This time last year I honestly thought that things could never improve. My son was in the local authority's school for children with severe learning difficulties, in a class that was specifically designed to be tailored to the needs of autistic children yet his behaviour were showing no progress. Issues that had previously been dealt with reared their head again and became increasingly difficult to manage - for instance we couldn't cut his hair or nails, he was waking at around 0430 and not going back to sleep, his eating was becoming more faddy. Increasingly he was intolerant of other people around him, leaving the room the moment anyone else entered, refusing to sit at the table for any part of a meal, coming off the trampoline if his sisters tried to get on. He was disappearing further into his distant world and we felt more and more detached from him.
It is hard to really feel the love you know you have for someone when you are having to pin them down to change their third dirty nappy in an hour, or when they have pinched you or bitten you hard enough to draw blood. When you escape into another room for some respite from the constant screaming, just closing the door brings a sense of relief yet it is coupled with guilt that he's only screaming because you aren't providing him the sort of stimulation he needs. But there are only two of us, and two other children in our family and we have no support other than the limited amount social services will acknowledge we are "entitled" to. How on earth could we keep up the amount of energy needed to provide around the clock stimulation and support for James whilst keeping our family together?
Frequently over the last 12 months my husband and I have alluded to our "team". But at the lowest point, when the stress of dealing with all that we have been given was overwhelming, I wondered whether there was any point in being a "team" when you never worked together. We were two parents who had three children, but we parented them separately. I would take the girls out of the house to give James the space he needed, and spend time doing things with them. David would look after James and if I could organise an hour or two of respite he might fix the shelves that James had pulled off the wall or prune his roses (I know! talk about priorities) or change the wet sheets. Or nap. Napping was David's favourite pastime. I couldn't talk to him about it, but I know he was very depressed. This wasn't living, it was surviving. I should have started a new blog - not drowning, just surviving... We barely saw one another all weekend. If David needed to go out to the shops for DIY tools he took one or both of the girls as it became increasingly hard to look after James with either of them around. In fact, I argued to social services and education that it was dangerous to be left in sole charge of James and his two year old sister as you couldn't change her nappy safely as you would have to leave him for more than 45 seconds. I developed a method of changing her on the kitchen table which allowed me to block his path to the fridge/sink/hob. We lived for the weekends when James went to his respite carer. He would stay two nights but as he came home at 10 on Sunday it was really only one full day that we got a glimpse of what being a "real" family was like. I secretly dreaded our respite weekends at times, because afterwards I felt so low, having seen what could have been. I don't regret our decision to have children, but I constantly grieve for the life I expected to be offering them. I thought I'd be the mother baking cookies, watching my children participate in sport and dance/music/drama, managing a part time career, taking occasional holidays, watching my husband play with our children and basically being "normal". Even when James was diagnosed I imagined life would be hard but we would weather the hard bits and be rewarded for our work with positive happy times in between. How different things turned out.
In January last year it had been a year since we had requested a reassessment of James' needs as we felt that they were not being met at his current school and he needed the waking hours curriculum support that a residential placement would provide. I had known for a long time that at some point James would need to be educated in a residential setting but it wasn't until David began to mention residential schooling as a viable option that the wheels were set in motion. Until that point it hadn't been necessary, but when David said he couldn't see himself coping for much longer I knew breaking point had been reached. To find ourselves a year down the line with no progress was soul destroying. We had worked and worked and worked, we had bared our souls to the professionals who were meant to help us, we had shouted, we had cried, we had to access couples therapy just to see that there was a light in this tunnel of darkness. Meetings were happening behind closed doors (so called "professionals meetings" - this will be a whole blog post of its own) yet we were not party to those discussions or decisions. We have never been informed of the contents of those meetings nor of the outcomes. I still find that distressing, that discussions about our family's future are held without any opportunity for our side of the story to be honestly represented. It makes no sense - even in child protection conferences we invite the parents into the room, allow their story to be told and heard first hand. Yet in decisions about a child who has no voice, no advocate, no way of making their needs heard, the family are not allowed to speak. I wouldn't take a medical history of a child from their health visitor and make a decision about giving that child treatment without seeing the child and their parents. Yet every day, behind closed doors this is happening. Decisions are made by people holding purse strings, working for the local education authority and social services, without the full facts, without seeing the families involved.
Somehow, at some point, after we'd been through 18 months of bleak, dark, consuming misery, we had a meeting with the "right" person - I was starting to emerge from the darkness and found strength that I didn't even know I had and ripped all the arguments they threw at us to shreds. I presented them with black and white evidence that they simply couldn't refute and I knew as we left the meeting that there was finally a light. David had said virtually nothing throughout the meeting, mainly keeping an eye on Edith, but in the car he told me how proud he was of me and I cried. It was the first time in a long while that I'd felt appreciated and loved. There simply wasn't time in our days to make space for each other. I began to feel as though we might just make it through unscathed and together despite the best efforts of those around us to rip our family apart.
And then I broke my ankle. A proper break. No weight bearing at all for 8 weeks. How one looks after a toddler with a broken ankle is beyond me. Edith had to stop taking a nap as I couldn't get upstairs. I had to change her nappy on the sofa next to my enormous plaster cast. I couldn't take her out of the house as I hadn't enough upper body strength to use my crutches safely. So how does one look after a non verbal severely autistic child who requires one to one support at all times? Once again, we were failed by social services who failed to acknowledge the severity of James' needs and as a result offered us one night of extra overnight respite. When I demanded someone came to the house and made an emergency assessment I was initially dismissed and told it was unnecessary. It wasn't until I told the duty social worker that my children were all at risk of immediate harm as I was unable to look after them that they agreed to assess the situation. The sad part is that we aren't a one off case. Daily parents are told that they're not entitled to assessments or support when this is simply not true. If this blog is read by just one person who is enlightened in the methods that those people who are meant to support and help use to keep services away from those in need, then my hours in front of the screen are worthwhile. Never accept no for an answer. Never believe that there is nothing that can be done. Ask for evidence to support their claims that it is not their remit to provide support. Because more often than not you are right and they are wrong.
We enter 2014 not fighting for anything! I can't quite believe that. James has a placement at a residential school during the termtime and we have a support package that allows us to ensure his safety and stimulation during the holidays. We have had more sleep in the last four months than in the last four years. I can't remember a happier Christmas. James is making progress for the first time in years. I saw my reflection in the mirror and found a smile on my face. I think this is going to be a good year.