To the new autism mum who just wants someone to say it will be okay

To the new autism mum who just wants someone to say it will be okay

I think you know by now – no one can tell you what the future holds. No one can tell you that this path will be easy, that it will not be fraught with heartache and frustration. No one can tell you that this will all go away, that the child you love so fiercely will be just like other boys and girls.

I cannot tell you that.

But I can promise this –

One day, you will wake up, and that cold dead weight in the pit of your stomach will feel a little lighter. You will barely notice, hardly perceive the change that happens oh so slowly. But, one day, the texture of your reality will feel comfortable again. You will no longer feel like you are in a bad dream that you need to escape from, if you could only wake up. One day, there will be a new normal and you will know that you will be okay even when some things are not.

I know, right now, that future does not seem possible. You might be desperate for immediate relief – for someone to tell you that there has been a mistake, for tales of other children who lived ‘normal’ lives, who achieved amazing things. You may scour the internet for every scrap of information, for every sign that your darkest fears are unfounded. Be careful. Madness lies that way. For every story that brings you comfort, a dozen more will paralyse you with dread.

But they are not your story. They are not your child’s story.

Biggest excited by his windmill

There will be dark days. There will be times when the sick terror returns and you could scream with frustration. Sometimes, the fight will exhaust you – the fight to make it through the day, the fight to stay calm, the fight to be your child’s champion when no one else seems to care. You will feel so tired that you will wish there was a choice, a way to stop, a way to curl up in a ball and give in to despair. These things are almost certain.

But certainty is a scarce commodity. Your worst fears are a physical presence, concrete, weighing you down, restricting your airways. Hopes and dreams seem light and flimsy – as inconsequential as the air. You cannot grasp them long enough to trust that they are real, to imagine they could come true.

But some things are true.

You are strong enough. You will adapt, become a better person. Love, safety and happiness – they can be enough. Most days, they will be enough. When your child achieves something, you will be delirious with joy. When they do something you once thought was impossible, you will dance, giddy, around your kitchen. When you can penetrate their world, when you share the wonder of their unique perspective, when they make connections with you, and others – you will know that there is peace and goodness in the world once again.

Right now, you feel raw, bruised – your wish to take it away is all you can focus on. Or, you cling to a future you could bear, a future filled with those flimsy hopes, and you cannot escape idea that it is the only future that you want, that it is the only future that will not be a tragedy. That will not change quickly. This grief – it is too powerful to melt away.

But terror will retreat. That concrete spectre of dread will lose its power to haunt you so relentlessly. Hopes and dreams will evolve. Joy will become tangible again.

I cannot tell you that it will be okay but I can promise you that okay will change.

And that will be okay.

12 Comments

  1. 3rd July 2017 / 3:14 pm

    So well put, I always feel so bad for those who have a newly diagnosed child. I want to tell them it will be okay, but it never really is, it never goes away, but you do learn to adapt and being okay is however you perceive okay to be. Lovely post, all new autism mum’s should read this xx

    • Someone's Mum
      3rd July 2017 / 3:16 pm

      Thanks so much for such a lovely comment. Yes, that is just what I wanted to get across – that is is ok even though it is not ok too! Thanks again. xxx

  2. Carrie
    4th July 2017 / 12:37 pm

    Oh my goodness, my 9 year old daughter was just diagnosed yesterday and this article popped up in my feed today! Thank you for such an understanding and insightful article. I feel like I’m not so alone, that other people have gone through what we are going through right now and felt the same, and it is ok to feel like this. Thank you!

  3. A
    4th July 2017 / 2:48 pm

    From a mom with a recently diagnosed child….thank you. It brought tears and comfort.

  4. Annabel Greaves
    4th July 2017 / 7:15 pm

    From a mum with an autistic son who is now 13, we have been through ups and downs and told many times he will not be able to do some things and has often proved us wrong. All children, including those with an ASD, are individuals and will have their strengths as well as things they find challenging. The autism is always there and I am sure I will always worry about his future, but we have also had some great days when I am so proud. Hold onto those little things and steps forward which may seem tiny but are huge for your child. The most important thing to remember is that you are not alone, there are many mums and dads out there who have been through the same thing, from diagnosis to the journey through life and we are all rooting for you and understand how you feel.

  5. 9th July 2017 / 10:38 am

    Somehow “okay” takes on a new meaning. Sometimes I feel lonely, but I know that I am not alone – there are so many others feeling just the same. #spectrum_sunday

  6. 9th July 2017 / 10:45 am

    Thank you 💝
    #spectrumsunday

  7. 10th July 2017 / 2:42 pm

    I was so very lucky not to go through this. I realised my eldest is autistic because my sister is and had just had her diagnosis. So, I had support from my family immediately and never really had that lost feeling.

    I have been so overwhelmed by the support other parents online can provide, though, and I think this post is a great example of that.

    #SpectrumSunday

  8. 11th July 2017 / 9:34 pm

    #SpectrumSunday such a touching post, for my local parents support group I like to choose a blog of the week as there are parents who are at the start of their journey, this will be fantastic to share, thanks for sharing your wonderful knowledge yet again 🙂

  9. 11th July 2017 / 11:23 pm

    Such a lovely post. Now my son is going into his final year at Uni I can really look back and reflect on all this. He wasn’t diagnosed until he was 10 and his life was SO different back then and we feared he would never live any kind of normal life. #SpectrumSunday

  10. 15th July 2017 / 7:29 am

    It’s amazing what a good day can be measured by and different people have different experiences. As Joseph has become older our lives have certainly changed and we’re great at celebrating small wins #SpectrumSunday

  11. 15th July 2017 / 10:19 pm

    A similar emotional journey for us with an undiagnosed learning disability emerging…and it is okay! A different okay. Different not less. #spectrumsunday

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