We were being way too ambitious. It was never going to happen. But in that mouse-click moment at Ticketmaster, we allowed ourselves the twinge of excitement that it might just be possible to achieve a night out together. It would be our first ‘date’ in over 5½ years. That’s how old our son is. And the last time my husband and I went out anywhere as a couple after dark (anywhere beyond the back garden, that is) was the night we partied hard on the labour ward where the drugs flowed freely ‘on tap’ until about noon the next day and I only fell unconscious once.
Ten days ago I attended a SEND (Special Educational Needs and Disabilities) Good Inclusive Practice conference as a parent-delegate. The meeting was chaired by a representative from the Fusion Teaching School Alliance, a senior research fellow in Disability Studies and a post-doctorate reader in Education, Childhood and Inclusion. The speakers included academics, head teachers, SENCos (special educational needs co-ordinators) and parents of children with additional needs. Two parent representatives from the Parent Forum described very eloquently and movingly, to the professionals in the room, the isolation that goes hand in hand with parenting such wonderful and bewilderingly complex children. They displayed a giant, intricate spider’s web, a striking visual representation of how it feels for the family who are at the centre of professional agencies and bodies, across many governmental departments (none of whom actually speak to each other), prodding and poking and overstepping all normal social boundaries of expectation and privacy. Parents learn very quickly that it is up to them to clerically co-ordinate this deluge of intrusion. Mental and emotional time outs can be very difficult to schedule. And babysitters are even scarcer.
Crossing the car park, I was reflecting on our own little unit’s inevitable social and psychological detachment from the friends and family who love and care about us – those who genuinely try to understand and accommodate the structure and dynamics of our lives (however utterly incomprehensible they actually are to anyone on the outside looking in) and those who really don’t – when the text came through:
I’m really, really sorry but very reluctantly I’m having to acknowledge that I’m not going to be able to cope with Saturday. My energy levels and stamina are frustratingly low. I am so sorry to let you down. xx
I shuttered my eyes in an attempt to contain the stress and strain of that very isolation, a description of which, not half an hour ago, was met with intakes of breath and whispers of “Oh my God, I had no idea…” Aloneness is something I’m entirely comfortable with but I don’t think I’ve ever felt as isolated as I did in that moment. It wasn’t her fault of course. She couldn’t be blamed for my feelings anymore than she could be blamed for cancelling on us. When she agreed several months ago to try a slot of bedtime babysitting for us she had no idea that the opthalmologist would suggest draining the vitreous humor from her eye and replacing it with a gas bubble to plug up the macula.
I called Dave; he’d had the same text. He’d bought the tickets to encourage me to step outside of my-mum-self momentarily and point blank refused to offer my ticket to any one of his mates and go without me. I don’t have any close friends of my own. Certainly no one I’d feel comfortable enough to go to a Weller gig with. Saturday came and, “Sod it!” I decided, I was going to go anyway.
It was also only the third time I’d gone out alone in the evening, for any length of time extending beyond an hour’s tap dance lesson or hula hooping class, in the same 5½ years. And the last time I was anywhere other than home at midnight I found myself being evacuated into the village square through a fog of chemical canister smoke by the North Yorkshire Moors Fire and Rescue Service.
“One for One Direction?” enquired the ticket steward with an unnervingly straight face. I claimed a pine tree on an incline and demarcated the limits of my personal space with a picnic blanket. I quite naturally gave out an “I’m just here for the music, please don’t speak to me,” vibe, and wouldn’t have looked entirely out of place at a Cousin Itt convention.
I got horizontal and wondered if Mr Weller would make it out on stage before it was already past my bedtime. Boy is usually in bed by about 9 o’ clock on a weekend and he’s just too anxious to go alone. Like a lot of kids his age, he sometimes finds it difficult to distinguish reality from his imagination, especially on the cusp of sleep. His autism, on occasion, carries those thoughts and fears to a whole other level of hallucinations. Fevers can send him delirious. He needs company to settle and comfort to keep the “silly pictures” away which, otherwise, terrify him in low light.
The cool pop was refreshing enough but I found myself really wishing I’d brought a flask of tea. I can’t drink alcohol anymore because I always need my wits about me. Seeing out my thirties at a concert in a clearing in a forest, where most of the middle aged ticket holders had brought deck chairs, scarves and cool boxes, was a million light years away from the sensory saturating grunge gigs that touted-in my twenties. I wonder how much greyer I’ll be when I hit my fifties and whether the members of some of the bands I saw live as a teenager will even still be alive. Sh!t.
“Along winding streets we walked hand in hand
How I long for that sharp wind to take my breath away again
I’d run my fingers through your hair
Hair like a wheat field I’d run through. That I’d run through
And I miss you so…
Baby, I’m afraid to say why, oh I miss you so.”
Ever the optimist, Dave’s bought more tickets. For Diversity in December. That gives us six months to come up with plans A and B, prepare all individuals concerned accordingly and factor in some ‘start-small’ trial runs between now and then. That will be six years. Dave and I see each other every day, we know each other inside out and even manage to secure some alone time together in the daylight when boy is at school and Dave takes time off work. We have to plan conversation time ahead of schedule; spontaneity of any kind is completely out of the question. On those days when boy’s presentation of control approaches the line of PDA (Pathological Demand Avoidance syndrome) we have to resort to emailing each other across the room to avoid a scene.
Sometimes we really miss each other.
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