Inclusive Events for Families Raising a Child with Autism in Edinburgh
A story by Tailor Ed Foundation
We delivered a range of regular short break activities for children with autism and their parents who stay in Edinburgh.
These included monthly soft play sessions for children, family fun events such as a Ceilidh, parties and dining experiences, and coffee mornings for mum’s and nights out for dads.
What Inclusive Events for Families Raising a Child with Autism in Edinburgh did
In total we organised 34 events for 566 participants. These were delivered in various venues/facilities across Edinburgh. Our aim was to offer different breaks for children with autism, their parents/carers and to compliment these by running some family events.
We delivered 11 softplay sessions for children with autism, 8 Coffee mornings and 3 group events for Mums, 4 Dads group events, 5 Family Events (A Christmas Party, 1 Celidh, 3 Family Fun days). 2 Cinema Events, 1 Dining Event.
These activities were aimed at families who had a child(ren) with autism aged between 4 and 16 years. We promoted each opportunity to all the families whom we supported at the time giving them the opportunity to take part in breaks that best suited their needs.
We developed new partnerships with a range of services, some of which have been sustained and are ongoing. For example we now have a permanent arrangement with Time Twisters (Soft Play) for an Autism friendly session on the last Wednesday of each month for up to 2 hours.
We have also worked closely with other groups such as Leith Community Cinema (LCC) to enable our families to access a cinema experience for their children. The only problem is that LCC do not run regular programmes.
We focused on the following Better Breaks priorities, complex needs, sports and active leisure, Independence, diversity and supporting under 5's.
This was the first time we had delivered a programme of breaks of this nature so it was a learning experience for both ourselves and the families whom we support.
The overwhelming feedback we received from parents was that it was a great success.
"My partner finds the dads night out a huge support. I think Dads in particular struggle to access. Me and the girls enjoy the time twister sessions and we also go along by ourselves as a family more often. R really enjoyed seeing Callum (his project worker). I've even been on a Mums nigh as I rarely go out."
What Tailor Ed Foundation has learned
Project planning, our new programme to develop a range of break activities worked. On reflection feedback suggests this is because it was offering tailored activities to suit different beneficiaries needs. It was consistent for example, parents (and children) knew it was on the last Wednesday of each month at 4.00 at Time Twisters. We are delighted that so many families now regularly attend each monthly group and it is clear that parents do not view the soft play as a one off activity but one which their child can take part in each month.
At first our staff facilitated the parents group but fairly quickly some parents took over helping to arrange the formal group meetings but also organising additional sessions to suit themselves. This has also benefited more parents/carers because due to the flexible nature of their caring responsibilities not every parent can attend each session at a fixed time each month.
Targeting families most in need of support, whilst the priority for the soft play sessions was children with autism, parents told us these opportunities benefited the whole family. Parents told us it was great they could bring their other children so experience the break all together rather than having to organise separate activities.
Reaching out to and engaging with new families, when families got in contact to ask if their child with additional support needs could attend the soft play sessions we double check with Time Twister if that was okay. It was agreed this would be okay. A number of new families (20+ children with additional support needs benefited) on reflection we have learnt that we need to capture some relevant information about these new families.
Developing new short breaks activities, whilst we have always supported children with autism and their parents, in 2018 we introduced a new service model built on intensive support for children with autism in the pre-school year. Consequently as part of this process we introduced short break family fun days exclusively for this age group and the families.
We learnt from these age restricted events that they are beneficial especially to children and families who may not have taken part in such social and recreational before. Children who struggled with groups and therefore have had little experience of group activities found them enjoyable: they were not too busy, all the children were approx the same size and age, their parents/carers were visible as were our staff whom the children knew.
Parents told us they found them really beneficial, partly because it was the first time their children had happily played in a group and partly for some of the parents it was the first time they had met other parents in similar situations so there was a sense of shared experiences and mutual understanding. "I really have enjoyed the chance for Zoe to play with other kids with ASD, both at the fun parties and the time twisters play sessions."
Partnership working, we are learning more about working in partnership or at least more closely with other organisation/facilities. Over the grant period we came across the full range of experiences, Time Twisters have been brilliant and have really bought into our work and crucially the children and families have really benefited.
Leith Community Cinema (LCC) have tried to help. However the Community Cinema is not a regular service therefore it is more difficult to create a permanent consistent partnership. Unfortunately they partnership with Hard Rock Cafe to provide autism friendly dining experiences fell through. They could not provide a time that was really suitable for children and their parents therefore we decided it was not worthwhile to continue this partnership.
Dealing with unexpected challenges or opportunities, when we first informed parents when and where the breaks were being held e.g soft play sessions, family days, parties one issue that cropped up was that some families had transport issues. which would limited their child's participation. Yet this issue was was overcome for most parents once they attended one event.
They would meet other parents and as a result of new friendships families would offer lifts to other families. This not only enable those families where transport was an issues to attend our organised events in our annual survey completed in April 2019 a number of parents told us as the result of new friendships which included a lift, this had opened up more opportunities for their children to take part in other community based activities.
How Tailor Ed Foundation has benefitted from the funding
During the Better Breaks funding period we have established a number of new partnerships, Time Twisters, Ceilidh Kids and Leith Community Cinema. This has helped us offer more tailored opportunities to the children and families we support. Although it is relatively early these organisations have also said they have a better understanding of the needs of children with autism and hopefully will adapt their services to more effectively meet those needs. At the same time we ran the Better Breaks project we were rolling out a new service model. For example an intensive preschool year home based service, we complimented this new service by organising some of the break specifically for these families which as we described has proved very popular. By giving us the capacity to offer new opportunities for both children with autism and their parents we have been able to effectively support the needs of more children with autism and their parents especially those new families who were accessing support from us for the first time. The grant has contributed to securing the future of Tailor Ed Foundation our grant was split into two parts just in case we were not around in October/November 2018. We are delighted to inform you that since our award in June 2018 we are now in a far more more healthy stable financial position and we have secured a significant of grant including some multiyear awards from, Key Family Trust £5,000, Scottish Government £20,000, National Lottery £40,000 x 3, KPE4 £15,000, Christina M Hendrie £7,500. Chance to Flourish £20,000, Henry Smith Trust £30,000 x 3 and R S MacDonald Trust £30,000 x 2. Finally the experience of the past 12 months delivering the Better Breaks project has helped develop our skills, knowledge and capacity, helping us learn more about partnership working both the benefits and pitfalls, helping us to capture the benefits of breaks to parents who accessed our new age specific preschool Early Years Service
We will provide an increased number of opportunities available to at least 100 families raising children with autism and these events will occur on a regular basis. Children with autism will have the opportunity to meet other children.
By organising 34 different events for 566 attendees we have successfully achieved this outcome. Part of this new programme has now become a permanent part of our support services to children with autism and their parents including monthly soft play sessions. We offered autistic specific session at the soft play centre and this approach helped reassure children and their parents that their child could take part in such activities. Consequently as parents are more confident that their child can cope with such an environment they are now taking their child along to open sessions as a family. This can be a big step because for some of the children whom we support this may be the first time they will have gone to such a play opportunity with other children By tailoring support to the children taking into consideration the impact of autism has on their issues about accessing activities we enabled them to overcome such issues and it was not simply a matter of organising an event/break.
Ben loves ceilidh music but can't manage a busy environment. His mum got in touch when she saw our ceilidh advertised and came in to discuss how we could make it accessible for Ben. We talked about what Ben would find enjoyable and what would be difficult about the event for Ben. We looked at a floor plan of the venue together and identified a space they could use where Ben could hear the music and look in on the dancing when he wanted. We planned for Ben to arrive a little early and for a familiar member of our staff to meet them outside and show them in to the space identified for them. Ben could also watch the videos on our I-pad we made of our staff demonstrating the dances ahead of time. Ben and his parents had a great time at the ceilidh and did some of their own dancing. The provider we partnered with for this event (Ceilidh Kids) has taken on lots of the inclusive practice ideas from our event and indeed Ben attended the family ceilidh she ran in the new year.
We will provide increased opportunities to a range of carers and parents over the year at times and locations which are accessible to them. Networks of parents will be established as a result of the opportunities given. We will see an increase in parents/carers attending our breaks.
We have also successfully achieved this outcome. Both the Mum's and Dad's support groups have become very popular: these separate groups have been shaped by the parents who are attending them in terms of time and venues. We have organised Coffee Mornings in a cafe in the centre of Edinburgh which is most convenient for Mums, these tend to be during the day and help the Mums develop their friendship circles. Dads groups tend to be in the evening around the City centre, perhaps taking part in a quiz night. Parents are finding these peer support groups offer breaks at times which suit them and their families.
One of the mum from our Early Years Service had told her child's Project Worker that she feels quite lonely and isolated and that she tries to make friends in Edinburgh but she finds it very hard. She feels that other parents do not always understand what she is going through with her child who has a diagnosis of Autism. Our Project Worker encouraged mum to come to one of the coffee mornings so she can meet other parents. Mum came along and she met parents who were sharing similar experiences to her and were open to chat or give her information about social work, other services etc. At her first visit Mum exchanged numbers with two other mums and as well as becoming a regular participant at the Coffee mornings Mum has now made lots of friends who have been going out either on their own or taking their kids to the park and other activities together. Mum feels less isolated and often mentions how much she admires those women who have older kids than her and are managing so well. This has reassured that there are effective ways to support her child. Breaks such as coffee mornings which benefit Mums have also had a positive outcome for the children as Mums who have made new friends are more confident about organising play dates together.
Parents/carers will report that they are more confident and resilient in their carer role as a result of having wider networks and increased opportunities. All of our breaks will ensure that they have the capacity to fully participate in the extra challenges of supporting their child.
As well as organising more breaks for children and families we were keen to provide breaks specifically for parents because we were constantly told in surveys were really important. These were organised to remove most of the barriers facing our parents: coffee mornings ran when a child was at school when Mums had windows of opportunity to come along to meet other Mums. Alternatively Mums nights supported those Mums who found it hard to attend during the day. Similarly we found nights out was the best time for most dads. Last year we introduced breaks of this nature for parents of our new Early Years service which meant all the Mums and Dads met other parents with children in the preschool year. As most of these parents were accessing support for their children from us for the first time, this was in many instances the first time they had accessed support for their own needs.
One of the Dads of our Early Years service felt he didn’t have other people in his social circle that would understand his daily life and challenges. They would not understand the challenges or impact of his child's long tantrums, difficulties of toileting, sleepless nights etc. At Dad's night he met two other Dads that also have children with Autism that are a bit older and immediately struck up new friendships. He usually do not have the time to meet outside Dad's nights but they speak and support each other on a weekly basis via social media to share their experiences and according to his wife chat about "dads" topics.
A minimum of 100 children will be able to access more tailored opportunities but some will also be able to access mainstream opportunities using skills learned at our individualised events. Families will become part of a community where they feel understood and supported.
Many parents we support often tell us they feel isolated, even extended family members struggle to cope with the presenting challenges of their child. This often means parents find it almost impossible to take part in events/breaks which would benefit their caring role. By providing a range of opportunities at different times for parents and their children to take part in breaks we successfully addressed some of these issues: as well as benefiting individually (either parents or children) our programme enabled parents to meet other parents who were either facing similar challenges or who were further along their journey and in both cases parents could share experiences and peer support. By learning from each other parents gained confidence about supporting their own children to access such opportunities or they could see how their child was coping in such situations which often gave parents the confidence to take their child to more activities either on their own or with others.
One of the successful outcomes from the soft play Time Twisters is that the sessions gave opportunities for Tailor Ed families to get to know each other and offer mutual support. This meant that whilst their children were enjoying playing the families will come and sit together. As a result of this new friendships were made and often practical solutions were addressed. For example transport can be a problem for some of our families because their child may not like public transport. Now it is quite common that one parent will come and pick up another family that doesn’t have a car since Time Twisters can be a bit far away. There are other occasions that those parents will be socialising outside time twisters and have come to other Tailor Ed events together (e.g. coffee morning). Parents then tell us that as they can get to the soft play more often with their child or are able to attend one of our parent sessions this helps them and their child's relationship.
Additional project outcome
Families with a child with autism and siblings report being more able to take part in family activities together. Once families started coming along to the Time Twister soft play sessions on a regular basis we noticed that some started bringing all their children, not just the child with autism.
One of our families have three children with the middle child who is 4 with autism. At first Mum came along just with her son but after seeing how well he coped and what activities Time Twister could offer she asked if both her older child (aged 8 yrs) and youngest child (aged 2 1/2) could also come along. They were delighted when we said yes and have now attended each session. They have turned the 2 hour session into a full family outing. In fact a couple of times they have asked if a couple of cousins can join in. Again we said yes: as it is very clear that the 4 year old has blossomed as we were told this has been the first time he has been able to enjoy joint activities with his siblings and extended family. Mum and Dad told us they are now far more confident about their son's ability to cope and engage in family activities.
Additional project outcome
As a result of Time Twister publicising the autistic friendly sessions and increased activity on social media we were approached by other families with children with additional support needs who asked if they could bring their disabled children so they could also benefit from these activities.