When we first started on this journey of an autism diagnosis I was lonely. So lonely my insides hurt. I burned with longing for a friendship group with whom I had something (anything) in common. As a person with a history of depression and anxiety, loneliness has always been my biggest fear. Nothing could be worse. So following the horrendous experience that was kiddos two year old check with the health visitor (remind me to tell you about it one day), the loneliness started to set in. I felt like the only person in the entire world. I was the only person going through this.I can still remember being sat in my hallway after a particularly bad meltdown from kiddo. I sank to my knees, my shoulders weighed down with worry, fear, and yes, crippling loneliness. I only knew one person who had a child with additional needs. Her son had Down syndrome and she had had a particularly hard time. If you’re reading this A, you will never know just how much of a hero you are to me with how you embrace life. Never change. Anyway, I sent her a message. And that message completely changed my life.
She added me to an online support group, and my whole life completely warped into something I could never have imagined. It was like I had entered this entirely different dimension, one I never had any knowledge of. An underground community of parents just like me. All looking for support, solace and a community of people who just got “it”.
Since that day I’ve come to realise that I’m far from alone. In fact, I couldn’t have more friends today if I tried. I’ve now got the best social circle I’ve ever had in my life. My moment of complete isolation, horrendous loneliness and total desperation had led me into a world of warm loving people, with the robust emotional strength of an army.
But why had I never known about their existence? I had been walking amongst these people for years and I never knew. I never knew the weight they carried with them, the strain on their hearts and souls, their wish to be just like me as I walked past with my Cath Kidston bag and take away latte. They knew nothing of my own struggles at the time of course, but I guarantee they would have walked passed me and longed to be in my shoes. How do I know this? Because I can still be guilty of it myself. I can’t help it. I see people walking along and they just look like they have life under control. They’re heading where they want to go. I wish I still had that level of control. But the truth is I have no clue, no inkling of the challenges they face. And that’s how I like it. Because surely someone somewhere must have life all figured out? I’ll pretend they have for now anyway.
Before I found my support groups I would walk along the street and feel as though the whole world had life sussed. I shrank into myself and tried to give off the same successful glow. Did it work? Who knows. Although since writing this blog many have said that they never knew just how many stresses and strains we faced in our everyday lives. Maybe my fake persona worked after all.
Now I realise that parents with children who have additional needs just weave their way through life. Dodging people as they walk, doing the school run to places many people don’t even know exist. It’s a bit like that scene in The Incredibles where they ask where all the super heros have gone since the public banished them from helping. “They are living among us. Ordinary citizens”.
And that’s what these parents are. Super heros living amongst a community who are blissfully unaware. How do you join them? You become one. Where do you find them? They will find you. When will you find them? At your darkest hour they will seek you out. They will offer comfort and a shoulder to cry on, never letting you give up hope.
I met one mum who has become the most supportive of friends in a hospital waiting room once. Kiddo was on form, terrified of the echoey corridors and bright lights. She left her number in his buggy for me to find. That kindness can only have come from a mum who once felt that lonely too. They will find you.
If you’re reading this and wishing you had found your parent carer tribe, get in touch, maybe I can help you. To all my amazing, special and supportive friends. I would never have survived this ride without you.
Thanks for reading,
4 thoughts on “The underground world of parent carers…”
Lovely and inspiring x
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I desperately need a tribe!
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Are you in the uk?