A smile is all it takes…

I’ve almost entirely stopped caring now about the judgements I receive when I’m out with The Boy. He is a fairly sizeable 3 year old and it’s not unknown to receive a disapproving look when I’m carrying him or pushing him in the buggy. I don’t care that it looks like I’m carrying a 15 year old boy like a chimp baby.

He rarely has shoes on. This is mostly met with amusement and bewilderment at how he walks across sharp gravel like it’s soft grass. I’m passed caring about that.

The ear-piercing scream and lurching towards me to swipe at my face or bite me? Yeah…sometimes a little harder to take but all in all, I don’t care about everyone else. I’m just concentrating on trying to make things better for The Boy. Mostly for my sake – I’m no angel – but a little for him too.

Today was one of those days. I’d taken him to his favourite place. Did everything he liked in the order he liked it. Made our way to the highlight of the day and all was going swimmingly. We arrived at a short queue for the steam train but all was good in the world because I’d pre-purchased the ticket. It was a minute maximum to keep him from losing his shit and becoming angry hulk boy about not getting on the train instantly. Then the big decision…whose poor carriage do we get into knowing there was going to be some ‘social issues’ whenever other human beings are involved.

Carriage full of kids. Avoided. Carriage with a small space left. Avoided. Carriage with chairs that can be climbed over (despite people sitting on them). Avoided. An end carriage, closed in, only two other people – an older couple. This will do. In my head I’m already feeling sorry for them and apologising for The Boy. I know I shouldn’t but I do do this.

We get on. The Boy instantly wants to stand next to the window. It’s where he always stands. Shit. “Ted, sitting here.” I try knowing it’s futile. He tries to push his way to the window again. “Ted, sitting here.” Desperately trying to redirect him knowing it’s pointless. In my head I’m hoping the couple get it and offer to move, but they don’t. He tries again. “Ted, sitting here.” Aaaaaaaand….meltdown.

There’s the scream. Oh, and here comes the biting. Now he’s smashing his head against the bench. Still screaming. Perfect.

The couple just look at me, horrified. “Ted, sitting here.” Utterly pointless but I try, mainly to show them that I am trying. Still they stare at me, waiting for me to ‘do something’ to stop the noise. The Boy lurches towards the woman’s leg and grabs her ankle. “Owwwwww!” she shouts as The Boy buries his nails into her skin. Fuck. I wasn’t expecting that. “I’m so sorry. He has autism and doesn’t understand why I’m stopping him standing next to the window, where he always stands.”  Still nothing. Just a stare boring into my soul, whilst leg rubbing. They’re looking at me like I’m the most abhorrent parent in the universe.

In a second, it flashes across my mind. “Get out. Just apologise and get out. It was a fucking stupid idea bringing him here today.”

As I’m visualising taking him off the train, my mouth opens and what came out even surprised me. “Would you mind if we swapped seats?”

She looked at me like I’d just asked if it would be okay if I pulled my knickers down and take a dump on the floor. She didn’t answer me – just stared. After an excruciating five seconds, she and her husband stood up and let The Boy stand near the window, making their annoyance well known with their audible tuts and sighs.

The train moved forward. The Boy was calm. Sweaty and red, but calm. I held him on my lap and kissed the back of his head. Inwardly, I was laughing. Laughing at the lunacy of the situation that I find myself in so regularly. Laughing at the rage The Boy must have felt when he gouged the poor woman’s leg. Laughing at how the carriage was eerily silent after what had probably felt like an eternity of screaming.

About halfway into the train ride, all was still calm. Everyone had resumed normal business. The kids were chatting busily with their parents, asking a million questions and dispensing a million facts. The traumatised couple sat next to me had relaxed into the ride and were chatting about the flora and fauna. All was well.

As I looked up, I noticed the mum sat opposite looking at me. She held my gaze and then she smiled. She continued to look into my face for a few seconds before we both looked away. In those few moments, she had said a thousand words:

“It’s okay.”
“I understand.”
“I don’t judge you.”
“It hasn’t bothered me.”
“You’re doing great.”
“We’re in this together.”

I don’t know what her experience of autism is, nor do I care. She just got it and wanted to tell me. That’s when the tears unexpectedly erupted. I buried my head into the back of The Boy’s mass of tangled hair and let a few tears fall. I’m sure she wouldn’t have wanted me to have cried at her show of kindness, but it meant so very much.

We all have those desperate situations as parents, regardless of whether your child is impaired or not. Those moments when you think, “what the fuck am I doing? I have no idea what to do next.” You know you’ll get through it. You always do, but that bit of recognition speaks volumes and makes it feel okay.  A smile is really all it takes to make things feel a little better. Thank you to her. I will always be grateful for that smile.

22 thoughts on “A smile is all it takes…

  1. Lovely blog post. Ds is 20 now and we have had hundreds of similar incidents over the years. I’ve mostly forgotten the nastiness and judginess (apart from the one who didn’t realise my bear of a father was waiting and who pointed out the error of his ways in the most intimidating manner imaginable) but I remember the lady who, when I was on my knees with tiredness, patted my arm and said I was doing a brilliant job,I remember the man who gave dd a special pebble and those who made little allowances to make our lives just that little bit easier.

  2. Brilliantly written! Sometimes the people you expect will ‘get it’ don’t and those you think won’t do. We recently had a rather rude couple staring at us in a restaurant. I always smile even if inside I’m dying!

  3. Moved to tears. And I am a horrible hard nut when it comes to blogs. Not only deeply moving, but also an education. Thank you. I

  4. This post speaks volumes to me. We are in the middle of the summer hols and have had numerous meticulously planned activities. They sometimes don’t go to plan and often I end the day thinking ‘Why the fuck did I bother?’, due to the mucky looks, tuts and comments I may get due to my son’s behaviour. It is true, a smile is all it would take for me to think, my plans were worth it.
    I have shared your post on Facebook, I hope that’s OK.

  5. Thank you for writing this. My cousin is now 19 with severe autism. When he was a toddler his fits of anger and frustration were scary. Luckily for us. he was small and most of our injuries were manageable although painful. As he grew older and bigger that changed. His tantrums are more violent…his mother has been given black eyes and cuts to her face, huge welts from pinches, etc. Kicked out of Disneyland after encountering a short queue and assaulting his mother. This disease is horrible. But my question is…when do you decide you can’t control him anymore? When do their assaults on you and/or others become unmanageable? The state has threatened to take him away if he continues to hurts others. We don’t want to give him up. He is sweet on his good days but the damage he can do now as a young man is much more. Your thoughts would be much appreciated.

    1. I do wonder this myself. My son already has an incredible strength and no doubt will be a handful when he’s older.

      How much help does your cousin receive, as in services to help him/your family understand the condition?

      I see autism as a language. I have to learn to speak the language of autism so I can help my son regulate himself because presently, his violent outbursts are just a communication. They’re not ideal but he is not able to understand or control the feelings he gets and for some ‘autists’ these hard feelings come out in compulsions like self harming, or OCD type behaviours, and for some, violent outbursts.

      It’s not really for me to make my son fit into my world. It’s up to me to learn the language of autism and find a bridge that can marry the two worlds together. It will always be a compromise but that is how it has to be. I have to look underneath the behaviour and see what’s driving it, and it’ll usually be anxiety. Autists are unable to have imaginative thought so ‘waiting’ is such an anxiety driven exercise. How long is a wait? What does 5 minutes even mean? 5 minutes staring at a microwave to ping can feel like forever. 5 minutes left to finish playing with your favourite toy is never long enough. A physical timer which shows 5 minutes makes perfect sense. It’s something tangible and not something that has to be imagined. They can physically see the time.

      I think what I’m trying to say is, don’t look at his behaviour as a problem that needs to sorted. It’s a communication that needs to be understood – easier said that done. But not impossible with the right help.

  6. This is beautiful! And yes, sad. I wrote this last week but didn’t gave the guts to post it anywhere:
    To The Man who Accused me of ‘Child Abuse’.

    Yesterday, my two children (a boy aged 13, a girl aged 7) and I were having a really difficult morning. My Chronic pain and health conditions made getting out of bed incredibly difficult and painful. The children’s Autistic Spectrum Disorder, Sensory Processing Disorder and Oppositional Defiance Disorder (both of them) made asking them to get dressed, use the toilet and brush teeth a real struggle for all of us. We had a discussion about them helping to take care of themselves and each other. We needed to walk the dog, so armed with an emergency pack, white cane, walking canes, sunglasses and lotion we finally managed to get to the park at 12.00. It was insanely hot, and I asked my son (13), with complex health needs to please put on the baseball cap from the car.

    He didn’t want to. He REALLY didn’t want to. My son by this point had hurled the cap in my face, and across the car park, and I was, frankly, losing my cool.

    I reasoned for 20 minutes (whilst trying to watch the dog and the 7 year old). I held the hat on his head whilst he tried to pull it off. He is 13, almost as big as me and was lashing out. It wasn’t my finest hour, for sure, but what came next destroyed me..

    A man who was sat at an outside cafe, who had been watching the whole scene came up to me, thrust his finger in my face and said “get your hands off that child. This is child abuse”.

    My son ran away because he was upset by the man’s aggression. The man continued to shout at me til I stumbled away sobbing.

    I was terrified he would call the Police and accuse me of awful things, so phoned them myself. They were astonishing. They listened to my account, offered to come and help, and convinced me I wasn’t wrong.

    Throughout the whole day, and tonight (it’s 4 am and I’m awake upset again), his words echoed through my head. I started keeping a mental log of the jobs I do without questioning, and wondered if he had to do what I’d already done that day, could he?

    Meds (7 types given at least 5x a day, including injection)
    Watching for crisis that can be fatal 24/7,
    Reminding children to use the toilet- facing rows and possibly hitting me that they don’t need it (they do!)
    Having the same conversation at least 20x about one subject,
    Persuading children to get dressed- involving tears and clothes throwing- none of the clothes are right (both of them),
    Checking blood sugar levels
    Reminding them to drink (often with tears and shouting about what’s allowed)
    Making sure they had a ball they both found acceptable (with tears and arguing)
    Persuading them that the sun block is essential (with tears and shouting)
    Tooth brush loading, then checking
    intimate care of a boy in puberty, which is hard to handle,
    Getting them to check their lists by the front door of what they need to take (working so hard on independence!)
    Ensuring emergency pack, meds, water packed,
    Arguing about suitable footwear (including a flip flop hurled at his sister)
    Handling argument about who sits where and who gets to choose the music (it’s only a 5 minute car ride!)
    Stopping dog being hurt when she’s not doing what I asked immediately and child enters meltdown
    Managing own chronic pain through meds and walking sticks, nebulising for breathing (both worse in heat)
    Then normal household chores.

    All of this before we left the house.

    So no, Mr finger-pointer, I wasn’t winning any parenting prizes by the time we got to the park, and my son wouldn’t put his hat on, but your accusations, your threatening behaviour, your abusive language didn’t make my day any easier.

    Nor did the difficult conversation I had to have with the children about what ‘Child Abuse’ is.

    Nor did my son shouting at me that I was an abuser.

    Nor my daughter hugging me deeply crying about the horrible man.

    I agree that we need to watch out and safe-guard all children, but to make snap judgements, and then accelerate an incredibly difficult situation was really the worst thing that you could have done!

    You could have come up to me and asked if I needed help, but you didn’t, you judged, you reacted, and you ruined my self- confidence. You also caused both children upset and pain.

    1. Man alive! Where to even begin…

      No.1 – I hope you feel better for writing it down and sending it out there. I always find it cathartic.

      No.2 – parenting ANY child is fucking hard work. Add to that difficulties you or your children may have quadruples that difficulty level.

      No. 3 – you will never change that man’s mind or attitude. He doesn’t know you or your struggles. You do. Holding onto anger is like drinking poison in the hope it will kill your enemies. I have had a few of these occasions (nothing as extreme as yours) where I have felt physical pain from the anger/upset/hurt and the injustice of the situation. But I have to let it go otherwise I’m not present in the moment any more. I’m in my head reliving it over and over again.

      No. 4 – kids push your buttons. Big time. I have called my son’s key worker before because I feared what I might do to my son if he hit me or my daughter once more. I have to regularly shut myself away in a room just to refocus and calm myself the fuck down because I have been pushed to my limit. It happens. I’m human. I’m not super human.

      I hope you have someone who you can talk to when it all gets to much. I’m always here if you need to talk.

  7. I do wonder sometimes about older generations – have they forgotten what it’s like to be dealing with small children. I’m so glad another mother gave you that fist-bump of a smile. They do mean so much when you’re feeling alone don’t they?

  8. I absolutely loved reading this and well done you for asking if you could swap seats, rather than abort. There’s absolutely no harm in asking and sometimes we all need to be reminded that other people’s needs are more important than our own… That couple may not have come across a child with autism before and they certainly didn’t know your gorgeous boy to know how important it was to him. Hopefully they’ll know for next time and will offer to move for someone else’s child! I will also remember to smile – thank you so much for writing this x

  9. I’ve been in situations like this with both my boys…it’s easier now they are older but I still have issues in public areas as neither of them have filters….they can talk quite loudly and get very aggressive with each other…..they also talk about/do inappropriate things without thought….I’ve been that parent just wishing the ground would swallow me up…..I shrug it off now…..others know no different I am not up for telling them my kids have aspergers because some people just don’t have a clue and think I’m making excuses…

  10. A simple kindness from a total stranger when life with an autistic child can be so, so hard (speaks from experience; son now 14 with ASD) can bring me to tears. That lady probably has no idea how much you needed that smile xx

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