Nothing is more important to the development of the child with autism (ASD) than a strong family and an extended circle of support from siblings, relatives, neighbours and friends. While specific teaching, therapies and interventions impact on positive personal development, there will be no greater influence on the progress of a child with autism than to be absorbed into the everyday life of the family and community. This was borne out in summer 2013 by the introduction of the successful pilot project ‘Activity August’.
Like other services, St Paul’s, a service for children with autism, has found itself challenged in terms of insufficient staffing and stretched resources due to budget adjustments. Traditionally, the service facilitated parents by providing a summer programme each year, run by St Paul’s staff. This year it was decided to explore a new pilot project for the month of August, whereby parents were invited to participate in activities and outings alongside their child. ‘Activity August’ placed a greater focus on parental involvement and empowerment, with parallel support by one member of staff from the service. The project aimed to promote collaboration and partnership between families in organising and/or participating in fun outings, exciting activities and enriching social experiences in the community.
St Paul’s looked to other services for advice and ideas before initiating the pilot project. Mary Rush, Community Nurse from the Daughters of Charity Service, Navan Rd, shared her experiences which helped inform the framework for ‘Activity August’.
Then began two months of planning and liaising with the eleven families who would be participating . One staff member from St Paul’s acted as coordinator, to develop a fun timetable of chosen activities for the families to attend every 2nd weekday throughout August.
Support by the local Community Garda was recognised to be a great benefit in terms of free bus transport for those families who availed of the facility. Families also car-pooled and worked together. All were welcome to attend, including other family members, neighbours, volunteers and friends, whose role was crucial to the wellbeing of the child and family in terms of practical and emotional support.
Excursions included the usual favourites: Tayto Park, Rathbeggan Lakes Activity Centre, Butlers Chocolate Factory, Ardgillan Castle & Playground, Lullymore Heritage & Discovery Park, Imaginosity (Sandyford) and Dublin Zoo.
As part of a planned feedback, by way of a post-project questionnaire, parents expressed their delight at seeing their child being able to participate in many fun environments in the community, whilst interacting together as a family. Others saw it as a trial run for future ventures and a boost to their confidence in bringing their child/teen out with the support and reassurance of other families, who shared the same experiences. Parents expressed great satisfaction at seeing their child’s achievements and felt better equipped to manage their child’s behaviour in public.
The use of visual supports helped to make Activity August a great success. They enabled each child to make choices and to understand where he/she was going and what was happening next. Each parent wore a ‘bum-bag’ containing pictures relevant to the day, e.g. the venue/activity, a ‘please wait in line’ cue card to guide the child through the queuing process, food pictures or activity pictures, all of which encouraged requests and helped maximise understanding and participation.
Because spoken language is transient, but pictures and symbols are permanent and visual which help the child with ASD make greater sense of their environment. Along with visual supports, Activity August also provided opportunities to communicate through gesture, speech, LAMH signing, VOCA (voice output communication aid), objects of reference or through the written word, whatever communication method was best understood by the child.
Activity August also helped promote social development and enabled the child/teen to further develop skills such as regulating emotions, demonstrating socially appropriate behaviour in various settings and to interact and have fun outside of their usual circle. One such example is where those usually uncomfortable around small children, perceived as noisy and overwhelming, began to adapt in the presence of the smaller child during picnic time and bus journey rides. Strategies used to self-regulate, when necessary, included seeking out personal space for brief periods. In short, Activity August helped the service users learn a little more about the concepts necessary for appropriate interaction:
■ waiting, sharing, turn-taking
■ personal space
■ how to give and ask for help
■ meet and greet
■ recognising and expressing own likes and dislikes – when they want an activity to start, continue or stop
■ ‘what’s next?’
■ adapting own behaviour to social situations and following social rules
■ recall and use of coping strategies.
The children weren’t the only ones having fun and making friends. Participation in Activity August provided parents with the opportunity to meet and get to know other parents who shared similar challenges. They shared stories over a cup of tea or while pushing a swing and became a great source of practical support, sharing tips and information and providing a sympathetic ear.
Another positive feedback from the parent questionnaire was the huge benefit of having siblings present. It was observed that siblings of children with ASD tend to be very tolerant, with remarkable understanding, patience and maturity in their dealings with others. One such example during Activity August displayed this, when one sibling became great friends with one of the children with ASD and really took her under her wing. Siblings proved to be very good playmates for some of the children and also bonded with each other. One parent commented that it was almost therapeutic for her son to observe other siblings with their brother/sister with autism and know they weren’t the only ones with a family member with greater needs. Siblings demonstrated tremendous comradeship, leadership and pride as they helped their parents ‘look out’ for their sibling, have fun with them in a group situation and get to know other children with autism.
Other key themes that arose in the parent feedback questionnaire included:
■ Despite attending various training sessions with the multidisciplinary team in St Paul’s, parents still found it difficult to put the knowledge into practice. Having a staff member present to reinforce the principles and help apply it in the context of everyday life proved beneficial. Parents could see the visuals used in many settings, at the right time and place. Strategies to help support the management of behavioural issues were also reinforced, e.g. low arousal approaches.
■ Parents felt supported and grew in confidence, taking positive risks where they stepped outside of the child’s (and indeed their own) comfort zone, participating in activities that may previously have been avoided. Some articulated surprise to learn they had in fact under-estimated their child’s coping abilities. Other parents were impressed to discover an ability they were unaware of in their child, e.g., an awareness of rhythm and music or the ability to wait nicely in queues with the use of visual supports.
■ Parents were introduced to new venues, theme parks, play centres and farms that they could return to with their child and family in the future.
‘Activity August’ ended on a very positive note with a barbecue party for the staff of St Paul’s and participants (families and children) of the pilot project. It was an afternoon of fun and games and delicious food. There was face-painting, balloon art, dancing and party games for both adults and children. Each family was presented with a mini-album of photographs, to have as a visual reminder of the good times had by all.
Analysis of this pilot project has proved very positive, both from an organisational perspective and based on parental feedback. This model of summer programme strengthened St Paul’s links with families, increased parental empowerment, interaction and networking. It also supported a culture of open communication and partnership. Activity August helped to acknowledge and share good practice and ensure children with autism are proactively integrated into the local communities where they live with their families. In light of these benefits, it is hoped that this new model of summer programme will be run over both July and August for the coming years.