I am trying not to read too much into the fact that the first club Peta joined when she started secondary school was the self defence club… She’s joined other clubs too, and has already received an award for her work. But more importantly for me, I have seen her confidence rocket. She hadn’t finished her homework last week as she had been away at the weekend; instead of being terrified as I would have been, she marched straight up to the teacher and organised to have it done for the next day – no problem. She lost her locker key, and instead of not using her locker for the next few months as I would have done, she went courageously to reception and sorted it. I am in awe of her confidence – I wish I was brave enough to implement her sensible approach to life. Peta’s positive start to secondary school seems to be continuing and I am thankful for that.
Joe has started on his GCSE courses. One year into his life at his residential placement, he is settled as much as he will ever be settled anywhere. He is achieving academically and he has friends. Outside school, he has landed a weekend job building LEGO models! – pretty much his dream job – and he spends time volunteering with a group who value his skills and enjoy having him as part of the team. We have managed to push Joe’s residential time at school down to three nights instead of four, and I find that easier to cope with – he is at home more than he is at school and somehow, in my head, that makes a difference. I am thankful Joe is experiencing a period of relative stability in his life.
Amos is coping with full time school. I’d known he wasn’t ready for full time school last year, but I didn’t say ‘I told you so’ when the teachers expressed their pleasure at how much he’d come on over the summer, at how much more he seemed able to gain from his school experience since the beginning of this term. I am thankful that Amos has been able to start full time education positively, when he was ready for it.
Melody is being taught by teachers who value her individuality, who understand that her natural exuberance is fuelled by her innate curiosity and thirst for knowledge, not a desire to be disruptive. I am thankful she is not being misunderstood by those who should inspire and support her.
Mark is in a full time, permanent job. He seems to be well now after an operation necessary to combat a reoccurring illness. And I am healthy. I have so much to be thankful for….
I have so much to be thankful for, so I feel guilty that I don’t feel positive. On the surface, all is well. People ask me as I pass them on the way to and from school, “You alright?” I reply, “Yeah, fine thanks.” But I am not; I am not fine. I am struggling to maintain the finely balanced equilibrium of our family life. The effects of autism are all pervasive. Stability in Joe’s life has occurred in transient interludes, I can never be complacent about what tomorrow will bring. I am glad we are not in crisis any more, but there is no respite time for recovery, no time to build up resilience to the everyday life of a carer. Dealing with Joe’s autism does not stop being hard, for Joe or his family, just because a crisis has past.
I am weary. Weary of pretending to myself that I’m okay with Joe being in residential education and all that it entails; weary of dealing with the emotion when, every day, I see the headmistress who excluded Joe from the school Amos and Melody now attend. I have to dig ever deeper into my dwindling resources to comfort Melody who cries every morning before school because she is ‘odd’. I am struggling to help Peta deal with the sudden plunge she has taken into aspects of an adult world that I find distasteful myself, explain to Amos why he is expected to spell ‘eight’ at the age of five. I am so weary of unpicking my day to find our successes. I am tired of celebrating tiny goals that have taken us so long to achieve, activities that most families don’t even notice they do every day – using a public toilet for example. A case in point – the Giants. We had a success, but it took a month to plan the trip and the background level of awareness that I keep up constantly does not diminish because a day is going well – just a trip to the toilet for Joe, while waiting to see the Giants, involved first a trip by me through the crowds to find a toilet in the Maritime Museum on a quiet level, with hand driers that didn’t automatically set off if you got too close. I had to find a route avoiding museum display mannequins (Joe absolutely cannot cope with them), noting all loud recorded noises, then return for a detailed briefing with Joe before a tense journey accompanying him to the toilet. We did it, but it’s never easy. The whole effort of the trip to Liverpool left me so very tired, running to catch up with daily demands of a normal week.
As I try to tidy the never ending mess of my home, while listening to the drip as water drops through the back room ceiling into a bucket, it is hard not to feel down. I should still be feeling buoyed up by our successful trip to the Giant’s last weekend, but instead even Joe has noticed the difference in me since I returned home. He, who admits himself he has trouble detecting emotions, asked me what was the matter – “You’ve gone all floppy again”. There are positives in my life, lots of them; I try to focus on them every day, but sometimes the road feels so hard. I am exhausted with the emotion of it, so I know I am not ready for our next challenge… Joe’s funding is up for renewal. We’ve been told to research our legal position.
I am too tired for this.
Joe is funded from two pots of money; social (the residential bit) and education (the school bit). Social do not want to fund the residential part of the placement because they feel there is no reason for him not to live at home and education do not want to fund the residential bit because the school is too close to his home (ironically, if I sent him away, they would pay). The school will only take residential children, so Joe may be out of a school place at the end of October. This is our fight – it is never ending, and the respite is limited. Against every fibre of my maternal instinct, Mark and I voluntarily placed Joe in care as there was no other route left open to us; it was the only way for him to receive the education which is supposed to be every child’s right in this country. Nothing has changed. There is still nowhere else in this county that could support Joe’s education. My family surely have not been through the pain of the last year, just to have Joe’s funding cut when things are becoming relatively stable. What is the point in funding enough time for things to settle down, just to have our lives thrown back into the turmoil of eighteen months ago? What will it do to Joe? Surely someone will see the need for Joe to remain where he is, surely… But I’ve been here too many times before. With Joe, anything is possible – the good and the bad. I hear the horror stories of just how much local Children’s Service’s budgets have been cut and I know what Joe’s placement is costing.
All we can do is hope, but this uncertainty is unsettling, stressful, exhausting. I’m practising in the mirror, ‘Yes thanks, we’re fine.’ But I’m scared. If we are plunged into crisis again, I don’t know where I will find the energy to carry on. I wander our woods; I pin my hopes in the trees.