he has said, the information he has provided, but you do not understand the purpose of the conversation.  Your mind follows a slightly different script.

The boy frowns. He doesn’t understand why you have said what you said. He doesn’t understand why you pulled such a strange face. He turns away.

“Bye!” he yells again as he runs off. You stim again, still so excited. You do not understand the rules that were broken, the judgements that were made, even from so a young mind. You are still just delighted that he spoke to you. But one day you will know.

And my heart could almost break, sweet boy.

My heart could break to see your desperate desire to join in be so thwarted by the quirks that make me love you all the more. The conventions of conversation come so easily to others; it is almost impossible for them to imagine a world where those unconscious rules are so alien.

boy in rotunda

The children at nursery are afraid of your stimming.

They think you are angry with them, or aggressive – when the opposite is true. You are delighted by them, by everything they do, by every word they speak to you, by everything you observe and learn from them.

I wish I could show them, I wish I could explain that you are so sensitive, so kind, so desperate to be their friends, that if they could just accept you, accept what is strange, their lives would be so enriched by having you, being with you – but they are only three and four. There is no way to force that understanding. Only time, and patience, and failing – failing many times – will eventually lead you to those who will see what I do.

And this is just the beginning.

Sweet boy, truthfully, what hope do we have of sparing you from these judgements? There is not enough opportunity, enough time in the whole world to educate all of those who would flinch at your exquisite oddities.

There is no way that autism can ever be wholly accepted, no way there can ever be enough awareness – because the majority will always be less aware of the minority.

But I hope by writing, by fighting, by helping you carve out a well of understanding, as you grow, there might be less fear, less judgement. And, precious child –who will know what it is to be different more than most – I can help you learn to accept others in all their glorious uniqueness.

And the world will be a better place for your presence in it.

 


To read more about our autism journey, you may wish to read ‘Autism? More like bad parenting’.

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66 thoughts on “Not Less

  1. What fantastic words, if both children and adults were made more aware of autism they would understand that your little one is this sweet child. So what if he is still in nappies it really doesn’t matter as long as he is happy and healthy .

    1. Thanks so much for commenting and your kind words. Hopefully I can spread a little bit of awareness 🙂

    1. Thanks so much for such a lovely comment. Hopefully I am spreading just a little more awareness. 🙂

  2. Every single post on my site is in some way meant to raise awareness, if adults are more accepting then chances are there kids will be too. There’s nothing wrong with being different, it can be an amazing asset, but kids have to be given the opportunity to understand different is not less, it’s just different. And it’s easiest to do when they are young. I do a lot of facilitating interactions with the kids, interpreting for them when they need it and standing by when not 🙂 My first ever post was about just that.

    http://rainbowsaretoobeautiful.blogspot.com/2015/10/a-ray-of-sunshine.html

    Another beautifully written piece Danielle

    1. Thanks so much. I will take a look. It’s tough for me to know how to react sometimes. My instinct is always to intervene, to try to help understanding but I know that’s not always going to be the best way to help!

  3. This is beautiful. Your son is beautiful. It is heartbreaking to send them out into a world that doesnt understand them, but judges them. Its so important to talk about it so we can raise awareness of what these differences mean. Thanks for writing #kcacols

    1. Thanks so much. If just a few people are just a little more aware then I am so glad I wrote about it! 🙂

  4. This actually broke my heart to read. I hate that people shy away from what they class as normal and cause this divide. I love how you are going to help him learn to accept others uniqueness #bigpinklink

    1. Thank you so much for commenting and for such kind words. It’s difficult as I think we’re programmed to be wary of anything different. Hopefully we can spread some awareness though!

  5. Oh this is so powerful and so beautiful. I read it with a tear in my eye for the lack of understanding we as a people have. Your message is so clear and strong and so beautifully put. Thank you for writing this #KCACOLS

    1. Thank you so much for such kind words. It’s great to hear that it comes across well as hopefully we can then make the world just a little more understanding 🙂

  6. Always such beautiful words, Danielle. It is a shame that even from such a young age, children will fear and shy away from anything unusual, or not within their realms of social acceptability. But I love the way you address this with understanding, and are full of hope that by raising awareness and spending time with your gorgeous boy, these children will understand and accept him with all his glorious differences. I also have a child creeping towards 4 who isn’t potty trained-but there’s no reason for this, he just won’t do it. He will scream and scream until he vomits, if I put pants near him or try and get him to sit on the toilet. I’ve tried ‘forcing’ him, but after an hour of screaming, shaking and vomiting, there’s no way I can find it in myself to keep trying to make him do it. I’ve had looks, and tuts, and statements which skirt around our ‘laziness,’ but being a parent has never made the ‘until you’ve walked a mile in someone’s shoes’ quote, ring more true. X
    #bigpinklink

    1. Thank you so much. Our potty training experience is very similar but there is a reason for you too- he is just not ready yet. On top of the anxiety and upset, if I manage to get pants on for any length of time without hysteria, he just pees and poops without even noticing. As his paediatrician said ‘His brain just isn’t wired to his bladder yet’. Big hugs. xx

  7. A wonderful post and really moved me into thinking more deeply about autism thank you for sharing #bigpinklink

  8. A very emotional read as I feel your need to protect your son, as we all do as parents, but also your fear and understanding that this will not be possible in the way that you would like. Your blog is such an inspiration and the more you educate the better the ‘majority’ (to use your term) will understand. You do a vital job through your words and many will benefit from them. #bigpinklink

    1. Thank you so much – I really hope I do. If I spread just a little awareness, I will be content. 🙂

  9. I have tears streaming down my face reading this. Such beautiful words. The heartbreak as a Mummy that we all feel when our child is not accepted or judged. The cruel reality of life…. It is so crucial that we all try as human beings not to judge and to accept differences. Raising awareness is so important. Thank you for sharing this x #KCACOLS

  10. Once again you moved me to tears, I wish that schools did more to raise awareness of autism because children might be more compassionate and understanding. He is unique but that is ok, one day he will change the world xx

    1. I hope you are right Ana – he has so much to give and so many gifts – if only people can get past the things that are a little different. Thank you so much for your kind words. x

    1. I really, really hope so Hayley. I think with the scope we have to influence and spread awareness, they really do have the best chance of being so much more accepted than children even a decade ago. Thanks so much for stopping by. 🙂

  11. Danielle, I actively seek out your posts in the linkups now because you move me and your words are always so heartfelt, beautiful and powerful.

    Mother’s can recognise the fierce. protective, unconditional love for a child but you have so much more reason to seek to protect and to have others understand the beautiful nature of your precious boy.

    Your thoughts and words on autism, your plea for understanding and acceptance should be read more widely.

    I thank God he is part of YOUR family. That he is in the right place, a beautiful place of love and acceptance with all of you.

    I hope you will think of submitting this to BritMums or MumsNet or Huff Post or perhaps one of the autism charities or somewhere that will share it with a wider audience.

    Choked up.

    #KCACOLS

    1. Thank you so much for such a long and thoughtful comment. Mumsnet did put it on their front page a few days ago so it did get just a little more exposure. Your kind words have really made my day. xx

  12. This is such a beautifully written post. As you know I am facing something slightly similar with my daughter and my heart breaks that the children at nursery don’t really understand her. xx

    1. Thanks so much for your kind words. I see in work that kids have the potential to be very accepting of these things. I hope, with time and patience, our children will be accepted for who they are. xx

  13. Such a beautiful heartfelt post. I think these days are a lot more understanding than those in the childhood I grew up in. Children see and experience a lot more and are therefore more tolerant? I hope.

  14. Beautifully written and moving. I love what you say about the cloak of youth because I do think there is a lot of acceptance in young children – do the nursery workers support you in educating the other children and helping them understand they way your son expresses his excitement? Everyone is different, like you say, and I expect my son (with his open and as yet unjudging mind) to learn about his friends’ backgrounds, traditions, illnesses, likes, languages, challenges, quirks etc – just as they will about him. Of course he will need some support in that if something unnerves him but he has nothing to judge against so any negative emotion (fear or shyness/uncertainty) can quickly be transitioned to something else – I do speak from experience, not just theory…although of course it’s experience just with my son and under my care with people we know.

    It’s heartbreaking that you can’t make everyone in the world understand and you so eloquently portray the feeling of protectiveness in those moments.
    Thank you for sharing this
    #KCACOLS

    1. Thanks so much for commenting. Nursery are very supportive, yes – though they are learning about him as they go, like we all are, so it can still sometimes be tough. xx

  15. These words are an echo of what I carry I carry in my heart towards my own child. I could cry at the hauntingly beautiful and yet heartbreaking words. I pray to God for happiness for our children and us parents who have been gifted with “these” children….

  16. I love reading your posts and always appreciated how hard your work to advocate for your child and bring awareness to others who don’t know about autism. You write such beautiful words!#KCACOLS #TribalLove

    1. Thank you so much for your kind words and such a thoughtful comment. If I spread just a little awareness then I am happy! 🙂

  17. Aww Danielle, every time that I read your posts my eyes fills with tears as I feel how hard is for you to see your son growing up and realising more and more that there some differences and you would like the best for him, to protect him and make a better world for him. You write beautifully! You are a fantastic mum and also person, so strong. Your son is very lucky to have you too. Thanks so much lovely for sharing this at #KCACOLS. It is always a pleasure to have you, 🙂 x

    1. Thank you so much Franca for such a thoughtful and kind comment. I am really struggling with linkys at the moment as have SO much non-blog related work but trying to keep up with #KCACOLS. It’s the holidays soon and I can get back up to full commenting strength. Thanks again! 🙂 xx

  18. So beautiful! Brought me to tears. I relate so much to this. My son will be 4 next month, also not potty-trained yet, and he gets so frustrated with his social problems.

  19. Pingback: Good reads - Inspire & Flourish Linky #2 - Adventures with J
  20. I wish I could introduce my youngest, George to your lovely boy. He isn’t autistic but he has his own little ways and he gets picked on for being different. We love George exactly the way he is and he is such a loving boy I dread him growing out of his little quirks that make him unique. He’s empathic and funny and caring. All traits I wish more children in his peer group had for his sake. Love George’s mum x

  21. Wow – I’ve just cried reading this. What a gorgeous boy and what an amazing caring and proud (quite rightly) mummy you are. Congratulations on a beautifully written and heartfelt post and thanks for sharing your experiences so honestly – hopefully it will help many others out there and educate many more.

  22. A tear escaped reading this, my 4 year old is at the start of his autism journey, if that’s what I can call it?! (not technically diagnosed yet, but suspected asperges has been mentioned).

    At the moment it just feels like a whole lot of waiting, for appointments, observations and truth be told I’m feeling a little lost in it all! Back to the point of my comment, me and his dad had a moment at Connor’s recent graduation from nursery. We witnessed him for the first time amongst his peers, my heart could have broken for him, your supermarket scenario is almost a play by play of what ensued!

    I just wanted you to know I think what you have written is beautiful. Thank you xx

  23. This is such a beautifully written piece about such a heartbreaking subject. It made me cry when you said about how thrilled your little boy was that the other boy had spoken to him. How I wish people (adults) were more understanding – I know that it’s hard for children to be.

  24. Such an incredibly beautiful place, and one when Number One was that age I could have written. Things get better, as they get older as well as getting worse. Close friends become old enough to understand and so have been so impressed by their tolerance x

  25. Such a lovely post. I just adored how you described his feelings. He has a wonderful advocate in his mum x

  26. This was absolutely beautiful! It helped me to reflect on how I am responding to, and advocating for my 10 year old who is on the spectrum. He has just started to become more aware of some of the differences between him and his peers. He is constantly asking me if something he does is “weird” or not. Not only is he afraid of the judgments of others, he judges himself – harshly. It is so painful and heartbreaking. I am fighting hard to teach him that I love him for who he is and that we are all different from each other. What I really hope is that some day he understands that what others think (or misunderstand) doesn’t define him. He is a special boy, talented, unique, loved by his parents and family, and loved by God. I may have to keep repeating it over and over and over again. Hopefully some day it will sink in and he will believe it…and believe in himself.

    Thank you again for your beautiful post. You are gifted with words and you are doing a great work. Hugs, Trish

  27. Danielle,

    I read your post with tears in my eyes, blurring your post, of your sons situation and joy in my heart for him as both his parents show such devotion, deep love for him and total acceptance of him.

    As an autistic man of 50 years of age, I wish autism had been more of a widespread understanding of the condition (yes its a condition not a disability, believe me I’ve lived a lifetime with it). It will be hard for your son, no doubt in my mind, sometimes extremely challenging, but he will be made a better man than most ‘normal’ boys will become for it in the long run.

    I wish my parents had been as supportive as you are of your son. Little was known of autism in the 1970’s and 80’s, I was just a weirdo, a freak and as time passed I was called a ‘spaz’, for learning difficulties, because I could not learn in a ‘normal’ classroom environment.

    I had what were called ‘aggressive tantrums’ by school staff, which were, as it turned out over 30 years later, ‘meltdowns’ I would be caned and given the slipper by the head or hit across the hands by the teacher with a rule (straight edge). When I got home from school with a letter, that I would always gleefully hand to my mum thinking I had a letter of praise or similar saying I had tried hard in school, my mum would read it and I would be beaten and put to bed not knowing why.

    Only know as an adult can I understand the situation. Please do not judge my mother too harshly, those behaviours of parents and teachers were typical in that era least that was my perception, and without any understanding of what autism was there was ‘no reason’ for my poor behaviour in school other than ‘being naughty’.

    Even today life is hard, I am persecuted by local kids 7-16yrs because I am different, I live alone because I cant connect with people to make a meaningful relationship, as people do not want to be involved romantically with ‘an abnormal’ person (that’s a direct quote from a prospective female) I’m an only child and my parents are deceased, I have no friends only acquaintances in work or at the shops or people in homes near me.

    I move home a lot to ‘make a new start’ because my stay in one place becomes untenable due to my differences; This is also why I have no friends.

    All this and I am still a happy person overall (although not whilst subjected to persistent harassment such as name or calling rocks thrown at me, my car or my home). This causes my mental health to suffer and suicide to become an only option in my mind. Thankfully and obviously I have not succeeded in doing so.

    I don’t say these things to scare you but to tell you that your son is very lucky to have your love and support, that so long as you support him and share his fears and joys with him and others see and feel it too, he will know that he is loved that ‘he is not broken’ and hopefully society one day within his lifetime, will be accepting and understanding and with love, compassion and hope be so accepting of his differences that they cease to be differences but accepted into the fold of ‘normal’.

    You are wonderful parents of a wonderful child who is remarkably fortunate. Life will not be easy for him, and he will struggle, but with your love, support, patience and guidance he will master it.

    God bless you all, He has already blessed your son, believe me. being able to see the wonder of the world around him in a unique way to everyone around him is a blessing, to find joy in how an ant carries a leaf or a Beatle drags ‘poop’. Asking a question that seems ‘out there’. The wanting an answer to it, this will drive his brain to be filled with what is unfairly called ‘useless information’ until it is needed. Then its ‘how did you know that?’

    Only last week I spent forever researching fish in search of an answer to, ‘do fish fart?’ The answer? Well it is inconclusive, but some herring purposefully make FRT’s (Fast Repetitive Tic’s) to communicate in a form of ‘game play’. Just so you know 🙂 also if you say FRT’s like a word it does sound like farts … lol

    Keep loving your son, supporting him and advocating until he’s able to advocate for himself, hopefully that will never be needed and autism is accepted and slips into the category of ‘normality’.

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