When We are Lost

We have had a few difficult days. If I’m honest, they’ve turned into difficult weeks. My Instagram feed doesn’t show it, because my phone isn’t the first thing I reach for, in those moments of despair.

I reach for you.

Even if you’re kicking and screaming, even if you beg me not to, even if it’s just to take you somewhere safe. Away.

Difficult weeks don’t mean life is bad. Though we face challenges, they don’t mean you’re a burden. My life was made better when you came into it and now I know no world without you. And there is so much joy.

Your delight is breathless – you chase your sister and she squeals with laughter. “Mummy, I’m chasing H- !” and you both collapse in giggles. Your delight is my delight. You have begun to talk to her much more, when daddy and I are not watching. I hear you explain where you are, what you can see. She babbles back at you and all is right with the world.

Our days are filled with a million tiny moments – moments of joy, terror and wonder. Because you are three, these moments come thick and fast, spilling into one another so that joy becomes anxiety in a heartbeat. Because you are autistic, the fear can be totally unexpected and all-consuming– for you, for me.

Your wonder at the world around you grows, and my wonder at what you can learn and achieve does too. The Space Encyclopaedia is your absolute favourite. We’ve had it only a few weeks and you already know parts of it by heart.

But where there is obsession, wonder and anxiety go hand in hand. If I say a word out of place, say that the picture is just of Jupiter, instead of ‘big picture of Jupiter’ or ‘a picture of the inside of Jupiter’, your wonder quickly crumbles. Everything must be just so.

When the terror comes, I am lost. You are lost to me. I am wandering in a dark grey fog, desperate to find you. Even in my arms, you are a million miles away.

As you become more aware, these times are beginning to become more frequent, more difficult to manage. Your expectations are fixed. Your sense of rules, of danger, engrained. A cartoon character flying on a cloud, your sister going down the slide –you cannot bear them. Movement and heights and flying fill you with dread. Your face contorts in confusion and anguish. But because you need time, and calm, to collect your thoughts and explain, sometimes I have no idea what has made you inconsolable. You try – but often I cannot know what is wrong, how to help you.

Even after, the anxiety has been too much. You will not look at me. Your expressions become nonsense – just repeated sounds or words and sounds you like. You will not not answer. You bite and suck your fingers and shout out, as if you are in pain.

And I wait until you come back to me.

The music helps. I sit next to on the sofa and we are both adrift, you and I. But as the notes spill out from your headphones, I feel your body relax, your breathing slow. You move so that you are resting against me. We breathe together. I squeeze you tightly, and there you are again.

Biggest with his headphones

Some days, you can ask the same question, over and over again, a hundred times in a row, and the answer must be the same, exact, perfect, every single time. Any deviation, any refusal, any attempt to relax your desperate hold on the precise, the predictable – they are met with bleak terror.

I’ll answer you exactly, my sweetest boy. I’ll answer a thousand times, unerringly the same, that the brachiosaurus says ‘Roar!” – if you need me to. But is it the right thing to do? The world is unpredictable and you need it to follow rules. While you are with me, I can make it so. But what happens when I am not?

School looms in front of us, eighteen months away. The choice of where you will go looms closer. Our choices now sculpt your life.

I phone the Paediatrician. Your genetic tests are still not back. I phone your nursery. You still cannot move to the preschool room, six months late – it’s too risky without one-to-one funding. There is no funding. I phone the Children’s Clinic. Your speech and occupational therapy referrals have gone through but there is such a long waiting list. Seven months and counting with no word. I phone and I phone and I phone…

I am not used to this. My whole life, I have never felt so helpless. I could always DO something. Read, learn, pester, fix. I have never felt that the system was so broken that I couldn’t get what I needed, never felt resentment that I have worked hard, contributed, and I deserve something back. But I feel that way now.

I need to know how to manage your desperate anxiety. I need to know how to help you cope in an erratic world. I need to know how to help you communicate. I need to know that I am doing the right things for you.

We need help.

And the help feels like it will never come.



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26 thoughts on “When We are Lost

  1. Big hugs lovely. Waiting around for referrals is so frustrating for us as professionals so much harder for parents. Hopefully you will find out which school little man is going to soon and you can start transition steps for him. When school starts he can be part-time for a while as it should limit the tiredness which probably doesn’t help either. Thanks for sharing I will be passing it on to a few of the parents at work I know it would help xxx

  2. This is one of the most honest posts I think I’ve ever read – I’ve tears in my eyes. I want to say “you poor poor love” but that doesn’t feel quite right – I think you are the most wonderful mother for your son and he is so very very lucky to have you – you sound like a very special person and I really hope you get the support and help that you both need. Big hugs #BloggerClubUK

  3. I feel for you both so much reading this – it’s a heartbreaking situation. You’re obviously such a brilliant mum, and it’s clear that you’re doing a fabulous job, but it must be so frustrating not to be able to get your son the help and support he needs. I really hope you start to get some answers and help soon. #BloggerClubUK

  4. Oh my. I have never seen my thoughts so eloquently translated into words. Thank you. We are thousands of miles apart, but you are not alone.

  5. Love how you’ve expressed your feelings in this post Danielle. I know just how tough it is being there watching this unfold in front of you, feeling like there’s nothing you can do.

    Stay strong, keep showing the love that you’re showing him, you’ll learn more about him every day and you’ll find the right way to make a difference x

  6. Fantastic post, always so honest and heartfelt. I remember this age as being one of the most difficult Danielle although that doesn’t help! To have all the stress of waiting for referals at the same time is really hard too. Using music to calm is a great technique do you have a weighted blanket or vest? That can also offer comfort. When my big lad has meltdown I squeeze him tight and whisper, you’re safe, it’s OK. The deep pressure seems to help, something that really helped us at this time was using a visual timetable. If you want to have a proper chat DM me anytime 🌸

    1. He does have a weighted blanket, yes! With double decker buses on (his favourite). That’s exactly what I do with E too – squeeze him and tell him it’s ok. Thanks so much. x

  7. You made me cry! Beautifully written…I found that age the hardest so far with The Boy. Things have really improved since he’s received one to one support at school. All the best. X

  8. This is such beautifully written and heart felt post as are all of your wonderful blog posts. It is a heartbreaking read and I am sorry to hear that you aren’t getting the answers and support that you so deserve and need quickly. You are doing an amazing job so carry on doing what you are doing and stay strong too. It was also really interesting to read how music helps calm your son. I think that is wonderful that you have that and that it offers some comfort #justanotherlinky

  9. So beautiful Danielle. As always of course. It is so hard isn’t it? Feeling so powerless is probably that hardest thing I have experienced this far, not knowing what to do, how to do it or if you are doing the right thing. I’m having a few tough weeks too so I know how you feel. If you ever need to chat, rant or vent you know where I am lovely! Thank you for linking up to #spectrumsunday, hope you join me again this week xx

    1. Thank you so much. He is a little improved back in his routine. It is tough when he gets so, so inconsolable though. xx

  10. Thank you for sharing such a beautiful and heart rending account of how it feels for both of you. I’ve seen such impatience from people towards autistic children and their parents based on a lack of knowledge and empathy.

    It’s post like this that get across the realities and the complicated balancing exercise of making your child happy and thrive at the same time as preparing him for the unpredictability of the world and navigating a system designed for the system rather than the people that need it.


  11. I’m so sorry, this sounds unbearable for you & your son. You are a wonderful mother & are doing everything that you can – like how you figured out that music helps. You are helping. You are doing the best for your son. I know what you are saying, I think all moms want to fix the situation but sometimes we can only help. I hope you get the support you need soon! Thanks so much for linking up with us at #bloggerclubuk x

  12. This is so powerfully moving, I can totally empathise with so much of what was written. You sound like a wonderfully patient, loving mother. The journey that is special needs parenting is testing, the frustrating helplessness we can feel can be consuming. I am in a similar boat, the constant calls, chasing appointments, referrals, trying to get informed to help my child. I hope you get the information you need very soon xx

    ps you might like http://caringinthechaos.co.uk/10-tips-to-boost-speech-and-language-in-your-toddler/ for some S&L tips xx

  13. You describe parts of my life so eloquently – it could almost be me and my daughter Esmee that you are talking about.

    But Esmee is now 9 years old and we face different challenges. But we also still have lots of fun and like you I count my blessings every day because I would not be without this wonderful little girl who have brought so much joy into my life.

    Yes I have lots of fears for the future but I am optimistic that together Esmee and I will face these head on and overcome the obstacles that we will almost certainly face 🙂

  14. The waiting is often the hardest part, especially in the early days. Wanting to DO something, anything, has been a common theme in my life. Hope you have found local support to share the load with x

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