What's happening at Down's Syndrome Scotland

Down's Syndrome Scotland has been delivering ABC (Achieving Better Communication) groups for over a decade. ABC provides sessions for small groups of children and young adults with Down's syndrome. The sessions incorporate Makaton signing, songs, stories, sound work and literacy skills. Before the pandemic we had four tutors delivering sessions in venues across Scotland. I had recently set up the inaugural First Steps (0-3 years) groups in Glasgow and Ayrshire, while the ABC Main Programme catered to children from 3-18 years. ABC sessions ran throughout the week, term time and involved children and young people being brought to their ABC venue by their parents. Sessions typically lasted from 30 minutes to an hour and catered for up to four children in each session. Sessions were highly structured and followed the same pattern each week, allowing for real learning to take place and for new words, sounds, language structures and signs to be learned through copying and repetition. As a charity, DSS uses Makaton signing and symbols as an augmentative form of communication, while supporting families to use whichever signed or visual form of communication they use in their own local authority. ABC was popular with families, but as a service, we knew that we would like to expand, and that to make a significant difference in the lives of the children we worked with, we needed to somehow work with schools. We didn't know it at the time, and like everyone else, we thought the global pandemic was shutting us down, but it actually allowed ABC to find an alternative way of working and to reach a wider membership than ever before.

ABC online

The ABC Team previously consisted of four tutors working across Scotland—myself in Glasgow, one based in Orkney, one covering Aberdeen and Angus and one in Edinburgh. We were a disparate and geographically disconnected team who rarely met up or had the opportunity to share ideas and best practice. We had about 80 children accessing our service and a lengthy waiting list of families desperate to join up.

Then the pandemic hit, and sessions suddenly stopped. We had no concept of how we would continue to support the children and families who relied on our weekly input. We worked with children aged from babies up to 18 year old school leavers. The little ones needed tactile stimulation and sensory experiences, as did many of the children and teenagers we worked with. Objects were continuously explored not only with many small, grasping hands, but with mouths and teeth and tongues too! How could we possibly deliver our ABC sessions through screens?

We practised just that. Not being a natural technophile, I had to throw myself into the world of online delivery. I started by engaging families in a Makaton workshop. In the early days of lockdown, we were all so desperate to take part in this newfangled activity that I regularly had ten or more families sign up with their little ones to access a Makaton sing and sign session. Once we all got the hang of the mute button and the social etiquette surrounding online workshops, this delivery model went from strength to strength.

Since then, our ABC Programme has been transformed through innovation and adaptation. We now deliver weekly term time sessions to 130 children and young adults up to the age of 25 across the length and breadth of Scotland, and our waiting list is a thing of the past Where children used to come to their ABC sessions at venues across the country, with those who lived rurally and remotely either enduring a lengthy car journey, missing a morning or an afternoon of school, or not able to access ABC at all, we now have children accessing sessions from all over Scotland—from the highlands and islands in the north, right down to the Borders and Dumfries and Galloway in the south. And the issue of missing school is another thing of the past with the majority of our ABC attendees now actually accessing their ABC session from nursery or school with their own support assistant. This form of delivery has many positives. It is less disruptive for families, children and schools, with teachers now able to see, learn and implement ABC techniques first hand. Children are placed in groups with others from all over the country and can forge relationships with peers at a similar communication stage. Some children who live rurally have no-one else in their community with Down's syndrome and this positive interaction has been an added bonus for families. We do not envisage a return to the old ABC model and the days of a lengthy waiting list to access our services. That said, we are acutely aware that ABC online is not for everyone.

Some families and schools struggle to commit to their weekly time slot. Schools are busy places and often find it hard to find the quiet space and one-to-one support that children need to access their session. Higher than average educational staff absence has impacted on children being able to take part in their ABC sessions. And, innovative as our ABC tutors are, some children just cannot engage in an activity for half an hour in one sitting, especially on a screen. In response to some of these challenges, we have developed another option to offer more flexibility to families, schools and nurseries: ABC Anytime.

ABC Anytime

ABC Anytime is our pre-recorded ABC Programme for 0-12 year olds. We have four different stages, mirroring what we do in ABC live online sessions—First Steps (age 0 to 3), First Words (age 3 to 5), Next Words (age 5 to 7) and Beyond Words (age 7+). Recordings are made weekly by ABC tutors, following the same session plan used in live sessions: hello song, oral motor exercises, sound work, picture and word matching and a song/ story activity. The peer communication aspect of the session is encouraged by suggesting that schools use the sessions in a small peer group and pause sessions to stimulate conversation and interaction. Top tips on how to best access the session are provided with each video, and printable resources along with interactive topic related Wordwall games are sent weekly to ABC Anytime families and schools. When we started ABC Anytime, we thought it would be a short-lived solution to the pandemic lockdown, but in fact it has become

About the author

Katy Lironi is ABC (Achieving Better Communication) Lead and Makaton Tutor at DSScotland. She is also mum to five teenagers and young adults. Matilda, her middle daughter, is almost 19 and has Down's syndrome. Matilda has accessed ABC since she was eight.

a popular and expanding area of the ABC delivery model. One school struggled to have enough staff each week at the same time for a group of 3 children who accessed their ABC session together. After struggling on for some months, with many missed sessions and parents becoming increasingly frustrated, it was decided by all concerned, the school, families and the ABC team, that we would give ABC Anytime a try. It has worked well for this school and group of pupils, who are all at the Next Words stage of communication. The school prints out the resources each week and posts encouraging pictures on social media showing the children actively engaging with the printed resources for matching and sequencing, the recorded session which is shown to them on the large smartboard, and their support assistants who are working alongside them.

ABC Anytime for Schools and Nurseries

After seeing how schools are using the ABC Anytime programme, we are in the process of developing ABC Anytime for Schools and Nurseries, which will be the same as the videos we record for individual children who are signed up to the ABC programme. The concept for ABC Anytime for Schools and Nurseries was developed out of a conversation with a former primary school teacher who said she would love to have all the resources for ABC available to help her work with her pupils, both those with and without Down's syndrome.

What else is new?

ABC Next Steps sessions are now available for 18-25 year olds, incorporating literacy and communication. At the other end of the scale, we have begun Makaton for Babies, a six-week course for parents and their babies aged 0-12 months, online. We also have CHOIR 21 for members aged 10+ to share our love of singing and Makaton signing. Young people meet up weekly to sing and sign along to their own choice of music.