On the right track!
With over 700,000 Autistic people in the UK, a diagnosis of Autism is not uncommon. However, as we know at Sycamore, when someone in your family is diagnosed, a support network is a vital tool when it comes to coping with the challenges that you may be facing.
One Dagenham family had a head start, as their teenage son is already known to us. Fourteen-year-old Riley already attends our Bravo life skills group, so our services were already known to the family. Riley is high functioning and verbal but when his little brother was diagnosed as Autistic and non-verbal, the family knew that they would need the help of a different Sycamore service.
Three-year-old Olly has been taking part in the Speak With A Picture programme, and he’s had the support of dad Andrew with the sessions. That knowledge of what we might be able to do was an instant advantage, according to Andrew. “We knew of Sycamore Trust through Riley. He’s fourteen now and Sycamore helped us as we went through the hell that is the DLA paperwork and the EHCP process – all those things that you don’t know about. So, we knew that Sycamore existed. Riley attends Bravo and that helped him with his independence and he’s now willing to travel independently. He will travel into Romford and to school on the bus and we could not have imagined this without the support from Sycamore.
The family had a support network, through mum Carley’s friends and family and she also knows the Picture Exchange Communications System (PECS), which forms a big part of the SWAP project and there is also a family member working at Trinity School. Nevertheless, Andrew, who comes from Nottinghamshire and has very few family members in London, knew that his working shift patterns would enable him to attend SWAP sessions with Olly, and he felt that this was his chance to build up a support network of his own, whilst supporting his son.
At the age of about two and a half, Olly hadn’t said a great deal, so the family applied to the SWAP programme and started to make immediate progress. Andrew said; “We were going through the phases with Ann Marie and Cheryl, and they always say that you should go at your own pace and not to feel pressured if you feel that you’re not making progress. By happy accident, we were doing exchanges and on one occasion he bought over a coloured ring binder and tapped me on the chin so I said it was yellow, so he learned that items could be labelled, in this case, by colours” And while this was a breakthrough, it became clear that Olly was displaying a natural curiosity that is like other children at the same age, but he just had a different way of asking the question. Andrew continued; “Ann Marie and Cheryl suggested that it was similar to any other three or four-year-old with the same curiosity. So that is his thing – he endlessly asks us what things are. And we can’t deceive him. He knows that a yellow thing is not a green thing. He has learnt how to link words and objects. In doing so, he’s learned things like the first six letters of the alphabet on a typewriter, which we think is incredible. He can recognise the keys in a sequence – Olly does like sequences, and patterns which is not unusual.”
Olly has finished the ten-week programme, but that hasn’t stopped him using what he’s learned through SWAP and it’s continuing to support his development. Andrew said; “We’re still using PECS. We’re using what we’ve learned through SWAP and that is also used by his nursery at RJ Mitchell. He’s still working on phases one and two of SWAP at nursery. He’s able to do that and we’re going at his pace, but the fact that he knows colours and labels and descriptive words is good for the later stages of PECS.” Andrew and Carley are hoping that what they are doing at the moment will have a genuine long-term benefit. Communication comes in many forms, as Andrew explained; “Our goal is that he can express himself. We don’t really mind what form that takes, but our priority is that he has a form of communication. Our aim is that Olly can be as independent as possible, with a method of communication that he can use to express himself and that we can use to communicate with him. It doesn’t have to be speech.”
One thing is for certain, that Olly will benefit from the support of all his family on his journey. From the experience of supporting his older brother, to the new elements of daily life on the spectrum, Olly’s parents are well equipped to support him all the way, especially now that Andrew has been able to attend the sessions with Olly. He said; “I had a desire to learn myself. My wife Carley has learned a lot with Riley, and it was fortunate that my shift patterns worked, but it means that I was able to equip myself with what I needed to know, and it took some pressure off Carley, which was important as she was able to relax a bit. She is a member of the SWAP parent group on Facebook, so she was able to watch the videos in her own time and we’re able to work together on that. Carley has a support network, with her friends and her family who are local, so by me attending the parent sessions, when we were in a group, that provided a support network to me and that was important because my family are all in the north, so it was nice for me to have a support network of my own. We thought that was important as well.”
Clearly, the combination of a strong family unit and the support of Speak With A Picture is a recipe for success! Andrew was adamant that the SWAP programme has been an important factor in Olly’s progress. “SWAP has helped. It’s opened up a pathway for us to know about PECS – granted we have a long way to go before we get to sentences, but we have the resources and the trust, so if we need new symbols or a quick refresh, we can go back to Cheryl and Ann-Marie. There’s less panic around the house - we have a better idea of what Olly wants and how we can meet that, and that’s important. We’re a lot less worried that we’ll miss something because he’s able to communicate.”
