Inclusive Events for Families Raising a Child with Autism in Edinburgh
A story by Tailor Ed Foundation
Our project was aimed at children with autism and their families who live in Edinburgh. We provided a range of activities for children such as soft play sessions, fun days and a separate programme of respite opportunities for parents including coffee mornings, quiz nights and social events
What Inclusive Events for Families Raising a Child with Autism in Edinburgh did
From April 2019 to start of March 2020 we delivered BB activities that covered all three priorities:
Children with autism saw 11 additional soft play Soft Play sessions, Families - 2 Cinema sessions, 2 Party's including our 10th Anniversary, 2 Family Fun days
Parents only: 14 parents social events (7 for Mums & 7 for Dads)
These events took place in and around Edinburgh. The Soft Play sessions ran for two hours on the last Wednesday of each month at Time Twisters
Our fund days and Party's took place in central Edinburgh - our 10th Birthday Party was organised in Norton Park Business Centre (next to Easter Road Stadium)
The parents sessions took place in numerous coffee shops, bars and restaurants which were identified as suitable and convenient by parents..
In total 52 children with autism, 45 siblings, 111 parents and 14 extended family members took part in at least one of the sessions: many took part in far more.
Each month we send out a monthly newsletter to all families on our support network highlighting events and opportunities we would be running in the following month. Some events such as the additional soft play Soft Play were a permanent fixed date in our calendar so that parents could plan their attendance. Whilst the children had fun time playing parents would sit in the small cafe and have a chat & cuppa with new friends.
Parents events were organised and venue selected by parents who attended the previous event. We also created a closed Facebook group to gather parents thoughts and suggestions which worked really well.
In terms of the 10th Birthday Party we contacted all 320 families whom we have supported in the past decade: some had moved out of the area weren't able to attend, lots of existing families came along, and we were delighted when some families including a number from our very first year came along: their children are now young adults with autism.
All our events for different reasons were a great success. The soft play sessions are the first time many parents with a young child with autism had attended such events. Parents loved we organised time just for them. It was fantastic over 50 families attended our birthday party.
What Tailor Ed Foundation has learned
This project reinforced so much learning we have accumulated over 10 years. It is clear that new families, who may be struggling to accept their child’s autism diagnosis, appreciate and benefit the opportunity often for the first time to meet other families with similar lived experiences. The additional soft play Soft play sessions for example were the first intervention a couple of families with young children with autism had with our organisation.
Consequently as they got to know our staff and gained in confidence about our other services they have started to access our more intensive Early Years service. At the same time through our Early Years some families who first accessed individual support have subsequently gained the confidence to attend group/family activities.
Generally our grant was for normal costs like staffing, venue hire, activities. However we piloted offering support to families who find transport a barrier to participation in events. This has worked really well as families used it for taxis to regular soft play sessions and the Family Fun Days and Parties.
One of the unexpected outcomes we have experienced has been developing a new online approach due to the impact of COVID-19. The complete change to online services has given us clear evidence that some activities such as group activities or parent support can be delivered effectively in this manner. We are continuing to learn how to deliver such new approaches but based on this unexpected opportunity we are planning to continue to deliver similar services in the future as well as returning o our prove face to face approach when it is safe to do so.
In terms of funding we are delighted to report that in the past 12 months we have secured, for the first time in our history, Local Authority grants. East Lothian have given us £10,000 towards rolling out our service across their authority. Even better, City of Edinburgh Council have told us that a three year £24,000 pa grant has been successful: this award has to be ratified by the Children and Family Committee.
Finally as these services have proved so successful we fully intend to continue to deliver them in the future and are actively seeking funding to ensure children with autism and their parents needs for short breaks are met. We take great pride in knowing the level of demand for support in Edinburgh from families with a child with autism and ensuring all our events are based in large enough venues so we never have a waiting list from parents.
How Tailor Ed Foundation has benefitted from the funding
It appears to have helped strengthened our reputation especially with local authority staff as evidence by East Lothian Disability team approaching us directly to support families with a child with autism in the authority and The City of Edinburgh Council contributing to our services for the first time ever.
100 children have attended an event that they’ve enjoyed alongside peers, Run 12 monthly additional soft play softplay sessions and run 4 community cinema screenings , 4 family days , a party and a Ceilidh
We delivered 11 additional soft play sessions with an average of 25 children with autism taking part in each session. Numbers started at around 20 children with autism but by the February numbers had increased to over 30 per session. We delivered numerous family session including 2 autism friendly cinema sessions, 2 Family Days and 2 large Parties including our 10th Birthday Party with over 100 attendees. Although we organised a ceilidh, due to different issues on the day such as children being unwell only two families were able to attend. Even so the children and parents had a lovely afternoon taking part in traditional Scottish dances. In March all our face to face work had to close due to COVID-19. This meant our Soft Play session didn't run
Child A was 4 yrs old with autism and had recently started in our Early years service. During a visit her Mum explained that her daughter loved to to play with other children. Her parents had taken her to a large soft play centre but the little girl found it too noisy and they had to leave early as their daughter was quite distressed. Our worker suggested coming along to our Time Twister session which he organised once a month. Mum agreed to take their daughter along and leading up to the visit our worker spent time explaining the play session and assuring the little girl he would be there. When Mum and daughter turned up at the play session, at first the little girl was quite nervous until she saw her support worker. By the end of the play session the little girl was happily playing on the soft play, Mum had met another family who stayed quite close. Since then the little girl and Mum now attend each session every month and the little girl is not worried if her support worker is around or not.
200 children have enjoyed a leisure experience accessible to them, run 22 events that include accessible and motivating activities for children
We clearly achieved this outcome as over the year we provided a range of accessible activities that children with autism and their parents attended in large numbers time and time again. We take huge pride we never have a waiting list for such services. The parties were an outstanding success and as well as the obvious benefits of enjoying party games, playing with other children parents told us of some of the hidden benefits. For many of the children our 10th Birthday Party was the first time their child(ren) had ever attended a birthday party due to issues with noise, food, inaccessible party venues and/or other families/children being unable to cope with their child meant they either never got invited or parents had to kindly refuse. Therefore many of the children were so excited by their first Birthday Party and this also gave their parents a huge sense of achievement by seeing their children enjoying themselves and taking part in an activity other children take for granted.
One of our families with 4 year old boy with autism were finding it hard to accept the formal diagnosis. Consequently when we first started to support them they had no engagement with the wider autism community. Family members have ESL and English is particularly difficult for the mum. The family have a new baby so taking the bus was very challenging with just the mum as dad is often at work. Child’s P1 placement was reduced to just an hour a day due to problems in the classroom, especially with peers. School were worried he’d have issues at Time Twisters. Nevertheless we let Mum know that we could cover the cost of using a taxi to get them to the soft play session and encouraged her to come along to see who her son got on: from their first visit he really enjoyed it. His family now attend many of our events as this is the only opportunity for play with other children the young boy gets.
Parents report feeling supported and experience benefits from attending our events, run program of 22 family events and run 12 parent specific events
As well as parents benefiting from the family activities as detailed above we ran 14 parent specific events. These consisted of coffee morning in central coffee shops which Mums were able to attend whilst their child(ren) were at school, social nights out for Mum and Dads night which tend to take place around quiz or pool nights at a suitable pub in central Edinburgh. It is clear all of these parent only session were really beneficial for parents: it enabled them to get time for themselves, socialise with their peers and improve their own wellbeing. One interesting aspect of the parent only events has been since COVID-19 struck and families have gone into lock down. We have continued to run activities for parents only including coffee breaks and quiz nights. Parents are taking part and enjoying this short break – an interesting comment has been that these type of opportunities are easier for some parents to take part in, as they are still at home if their child needs them.
One of our dads used to regularly attend social events for parents in the evening how ever due to a change in his job he was no longer able to meet other dads. When COVID-19 struck we contacted all dads to ask if they would be interested in online quiz nights: he was the first to let us he know he would be. He explained that due to having to look after his child he cant get out in the evenings but an online opportunity was perfect: he could join in, but still be at home if his child needed him. He told us so many people don't understand that when his son is not at school he cant access a short break for himself: he was exhausted looking after his son 24/7 during this lock down. He thought the online idea was great and really enjoyed the break
Parents report feeling supported and experience benefits from attending our events, hold 4 Coffee mornings linking parents to other relevant supports Provide 34 opportunities to socialise with families/parents in similar circumstances
Whether it was the soft play sessions, family events or the parent only events one of the clear messages we have got back from parents is that all of these activities have helped parents sustain their caring role. Parents have made friends, had time out for themselves and of course talked to other parents with lived experience of bringing up a child with autism. Parents have taken away different things from every event they attend. These opportunities have been so valuable for parents despite not receiving a grant from Better Breaks to run them in the next 12 months, we are actively seeking alternative funding to sustain and develop these benefits.
As described in outcome two: some families find the formal diagnosis of their child's autism a challenge and feel reluctant to engage with others in similar situations. This family found the one to one intensive home visits very beneficial as we helped the family improve their understanding of their child's needs. When Mum started to take him to the soft play sessions and our other events she gained more confidence by meeting other families, as her language was a barrier she brought along a friend who was able to translate. This has helped Mum feel more supported and less isolated.