There are a couple of topics that I have had simmering on a low heat and know that they can’t stay there indefinitely. I’ve been hanging onto them for a while and know they will be difficult to write for a variety of reasons. I need to once again consider those around me when I splatter my thoughts publicly and I want to do the topics justice when I do find the courage to share. Each time I think “The next post will be the one”, I find another topic that I want to ramble on about and even now I have pressed delete a number of times as I wonder whether today is the right time to share.
Every parent has that inbuilt mechanism that wants to protect their child but I struggle to maintain a grip on mine. I’m probably oversensitive, as I know Joseph needs that protection more than his peers and that he is unaware that in his life he will be treated in a way that is unacceptable and that will purely be down to his disability.
It goes without saying that I believe that Joseph has a right to access activities that any other child has access to. Since Joseph’s diagnosis, I have been made aware of groups that are purely for children with disabilities, from tailored cinema showings to sports and after school clubs. And whilst I think it is brilliant that groups have formed to make it easier for children to access a range of activities, I also believe that some of these are not necessary for Joseph.
I’m not a parent who wants their child to be involved in every activity going but I do think it’s right to present children with different choices on the basis of, how do you know whether you’ll like something or not if you haven’t had a go. That said, whilst Joseph has tried various activities and we never quit after a first session, I’m not up for flogging a dead horse.
From an early age, Joseph clearly displayed a love of music and dance and we have often mused where this has come from. The truth is we have no bloody idea but it’s wonderful to see, although if you ask him to perform he is unlikely to do so as it has to be on his terms.
Over the years I have toyed with the idea of him learning a musical instrument or joining a dance group but wanted to ensure that he was in the most appropriate environment with people who would see his ability and want to nurture it. And whilst he has been given a number of opportunities at school, I wanted to take it that one step further and see if he would flourish in something a little more than his after-school club.
The opportunity presented itself last summer after we watched my niece in a show at the theatre. Joseph loved the show, despite him being unfamiliar with the songs and smiled and clapped along with the music. At one point he wanted to dance in the spot at the side of me which caused some confrontation with the staff as despite him not blocking anyone’s view as he was stood in the aisle, it was against their regulations to allow anyone out of their seats. Despite this, Joseph clearly had a wonderful time and I wondered whether he would be able to join this theatre group. I had seen a young boy with Down’s Syndrome on the stage and thought that here was a group who clearly had no qualms around inclusion.
I made all the necessary enquiries and emailed and spoke at length with the group’s director. I figured that a franchised company would probably have more experience of children with different abilities (and disabilities) and we decided that it would be best to start Joseph in the new term. Each weekly session would last two hours and it was paid for in blocks. Needless to say they aren’t cheap but we agreed that we would pay on a weekly basis before committing fully. I debated about whether two hours would be too much for him and would they and he be able to hold his attention for that length of time. We discussed Joseph’s strengths and weaknesses, talked about whether it would be better for me to stay and I provided her with lots of information that I thought would be valuable when Joseph tried the group.
On his first day there I was nervous and wondered whether Joseph would settle and enjoy this group I had found for him. I thought about the practical side of taking him to such a place. Would he know to ask for the toilet? Would someone ensure he didn’t leave the room and exit the building? We agreed that I would leave them to it and wait in reception in case there was any problems. To be honest, it was quite refreshing that someone didn’t need me to shadow Joseph and she seemed very positive in her approach.
When we arrived, I explained who we were and booked him in. I waited for someone to take over from me and take Joseph into their care but that didn’t happen so when she started to explain to the group what the expectations were, I sat with Joseph and tried to keep him from making little noises whilst his attention and mind wandered off into unknown realms. The group chat went on far too long and Joseph had no concept of what any of it was all about. In all honesty I was bored to tears, so I wasn’t too concerned about Joseph’s lack of attention at this point.
They moved onto some group activity and asked the children to find a space in the room, walk round and use the whole of the room. I can’t accurately recall the specific instruction but it was too complicated for Joseph so I simply told him to walk round. Next, she said something around acting out that you’d heard some really bad news whilst still walking round the room. Again, I interpreted this for Joseph and told him to be really sad. Joseph then went into overdrive and moved his body like ‘Kevin the Teenager’ whilst moaning extremely loud “I’M VERY SAD”. Needless to say, everyone turned to look at him and was probably wondering why he was acting in such a way when they were walking silently around the room looking overly forlorn. I pissed myself laughing but through the laughs I was actually quite proud of my son; he had understood an instruction and followed it. Unfortunately the teaching staff didn’t feel the same and when he ran to me to repeat what he had just shouted loudly, he was intercepted by one of them and the Director said “Mum needs to leave the room as he is acting to Mum”. I pointed out that I didn’t actually care who he was acting to, he was bloody acting!!! So Mum followed the instructions given to her and left the room but not before she had pointed out that they needed to ensure he was safe and listen to him if he asked for the toilet.
I was a little pissed to say the least, as I didn’t feel that they were as prepared as they should have been, but tried to reason with myself and put it down to me being a little uptight. I got my work laptop out and made myself busy but occasionally had a glance through the window in the door, trying to avoid Joseph seeing me, much to the disapproval of the teaching staff.
At the end of the session, I enquired as to how he had gone on and was given some half hearted response coupled with negative body language. I was told that they had tried to buddy him up with someone but he wasn’t interested. Clearly, no concept of what autism is as clearly he does not give a shit if someone is being his buddy or not.
We persevered for a few weeks but the feedback was more or less the same and despite Joseph coming home and showing me some of the dance moves he had rehearsed and clearly enjoying the time he had there, I was dreading each week.
One week I was told that a parent had informed them that Joseph had thumped someone. I was mortified. Anyone who knows Joseph, knows he is not an aggressive person. If anything over the years, both his Dad and I have wanted him to show some sort of passion/aggression once in a while. He’s the sort of child who would let someone take a toy off him and say nothing. And when I say we want him to show some aggression, I don’t mean I want him to stamp on another kid’s head or anything like that. Just to show that he is bothered in some way. I asked for specific details as to what had caused him to hit someone, what had triggered it. There was no information as they hadn’t seen it. All I was told was that the child had said “Joe did it”. I pointed out that my son was never known as Joe and asked them to look into it. I received no further feedback until I asked again and I was told “Oh it was nothing, it turns out Joseph was tapping on someone’s back along to the beat” I am sure you can imagine my reaction. Heavy-handed Joseph as opposed to Violent Joseph.
About a month into it, I was asked if I would like to meet with the director of the group and her husband to discuss Joseph and his future there. The meeting mainly consisted of negative chatter and terminology that would fit right into the 80s. I sat and listened and waited for my opportunity to speak. I was on the verge of tears yet I calmly pointed out their descriptive language was offensive and they had an obligation under the Equality Act to at least attempt to make provisions for Joseph. They argued that they had and that they felt that he would probably be able to cope with ACT I of the show but ACT II was going be stepped up a gear and they felt it would be too much for him. They were also concerned how he would cope within the theatre and if he got bored, would he lay on the floor and if he did this would be a health and safety hazard. It was quite obvious to me that they were looking for excuses for Joseph not to be there. I explained more about what autism was and how some of the tasks they were expecting Joseph to carry out without any struggle would be near on impossible for anyone with autism. There were barriers in Joseph’s way that he would never overcome.
We made the decision there and then that anyone who was bringing problems like this and not solutions, didn’t want Joseph there as it was too much trouble. Did I want Joseph to be around people like this? Absolutely not. And despite feeling all in the anger in the world for my precious son and him being denied an opportunity that I know that with the right support he could have succeeded, I gave in. Joseph politely said thank you and goodbye and we walked away and that was the moment that I broke as he had no concept of what had just happened.
The weeks following were hard as every time we passed the building, Joseph pointed out “That’s the theatre group” and sang some of the songs he had learnt and that made me angry. I carefully considered whether I should take this further or leave it. I was annoyed that despite the promotional material stating that they have experience working with children with special needs, the reality was very much different. I was upset how they had described my son and the situation and felt they would benefit from some disability awareness course to bring them into this century.
I obtained advice from the Equality Advisory & Support Service along with a Solicitor and received,confirmation that the way they had behaved was in breach of the Equality Act. They had an obligation to make reasonable adjustments and they hadn’t. And when I say reasonable adjustments, I’m not asking them to build a ramp or have 1:1 sessions for Joseph. I think they could have made very subtle changes which could have changed the whole outcome. Most importantly, I wanted them to open their hearts and their minds.
I spoke to the Head Office and I expressed my concerns. I told them how I wasn’t looking for compensation or to take anyone to court and I didn’t even want Joseph to come back to such a discriminative group. All I wanted was acceptance that they hadn’t gone about things in the right away and even if was just lip service, to sign up for some awareness course. I explained how I had taken advice and that in my opinion, they needed to change.
The next time I spoke to them, I was told that on reflection, it would have been better if Joseph had joined a group for younger children but they didn’t run one of these in Rotherham. Or maybe it would have been better if I had stopped each week with Joseph; I had offered. Still no apology or acceptance that they had done anything wrong so I repeated what I had said previously. It was even suggested that he join a group where there is just dancing as Joseph found the acting part difficult. I had a further call with them but they refused to speak to me as I had threatened that I would be speaking to a solicitor. I pointed out that I had made no threats and I had indeed already spoken with a solicitor. It seemed pointless to continue with any conversations with them and I left it by writing to them and explaining once again what my issues were.
It left a very bitter taste in my mouth and I was then nervous around enrolling Joseph in any further groups despite lots of suggestions from people I know, around places that would happily take Joseph, warts and all.
The answer had actually been not far from me all along in the form of a local dance centre. I had actually attended this group myself when I was about three. My mum tells the story that I was kicked out as I wasn’t prepared to do as I was told, but the reality was, I was three and had a mind of my own!
I know various people who have danced with this group over the years and even met the teachers in years gone by and I honestly don’t know why I didn’t consider it from the start; it’s even bang on my doorstep. So I tentatively had conversations with the group’s principal and even shared short videos of Joseph. I explained about what happened recently but I did not want that to deter her from giving it a shot and neither did I want her to think she could say it wasn’t working. I wanted her to know that I expected her to let Joseph know (and me) if he wasn’t behaving and that she shouldn’t accept any nonsense. I should have known better really as she’s not the type to accept any!
We tried him with different types of classes but he seemed more interested in the street dance so we continued with that. He has his moments where he doesn’t join in and silently observes at the back of the room but then the following week he performs the full routine that he has witnessed previously. And the difference is with this group, Joseph is just Joseph. Nothing more, nothing less. The children, the parents and the teachers are welcoming and nobody is judged for what they may or may not have. Nobody sees the label and Joseph is one of the group. I receive lots of positive comments about Joseph and his dance skills and every week he looks forward to going. He has his own purple polo shirt with his name on that when he puts it on, he knows it’s time for dance class.
I knew they put a show on at the theatre each year but I purposely did not ask or expect that Joseph would be included for fear of disappointment and I couldn’t see how it would work. But amazingly, we were asked if he would like to take part.
The principal has come up with some suggestions as to how to make it easier for him, as I don’t think either of us expects him to sit in a room backstage for hours whilst waiting for his dance. Joseph is going to sit with me and watch the performance and someone will collect him at the point he is due to change into his costume.
So when we talk about reasonable adjustments, it doesn’t need to be anything major and it’s not going to be the same for everyone but this is an example of people showing heart and showing compassion where others haven’t.
I have everything to thank these people for yet I am sure they don’t think they have done anything out of the ordinary. They might not have the plushest of studios compared to some of the dance groups out there, but that doesn’t matter as they have so much more to give than a fancy studio.
We’re now just under a month away from Joseph’s performance and I hope he dances like nobody’s watching. But despite us almost bankrupting ourselves buying tickets for both nights, if he doesn’t then that’s fine. We’ll continue with our weekly trips to the dance class and appreciate the enjoyment he derives from it in his own unique way.