The jigsaw we didn’t expect has no instructions and never ends 🧩

When we finally had the joy of becoming parents, we were so thrilled and relieved that the years of heartache were over, we didn’t care about whatever the future might toss our way.

The circle of 4 we wanted to create was finally whole, with 2 loved-up parents, a dog and the girl we’d we’d dreamed of finally in our home, nothing could hold us back.

Until the jigsaw entered our lives.

Now, let’s be clear, kids are a gift that we all treasure – that’s a given. And we all want the fruit of our loins to grow up with the best possible future, to be the best version of themselves and to have the happiest, most fulfilling life achievable. Again, all of this is a given.

But when you’ve struggled to conceive or maintain a pregnancy, when you’ve got to a point where you’re just flogging a dead horse and the fun of sex is lost in desperation to see that all-important pink line…actually getting to full-term and bringing your child kicking and screaming into the world is ALL that matters. You lose sight of the 18 plus years of financial strain approaching, the education rules and regulations you’re yet to understand, and family disagreements over the childs clothes and nursery decor that are all in your future. You certainly don’t think about developmental or health related problems. The stress of being pregnant is over, now you get to be a family and it’s incredibly exciting. You want to enjoy it, and so you should.

As with all good news, eventually the rainbow sheen wears off, the rose tinted glasses shatter and you find yourself in the usual inevitable shitstorm. But before that happens, you believe in the image of a future bliss that I think we all build in our minds from the second a ‘family’ ends up on our wish list.

That’s where we were for the first 3 years. Despite my personal mental illnesses and struggles, we were lucky that just us two (and the dog) became the 3 (plus dog) we’d desperately desired. We’d been through hell to try and make a family, we wanted nothing more than to enjoy our lives as the complete circle.

Slowly, we loved her, cuddled her and raised her to become her own version of a happy, inquisitive, creative, loving human.

I had no idea of developmental milestones prior to our daughter, and we had a child with a growing personality that was clear at around age 3. I thought that was ok. I realise other kids develop their traits faster and some are slower, so I’m not mentioning her age to make other parents feel like we are in a weird development race. It’s just for referencing our story.

We had no experience of other children in our lives either (I’m an only child, my partner was until his late teens, neither of us have children with other partners), so developmentally, we basically just rolled with the advice of the nurses and doctors who visited. Up to age 3, we were told everything was great. Happy, healthy, and doing fine.

At nursery things suddenly changed and I got the first glimpse of the puzzle piece. Kids in her class were different, they were ‘ahead’ of her, and staff at the nursery (who were excellent) starting using words like ‘delay’, ‘developmental’, ‘language’, ‘disorder’, and the word I’d dreaded…’autistic’.

There isn’t a problem on the planet that a mother doesn’t blame herself for. Whether it’s related to herself, her child, her family or her long lost pen pals, it’s entirely her fault. I don’t know if it’s a connection in the female brain that forms during gestation, an innate understanding that she can and should prevent all BADNESS from happening, and when she doesn’t she should be flogged, but I felt it and I know other mums do too. My carefree days of not giving a shit we’re over at around 30 weeks…I was a mum and I was guilty.

All mums are guilty, aren’t we?

So when the word ‘autism’ started getting thrown around I immediately started trying to work out why, what I did wrong and how I fix it. These are Darwinian reactions for a woman, passed down by protective cave-mothers before us who were keeping their kids safe.

I realise now that having a daughter on the spectrum isn’t something I could have changed, it’s not something I did wrong and it’s not something I can fix.

I also realise now that labelling it negatively or as a ‘problem’ (as I have above, deliberately, to prove this point, and as many professionals have deliberately and wrongly said too) is completely incorrect. ASD isn’t a bad or negative thing. It means someone doesn’t calculate daily life in a neuro-typical way, but that could be true of everyone.

They’re different, just as you and I are. Luckily, I get to see and understand our daughters differences in a unique way and with the ability to research help and ideas, and that’s something I’m actually grateful for.

But when I put our parental emotions aside and look at the journey autism has taken us on so far, it’s been a rocky road…and I know it has plenty more in store. She’s only 5 and has so much to process, understand, learn, see and do. Her ASD will mean it might happen in a unique way, but we have tools and ideas to prepare us for those moments, so it’s ok. With every nightmare or meltdown comes a lesson for us as parents and a bonding session for our family to build on.

It’s not all negative.

But you want examples, don’t you? 😆 I can feel it. OK, here’s the sort of stuff we’ve navigated so far. But before you read this, remember that every ASD and developmental journey is different.

  • Our daughter was unable to communicate in any way until she was nearly 5. No language at all, just the odd grunt and a lot of laughter and crying to learn from.
  • She gets happy, angry, sad and joyful over nothing at all. It’s a Jekyll and Hyde life at times.
  • Her love and laughter is infectious, and she can’t wait to learn through reading, stories and playtime, which all form part of our day, even after school.
  • She eats like a dinosaur, wanting more before she’s finished what’s already in front of her.
  • She’s the most caring 5 year old I know, already understanding that she has autism and mummy has a problem with her brain and her bones. She comes in the bedroom and wipes my tears on the days when I want the world to swallow me whole. I realise I’ll be judged for allowing her to see me sad, although we do shield her from most of it. But kids need a balanced view of the world. We all have struggles, and ours are in our heads. Despite our challenges, we all know we’re lucky.
  • We had to learn an adapted version of sign language called ‘Makaton’ to help us communicate with her, and we still use it today, despite her language having improved.
  • She attends a specialist education setting because of her ‘language and developmental delay’ (not my words) and has a group of wonderful friends in her class, all of whom see each other as individuals, not different. Exposing her to that group has been fantastic and made them all such wonderful, inclusive kids. It was the best decision we made.
  • She reacts to emotions in an extreme way, and often those reactions are shown but not felt. For example, she’ll laugh along with us, almost erratically, but have no idea why we’re laughing. She’ll sob for hours, but have no reason to be sad, and it’ll stop just as suddenly too.
  • Accessing help as a family so we can understand and support her has been nigh-on impossible, despite almost begging. It pisses me off every day and I’m sure will form part of a more angry post when her needs have finally been met. I want to understand her and her diagnosis better, but no one locally wants to give us the information. Thankfully charity websites and teachers have been helpful, and those are the places we’ve managed to find what we need so far.
  • Autism has effected her social communication and emotions the most, but I know other people with ASD who find different things a struggle. Learning, reading, maths, loud noises, large groups, large open spaces, confined spaces and difficulty understanding emotions have all been experiences for us and people we know (not just children). There are many, many more.

So, although on paper we have a child with ASD, what we actually have is a family living around ASD, in a similar way to me living around my personal mental and physical challenges. In fact, having mental illnesses myself has been weirdly beneficial. I understand our daughter and her needs in a different way. It’s a benefit you only get when you spend a lot of time wondering, worrying and sad. This is one of very few times I get to be grateful to my mental illnesses, because they’ve helped me empathise and understand our daughter better.

Autism has given us a puzzle, but with no other kids or experiences to compare with, it’s a puzzle we’d have had to translate somehow whatever happened. She’s a joy to be around, and although it can be tough, I bring my own differences, so does my partner and even the dog does too.

Surely we’re all puzzles, not just those with ASD or other developmental, non neuro-typical diagnosis?

So despite spending months blaming myself for the problem, wondering what I’d done wrong and why something so terrible happened to our kid, the words ‘blame’, ‘wrong’ and ‘terrible’ we’re all used incorrectly, and should never have been associated with the news we got back in nursery.

When we finally got the official diagnosis early this year another piece of the puzzle slotted in, but we already knew we’d be working on it infinitely. We’ll be finding the pieces and putting them in place for the rest of our lives, as we all do.

I often wonder if I’m also on the spectrum. I’ll almost certainly do the tests to find out if my brain ever becomes balanced again. I have no idea how I’ll feel about it, but I’ll be proud to have an added strand of connection and understanding with my fantastic daughter.

For any parent at their wits end and looking for a laugh, I strongly recommend the ‘Parenting Hell’ podcast presented by the comedians Josh Widdecombe and Rob Beckett. It’s the take on being a child’s labourer that we all need, doubled up with some honesty, laughs, and plenty of swearing. It’s reliably telling us we’re all trying (and often failing) to do everything we can as parents. They have the ability to talk openly as dads about their day-to-day parenting ‘hell’, without the guilt the rest of us feel…and it makes you smile and the carefree-ness of it all rubs off on you.

I’m sure they’d say, like me, that the key is that ‘we’re doing our best’. The final phrase that’s also a given.

Support

As I mentioned earlier, we’ve had real problems finding local support, but there are plenty of resources online that will help you understand ASD and offer you additional support and signposting if you need it.

The National Autistic Society – This is the most obvious place to start and here in the UK, it’s one of the best online resources we’ve found. They also offer local support groups within the community and an online peer support community too. You’ll find answers or ideas for most challenges here as well as a helpline to call and signposting to other useful resources.

Ambitious About Autism – another charity with incredible resources online, however they are centered around giving children and young people with ASD the opportunity to realise their full potential. In 2021 they launched a new three-year strategy to help create a future where every autistic child and young person can be themselves and realise their ambitions. Their website also has pages aimed at children and young people, offering them direct help and support too.

An online search should provide you with groups within your community that you can connect with locally. I would recommend doing this, as having other parents to talk to about your experiences (including the difficult stuff) goes a long way towards making you feel less isolated and alone with it.

It’s a struggle for all of us at times, but help is available if you need it.

The picture.

The real, original Bluey and his family

Here, my friends, we have a picture of our family depicted in the style of one of my daughters current favourite cartoons (and a ‘Parenting Hell’ favourite too) – Bluey.

For anyone who’s unfamiliar I’ve included a screenshot of the original main character – Bluey himself. It’s an Australian cartoon available on the usual channels and it’s widely regarded as a parents choice because it’s easily watchable without having to bear the usual Peppa Pig level of anger and frustration.

If you haven’t already, give Bluey a try.

Published by stephc2021

Hi! I'm Steph, an amateur writer and illustrator specialising in Mental Health and being a self-confessed Spoonie. My website is home to any successful fiction I create, with stories that have won so far covering difficult subjects such as baby loss and mental health in grief as well as some funny and heart-warming tales when I get the inspiration. Every drawing and picture on my website was created by me. I spend a lot of time coming up with illustrations to accompany all of my posts and pages. I try to create original content across all of my channels, whether I'm writing about my own fiction or just generally musing on mental health or my own issues. I want to be part of the change because I believe the understanding of MH in the UK is getting better, but has a very long way to go. By being honest about my own struggles and symptoms I think others will relate and hopefully it will encourage them to talk to someone and get the help and support they need. Long term my goal is to help children too, help them understand their own mental health and how to help with the mental health of those around them. I live in the UK with my partner, daughter and dog, I swear frequently and I adore a well made, traditional, gooey, chocolatey, delicious brownie.

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