Ray of light

Sometimes things have felt so dark and bleak recently that I've wondered if I'll ever feel happy again. I feel dark and desperate, cold, lonely, isolated and without hope. I feel angry - angry that this is my path, angry that I can't "make it better", angry that the very system that is meant to help us and support us is failing us and angry that I'm made to fight so hard for such minor changes. The system is stacked against the most vulnerable - how can it be fair that those most in need have to shout loudest? Why shouldn't my son be given the opportunities that are denied him through us receiving insufficient respite and hence feeling too exhausted to contemplate outings and visits that require immeasurable amounts of energy and planning to set up? Why should I live in a house that is slowly being literally torn apart with no opportunity to spend time repairing and replacing? Easter is a time when many families spend the dour day bank holiday getting on with some DIY. Or planning a kitchen or extension. We spend our time picking up the detritus that James leaves behind him, akin to Hansel and Gretel following the trail of stones. Any respite we do receive over this period is tinged with feelings of guilt, after all as social services are constantly telling us, the Carers all need a break too and "we" have to look after them. But who looks after me? Who helps us when we're physically incapable any more? No one. It can feel as though no one wants to listen to those who are experiencing the intensity of looking after James first hand.

Today there was a chink of light. A glimmer of hope. The promise of more to come. Perhaps we will see daylight again. 2 years ago I was lucky enough to be referred to one of a handful of practitioners offering a relatively new therapy for children on the autistic spectrum. Today she came to visit us at home, to catch up with James' progress and offer us assistance in any way she can. After explaining where we are with social services and the LEA (and after picking her jaw from the floor!) she has offered to write a letter outlining her findings of her assessment over the last 18 months. It will be a candid letter, emphasising that James' impairments are very severe and that he has extremely challenging behaviour (both of which social services deny) but also outlining the fact that with the appropriate support and input he has a lot of unfulfilled potential and he needs the right environment in which to access this in order to develop lifelong skills. This could be the letter that makes the difference between a full tribunal with battles from both sides and at least some concessions from the LEA that James' current school simply can't meet his needs. I can only hope...

Stalemate

Since my last post, we've had a very interesting meeting with social devices. Unfortunately it was clear that the CWDS are stuck firmly in their belief that we are failing James, an accusation I find insulting, upsetting and unfounded. Their claim that we fail to integrate James into our family couldn't be further from the truth, in fact, every single aspect of our life revolves around James - what time we get up, what food we eat, where we can (and can't) visit, which friends can visit and when, what car we drive, when we wash a load of clothes... Whether James is at home or not, every decision I make (including the timing of loo visits!) is dictated by him. When asked to back up their accusation they used a very poor example that just shows how they have failed to understand James and his level of disability and the impact it has on the whole family. The last time a social worker visited our house it was our carer's birthday. Bea decided to make a card for her and wrote in the card and signed it herself. Apparently when I was asked whether James would write his name I replied that that wasn't appropriate as he couldn't hold a pencil let alone sign his name. Apparently this shows how we don't integrate him into our lives. I sat wide mouthed and stunned. They would rather I had forced him to write in the card, hand over hand against his will? I didn't make Edith sign the card and her functional level is around the same as his...
Other parts of the discussion were equally distressing. Their minutes from our last meeting are inaccurate and full of omissions, so I'm glad we took our own advocate to take notes. She happens to know James very well so could back us up on our views about James. There was some recognition that we struggle to care for James, two younger children and ourselves but no offer of further help or assistance. It has been over three months since I requested a review of James' care package and nothing has changed. We're locked in a stalemate with the very people who are supposed to be helping us.
The time has come to get tough. I'm not going to throw the game, however much I'd like to, but I am going to get the big players involved. Local news. Local government. London mayor. Local MP. I will not be bullied. I will fight tooth and nail for my son and myself. I only wish I was not dealing with a disinterested government and a hidden disability...