Summer storm

img_3740“Mummy, how did you know how to make a baby and where to put its ear drums?” “Where does the plastic bugle keep all its noise?” “The blood pipes in us must be like straws – do they have bends in like straws?” At three, Joe kept me on my toes; a constant barrage of questions came out of his mouth. And information too – always referring to himself in the third person, he would tell me about his world. “Joe has a fly wheel inside him, mixing everything up and the wrong words go up his throat and jump on his tongue.” “The wind has blown all the ideas out of Joe’s head.” “It was a big noise – the noise smashed Joe’s ear flaps into three pieces.”

Joe spent a lot of time making sure things were safe and organised in his world too. He put a fire guard round the fire in the Playmobil nativity scene we had; “If the Little Lord Jesus wakes up in the morning, he might want to touch the fire, so the fireguard will stop him.” “When Joe is bigger and he has to go to school, he will have to stay up while Mummy does her jobs so he can play with his toys.” “This is not a toothbrush (pointing to Peta’s toothbrush.) It is a gumbrush, she has no teeth.” At the age of three, he was using words like ‘avoid’ and ‘especially’ correctly, even though he could barely say them.

Joe was just three when he was assessed by a paediatrician. It was June. He was shown lots of pictures, line drawings, and asked what they were showing. Joe was happy to share his opinion. In the picture that I could see two cars about to crash, he saw one car reversing and the other slowing down to go past; in the picture I saw a boy fishing, he saw a boy on a boat with some string who wasn’t going to lean out too far to reach it; in the picture with the boy in the bath with his clothes on, Joe, saw a boy with red skin. He was unable to “put the teddy under the car” when he was asked to.

Of course, Joe knew what the word ‘under’ meant. He couldn’t put the bear under the car, because the idea of a bear being crushed by a car made him panic. The pictures were providing him with similar challenges. At home, we had to avoid any children’s stories involving toy cars bumping into things, so to admit two cars were crashing would have sent Joe’s stress levels into the stratosphere – likewise, to upset the rule that you got into a bath naked. To imagine anyone falling out of a boat would ruin a whole day for Joe. At three, he was already an expert at retelling someone else’s reality, and making an arguable case for a different reality that he could cope with.

We waited until Halloween for our follow up appointment. I remember the day. Joe only went to nursery three mornings a week, and this was a nursery morning. One of the boys had turned up wearing vampire teeth; Joe had been terrified. He couldn’t go outside to get away from the teeth because his fear of balls getting kicked up and stuck on the low roof out there was stopping him accessing the outdoor play area. Joe was already too stressed, so Mark and I left him with his Grandma after nursery, and went to the hospital without him. I remember sitting in the room with Mark and the paediatrician, and being given Joe’s diagnosis – an autistic spectrum condition. And I remember wondering why people kept asking if I was alright, if I needed some time. I felt nothing really, no more than being told that the local supermarket was closing at four o’clock today. I was being given information that perhaps would have some bearing on how I approached my day, but it was just a fact, a thing. Joe and I were already living with the autism on a daily basis, the paediatrician had not changed anything.

The paediatrician went on to warn us that if she wrote down Joe’s diagnosis, it would affect his future; he would not be able to become a solider for example. The thought of Joe round the noise of a firing gun was a joke; he’d immediately panic and jam his hands over his ears, be a sitting target for anyone who wanted to take aim. I didn’t really think this was a reason not to have a diagnosis. There was no point in pretending Joe was not autistic; his autism itself was the barrier, not the fact it was formally acknowledged.  If there was any way a diagnosis was going to affect us at all, it would be by giving me the official stamp I needed to fight for Joe’s right to support.

And I am still here, fighting for support, providing it, living a life I would not have chosen, helping my son along a path I would not have chosen for him. If I knew what I know now about how things were going to impact on Joe, my family, myself, all the time in the world would not have helped me manage on that day we were given the diagnosis.

Up at the wood, I stare at the broken tray in my hands. Peta whacked Joe with it, and it broke. We’ve only been here five minutes.  Peta is screaming that it is all Joe’s fault, Joe as usual has come up with a reality in which he is completely blameless… and he believes it because to acknowledge, even to himself, that he is somehow at fault, somehow wrong, shakes the stability of his world. I try to reason with the two yelling teenagers in front of me. I know this is not uncommon in most families, but I have to push my children further, explain again to Peta how being autistic, Joe cannot fully appreciate how she feels when he provokes her, explain again to Joe how the way he has spoken to Peta has upset her. There’s such a disparity between the level at which I reason with both of them, the things I am saying to each of them. Well done to Joe for not just turning round and smacking Peta back, asking Peta to ignore Joe’s provocative comments, explaining why Peta shouldn’t have whacked Joe no matter how much he annoyed her, even if he had shoved her. Joe will not accept he has provoked Peta, Peta will not accept that she should not have hit out. I feel I am asking too much of both of them. Why should Peta make allowances for Joe’s autism and why should Joe be expected not to react to his siblings in a way that is hard wired into him? It doesn’t matter anyway, no-one is willing to back down and the yelling continues; naturally it’s all my fault. And I find it all too much. I came to the wood with the family to have a happy afternoon. I see it all shatter in front of me. I’ve had a lot to deal with this week, a lot of worries and challenges colliding that I have no control over. I am exhausted and cross. I recognise that if I stay, I will end up making unhappy memories here, and I don’t want that for any of us. I am at my limit; not the calm, rational presence needed to calm the situation.  Mark is with the children, they are safe in the wood. I have lit the fire so they can make lunch, Amos has the antibiotic he needs for his Lyme disease rash, they have water, milk; the trampoline and slack line are up. I tell them I have to go and why, and I leave.

I walk the ten miles home, because I don’t know what else to do with myself. It is not a peaceful walk. It is noisy, boring, stressful. I trudge mostly along a main road.  Where there is an alternate footpath taking me a small distance from the cars, the roar of the traffic is still loud in my ears, blocking any noise of nature. I could have taken a more picturesque, quieter route, but that would involve significant detours. Today, that was not an option; I knew I would need all the energy I had to complete the distance. I can’t help draw the analogy with my life at the moment – no time for enjoyable meanders – I need all my stamina just to take the direct route.

I make it home barely ten minutes before the rest of my family. They had a fun afternoon in the end. Again, I am so glad of the wood. It has provided for my children what I could not. It has given my children space to chill out, wind down, avoid each other when necessary, a place to be away from Grumpy Mummy. When I ask Amos the next day what he wrote at school in news time, he tells me he wrote about going to the wood and how many steps he did on the slack line before he touched the ground (twenty six apparently!). He has a massive grin on his face. Happy memories. I hope that’s how the children remember the wood in the future; I hope they look back and think of the days there as fun. There are so many benefits to our space in the outdoors; it has given us so much already.  I know we are incredibly lucky to have this amazing resource.  Joe will always have to cope with his autism, and I guess his family will always have to put in the extra effort too. But my naive hope is that some threads of togetherness will have formed from times we enjoy in each other’s company, threads that mean in the future we are more to each other than just passing ships in the night.

Autism is part of our family life, whether we like it or not. Fortunately we have the support of the trees and a space where we can draw strength from the freedom of the outdoors; a place we can weather a summer storm.

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