I bumped into Tyrone this morning in Cornmarket. Tyrone is a couple of years older than LB and is member of My Life My Choice. He was going to catch the no. 6 bus to Wolvercote to the day centre (that used to be near Sainsburys in Cowley).

“What do you do at the day centre, Tyrone?”
“Snooker. Play on the Wii if it’s out. Or just chill.”
“I can remember taking LB to Parasol there.”
“Yeah. I used to go to Parasol but I gave it up because I got too old. LB would be too old to go to Parasol now.”
“Yeah.”

We stood at the traffic lights by Debenhams. My bus was waiting. After vague indecision I sort of coaxed Tyrone across the road alongside me despite the red light.

“Sorry Tyrone, I always tell my kids they gotta wait for the green man…” I said once on the safe side.

“Don’t worry,” replied Tyrone. “I do that if my bus is there.”

During hours spent outside, or awake at night, I’ve been listening to music. Trying to find music that fits. Ironically, in the early days of LB’s ‘diagnosis’, when he was a just a pup, Faure’s Requiem was the soundtrack to my sadness.  This shifted substantially over time and I can no longer listen to it. It didn’t fit. I was wrong. So much was wrong. LB wasn’t. And we certainly weren’t mourning him. Then*.

The weather’s been so unusual it’s created an almost film-like backdrop to our devastation. Consistently baking sunshine transforming mundane suburbia into a different world. I remark on this remarkable summer constantly. To pretty much everyone I talk to. It’s important that the sun has shone so unusually since LB died. It’s a summer that will be remembered. And the sunshine theme, with the ‘do’ soundtrack of summer songs, the late evenings sitting outside, the sunflowers, both shop bought and planted in our tatty garden, has a positive feel to it.

The day of the ‘do’.

So. Where am I at with the sounds? Anthony and the Johnsons were a stalwart companion for the first couple of weeks. Capturing the sadness exquisitely. But then they became a tiny bit annoying. And irrelevant. I listen to ‘Toast‘ by Tori Amos. Written in memory of her brother who died. And ‘Coral Room‘ by Kate Bush. About the loss of a mother. But ‘This Summer’ is creeping in as an unexpected frontrunner. A song I used to listen to on my commute home from Royal Holloway where I led five seminars every Friday on a contemporary social theory module. A regularly fraught experience of scrabbling to understand and make sense of the favourite theorists of the course leader (a white male-centric bunch) probably inches ahead of the students.

I’d sit on the train from Reading to Oxford, early evening, frazzled by the full on intensity of the day and the speed reading that built up to it. And I’d listen to this song. It was sad, calming and peaceful. A kind of vicarious insight into loss experienced by others. Always others.

Until a moment, a split second, one sunny early July morning, when I became ‘one of the broken hearted’.  Without warning.

Gearing up for the inevitable/seemingly obligatory ‘x weeks ago…’ countdown. The screaming ‘If only…’ The relentless, grinding background loop of ‘Wha?? Eh???? LB??? How could this happen?..’

I feel an intense sadness that he had a visit to the Oxford Bus Company planned that day. A trip that Sue (Charlie’s Angel, pallbearer, mermaid facilitator, teaching assistant extraordinaire) had magicked months earlier. In the same way she managed to get lorry drivers/AA mechanics and the like to give LB a tour of their trucks/vans/equipment on the roadside. With accompanying photos. One of life’s understated, gold plated doers.

The Oxford Bus Company. An outing that never happened because we lazed around. Careless with the time we had. Time that was eaten up with nonsense (and ultimately pointless) meetings/interactions about (non) care, (non) support, non anything. With a dose of full time work and broader family life. We lost sight of what was important to LB. And then we lost the opportunity to make this happen.

I feel anger about the way in which families/carers are typically pitched into this space of opposition to any sniff of support and services because these services are so rationed/difficult to access/inappropriate/pointless/inaccessible or any one of a hundred other reasons. This becomes magnified once dudes turn 18 and family love, understanding, knowledge and interactive expertise is sidelined. This space is all consuming, exhausting and unnecessary.

So much energy, effort, emotion goes into ultimately nothing. A wearing dancing, prancing, phoney two step with services that hold the power, the key, the password, potential future and ever present sword of budget cuts. Chuck the nonsense of ‘choice’ into this mix and things become impossible to make any sense of. I don’t know of a single parent who is happy with (and no longer a major actor in, albeit not always a welcomed one from the perspective of ‘service’ providers) the life of their adult learning disabled dude. And I know quite a few.

How can this be? Such an enormous gap between policy and practice. The policy speak talking the talk of choice, autonomy, independence, leading in practice to the sidelining or dismissal of parental expertise and love. And parents/carers walking the walk. Beavering away in the background desperately trying to facilitate, fight for, negotiate and sustain a half decent existence for their dudes.

This is the 21st century? We have enough research, reports and recommendations around this area to fashion a papier mache replica of the Houses of Parliament. How can things still be so bad?

Nine weeks ago today, around this time, our beautiful, exceptional dude got into the bath. Probably up bright and breezy because of his long awaited trip. And there it goes again.

How could this happen?