Like so many organisations, the Sycamore Trust has been forced to adapt and adjust some of their services in the current climate. As a charity that prides itself on the personal touch, it’s proven to be quite tricky, but the Dagenham and Romford based Autism charity has continued to support families and individuals who are finding life difficult in the period of disruption caused by the coronavirus.
In some cases, it’s simply a case of picking up the phone or sending a text to maintain contact with some of the young people and young adults they deal with but of course there is one group in particular for whom the telephone and other modern communications tools simply do not apply.
All the children on the Speak With A Picture project are of a pre-school age and under normal circumstances, the parent or guardian would attend bi-weekly SWAP sessions with their child and Sycamore staff, to learn how to use symbols to be able to communicate their own wants and needs.
Given that Sycamore staff are now doing this by video chat it becomes much more complicated but the programme is changing and adapting to ensure that the current intake don’t miss out and that they are developing their communication skills to help support them to be able to communicate with their family and wider community.
The SWAP team of Ann Marie Lyons-Mummery and Cheryl Kearney have been busy redesigning the programme materials and engaging with parents via video, telephone and email to ensure that they have all of the information needed to engage with the programme fully.
And it’s working! Despite the lack of personal contact, parents and children are picking up the new skills in their regular sessions, which take the form of group calls as well as one on one video conversations to support individual families to implement SWAP within their own home.
One such parent is Hollie Scott from Collier Row, who enrolled her son Jenson in the programme before the pandemic changed life in the UK, at least temporarily. Jenson is three years old and Hollie had been looking for help for him for some time.
Like many parents, Hollie and her husband were finding it hard to get help for Jenson. She explained; “I was desperate for help for Jensen, I knew something wasn’t quite right and I have a fantastic health visitor who supported my concerns”
She continued; “In terms of speech and language therapy the wait is infuriating. You try and seek help and come up against closed doors all the time”
But Hollie finally opened the right door and found the Sycamore Trust after a recommendation from her local children and disabilities team and she was able to refer Jenson to Speak With a Picture. Fortunately for Jenson, when he started on the programme, his mum already had a knowledge of Makaton, which gave her a head start with the SWAP initiative, which relies on a system of exchanging picture symbols for everyday items, like food, drinks and toys.
Hollie said, “He can say a few words very clearly, like Mum and Nan. Recently he’s been trying really hard to pronounce certain words, which he hadn’t done before. He’s really been helped by Makaton which he uses when he wants food and it has helped so much with eye contact.”
Better even than mum getting involved is the support of siblings and Jenson gets terrific support from his seven-year-old brother and his eleven-year-old sister Lily. In particular, Lily has been a great help and we’ve seen pictures and videos of her exchanging with her little brother, much to Hollie’s delight; “His brother and sister accept him as he is and it’s only when they see other children of his age that want to play and chat that they realise that their brother doesn’t behave the same way.”
Hollie continued; “I explain that his brain is just a bit different to ours and we must help him to learn in a different way and they are really brilliant. They just accept the situation for what it is – I’m very lucky that his brother and sister are so good with him. Lily is brilliant; she’s learned some Makaton as well, just the key signs, and I was keen to find out if he would respond to someone other than me”
Not only has Jensen responded, but he has picked up the method of exchanging very quickly, although that came as no surprise to his mother. Hollie told us; “He’s a bright little boy, but he just can’t get the words out, so he picked up the programme very quickly. I’m hoping that as we get to the latter stages of the programme, he’ll improve his sentence structure and start requesting things other than food. He doesn’t really play, so I am hoping that this well help him in other ways apart from just the initial requesting.”
Speak With A Picture began in September 2018 and has helped dozens of families and children in the two years since it began. It has benefitted from the generous support of BBC Children In Need and we are of course hopeful that we will get future to continue this vital work. Such has been the success of SWAP that the Sycamore Trust have recently been commissioned by LBBD to take on extra families from Barking & Dagenham, which they were delighted to do.
SWAP support worker Cheryl Kearney has been impressed with the progress made by Jensen and other families who have recently started the course. She said “We are delighted at how well the remote SWAP programme is going. Families across the three boroughs of Havering, Barking & Dagenham and Redbridge have really engaged and all the children are beginning to use symbols to communicate their own wants and needs. We have also been providing support to all our present and existing SWAP families, by providing suggestions or activities/resources, links to other organisations that may help and someone to talk through any concerns or issues”
The SWAP programme provides every child with an opportunity to develop their communication skills at their own pace and their progression relies heavily on the support of their families, teachers and wider community. Fortunately for him, Jensen has a fantastic support system involving his family and his siblings exchanging with him shows that the whole family is engaged with supporting Jenson to communicate. His mum concluded; “I know this doesn’t guarantee speech, but I am hopeful that this provides him with a voice. I’m thinking of the future and when he goes to school. If he still isn’t communicating verbally, at least he has the symbols and I want to give him as many tools as possible to enable him to communicate.”
And, there was a final word of encouragement to all families in a similar position. Hollie said; “If you’re thinking about SWAP, you’ve got nothing to lose. Even if it doesn’t work for you, Cheryl and Ann Marie are a great support and have so many ideas and suggestions on how to support your child. It’s not just PECS, they have many other ideas to help children in daily life.”
For more information, visit; http://www.sycamoretrust.org.uk/our-services/swap