It would be remiss of me to say that blogging (I believe that’s the term I’m supposed to use) comes easy to me. Despite the compliments I have received, I am no literary genius and didn’t leave school with an A in English. I have not been guided as to how a blog should be written and dilemma over whether I need to talk about the past, present or future. I am also conscious of the people who come into contact with Joseph when I want to discuss a particular topic. I want it to remain an honest account of my thoughts and feelings, yet I need to be respectful of those around us in what I share. My head is awash with memories and experiences and I feel unburdened as soon as I have pressed the ‘publish post’ button. But very quickly I have the need to start all over again and I am not sure where it is all coming from or whether it will ever stop.
The logical side of my personality tells me that I should order my thoughts chronologically, which I have tried to do and was almost ready to share my next post. Unfortunately, Black Tuesday stood in the way of that and now I feel obliged to skip, almost to the present.
A month ago I wrote the following:
11th January 2016
We all have those days as parents where our child is a complete nightmare in the supermarket; today I had one of those days. In fact it was a little bit of a shit day to say the least.
Naturally as it goes at this time of the year, we are all suffering from various germs and after doing the rounds and me being almost germ free for a week it seems as though it is my turn again. My head is pounding, my throat aching and I have a strange sensation in my ear. To top it all, the gym class I worked so hard at yesterday has caused me to start walking like John Wayne as the day has wore on.
I am waiting patiently for Joseph to finish school and his class teacher wanders over and asks if I have a minute. I want to say no, can you book an appointment with me in a week next never as that old familiar feeling returns again. I should be thinking of my glass half full I know, in that at least it doesn’t happen as frequently but I know he isn’t inviting me in to tell me what a great day Joseph has had.
Predictably when we walk back towards the main door, Joseph kicks off (I hate to use the word meltdown as he wasn’t having a meltdown, just a loud protest) and I can only assume that this is down to the fact that he thinks his school day is starting again. You see, that is what I have to do most of the time, assume what is wrong with Joseph as he is not always able to tell me what actually is wrong.
So I lug the guitar, bags and summon Joseph back into the classroom and wait for what it is that he has actually done. I’m asked whether there any problems at home and I am wondering whether now is the time to be funny. “Yes, I have writers block, I cannot find a summer holiday and my partner won’t play Just Dance with me anymore” I decide no, it probably isn’t and explain how he has been under the weather and sometimes that manifests itself in other ways. Joseph has been defiant and tearful. I am not sure what side of the family that comes from.
On the way back to the car, he tells me that there is ‘No school tomorrow” and I try and probe him as to what is wrong even though I know my efforts will be fruitless. He tells me that it’s because he isn’t well. And whilst I feel annoyed that I don’t know the real reason as to why he has been off at school, I feel a little amused that it appears that Joseph has been eavesdropping, as that’s what ‘normal’ children do.
At this point I should have followed the old adage ‘quit whilst you are ahead’, even though I am not ahead, and couldn’t be any further behind if I had tried. Like the fool I am, I pressed ahead with the planned trip to the supermarket. I thought that giving Joseph the scanner and maybe offering toy bribes for good behaviour would have resulted in a smooth trip. Mistake number two it seems, as this boy is totally on form today. First he runs up the travelator and then carries on running like Forrest Gump whilst I am stuck on the damn thing with the trolley. Then he is scanning shopping items, followed by rescanning the items, running and skidding on the floor, removing items from the bags I was packing them in as we shopped and then ramming the trolley into anything that moved, or didn’t move.
By this point, my sugar levels were dropping (I’ve tried to convince Kev for the last few years that when I am ridiculously hungry I become a diabetic and cannot function until someone feeds me a large helping of sugar) and I am ready to just lay on the floor myself and kick my legs, just like the parent does in the advert. Without any further delay, I then call at the petrol station, fill up and buy myself a twix and stuff into all in my mouth before getting back in the car. Joseph looks at me with what I can only describe as disgust.
The good news is, it’s Monday so it can only get better from here. Although tomorrow I might just stay in bed.
The following week I was told about him pushing two children and needless to say it concerned me. I was still hoping that it was a phase but wanted to make Joseph understand there were consequences for his behaviour. His iPad was removed for a day which initially he didn’t understand why. He kept asking me to put the code in and charge it up and I told him no and it was because he had been pushing, it wasn’t kind and it made me unhappy. He told me he had a headache, a feeling that I could relate to. On the following days, after I was told he’d behaved better, I ensured I made a big fuss and how he could have his iPad. I wanted him to see how good behaviour results in rewards and undesirable behaviour results in his favourite activities being removed. Some would argue that not pushing is not good behaviour but behaviour that is expected but I needed him to see the extremes as I knew shouting at him would have no effect other than it resulting him replicating the same behaviour.
When I write about my experiences and thoughts, I am not as egotistical to think these things only apply to me as a parent of a child with autism. I know most of what I experience as a parent is no different to any other parent. We constantly juggle work and relationships whilst trying to be the best parent possible.
Back to the present.
To call it Black Tuesday is slightly melodramatic, but it wasn’t a great day. I generally arrive at work early these days so that I can work the required hours and leave early enough to drive the 30 miles back to pick Joseph up from school. On this particular day, Joseph greeted me in his usual way “We’re going to…?” and then we walked back to the car. Simple enough anyone would think, but I walked straight into one of the small wooden posts that border the carpark. Not only did I walk into it, I then fell flat on my face, completely stunned by what had happened. Joseph immediately started laughing, which in fairness to him must have looked like some staged comedy gold moment. A couple of parents checked whether I was ok and I picked myself up and limped to the car. By this point the pain was starting to kick in and I had tears building inside. Joseph realised what was going on and I could sense a change in his attitude to one of concern. I phoned Kev, crying down the phone which caused Joseph to start mimicking me and he started crying too. I knew I had to hold it in for his sake if not my own but could hardly drive as my leg was in so much pain. He could see my hand was grazed and told me to lick it (I am certain I haven’t told him to do that before) and produced a tissue from his pocket and was trying to wipe my eyes. If my shaking leg wasn’t going to cause an accident then a poke in the eye could possibly be the thing that did the trick. Despite all of this, I was heartened to know that Joseph was showing emotion and wanted to comfort me. I managed to get home, check my leg which was a bit of a mess.
The usual Tuesday rush followed in that it’s a quick dinner, reading and spellings for Joseph before needing to be at his dance class. Fortunately, by then Kev had arrived home and was able to take Joseph for me so I could get to parents evening.
Admittedly I was more nervous about walking around the carpark in the dark seeing as I can fall over in the daylight, than I was about parents evening itself. It was a pretty standard one where we talked about targets and Joseph’s achievements until the point where I could sense that teacher was building up to something. He was choosing his words carefully as he told me that he had been informed that Joseph had been subject to some teasing from other children. A small group had been asking Joseph to go and hug and kiss other people knowing that he would do it, purely for their amusement. Unfortunately or fortunately, depending on which way you look at it, Joseph was unaware of this and assumed that the children were playing with him and having fun.
I knew this kind of thing would happen at some point but it still made my heart sink knowing that someone would want to do that. We had a good chat about it and made some plans as to how we could prevent it from happening again and what action would be taken from now on. I asked that, rather than the children being punished or simply be told that their behaviour is unkind, they be given a reason why. This probably goes against everything I have said in my previous post about not labelling but I felt it an appropriate time to explain to those children and maybe the wider group about what autism is and how people can support and understand Joseph more. The National Autistic Society are promoting a Schools Awareness Week and have a great deal of resource to assist schools formulate lesson plans at an age appropriate level. It was actually two children who had made the teacher aware of what had happened and I feel lucky that Joseph has such caring friends around him. I asked that their parents be informed of their kindness as I believe it is worthy of praise.
The next day I had a productive chat with the Head and feel that we are working together in order to minimise the chances of this happening again. I managed to hold it together until she told me that when his teacher had come to her for advice it had affected him also and he was choked telling her.
Tonight I was talking to Kev’s children about Joseph’s birthday and the friends we would invite to his party. I made the decision to tell them what had happened and about the Schools Awareness Week. His son asked to see the website with it all on. We chatted about a school friend of theirs with autism and the some of the myths and facts about people with autism. He wanted it all printing up so he could take it to school and then started work on his own presentation which included some powerful statements along with pictures of our family.
From time to time things happen in our lives that makes me incredibly sad, but equally I feel privileged that Joseph has people that care for him so deeply.