If it’s possible to look forward to something yet dread it at the same time, then that is how you can describe this week. I knew it would be hard with Joseph having summer performances at school and then his dance show at the theatre later on in the week. And when I say hard, I mean tough on both of us physically and mentally.
I’ve known for a long time that Joseph has a love of music and dance but that doesn’t stop me worrying about how the actual performance will be on the day. I have seen him countless times where he has known a dance routine inside out and then on the day itself, he has either put his arm in front of his face or just bounced around on stage.
When he first started at school, I was worried what people would think when watching these shows. Would they laugh? Would they worry that the child flapping and bouncing at the end of the line would take the shine off their own children? Over time, I have learned to realise that people now know Joseph (it’s a very small school) and that they are almost as pleased as I am that he is taking part and for those who don’t think like that I have to just get on with it.
It’s near the end of the school year and we are all drained. I am working out where I need to be and when, not just for Joseph but for Kev’s children too (who are at different schools), add into that a new job and me trying to increase the miles I am running each week and you can imagine my calendar. I’ve been told, I am incredibly organised but the truth is, it doesn’t come naturally and I have to work hard to get everything in some sort of order and I don’t get it right every time. I don’t do it single-handedly either and I have a good support network to back me up. That may mean I am a good coordinator of others, but I endeavour to get to as many places and functions as physically possible. I prioritise reasonably well and know that a summer play or sports day is more important than the summer fair. And when I say important, I mean important to me, because as usual, unlike other children, Joseph seems nonchalant in his approach to whether I am there or not.
This year’s school summer performance consisted of a showing on both Tuesday afternoon and Wednesday evening in his supporting role of an Oompa Loompa. It has to be said that if anyone could look the complete opposite of an Oompa Loompa, that would have to be Joseph. My mum did an outstanding job at creating a costume and my contribution was a fantastic purple afro wig. I know my strengths and costume making isn’t one of them. I honestly had no idea what to expect from the show because as usual, Joseph’s conversational skills weren’t giving Jack Shit away.
I needn’t have been worried as he played his part exceptionally well and I loved seeing what his dance teacher had done to create a rave-type dance atmosphere. And despite Joseph having an incredibly serious face throughout, I had tears of laughter streaming down my face at the fantastic moves these children were producing.
The show that I was more apprehensive about, was the one at Rotherham Civic Theatre. My last blog had talked about how his out of school dance group had welcomed Joseph with open arms but that wouldn’t stop me being anxious as to how he would react at the theatre. It’s fine him doing his little dances at the studio but this was a completely different ball game. Plans had been put in place to try and make everything as stress-free and simple as possible for us both, so I took him to rehearsals on Thursday trying to remain calm and have a little more confidence in his abilities.
Unfortunately, Joseph had not had a great day at school Thursday and I was called into see his teacher. I was hoping I was going to be bothered with something trivial but I was quickly disappointed. Earlier in the week, I had been told that he had bitten another child when he had got overexcited about something. It wasn’t done maliciously, he wasn’t upset or angry about anything at the time and they had put it down to lots of changes going on at school and the school play happening. I wasn’t happy about him doing it but could understand that the end of term and the countless activities we were juggling could become difficult for Joseph and may manifest itself in other ways.
Thursday was a different matter though. He had been asked to put the school iPad away and hadn’t. He was sat with a group of children who had repeated the message the teacher had just given him, so he took that opportunity to bite/hit and not just one but three of them. I have said before that Joseph is not violent so displays like this, confuse, anger and upset me. There was no lasting damage on the children concerned, no bite marks or bruises so I am grateful of that at least. Joseph was asked to tell me what had happened and due to his difficulties with communication, he found this hard but I picked out odd words and that he had been placed on the ‘amber light’ at school. Fortunately, his school friends are patient and understanding of Joseph (I’m not sure why sometimes) and one of them had asked his teacher soon after the event, if he could be placed back on green. I explained to Joseph how upset it made me when he did something like that and it wasn’t nice. I always hope that this does have some impact and he understands what I am saying and as usual, his punishment was removal of the iPad at home. I know it’s something he loves and will affect him more than me shouting and saying he can’t have something he isn’t particularly fussed about.
Naturally, I was worried as to how the evening would unfold given his behaviour earlier in the day. When we arrived, most people were already sat in the audience waiting for the principal to go over the details of the show and we made our entrance via the stage. It was at this moment, Joseph decided to run on and just throw himself to the floor in front of a whole host of people we have never even encountered before. Joseph only goes on a Tuesday night and there are lots of classes running so a large number of people were unfamiliar to us all. I wanted to shout “Get the fuck up” but I never swear outwardly to Joseph thank God, I just generally keep the words in my head to myself. I was embarrassed and wanted to drag him across the floor and off the stage but instead I whispered to him in my often rehearsed sinister voice to get up otherwise there would be no iPad the following day either. I know I’m running out of effective threats and punishments.
Without even thinking about it, I took Joseph to sit at the back of the audience pretty much away from the group and a familiar face from our Tuesday group shouted me across to sit near them; it’s those kind of small gestures that go a long way.
After the talk was over, Joseph and I were shown to the dressing rooms and he was literally all over the place. I think it was the new environment but he couldn’t sit or stand still for two minutes. I dressed him for his first dance and went back to the audience and waited nervously for his group’s turn.
When the curtains opened and the music started, the children were lined up but Joseph was stood at the back slightly away from the others. Whether it was the lights, atmosphere or just the fact he wasn’t used to it, he just looked to be out of place. He was bouncing up and down and his arms were flapping and I wanted to run up and tell him to join in and dance. I had tears pouring down my face and started questioning my decision to put my son in this position where he would be on display and not just to people who knew and loved him, but to people who had no idea who he was and possibly no understanding of autism. I wanted to close my eyes and it all be over but eventually he picked it up and it seemed that he suddenly heard the music and realised what he needed to do.
I made my mind up, that if the next dance went tits up then that would be it, I couldn’t expose him in that way. I am his mum and will protect him to the nth degree.
His next dance didn’t go tits up but he spent a great deal of time picking his arse, but found the stage shall we say. There was no way he was going to stand at the back and near the end of the song, he casually tossed his cap into the audience (which consisted of me and the photographer). Who the fuck does this lad think he is?
I messaged a few friends and shared the videos of both dances and I was pulled back from the depths of despair. I couldn’t expect anything else really as these people know me and Joseph well.
After one of them had seen the video of him poking his arse and throwing his cap, she said this:
“You can do what the hell you like when you’re cool as fuck”
Another, who knows this dance school inside out said this:
“Mate, if he’s doing something that he loves and is in an environment that accepts and understands him for the fantastic little fella that he is, let him do it. You as his mum would NEVER put him in any situation the would compromise him or make a ‘show’ of him and neither would his dance teacher. All people will see is a little boy putting his heart and soul into something he loves with the enthusiasm that’s needed for the stage. If he was a (not that I like using the word) normal boy and loved dancing but wasn’t in sync with the rest, would you be saying no sorry son ‘let’s take you to swimming or football instead…’? No, you’d be encouraging him to do what he loves and enjoys”
I suppose that was me well and truly told and I need it sometimes because I am too close to it to see whether I am doing what’s right for any of us.
So Friday comes and Joseph has not kicked the shit out of anyone at school, which is always a bonus. His report was in his bag and I wondered what may be in it; I should have more faith.
“Joseph is an absolute pleasure to have in school and is popular with everyone”
“You have had a brilliant year, you have become a very responsible member of the class. You are a polite young man”
“He has an inner resilience that enables him to have the confidence to adapt to different situations”
I did wonder whether the comments had been pasted into the wrong child’s report as there are two Joseph’s in the class but I’ll take them!
After dinner we all made our way to the theatre. I think he was overexcited again (there were a number of familiar faces there to see his performance) and I panicked thinking it would all fall to pieces. I worried whether he would be collected at the right times and whether he’d do as he was told in the dressing areas and that was before I even considered what may happen on stage.
At the point his dance was due to start, I could feel my breathing and heart rate going through the roof. I was muttering a combination of prayers and swear words.
I needn’t have worried though as he came out and owned that stage. There was a section where he was doing the opposite of everyone else and I genuinely thought it was part of the routine but I later found out it wasn’t.
His second dance, there was a bit of nut feeling going on (his own) and whether he thought he was Michael Jackson, I’ll never know. But he was strutting his stuff like it was the most natural place to be. The tears flowed because I knew then, he was happy and it was exactly where he was meant to be.
Even in the finale when they had some small fireworks going off, he wasn’t phased and he clapped and marched along to Justin Timberlake’s ‘Can’t Stop the Feeling’. And it was at this point, I knew I had no need to feel embarrassed about my son and I was proud to say that he belonged to me.
I was incredibly touched by the parents and helpers comments after the show at how well they thought he had done and the steps taken to ensure that he was treated like another member of their dance family. It’s that kind of attitude that puts others to shame and I feel blessed that Joseph and myself have encountered such thoughtful people. They had taken Joseph into their hearts without even knowing the backdrop to our story but since the blog, Joseph seems to have fame in his own right. If I have raised awareness of autism and what it feels like to be a parent of a child with autism then I have achieved success.
Saturday went pretty much the same, although less nut and arse scratching and a bit more trainer fiddling. He was very close to the edge of the stage at a couple of points and I wondered whether he might fall or even do some crowd surfing but I was too far back to prevent either from happening. He wiggled his hips from his place on the left of the stage all across to the right (again, I’m not sure whether he should have been there) and he took full advantage of his moment. I don’t have any photos of Joseph as I wasn’t backstage with him, but hopefully some may turn up somewhere but imagine lycra, pink, purple, silver and you’ll get the picture.
The whole show was fantastic and organised brilliantly; all of the children appeared to have a great time showcasing their talents. I have Claire and Jo to thank for opening my eyes to what was in front of me all along and introducing me to the group.
Each night was a late finish and I was ‘blessed’ to get a lie in until 07:00 yesterday. Today, I’d had high hopes; a year after moving into our family home, Joseph’s room was finally finished. The pièce de résistance a new blackout blind. We’ve had blackout blinds before but this was the dogs bollocks of all blinds and there would be no light getting into his room. Two 10pm finishes and a new blackout blind was certainly going to give me a lie in. And for all Joseph is ‘as cool as fuck’ I continue to be ‘stupid as fuck’ because it was the usual 06:30 start. I must have said “For fuck’s sake” loud enough for the deep sleeper at the side of me to hear, as he got up with Joseph (love you Kev). I managed a whole 9 hours sleep and then took myself off for a 5.5 mile run because that’s how I roll.
Joseph in his usual manner, when complimented on his performance and asked whether he had enjoyed it, responded with “Yup” He has no concept of his achievement or a sense of occasion, so I guess I’ll have to do this on his behalf.
Next week we have sports days and it’s the first time I will have seen Joseph take part since his first year at school; I hope he shows as much resilience as he’s shown this week. I know by the time we get to Friday though, I will be falling off the wagon and consuming a nice cold drink.
I think there is only way to end this post:
Cool as Fuck v Doesn’t Give a Fuck.