StoryClub is perhaps simply a group I would have liked to have found to attend with my son before he started school. It is a space to celebrate all forms of play as a valid form of expression and communication, where the only label you have to wear is your name because the adults leading it have terrible memories.
For each session, we will open up an empty cottage and go on an upstairs/downstairs adventure. The cottage has been given a touch of the theatrical – there is a garden room, a noisy room, a fort-making room and a den-making space for cosy times. So, in those rooms we can make music out of junk, build dens out of old fabric, scrunch up paper, touch tactile objects, and sit in cardboard boxes.
Pretty much everything is made from recycled and reclaimed materials. Initially, I had thought about the environmental and economic benefits of this. However, as the space was transformed, I also appreciated the opportunity to make play a little bit more equitable – cardboard boxes offer countless valid ways to play rather than a ‘correct’ way to use a toy. The children are in charge and the adults will follow.
A speech therapist has collaborated with us to build a space where we can celebrate the joyful moments of communication that will happen each week. It is not traditional therapy – it is more a chance for mums to be supported to learn that there are multiple routes to supporting children’s communication and language. It is also a chance for mums to play with their children without judgement, social pressure, or an expectation of ‘typical’ play. It is a space to learn and champion the routes for their child to find ways to communicate.
Why?
In my own experience of learning to mother a child with non-typical needs, it was – for a long time – a lonely and isolating experience. When we were referred for speech and language therapy, we’d often arrive and sit in a little waiting room, decorated with some NHS posters.
We’d go into a room, which was grey. Toys were hidden away and chairs were all stacked up along one side of the room. We’d have a rushed conversation about the last few weeks / months. I would sit on the side and was never invited to join in the play.
I remember one session, when the therapist sat on the floor with an attention bucket. My son was trying to climb the chairs. She commented on the fact he was interested in the chairs (something I believe most four-year-olds would be!) whilst remaining with her bucket, like joint attention came with the bucket, not if we joined him at the chairs. She caught his attention with something noisy and later she did some makaton. She commented on some progress on his length of attention and at the toys. She suggested I try some makaton at home as he had sat down when she signed. She would send me some links and when I asked about how much makaton she said try three signs to start. I left just as confused as when I had when I arrived, wondering how my son was going to find a way to communicate. Then we dropped into the ocean of waiting for another appointment.
At nursery, we were sent on a parenting course and the attention bucket came out again as the activity of choice. This time the children couldn’t touch the toys, we’d just see if they could attend. By this point my childs ECHA reports were being gathered and included a mention on his “ability to attend” for 2-4 minutes at the attention bucket in nursery.
It was starting to blow my mind that it appeared my child would by judged largely by his ability to sit at a bucket. Like this is the only route he might take to developing communication. I felt that it reduced his potential in order to fit into a system, that is chronically underfunded.
I was so disheartened, I found an OT who helped me understand why he might not attend to the bucket. I learnt all about his sensory register and the activities that would encourage him to attend actually required movement.
So, by the time we came to the EHCP, I was confident enough to ask to remove reference to it as it seemed an exercise in pointlessness to train a TA to deliver something that did not suit my child. Also, I felt passionately about the fact I knew he could attend for longer with other activities and therefore increase his readiness to learn. The council told me the therapist confirmed it was a motivating activity and would remain. This continues to blow my mind and the only compromise we could make was to include his OT activities as a precursor to him being ready to sit at the bucket.
Speech and Language therapy seems to come in at building joint attention. Our OT explained how your sensory system is like the base of the tower. If the base is strong everything else can be built securely on top.
Yet, we went for two years with an un-sturdy base and no one ever mentioned it to me. Instead, the perception was that my child had poor attention. Until I found the OT, I spent a lot of time looking at toys promising speech, and at the toys in the games therapists played.
I doubted myself and started to think I should buy certain things and that we would practise key words and therapy became something to get into the week otherwise he wouldn’t speak. In many ways I lost my natural motherly instincts because I felt helpless. I forgot the joy of just playing. Also, because his play was labelled repetitive it was like it had to be fixed.
It is only since I understood his sensory system that his play has evolved as he becomes more comfortable in his own skin. I now find I am championing his play. He likes to play with magnetic squares and then holds different colours up to his eyes. I no longer see it as repetitive, instead I wonder more what he thinks about the world when it changes colour.
He also picks up bottles and listens to the sounds they make when he taps them when they are empty, or whether the top is on or off. I am now curious about how he hears the sounds and if this links to why he likes music. He cannot tell us what he is imagining in those moments but they bring him joy and that joy deserves a space to be celebrated without benchmarking it against typical behaviour.
My experience has made me appreciate that the system for SEN children is pretty broken. All the aforementioned therapists were lovely and well intentioned but there is no alternative if the activities don’t aid your child.
The knock on effect of this for families, for education, and for wider society is for another blog perhaps.
StoryClub is not held up as a fix for this – but there is that old phrase ‘it takes a village to raise a child’. It took a long time for me to find a village and when I look back I feel like I lost precious moments with my child, because the narrative around us was that he didn’t fit.
So, my genuine hope is that StoryClub becomes a village for solidarity, learning and mostly a space for joy of the unique ways the world can be seen if we let it.
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