We always thought The Rose was ‘individual’ but that something, sometime soon would just click and then the onslaught of party invitations and handsome suitors would roll in.
But the heads -up that our ‘moon child’ may actually have something with a name – came unexpectedly from an astute teacher during a one to one parent’s evening. The Teacher was kind and bright and told me very gently of her suspicions. But she may as well have just shot me there and then, point blank, through the chest – it would have been far less of a shock.
Thinking back I can’t believe we were so naive; The S Club juniors concert where she watched aged six, motionless, with her hands in her ears and face blank; her ‘scribbling’ (I now know it to be ‘stimming’ but I HATE that word, with its dark ‘private’ overtones), her ‘socks at same height’ obsession; her ability to sniff out smells only otherwise noticed by the dog; her nappy wearing till she was five (OK so that doesn’t square with her smells thing, but you understand!)
How could we have known? We’d never been parents before and although The Rose was different to most of her peers, she wasn’t anything close to what I thought autism looked like. She was cuddly and sweet, OK she seldom caught our eye and she had the Man U team (and reserves) games, scores and personal lives nailed in every detail (The Dad was so proud – our typical son loves musicals!) but she didn’t seem obsessed with routine AND she was verbal and seemed social and we loved her difference – and that we didn’t have a ‘cookie cutter’ kid.
But as she grew, her rudeness in the form of anger and cutting remarks, lack of real engagement with us and her increasingly unhappy demeanour seemed more than just teenage blues. I felt sure her lack of friends was due to her temper and moods and that she was actively driving new friends away. I was increasingly intolerant of her insolent isolation, yet she kept on being her.
I could see her, sense her, she was there but I lost a bit more of her (and me) every day.
She was social in short spurts with my friends, but couldn’t keep up a conversation (I just figured that grown-ups probably held no interest for her adolescent self). She spurned the ovations from potential friends and I watched disappointedly as they flocked to her only to be subtly rejected or roundly ignored (and my blood boiled at her lack of regard for them). Yet she was often so lonely and angrily on the edge. And I didn’t sympathise – because I thought it was her choice, her doing.
She once told me when she was younger that she had a shadow that came into her heart and swamped the ‘good Rose’ and made the ‘bad Rose’ take over. We used to pretend to stamp on the bad shadow to kill it (we called it Denika!) but as she got older it stopped seeming like a game we played to exorcise the loneliness of a primary school playground and became far more onerous. The shadow grew bigger and blacker. She started to say she didn’t deserve to be loved.
It’s sickening to think back that I was so cavalier, so sure she’d get over it. But I naturally tend towards optimism, I think everything has a reason and that eventually everything WILL turn out OK. Besides, The Rose’s mood always passed in an instant; she always gathered herself quickly, put on a smile and said that she’d ‘start again’ tomorrow. And that was it – flip. Jumped from a puddle of despair onto a fluffy towel of optimism and hope – the change was so absolute, so real that although I rocked with the pace of veering off in another direction and was left drained and battered, I moved on too (because she did) believing (as she did) that tomorrow really would be different.
And that spirit, that resilience, that hope is what The Rose is all about – I think.
But how do I know? I often see the real her, the beautiful, happy, positive girl, with the shot-gun one-liner wit that leaves you stunned and smiling in awe – almost too kind for her own good and with lots of friends and admirers; but her Aspergers keeps standing in front of me, gets in the way of my sight of her. Looks me squarly (just left of) my eye. It mixes in with her – not completely absorbed but so complexly swirled it’s like intricate marbling and impossible to separate.
Having Autism does NOT make her happy, it makes her anxious, it makes her throw up and have constant tummy aches, it makes her lonely and – God help me, almost defines her. But it won’t.
I hate it and I can’t take it away. But this blog hopes to show you The Rose, not as a victim or ‘autistic’ but as a warm and funny person, someone you might be friends with. Not out of sympathy but out of recognition of the brilliant girl she is.
The Rose has Aspergers Syndrome. She is autistic. But she is The Rose and her personality is unique. And if I can make you see her too – we’re all laughing!
Oh Marilyn! I was going through your blogs in order after originally starting with the most recent, I decided to go to the first and move forward so I read this straight after the previous post, that made me laugh out loud. and you may not want this but you now have me welling up, a big lump of a man for goodness sake! Madam you write superbly, bless you, I yearn to write this beautifully,well done you.
What a wonderful writer you are x my daughter is in the process of being diagnosed with Aspergers and I can so relate to what you have written. I try daily to be patient and understanding and sometimes I succeed, sometimes I don’t. It’s very clear that you are doing everything you can do to understand your daughter and I think that’s the most anyone can do.
Thank you so much. I have been unable to write too much about The Rose recently. She is growing up and full of such shadows and light I am sometimes blinded. Your comment means a great deal, thank you and my biggest hug goes out to you as your diagnosis unfolds. Stay in touch. X