Before I even write this, I feel the need to offer a disclaimer.
1. This is in no way a political post. None. Nada. Zip. So, if that’s your jam sandwich, you can go.
2. This is also in no way a reflection of the love I have for my child, my parenting, my support network or my life in general.
3. This is not a ‘dig’ at anyone else’s thoughts or opinions. They’re just mine. That’s it.
Given that I’ve had to address these issues, it might be an indication of how contentious or divisive this post may be. I don’t mean for it to be, but in the same breath that I defend my choices, someone else is defending theirs. Which is fine. Brilliant, in fact. We need to have discussion and debate and differing viewpoints.
I’ve seen a lot of written words lately about struggles. More specifically, a parent’s struggles versus their autistic child’s struggles. And even more specifically, how a parent’s struggles absolutely, positively, resolutely cannot be a match for those of a child or young adult with autism.
I suppose this is where I offer disclaimer number 4 and say, “I’m not proclaiming them to be.”
How can I? I don’t have autism. I have no idea what it’s like inside the mind and body of someone who does.
However, the metaphorical goal posts seem to have shifted again, and as parents, we are no longer allowed to highlight, voice, write or discuss our troubles or struggles relative to bringing up a child with autism. At least, that’s what it feels like. And the reason for this is “because our children have it harder”. Of course, they do. They are experiencing actual physical pain caused by senses – something that is as natural to us as breathing and so out of our control.
But, am I not allowed to struggle, too? Have I to sit and watch my child have a meltdown for hours, sometimes, and not have a single clue on how to console him, how to make it easier for him, how to distract his mind from his senses, and not feel burdened by that? That doesn’t mean I can’t recognise that he has it worse – and ironically that just adds to my already stressed and emotional state.
Let me ask you this. Have you ever been so hungry, you feel nauseous? Have you ever had to budget like hell with the last £10 in your bank 2 weeks before payday? Have you ever said, “I’m starving” or “I’m skint”?
If you did, I hope you concluded that with “…but it’s nothing compared to what children in third world countries who haven’t eaten in a month feel like” or “…but it’s nothing compared to that young gentleman who can’t afford a couple of quid for a coffee and now won’t be able to warm up his hands or his body whilst he sits on the wet pavement tonight”.
Granted, these are extreme opposites. Obviously. Very real and very prevalent, but extreme nonetheless and the reality is that we will never ever face the struggles of people who are unnecessarily living in these horrific circumstances. But does that mean that we’re not allowed to feel our struggles. Am I not allowed to say “oh, I’m starving” or “Ah, sorry I can’t make it, I’m skint this month”?
Of course, it doesn’t. People say these sorts of things all the time. It doesn’t mean you’re comparing yourself or your struggles or burdens. But one person’s struggles do not diminish your own.
If I say I struggle or find it hard to watch my child literally lose control of his body and emotions, it doesn’t mean I don’t appreciate that he is struggling more.
But I can still feel mine. I can still cry or feel helpless and angry and all those other negative emotions. And I won’t be made to feel guilty for doing so.
There’s this culture that’s become apparent that we are not allowed to complain about things for fear of offending others who have bigger problems to face. Let me tell you, if I was to uphold this trend, I would be right back where I was a year ago – masking my feelings, pretending everything is well, in the depths of depression and feeling like an absolute failure. No thanks.
I am very lucky to have been blessed with a happy, carefree child. He is funny, cheeky, beautiful as hell, affectionate and loving. He also has autism and also happens to be non-verbal. I would venture to say that Luca has 1 meltdown a month, maybe 2 – either way they are very few and far between. He transitions from activity to activity well, he doesn’t need to be prepared for outings in public, isn’t super sensitive to noise or crowds and doesn’t need a structured routine (although it does have its advantages). That said, our day to day life is very different from that of a “normal” family. And I use that term very, very loosely. And its grossly different from other families who have kids with autism – I know that, too.
But still, his autism is a burden at times. Not him, never him. His autism isn’t who he is. But there are things that are exponentially more difficult for us than if he were to not have autism. And that’s the comparison we all make, isn’t it? I see and hear it all the time – neurodiverse vs. neurotypical.
I once wrote a post on Instagram and I spoke about if I wished Luca didn’t have autism. I said that it was difficult to answer. On the one hand, I adore his quirks. They are beyond fascinating, I am borderline obsessed with how he finds interest in the most mundane things – literally the most mundane, boring things, i.e. the ceiling (which is just smooth and plain ole white). I love watching how he progresses knowing that I can’t take anything for granted. I love how much he needs me. I love how unaware he is of this shitty, judgmental world and I love how he is so unapologetically him.
However. Do I wish he could talk? Absolutely.
That doesn’t mean I’m not thankful for the communication methods we have worked hard to perfect, and it doesn’t mean I don’t know that there are other means of communication.
Do I wish he could play alongside his cousins, be involved in games like hide and seek and ‘tag’? Naturally.
Do I wish that I didn’t have to second guess every decision I’ve made in a day to try and find a reason for a meltdown? Doesn’t everyone?
Do I wish that I can take him for a haircut and not have him claw at the skin on his body until he leaves welts in his skin? Obviously.
And these difficulties are present in our lives due to autism. But if I had to lose the essence of Luca in order to be rid of these, the answer is a resounding NO. I can’t risk that.
But that doesn’t mean I’m not allowed to find this gig hard. It’s so, so hard – even when it’s easy. And that’s something you’ll never know unless you are raising a child with special needs. That isn’t an insult or a dismissal – it’s just fact. I’ve said it before, I have to parent very differently from a parent with a neurotypical child. I parent differently from my brother and my sister, from all my cousins, from my mum. That’s just how it is. There seems to be a difference though that if they voice their struggles over a difficult moment with their child, they don’t have to prefix it by saying, ‘and I know it’s worse for him but…”.
I started this blog as a way of writing down everything I couldn’t say. Everything I was too embarrassed or ashamed to say. I’ve become better and more accepting of the parenting journey I live, but I promised to always be honest when sharing. I would be doing myself, and many others, a disservice if I was to wax lyrical about the wonders of autism and never highlight the difficult parts.
There is a reason, as a parent, that you felt sadness and maybe even dread, about an autism diagnosis for your child. I’ve never met a single parent who was happy about it, who only saw the sunshine and roses and never thought about the black spots that were absolutely going to cloud their stories.
And maybe you’ve worked hard to prove that autism is good and wonderful. Maybe you handle your child’s meltdown with calm and ease and swiftness. Maybe you never complain or show the difficulties that your child faces because you want to focus on the positives.
Great. Fantastic, even.
But that’s not me. I struggle. My child struggles. And this is real.
Autism is a disorder. The very name suggests that there will be difficulties – no one is going into this blind. But if I only show the happy and colourful, how does that help anyone?
The good and the bad are allowed to co-exist. My struggles and Luca’s struggles are allowed to co-exist. They don’t cancel each other out. If I’m feeling sorry for myself, it doesn’t mean I don’t feel immense pain at what my child is going through.
But let me vent. My son has his safe space – me.
Let this be mine.