Party Time?

img_0240Today is highlighted in my diary, the entry is in capital letters; Joe’s last GCSE exam. We should have been throwing Joe an end of exam party this evening. The weather is perfect – we could have had a barbecue – but the day is passing much like all the others this month as I try to cook and home school, and Mark tries to work. In some ways, perhaps it’s for the best. Joe will never have to sit a formal exam. But the irony – all those years fighting so Joe could have a school placement, all that time of telling myself ‘if only we can get him through sitting his GCSE’s’. Now it’s all a complete unknown. Joe’s school didn’t really go in for mock exams, not wanting to stress the boys out, making sure they didn’t ‘burn out’ before the real thing. Joe was hoping his final push would ensure he made the grades to go to college next year. Instead everything is so uncertain. We don’t know whether his class work will be assessed as being worthy of the grades he hoped for, we don’t even know if there will be a college course running next term, never mind whether or not Joe will be on it. Joe’s dreaded PIP application which I spent hours on, and which made it past the stage of a phone interview in the early weeks of lockdown, has now been put on hold. Does that mean I will have to go through the whole thing again because the application will be considered out of date? We can’t move Joe’s request for social education forward as it requires a social worker to do that; because of a failure in communication he was still waiting to be reassigned at the start of lockdown and the process requires a face to face consultation so obviously that hasn’t happened. As always, the process of finding our way through the next stage of Joe’s life and ensuring he is able to access those things his peers are able to easily engage with was going to be difficult, but right now, it feels impossible. When I wrote in my diary at the start of the year “2020 – it’s going to be a tough one” in reference to our journey with Joe towards his sixth form years, I had no idea…

I am used to fighting for Joe’s support, but when no one knows what the future months will look like, how do I begin to put in process the requests for the support that Joe’s autism means he needs? Setting up the support and the transition between educational settings takes months. With the whole world situation in such a fluid state, things changing hour by hour, I simply don’t know where to begin. It’s as much as I can do to beat down the reality that life will never be the same again, that Joe’s life and the lives of all of my children have been redirected in ways that will affect their futures forever. It’s a silly reason to be overwhelmed really; many things, if not everything that happens to us, changes us in ways that can affect our lives forever and it’s frequently not in a bad way – I am only worrying about this because the change is so profound, all at once; it is perceptible to me. Of course this is not something that is just affecting Joe, everyone is feeling these profound changes, but my fear is that he will be disproportionately disadvantaged. This week, I have a virtual meeting about Joe’s future – but it feels so futile. How can we begin to plan for his transition to his sixth-form years when no-one has a clue what he will be transitioning to, when the circumstances change daily, when the social side to Joe’s care cannot be considered without a face to face interview, and when there is already less than three months till a college course would normally start. I feel like I am standing on a hilltop, my feet surrounded by a sea of mist – I know where I am, but have no idea where to aim, or how to move forward.

For Joe who needs routine and stability, for whom unknown has always caused anxiety, this situation is so very unsettling. More than ever, we try to manage a day at time. The wood has been invaluable – it is, as it has been for a long time, our stability. It is a focus to take our minds off the ever circling questions. We have a walling project going on at the moment – it really takes concentration. Joe has thrown himself into the task, berating me for taking time out to light a fire to make a cup of tea – “You said we were going to be walling all day…” We have all worked to rebuild the wall, a boundary wall which had fallen to ground level. And I am astounded at how good it looks. We have finished about one third of this section, but there are plenty more tumbled down parts to go at when we are finished here. It takes thought, it’s surprisingly hard work, it’s a wonderful distraction from what is happening in the world. Again, our wood is supporting us through difficult times and, again, I do not like to think where we would be without it. As we look after the wood, so it looks after us. Thank goodness for our trees.