Carly on parent carers

28th July 2020 • Emma Cooper

As an autistic mum, feelings take me about a year to process. In real time, I may come across preoccupied, restless or simply aloof to the bigger matters at hand. 

When the penny drops as to what those presentations of my behaviour means, it’s crystal clear why such reactions existed and, right now, it’s a confusing transition towards empty nest syndrome. 

Don’t get me wrong, my youngest still needs much support 24/7 with home education and care. Which, I suppose, made me shun the idea I was experiencing a grief that all parents feel when their children, literally in a blink of an eye, transform from teenagers to adult women. For parent carers, however, who have been warned year after year that independence should not be an expected long-term goal, it slaps you in the face when it happens. Not because it’s hurtful or sad; it’s joyous and pride ridden. It’s just unexpected.

Transition as a parent

We speak so keenly about the transitions for autistic children from primary to secondary school, from college to University, University to employment. Yet we seldom discuss the big life transitions for autistic adults. 

Parenting children with a diagnosis is much unlike any other parenting. Project management is designed to be a marathon of batons and relays, not a sprint to the finishing line. Participation is in it for success day by day, 24 hours by 24 hours . 

But those 24 hours turn into a week, a month, a year and then a decade or two without even coming up for breath.

Well-meaning professionals let you know how to limit your expectations; and we in turn limit our expectations of life and don blinkers to focus solely on the here and now. Because of this, no-one prepares you for the empty nest – and how that will feel.

For those reading at home who still feel saturated with responsibility, please know that I still have those feelings and duties too. My youngest is only approaching teen years. I’m still home educating and juggling being the sole bread winner and carer not entirely living the Bridget Jones single woman lifestyle yet. 

Reflecting

I am at the odd stage whereby one child (I can’t believe I still insist on saying child ) is 22; the middle daughter is now starting university and spending her time with her long-term boyfriend (who is an absolute dream, I’m so lucky she chose well!). Yet I am experiencing empty nest syndrome mixed with the dynamic of looking at my youngest with this new found knowledge of what comes next, and what comes so fast – without me realising; now there’s time to think about myself.

This should be a relief. I’ve often imagined, just like so many younger mums do, the future me as a still 30 something with my child raising days mostly completed.

As a teen mum I had imagined I might be a glamourous woman in a suit with a sports car, a shiny watch and high heels. 

The reality is that I’m a woman who prefers a train ride with a good book or a notepad, a dog walk over a drive, jeans, t-shirts and wellies as opposed to a suit and high heels and I try to count the day in happy memories rather than minutes.

I tweeted about this whilst writing and the BBC award winning writer (and awesome autistic woman!) Alex Clarke replied in solidarity saying it’s like ‘the cake we promised to eat later.’ Alex is so eloquently right and as we were both teen mums, her tweet really resonated with me. However with age, taste buds change and now I have less desire for the cake which feels fleeting and bad for me. Now the savoury seems more appealing. I see my friends of the same age only just starting their families or finding Mr Right to marry and be a dad to their children.

I’m 38 and when I decide to date again I’ll be looking for the right man to not only be by my side from here on in but also be the grandfather to my daughter’s children, not our own children.

All the emotions

I’ve always been one step behind or one step ahead; never perfectly on time. It feels alien to hear women the same age as me discuss putting a deposit down on a nursery place when I’m selling up the childhood home to help my kids put down a deposit on their own house. 

I thought this moment in time would be a relief. Yes, it’s a joy and a privilege but there is also an element of grief. 

Worst of all, knowing so many women personally and professionally that have lost their children to illness (mental health or otherwise), the stigma to talk about this feels so entirely selfish. I know how lucky we all are to have this new chapter ahead that and that goes without saying. 

But nobody told us. Everything we were told was to prepare for lifelong caring. Nobody told us that the determination and care might have this result. The empty nest was never in the plan; it’s a beautiful surprise but a surprise nonetheless. 

Going back to my Twitter exchange with Alex Clarke, she said ‘it’s like the Hokey Cokey,’ and, again, she was right. After all, if you put your whole self in you have to learn to somehow, one day, put your whole self out. 

Carly x