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October 24, 2016

Last Tuesday night, an employee of Network Rail, whilst working on the new Elizabeth Line at West Drayton station, drilled through the main communication cable for this part of the borough. Immediately, Cowley, West Drayton & Uxbridge fell into a communications void. No phone signals, no internet connections for six days. And counting. My line was reconnected at the flat this afternoon but Steven’s house and other parts of Cowley are still silent. We’ve become a town that doesn’t know if it’s coming or going. Argos hasn’t been able to open for six days. Tesco let me have a single onion for free because they couldn’t weigh it. I waited in a cab for 10 minutes whilst they tried to work out the cost of my fare manually. We’ve had to relearn things we stopped doing 20 years ago.

As expected these days, Network Rail’s statement said more about its reputation management & fear of litigation than reassuring the 15000 homes and businesses incommunicado. “The cable wasn’t featured in our thorough survey of the area”. How could a survey miss the main cable? As we have become reliant on the internet, so we can rely on any company up shit Creek to issue a ” Not my fault guv” statement.

So, what’s a man to do when he can neither tweet, blog or wrestle with an online jigsaw? I filled my time with updating my list of my 500 favourite singles of all time and I did a spring clean of all my Microsoft Word folders. The former opens up all sorts of possibilities for me. I can explain to fellow passengers on the train why Savage Garden’s “Affirmation” has risen from position 137 to 127 since I last compiled my chart. And if I’m ever invited to speak at a tribute to Fats Domino, I can genuinely say that Blueberry Hill has inched up my list to number 61.

The latter activity of sorting out my word folders was depressing and reassuring at the same time. I found all the letters, reports, logs, court statements from 2010. Endless pages of meaningless drivel. 34 emails devoted to risk assessing Steven on a home visit. Volumes of lies. Threatening letters of withdrawing all the regular support team. Nothing affirming in Hillingdon’s savage garden. Reading my replies and letters made me cry. I was always so accommodating. I was relentlessly polite. I was reminded how terrified I was.

But all that bollocky nonsense is in the past. And risk management plans, one page profiles, co-production meetings & community activity logs are just ghosts. As far removed from Steven’s normal life as it is possible to be.

In the midst of all this, Steven’s honeymoon period in the new house ended with seven days of continuous meltdowns. The worst ones in years. Screaming. Hitting his head. Clawing at his face. He was in agony. Talking to him was impossible – he couldn’t hear or process anything. And then on Thursday evening, as suddenly as the meltdowns appeared, they stopped. “Dad. Rub my head and make it better”. So I sat for two hours, gently stroking Steven’s forehead, whispering reassuring words and he’s been okay since.

More than okay. Yesterday, one of those ” small places” things happened that really lift the soul. The support worker baked a cake, 12 inches by 12 inches. I suggested he and Steven pop half of it over to Uncle Wayne. Off they went and they returned 15 minutes later with Steven grinning from ear to ear. He’s seen Uncle Wayne, Auntie Jayne, Cousin Jodie and honorary nephew Henry.

Steven has never really done “just popping in” before. Anywhere. We don’t tend to get invited to places. So we don’t just turn up. I’ve always felt that an intense period of meltdowns usually is the signal of a major new phase in Steven’s development. Something big is about to happen. I’m not going to speculate what that might be. It’s not my place. Steven doesn’t need anyone to try and engineer his life phases.

But whatever it is, I hope it includes more popping in to places.

I like those kind of connections.


From → Social Care

  1. In every storm theres a rainbow x

  2. This is extremely exciting. Leonie (my daughter) is a different kettle of fish to Steven but she does get these similar break through points when something new occurs for the first time sponanteoulsy. Hopefully consolidation will happen then repetition and thus new pathways are created and a developmental epiphany transpires. For us parents with disabled children when the best that we were told we could ever hope for would be “a smile” it is incredible when new learning occurs. I feel that this change in Steven must have been as a result of all your efforts and the new home you have made for him so close to all his family. Fantastic! :)).

  3. Frannie permalink

    Along with our amazing staff team their knowing understanding and flexibility as a family popping into relatives and close friends who understand is a lifesaver /lifeline even in periods of high anxiety,popping out to do something always brings the chance of meeting someone who will speak to our son even if it’s just hello, a fix of feel good factor being involved in local community, seeing pretty girls, girls with dyed hair,pointing out horrible coloured cars a wave from the local bus driver, having Current favourite CD on in the car, seeing cousins and their friends old school friends and staff .The importance of being visible and active at whatever level you can in your local community is vital even at some times of meltdown for us, Key in wellbeing and a quality of life we are all entitled to.

  4. emily permalink

    Small battles with big victories. Thanks for making me smile this morning. Pop over to Cyprus anytime.

  5. I like this post very much. It`s one of the best.

  6. loved reading this . New home, family, cake and reassurance . So pleased for Steven.

    Horrible email today confirming X had been discharged from Ward Round but now re- admitted and meeting with X for a moving forward plan. In reality X is housebound and the ward is virtual . Hands on/vocal reassurance isn’t dispensed during the allocated home visit and the moving forward plan hasn’t moved forward in 14 months and X hasn’t left the sitting room either. Well done for leaving the nonsense and engineering behind forever.

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