The Lions in the Living Room

Someone's Mum with her son

When was the last time that you felt truly overwhelmed by an emotion? Fear? Sorrow? Anger? Confusion? When was the last time you felt like there was honestly no one to turn to, no way to make it better, no path back to a place where life made sense and the world kept turning?

For me, I suppose it was when we received my son’s autism diagnosis. For a long time, nothing could make it better. For a long time, I wanted rail against the world – scream, shout, tear down the sky. I wanted to demand answers, beg God, the universe, someone, to tell me that it wasn’t true, it was a bad dream, or even just assure me that we would all be ok in the end.

But no such assurances came. No one can tell me what the future holds.

I got up in the morning. I went to work. I played with my children and put them to bed. I loved them, as I always have. The outside world was just as before. It was the internal world that was spinning out of control, the internal voice that desperately pleaded for things to be set right, for this awful, churning bruise in the pit of my stomach to be taken, for the tightness in my throat to melt away.

And eventually, those feelings did subside. They never truly disappear but they became…quieter… manageable. We come to terms with things and learn to accept them. I do not know what the future holds for me, my son, my family. But I know we love each other. I know my son will be what he is meant to be and I will help him get there. That is enough for now.

Now imagine this.

There are three fluorescent lights on each side of the room. One of the set on the left has stopped working so the bars of light are uneven. Yesterday they worked and the bars were exactly the same length. Today they are different. How do you feel?

There is a picture in a book of a small child in the middle of a road on their own. You have been taught that small children should really ask for an adult’s help when crossing. How do you feel?

You always turn right on a certain road to visit the supermarket. But today, although you are on the same road, you are going somewhere else and so you need to turn left. How do you feel?

There are numbers in a book but they do not follow in sequence because they count different objects on the page. They are just scattered – a three here, a five there. How do you feel?

 photo Point Blur_Aug172016_144542_zpse0v2nsw2.jpg

Many people may have heard autism parents or professionals discuss the idea that children with autism ‘need’ or ‘respond well’ to routine. When you experience an autistic child’s desperate fear and confusion when faced with the unexpected, this description seems so inadequate. My son’s way of viewing the world in constrained by a rigidity of thought and action that you can only really understand by knowing him, loving him.

Some days a big change, something we had all been dreading, will seem not to worry him. Other days, the grief and heartache of a different spoon can make him huddle against me, racked with sobs, imploring me to make it better. Sometimes I can make it better. Sometimes I can just fetch the other spoon. But sometimes the light is broken. Sometimes, the other spoon isn’t there, we have to turn left, and the words and pictures in the book are set and cannot be changed.

For him, a different route, a pattern disrupted, a rule broken, a turn of phrase slightly changed – they can make his world spin out of control. They can feel, to him, like finding a lion in the living room. He is so young and the world is so new, so frightening to him – as it is to any young person, finding their way. And so his turmoil cannot not stay internal, like mine would, like yours might.

He rails against the world. He wants to tear down the sky. An uneven light can make him feel like the universe is wrong, wrong, wrong. I see it in his huge blue eyes, brimming with tears. He cannot understand why such an awful trick is being played, why the world would is so unpredictable, so disturbing.

If you saw a child tantruming on the street, refusing to go the way their mother asked, flailing and kicking in anger and frustration, would you think they needed clearer expectations about how to behave? How about if that child were old enough to be past tantrums? Seven? Eight? Nine?

If you saw my boy, sobbing, screaming in a coffee shop because he wanted a chocolate muffin and there were none left, would you think he was spoiled? Would you think that I had indulged him too much, given him too many muffins, not been strict enough?

Now remember that feeling. That desperate, overwhelming emotion – the one where you were lost, had no one to turn to, desperately wanted the world to be put back where it should be. Remember what it is to be full of fear and feel alone.

Remember that feeling and catch a glimpse of the lions in the living room.

Remember that feeling and be kind.

 

This article was originally featured on the National Autistic Society’s website and you can see it here.

Linked with:

#KCACOLS with A Moment with Franca

76 Comments

  1. Nicola Douglas
    25th August 2016 / 11:17 am

    Completely understand and agree. More kindness would go a long way. Sadly the tolerance the world shows to a toddler they assume is having a tantrum doesn’t extend to a teenager or an adult having a meltdown. More tolerance, understanding, kindness but less judgment would be wonderful! 🙂

  2. 3rd September 2016 / 10:13 pm

    Oh such a powerful post and so beautiful as all your posts are. xx #KCACOLS

  3. 3rd September 2016 / 10:22 pm

    A superb post and a great use of imagery to explain a tricky concept.

    #KCACOLS

  4. 3rd September 2016 / 10:25 pm

    A beautifully written post. I can really feel the emotion. Thank you for sharing it and for educating me. Pen x #KCACOLS

  5. 3rd September 2016 / 10:35 pm

    Such a lovely and very emotional post… I hope your little one got the appropriate help he needs. I think you’re so brave for sharing your sentiments with your readers. Thank you. #KCACOLS.

  6. 3rd September 2016 / 10:43 pm

    this is a lovely post, so well written. It will definitely help to educate for people like me that haven’t experienced this #KCACOLS

  7. 3rd September 2016 / 10:49 pm

    Such an honest and emotional post. Thank you for sharing it.x #KCACOLS

  8. 3rd September 2016 / 11:00 pm

    Just lovely. I do think people are getting better as they’re becoming more educated…or maybe I’m naive. #KCACOLS

  9. 3rd September 2016 / 11:10 pm

    Thanks for sharing your experience and your son’s. You have articulated it so well so others can at least try to understand what it feels like to be autistic. A very important post. #KCACOLS

  10. 3rd September 2016 / 11:48 pm

    So beautifully written. 👏 👏 👏 thank you for this tiny glimpse into autism. #KCACOLS

  11. 3rd September 2016 / 11:54 pm

    How lucky he is that you understand his complex emotional responses. You will always be a real asset to him and a true advocate. Thank you for sharing.
    x Alice
    #kcacols

  12. 4th September 2016 / 2:50 am

    Such a powerful posts. You have changed the way I view the screaming kids I see at work. Sometimes I just stop and wonder if behind the screaming instead of a bratty kid is a child who is experiencing something else completely. We need to be more understanding and stop judging everything. Beautiful post 🙂 #KCACOLS

  13. 4th September 2016 / 6:39 am

    This is such an insightful post. From this and many of your other posts I feel I’ve developed a better understanding of autism. #KCACOLS

  14. 4th September 2016 / 7:16 am

    So beautifully written. I had the same feeling of despair and the world stopping when we were told my youngest boy was seriously ill and had a tumour. Hopefully though he is fixed, Autism is your family’s life long journey. Thanks for sharing, it really does remind me of the Harper Lee’s To Kill a Mockingbird, “You never really know a man until you understand things from his point of view, until you climb into his skin and walk around in it.”

  15. 4th September 2016 / 7:21 am

    This was a wonderfully written post and very useful for explaining autism, thank you. Sharing on FB xx #KCACOLS

  16. 4th September 2016 / 7:42 am

    This is an amazing post and such an honest and real insight! I think you’re amazing for writing this, and couldn’t agree with you more – Kindness goes a long way and is such a powerful emotion xx #KCACOLS

  17. 4th September 2016 / 8:28 am

    This is such a powerful post, so much of it has made me stop and think about how I react to different things and then the thought process/feeling for a child with autism. Thank you #kcacols

  18. 4th September 2016 / 8:35 am

    I think be kind is the most important reminder we can give ourselves. Sometimes, that is exactly what is needed. #kcacols

  19. 4th September 2016 / 8:49 am

    It’s easier for people to pass judgement than to take a closer look. When our parents were growing up, child raising was the duty of the community, now it’s become lonelier. It’s sad because now it has become a case of what you see at first glance. I wish there were more people who recognised autism (sorry about the rant) #KCACOLS

  20. 4th September 2016 / 8:53 am

    Amazing words, capturing experiences that none of us will truly understand. The hard part as a parent is knowing your child needs certainty, routine and control and doing everything you can to try to anticipate change but having to sit back, helpless, when life happens and things change anyway. Thanks for sharing a glimpse into your son’s world x

  21. 4th September 2016 / 12:55 pm

    This is an amazing post, you have managed to put into words something that a lot of people have to go through yet not a lot of people completely understand perfectly. It was so powerful and emotive to get a glimpse into yours and your sons world #kcacols

  22. 4th September 2016 / 1:11 pm

    As if parenting isn’t hard enough, add autism into the mix! You seem to have such a brilliant understanding of your sons needs in relation to this. It would be nice if others could be a little more understanding. Watching him struggle with things we wouldn’t even notice must be very hard. You are very strong, he is lucky to have a mum so willing to see his perspective and not try and mould him into something he isn’t. You have obviously been through a lot.
    #KCACOLS

  23. 4th September 2016 / 1:56 pm

    Im feeling a bit delicate today due to too many hormones and too little sleep. My children do not have autism or any additional needs but the sentance ‘ the lions in the living room ‘ struck a cord with me. No one can tell any of us what the future holds but to have that extra worry always in the back of your mind must be exhausting. There is always ‘hope’ . Don’t let anyone take ‘hope’ away from you . XXXXX#KCACOLS

  24. 4th September 2016 / 1:59 pm

    What a lovely post. Your little boy is very lucky to have you as his mum. Xxx #kcacols xx

  25. 4th September 2016 / 2:20 pm

    This is such an insightful post, I feel like you have taught me so much about autism in just this one post. I think just being kind to everyone in general and not judging others is the best way to be, you never know someone else’s situation.xx #KCACOLS

  26. 4th September 2016 / 3:02 pm

    Brilliant post – this explains it so well. Your son is so lucky to have you! #KCACOLS

  27. 4th September 2016 / 3:26 pm

    Lovely post, I have experience of children with Autism so I can relate to your post. Its such a difficult thing to explain to people and I imagine you feel like wearing a big sign ‘explaining’ in public sometimes!

    #KCACOLS

  28. 4th September 2016 / 3:31 pm

    Yes I agree that Kindness it what we all need to make our journey easier. great post, beautifully written as always 🌸 #spectrumsunday

  29. 4th September 2016 / 4:17 pm

    Such a lovely and informative post. You’ve explained it so simply but it’s so effective. I’m sure I’m guilty of sometimes judging without giving any thought as to why a child may be behaving in a certain way. You’ve definitely made me think. Thank you #KCACOLS

  30. 4th September 2016 / 4:49 pm

    What a great post! A really worthwhile read. Very eye opening, informative, and full of emotion. #KCACOLS

  31. 4th September 2016 / 5:27 pm

    We all need a little reminder that things aren’t always as they seem. A little kindness goes a long way, as does minding your own business and not judging others in situations you are not fully aware of. Well written post xx #KCACOLS

  32. 4th September 2016 / 6:42 pm

    This is so beautiful. I don’t have. I have experience with Autisum, but the way you describe it is so personal and touching that I feel like I’m half way there with you. You are so strong! Puts my moaning about kids throwing and pants on the floor into prospective. #KCACOLS

  33. 4th September 2016 / 6:48 pm

    It baffles me how much I hear about autism today. It’s almost like it’s become a phenomenon but a serious reality. And so many different spectrums of it. I wish for you strength to tackle each and every day. Thank you for hostessing #KCACOLS

  34. 4th September 2016 / 7:30 pm

    That’s a brilliant post. I grew up with a severely disabled and autistic brother and 20 years ago the world was quite a different place when it came to autism, and it’s very far from perfect now! I love how you’ve explained things here I hope it is taken on board by people who have read it xx #KCACOLS

  35. 4th September 2016 / 7:44 pm

    Your writing is so powerful as always – so relatable and easy for a reader to really put themselves in that position and understand. I hope this is read by thousands of people – it deserves to be. #KCACOLS

  36. 4th September 2016 / 7:45 pm

    A lovely well written post and I’m so glad to have read it, i think people’s perceptions are skewed sometimes and it’s words like this that set people straight. Thanks for sharing with us on #kcacols

  37. 4th September 2016 / 8:01 pm

    Thank you. Such a well written post and so important that everyone should understand and take what you have said on board. You describe it so well – it really made me stop and think. #KCACOLS

  38. 4th September 2016 / 8:49 pm

    I took my son shopping today. He was the small boy shouting loudly that he didn’t like the noise. The “noise” he was disliking was barely audible to most people in the store (a baby crying some distance away) as all they could hear was my son.

    I understand that the sounds pains him but goodness only knows what other people in the store thought. I just kept that smile fixed in place and carried on! #KCACOLS

  39. 4th September 2016 / 9:19 pm

    My best friend in childhood was autistic and I remember well how hard it was for him when there was change or things weren’t quite right. Thank you for sharing this with us, beautifully written as well. #KCACOLS

  40. 4th September 2016 / 9:34 pm

    This is a very well written post explaining a difficult subject. Reading this will help people to understand a bit better.

  41. 4th September 2016 / 9:35 pm

    I think one of the difficult things with regards to autism is that the term itself can’t be defined exactly for anyone – so one child with autism can be completely different in terms of needs and difficulties compared to another. But then I guess the same is true for every child – every child is different and every child has different needs, difficulties, interests … The key i suppose is finding out how to work with the knowledge you have of the child you have and their individual needs and remember they are still the same child, regardless of the diagnosis. It sounds like you are doing an amazing job and you have a really good understanding of how it can feel like for your child. Great post to raise awareness and help others to understand too xx #kcacols

  42. 4th September 2016 / 9:40 pm

    This is a perfectly written post. It does so much to help someone understand how a child with autism might feel, and to remind people not to judge when they see a child screaming in public about something that seems inconsequential. #KCACOLS

  43. 4th September 2016 / 9:44 pm

    Amazing and powerful post. So perfectly and beautifully written. So many don’t understand the meaning and affect of autism. Your post gives us an insight into a world so many refuse to appreciate or understand. #KCACOLS

  44. 4th September 2016 / 10:31 pm

    Beautifully written Danielle. I know all too well the story you are trying to tell. It’s heartbreaking watching your kids go through such challenges, and the rest of the world not seeming to understand. Thank you for sharing

    #SpectrumSunday

  45. 4th September 2016 / 10:51 pm

    I love this post. Not a lot of people understand what a parent goes through when their child is on the spectrum and I think you wrote this post beautifully. You’re doing great! #KCACOLS

  46. 5th September 2016 / 12:08 am

    Such a beautiful post. A wonderful way to advocate with your words and give insight in to the multitude of little moments in a day, that can be so overwhelming for our little ones. This post completely explains the panic and anxiety that our children can feel over things that would go unnoticed by others. These are the parts of Autism that everyone needs to be more aware of, maybe then it will eventually lead be less judgment and more kindness. #spectrumsunday

  47. 5th September 2016 / 2:19 am

    A post full of emotion and love! What a special boy you have! Thank you for sharing brave and loving Mama! #KCACOLS

  48. 5th September 2016 / 8:33 am

    Really powerful writing. Amazing to read and informative too, your posts always reach out to me, thank you!

    mainy x

    #KCACOLS

  49. 5th September 2016 / 8:35 am

    Fantastic post, such clarity in your description of feelings and emotions. It really is an eye opener and will hopefully make people think a little bit instead of passing judgement. #KCACOLS

  50. 5th September 2016 / 12:01 pm

    This is such an impactive post. I can imagine how heartbreaking it must be to watch your kids go through such challenges. Thank you for sharing this.

    #KCACOLS

  51. 5th September 2016 / 12:11 pm

    Beautiful post. I can relate. Both my children are adopted, and early life trauma means they are pretty much in a constant state of anxiety. This has lessened, but when they first arrived we had to adopt a strict rigid, routine. Even now when holidays arrive, school is over, the routine has ended – the kids anxiety levels increase and we’re into meltdown mode. They hate unpredictability! Stay strong, I know its tough, but with your love and support he’ll get there! #KCACOLS

  52. 5th September 2016 / 1:27 pm

    Great post. Too many judgey people out there who don’t know about the lions. We carry on regardless 🙂

  53. 5th September 2016 / 1:52 pm

    Very thought-provoking. It is so easy to jump to judgemental conclusions when you see children acting up in public, but since getting to know a couple of friends’ kids with autism, I am much more tolerant/understanding – thankfully!
    #kcacols

  54. 5th September 2016 / 3:12 pm

    really interesting read. I’ve read a few posts recently from some fab bloggers about autism and it has certainly helped with my understanding of it. thanks for sharing 🙂 #KCACOLS

  55. 5th September 2016 / 8:44 pm

    So moving, and so well written . My heart breaks for my son when I see the anger building up inside him. He’s so little, it must be terrifying for him. Thank you for writing #kcacols

  56. 5th September 2016 / 9:08 pm

    As an autistic person experienced it and it doesn’t get any easier as an adult. Hopefully over time there will be more awareness and more acceptance. People are quick to pass judgement and it’s hard. Luckily more people are accepting in my experience from when I was a child X #kcacols

  57. 5th September 2016 / 9:35 pm

    A lovely piece of writing. It’s helped me learn a great deal xx

    #KCACOLS

  58. 5th September 2016 / 10:04 pm

    That’s so beautiful. I have no experience of dealing with autism, but can truly empathise. #KCACOLS

  59. 6th September 2016 / 4:23 am

    I am speechless. Very powerful, wonderful, thought provoking post. Thanks for sharing! #KCACOLS

  60. 6th September 2016 / 9:07 pm

    Oh my goodness. This post really made me think about the scenarios. It’s so true we live in a world where snap decisions are made all the time. Sadly not everyone is kind. #KCACOLS

  61. 7th September 2016 / 9:40 pm

    You’ve explained it so well. Having autism in my life has made me much less judgmental. I don’t know what’s going on in other people’s minds and bodies. I don’t know if someone else’s entire understanding of the world has been challenged just as I get a snapshot of their life.

    #SpectrumSunday

  62. 8th September 2016 / 10:32 am

    This is so beautifully written, eye-opening and thought provoking too. Really enjoyed reading. Thank you. #KCACOLS

  63. 8th September 2016 / 4:26 pm

    Beautifully written – such an important message #kcacols

  64. 8th September 2016 / 7:53 pm

    this is such a powerful post, thanks for sharing and reminding all of us to be kind

  65. 9th September 2016 / 12:09 pm

    Since my stepson was diagnosed with Autism 5 years ago I’ve read many descriptions of what Autisim is like.

    This by far is the best!

    We’ve had stares because of meltdowns, when he was promised chocolate mice for being good at a Dr’s Appointment, but the shop had sold out. Wailing and flailing because we had to go to another store as oue usual one didn’t have some items we needed.

    A fantastic post.
    #kcacols

  66. 9th September 2016 / 12:32 pm

    Such a powerful post. Those emotions can be difficult for an adult to handle let alone a child. We can be so quick to judge people so thank you for the reminder that we need to be kind! #KCACOLS

  67. 10th September 2016 / 8:28 am

    Great post. This all relates week to how I felt about my son’s diagnosis and his meltdowns. I wish I could stop worrying about other people’s reactions when he can’t cope and realise that they just don’t understand. #kcacols

  68. 10th September 2016 / 8:49 am

    Really powerful post and a real eye opener! #KCACOLS

  69. 10th September 2016 / 1:16 pm

    Everyone should read this (and many of your other posts) whether they are in the same situation as you or not. You break it down so that it is understandable for an an outsider to get an idea of what life is like for you and perhaps even more importantly for your son. Thank you for always sharing so openly and honestly. #KCACOLS

    Nadia – ScandiMummy x

  70. 10th September 2016 / 10:03 pm

    There is nothing more heartbreaking than seeing your little one become overwhelmed because the world around them does not meet their expectations.

    Your post really brings it to life, so that others may understand just what it is like.

    #spectrumSunday

  71. 11th September 2016 / 12:53 am

    That’s a really great way of explaining it. I always remember a little boy with autism in my mum’s school many years ago, who was really upset because they were told they could bring in their ‘teddies’ for Children in Need. Of course, most of the children interpreted that to be any favourite soft toy, not specifically teddy bears, and he just could not cope with the fact that the instruction had not been followed in the manner in which it had been phrased, so he kept shouting at other children if their toys were not bears. The other children didn’t see any problem with their toys, and the story can even sound kind of amusing. But, of course, it wasn’t for that little boy – he was truly distressed that things were not as he believed they should be & therefore something was very wrong, and it disrupted the entire day for him. The key to understanding I think is exactly illustrated in the examples you use – it is in realising that some people do not feel the same way about something out of place or unexpected as you would yourself. Therefore they don’t react the same way either. Their reactions are just as reasonable a response to how they feel about the situation as anybody else’s. #KCACOLS

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