A job with good play

Fundraiser Sue Miles describes her day spent shadowing
Julia’s House playmaker Sue Keenan


I was privileged to shadow Playmaker Sue Keenan for the day, something I have wanted to do for a long time.
We met at the Hospice and Sue explained we were going to see a little boy called Charlie who lives in Beaminster.
Sue had only seen Charlie twice before in April when he was 11 months old. Sue had devised a playplan for fun at that time. Sadly Charlie had been very poorly since her first visits, so it hadn’t been appropriate until now to re-visit and effectively re-assess him.
Charlie actually suffers from Ohtahara syndrome, a very rare form of childhood epilepsy that causes seizures, both motor and mental developmental delay and muscular weakness. There is no cure and in Charlie’s case his symptoms started within a few days of his birth.

"Sue doesn’t need or want to focus on a child’s condition, her only interest is what they can do and to get into their world to work out what they enjoy doing"

When Sue had initially seen Charlie he was only 11 months old and although he could not sit, hold his head up or grasp things, he was aware of noise, textures and had shown an interest in black & white visual images. As it was 6 months since Sue had last visited Charlie and she knew he had had a lot of seizures in that time she had no idea what impact this would have had on his skills so she was treating this like a first visit.
Sue said it was important not to have preconceived ideas, she is lead by the child and does not plan what they are going to do in advance.
Instead, her aim is to develop a play plan for each child that the carer and parents are happy to use with the child.
Sue was wearing only black and white as these were the colours Charlie seemed to see when she last visited him. She explained it is easier for a child to focus on a toy held against a plain dark background.
When we arrived Charlie was with his Julia’s House carer Catherine Gregory.
Sue always arrives at a play session with her red & white spotty bag so that the children associate this with play and when they see her they know what to expect.
Sue said it was a good idea to sing a song to Charlie as Catherine lifted him onto his “Sqiggley”( a support to sit Charlie up when he is on the floor), so that he gets to know he is going to play. Catherine will sing this same song each time she starts a play session or moves him. Sue asked Catherine to take off his socks so Sue could see if she gets a reaction from playing with Charlie’s toes. We all got down on the floor to be at Charlie’s level and Sue talked to Charlie and laid his space blanket across him for Charlie to feel and touch.
Sue crinkled the blanket looking for a reaction to the noise. We got a reaction from his eyes and a tiny movement of his toes when something was brushed across them.
Everything Sue showed Charlie or did she did slowly, giving him a chance to process and react.
He doesn’t like loud noise and startles easily so toys need to be brought into his eye line from a distance to allow him time to adjust to the new sound.
Charlie didn’t seem to be able to support or move his head but he followed objects as Sue slowly moved them across his line of vision.
Catherine moved Charlie onto his tummy lying over a cushion and Sue laid next to him with her face on the floor showing him a glowing coloured light toy. He obviously liked this as he managed to hold his head up for a few seconds pushing himself up on his arms to follow the toy. Having thought he couldn’t hold his head up at all it was a great moment and a huge achievement. This must have been a massive effort for him.
Charlie was sat up again in his Squiggle for the final part of the session and Sue got Catherine to play peek-a-boo with him. Although he startled when she did it too near him he seemed to enjoy it we felt he was actually acting and waiting to make the response.
Charlie was really engaged and held our gaze when we each sung to him. When I talked to him in a “sing songy”  high voice as I did when my own children were young, he gave me a real gaze, his eyes fixed on mine – a wonderful moment for me.
Play sessions would normally be for around 20 minutes maybe at the beginning and end of a sit but our session with Charlie had been for over an hour because he wasn’t distressed and did so well.
Sue made notes for Charlie’s new play plan and decided which toys to leave for him.
PS: I hadn’t realised how may toys Sue gives to each family, she needs a constant supply and spends her time scouring charity shops for toys and simple puzzles, so please bear this in mind if you have come across any good quality toys.