The Day He Wasn’t Neurotypical – Guest Post from Someone’s Mum

My Mountain BannerWelcome back to My Mountain – where honest parents share their biggest parenting challenges.  Amy’s post last week about our endless quest to get our babies to sleep clearly hit home with a lot of you so thanks so much for all your feedback. 

This week I’m lucky enough to be reblogging a beautiful piece by Someone’s Mum (aka Danielle) that she posted on her own blog back in January.  Danielle’s writing is so heartfelt, moving and honest, and I’m privileged to be able to share her story here. 

When my son was born, I wrote this:


Inside your safe and dryness,

storm-drenched, I’m happy.


Wrapped in your sighs and smiles,

all aches and shivers, I’m well.


Beside your sleeping skin – soft as silk,

pale as paper -Wakeful and despairing, I’m peaceful.


Bound up in your absurdity, afraid and alone,

I am giddy with laughter.


No one could have prepared me for the burning clarity of your pain,

Brighter than mine, so vital.


No sound has ever moved me like your cry, quick to the heart,

Straight to my arms, all thought bypassed.


Every time-worn doubt or fear I’ve ever had is forgotten, dulled, diminished.

New terrors draw close, so profound, only your joy can calm them.


If love is a blinding light, turned suddenly on what was half in shadow,

Then you ignited my universe –

a billion stars unfolding from a tiny speck-

Filling up the darkness.

From the moment he was born, he changed everything. To know what it truly is to love another life more than yours is at the heart of being a parent.

Two years and nine months after he first lit up my universe, my son’s nursery called to say they wanted to ‘discuss some concerns’.

In August, we paid for a private clinical psychologist to assess him, after learning the wait for the NHS was four months.

The psychologist’s diagnosis was autism.

I have found it very hard to talk about this. For a long time, talking about it made it real. Concrete. Unchangeable. But talking, writing, crying – won’t change things. But maybe it will lead to acceptance, somehow.

My son is sweet and loving and as obedient as you could expect a three year-old to be.

But there are things so obviously not right. I didn’t notice them at first – I feel like I am accountable. Why didn’t I see? Why didn’t I notice earlier? He was just my gorgeous boy. So charming and so normal to me – but now I see them every second of every day, the things that separate him. He speaks well – more than well. Sometimes he sounds like an old man. But his language misses so much. He speaks without fully communicating.

On Wednesday the 7th of October, he was fast-tracked to the NHS community paediatrician who deals with neurological and developmental issues with children. This is the first step to actually getting official help. I sobbed three times while we were all that office – the four of us: my family.

In our bubble, my son is ‘normal’. In that room, he had a profound developmental disorder that may affect every aspect of his life forever.

I agree with this report, says the paediatrician. The signs that he is not neurotypical are clear. Even from the moment he walked in this room, she says, she could tell. We can’t say it is high functioning at this stage, she says. He is too young to know how severely it might affect him.

He flaps. He repeats. He holds his ears. He rocks. He can communicate wants and needs and facts. But he doesn’t express himself so well. He struggles to communicate with other children and most adults. He is almost silent at nursery. He can’t do things he should – climb stairs, take off shoes. Noises, smells, sights – all can be distressing to him. Sometimes it is impossible to know what might upset him, impossible to know what will make him feel as if his heart is breaking.

Sometimes, he looks into my eyes.

Sometimes he can’t. Outside the family, he can’t.

He has had lots of tests – to rule associated syndromes out. Terrifying things – fragile x, muscular dystrophy… the day that the results will arrive looms in front of me, a lump in my throat, a weight on my chest.

Best ways, he doesn’t have them. Best ways – what? I don’t know. He grows up. Loves. Lives. Is happy.

Worst ways? I shouldn’t think about it. I desperately don’t want to think about it. The possibilities flicker past my retinas, too awful to ignore, too terrifying to entertain properly.

My son looks normal. Casual observers will just see a three-year-old. I hardly know what people will think. People will think I must be overacting, dwelling when I don’t need to be? He looks normal, acts normal. Three year olds are renowned for losing control over trivial things. It’s what they do. There’s no way to know what he will be. People will think he could grow out of it? It could be the mildest form, whatever that means? I am selfish. I am thinking of the ideal image of what I thought he would be, not what he is.

He will have speech therapy and occupational therapy and all those blood tests. And that is good. It’s the right path to help him.

I will do anything for him. I will fight for the best of everything. I will have unlimited patience, unlimited time to teach him, help him. I have my baby girl to love and help and care for too – and she must not lose out. But otherwise I will stretch myself to help him, as far as I possibly can, stretch myself to the far corners of that universe that he makes brighter.

But I am so lost and terrified. And so guilty that feeling lost and terrified is a betrayal. Because he is, always will be, always has been, who he is.

And that is….perfect. How could he ever, EVER be anything but perfect to me?

But feeling devastated that he might not be what I thought, might not be able to experience the things I hoped, is something I cannot escape. People telling me he is normal enrages me. People telling me he is different, that it is obvious he is different, makes me sob.

It is obvious. Too obvious to be high functioning? Diagnosed too easily, too early to be Asperger’s? I have reached out to other mothers in this position and they all say it took YEARS to get a diagnosis. Appointment after appointment, nagging professionals who don’t agree – their eight, nine, ten, eleven year-olds still can’t get straight answers from doctors.

Every professional person that has seen my son has said they are convinced he has autism within a few minutes of meeting him. I can’t decide if this is a good thing or a bad thing

I can’t decide if it is a relief or cause for more worry.

And I don’t know how to move on. How to feel ok. How to stop worrying about him not having a life, not being a ‘whole’ person, and just help him be the best person he can be.

How do I do it? How? Please help.

You can follow more of Danielle and her family’s story on her blog – Someone’s Mum.  Or find her on Twitter, Facebook or Instagram

*If you would like to contribute to the My Mountain series with a piece about your own biggest parenting challenge please email*


Keep Calm and Carry On Linking Sunday
My Petit Canard

32 comments on “The Day He Wasn’t Neurotypical – Guest Post from Someone’s Mum

  1. A powerful call. I have not been in this situation but can hear the confusions that have been caused. You love your son, your family is strong and that is the most important factor xx

  2. This is a brilliant piece and as a fellow SEND parent I can understand all these feelings. In my experience things got better when I stopped looking at the label and focused on my child. I love Danielle’s writing it is so powerful and honest.

  3. I hope someone comments who has experience with this to offer some real empathy. All I can offer is sympathy and compassion. I wish you and your family the very best. (And if it’s any small consolation, that was beautifully written.) x

    1. Thank you – I have found some other great autism mums since I started bogging, like Catie from An Imperfect Mum above, and reading of others going through the same thing has been very comforting. Thank you for your well wishes and kind words about my writing. x

  4. This post is so heartfelt and raw. I love the poem at the very start, the words are so true. I have never been in a situation like this so I can’t offer any advice, I just hope someone who has been through this too comments and answers all your questions.

    Thank you so much for linking this up to #KCACOLS. Hope to see you again next Sunday x

    1. Thank you – I have found some other great autism mums since I started bogging, like Catie from An Imperfect Mum above, and reading of others going through the same thing has been very comforting. Thank you for your well wishes and kind words about my writing. x

      1. Eeek. Tried to cut and paste and repeated comments. Thanks so much for your comments about my poem. I almost didn’t include it originally as some people are put off by it but in the end I decided it had to stay as it expressed what I wanted it to. Thank you. x

  5. This post is written full of emotion and it is so obvious how much you love your son. In my opinion, it is a very good thing that you got an early diagnosis. The professionals are there to help and offer all sorts of advice and care to all of your family. He is and always will be perfect to you, and yes he may not do the things that perhaps your daughter will do. But he will be the best that he can be, be filled with the love and support of his family, and the most important thing that you can hope for (for both your children) is that they will be happy in whatever they choose. I am not blessed with my own children, but I do work with Autistic children. There is so much help and support out there, but the most important thing is love and understanding, and that is what you have. From reading your post, I sense that you will be fine, yes you will have hard days, but you will have those with both your children, just for different reasons.
    Your post was beautifully written. I wish you much happiness for you and your family.
    Amanda #kcacols

    1. Thanks so much for your kind words. I am starting to feel more positive though, as you say, there are bad days when I feel like I did writing the post still. Writing has been a big comfort to me and those who have reached out to me because of that. It is very much appreciated. x

  6. Beautiful and heartwrenching, and you explain how you feel so well. I don’t really have any helpful advice, and haven’t been in your situation. I can completely understand your fears, I know I would feel the same. As you say, he will be exactly who he has always been and was always going to be. This is a part of who he is, and it always has been. & you will all cope because you already are, nothing has changed about the boy you are raising because people gave a name to his development. I know that probably doesn’t help because that name DOES give you things to worry about, but you are doing everything you can & that’s all you can do. Don’t feel bad about being worried and upset – anyone would be. I hope that once you have more information, and have had some time to process, things will start to feel easier and less overwhelming. By the way, your son sounds like a lovely little boy to me. Not ‘normal’ or ‘different’ – just individually wonderful, like all children are. #KCACOLS

  7. What a beautiful blog post. No wonder you wanted to share it. My son is 4 and he has been having intervention since he was two. He was referred to clinical pychologist by his pediatrician back in September and I was told the waiting list is a year and so we are still waiting. I am told my son is borderline. I too get upset when people used to say “well he seems normal”. They don’t say that now. They can see that he struggles. I think that I would be upset too though if someone told me it was obvious. It’s a no win situation. I used to lie awake at night terrified that my son had autism. Now I’m terrified that he won’t get rhe diagnosis and he will miss out on the help he needs. Hugs to this mummy. It’s a hard journey and only those who are on it know just how hard it really is.

  8. A lovely blog post. I can’t give advice as I have not been in the situation but you love your child and that is all that matters.
    Thank you for linking up to #justanotherlinky

  9. Such an open and raw post, which is clearly written from the heart. Its opened my eyes to autismn just that little bit more, and for that I am grateful. I’ve since gone on to read a few more of Danielles posts and am just in awe of how powerfully, emotionally and sincerely she writes. Its great to have posts like this linked up to #MarvMondays. Thank you. Emily x

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