Summary
Play-Sense is for parents/carers to get a break from their caring role whilst their children with disabilities develop communication and motor skills. During Covid restrictions some activities were delivered remotely via digital platforms to ensure on-going support, development and connectedness.
What Play-Sense Play Group & School Holiday Project did
At the start of the year with Restrictions in place, we provided time out for parents/carers from their daily role via
the 4 parent/carer WhatsApp groups - Play-sense Keep Talking, Play-Sense Transitions, Autism Support Hub and Parent Carers Connected, Zoom meetings and activities including mindfulness, and expressive arts, and digital photography classes,
We had over 25 training courses for parents including a course in Cantonese & Mandarin - beneficial to this community to gain a better understanding of their child's condition and behaviour and providing coping strategies to improve the quality of life of the whole family.
We provided hidden disability lanyards to those who needed them to allow the children to freely explore outdoors and reduce stress of carers caused when masks were mandatory.
As restrictions were lifted we re-introduced face to face sessions and the children participated in development opportunities via indoor and outdoor play with sensory messy art, a bubble machine crawl tents and parachutes.
Parents have also enjoyed time out without the children including barge trips, sailing trips, and plant- based cooking. Our parents' breakfast cafe resumed as well as visits to the allotment where we held a BBQ.
We have run several visits to a new soft-play facility which provides a dedicated space for our group as well as a local Sensory Hub where the children can enjoy a obstacle course and a large sensory space
Parents and children have been able to use the on-site sensory room by themselves or a trained careworker will look after the child to allow the parent/carer to have a cup of tea or coffee with staff and discuss any issues they are experiencing
What Glasgow East End Community Carers Ltd has learned
The project had to be flexible and adaptable during the Pandemic as the restrictions changed and the activities that we could provide carers could return to personal interaction rather than remote. Additional risk assessments were undertaken and new Covid secure protocols had to be put in place. There was a need to closely monitor the budget and allocate resources to meet the needs to carers. We continued to receive self-referrals via a link created on our website as well as from referral partners such as the Child Development Centre, with whom we shared information and findings. As the referrals arrived, we engaged with these individuals to establish their needs and find appropriate activities and / or training courses to assist them and alleviate some of the stress they were under. Carers were involved in the design of activities, some of which evolved out of training sessions – E.g. Creative photography morphed from a course to show carers how to get the best out of their mobile phone / tablet. We learned more about some of the marginalised groups in our community and how cultural differences restricted their pathway to assistance. This was evident with the Chinese community and we developed specific Autism training courses for these parent/carers, the additional costs of which were sourced from the local authority. We also had to adapt to staff and carers contracting Covid and requiring to self-isolate leading to the postponement and rescheduling some activities when necessary. Our ability to meet the challenges that the pandemic has thrown up has better prepared us for the future.
How Glasgow East End Community Carers Ltd has benefitted from the funding
The Better Breaks funding has allowed Glasgow East End Community Carers to establish and maintain our Play-Sense service which has now become an essential resource to our local community, located in one of the most underprivileged areas of Glasgow.
The Carers are at the heart of our organisation, they are our reason for being here- to support then and alleviate the stress from the caring role.
We are almost seen as the first port of call for other partners, ilke the NHS Child Development Centre who refer Parent/carers to us when they are looking for help,
We can be involved at an early intervention stage and assist parent/ carers better understand their child's behaviour / disability and provide them coping strategies,
The families themselves then go on to give word of mouth referrals within the community we serve.
The funding allows us empower Parents/carers to participate in piloting new services and with their feedback develop the activities into something that benefits the whole family, and give them capacity to extend that caring role into the future.
Project Outcomes
Outcome
We will have successfully supported 64 children with disabilities living in the North East sector of Glasgow. This would be via their attendance at our weekly Play-Sense play group, eight weekend outings and ten holiday activities or via remote services, should lockdown continue.
Results
This outcome has been fully achieved. We have been able to provide over 100 children with the opportunities to have fun both at our Hub and various outdoor locations and provided materials for use at home.
Children enjoyed messy art play, spending time on the obstacle course with nets, tunnels and parachutes, soft play in groups but also had quiet time in the sensory room Vimeo allowed us to share short videos for parents to carry on the activities at home.
Case study
Dawn was referred The Carers Hub by a Specialist Community Paediatric Nurse based in Bridgeton Child Development Centre. She cares for her son Jax who has developmental delay and is on an NHS waiting list for Autism assessment.
Dawn herself finds social situations very difficult to cope with.
Dawn regularly attends PlaySense with Jax. Initially she felt anxious about coming along as she had experienced judgmental attitudes in previous Parent and Toddler groups due to Jax not having reached the same milestones as his peers in speech and language skills, toilet training and social development. She wanted Jax to have the opportunity to play in a safe, accepting environment where achievements are celebrated, and setbacks met with empathy and support.
Jax took a few weeks to settle, as would be expected for a child who doesn’t cope well with new experiences and environments. However, over time he learned that PlaySense was a happy, fun, environment where he could meet the same familiar friends each week. Dawn was relieved to learn she could relax amongst parents who understand and share the same lived experiences.
Dawn has built solid, trusting relationships with her peers and Hub staff and knows she has friendship, information, advice and support whenever she needs it.
She has gone on to independently organize a trip to Blair Drummond Safari Park with her PlaySense peers.
She was delighted to have the opportunity join a craft group at the Hub to learn the art of quilling, something she would previously have been reluctant to do in a community setting with strangers.
Dawn has given us the following feedback;
“The availability of the PlaySense whats app chat is amazing for me because I have people who understand what I’m going through at the tip of my fingers. Day or night, no matter what the question, I am not scared to ask. I always know these people are going through the same situations as myself so instead of looking through the internet or calling Health Visitors I have people I consider to be friends, there to support me. I get embarrassed asking most people things because I have dyslexia and don’t express myself well, but I don’t feel silly or judged. I can be myself.
Being able to go to PlaySense Playgroup has helped me and Jax so much. I have made new friends with people who understand me. I am quite shy, especially in new settings with new people, as I feel I always come across as weird, rude or too direct. I over- analyse everything I say in certain situations, but I don’t feel the constant need to be careful over what I say or worry that I talk too much or talk over people as these parent carers understand social situations aren’t easy for everyone.
I get on with everyone in the group but especially two other mums, who I consider to be close friends. When Jax first started PlaySense he wouldn’t leave my side. He wanted me to do everything with him but now he goes and plays independently. I can see he’s grown in confidence and even tries to join in and play with other kids. He has formed a close bond with one wee boy, in particular, with similar needs. They understand each other which is amazing for two kids so young. He’s so happy each time he goes to PlaySense and cheers when he sees the play area. He is a happy boy and loves to be out and about so it’s great to be given the opportunity to get out more as we don’t have a garden. I don’t have any original friends with kids Jax’s age so meeting this group means both Jax and I have friends we can socialize with.
I suggested a trip to the safari park with a small group from PlaySense chat. This day was absolutely amazing and all four of the boys had the best time. I would never in the past have gone on an outing with people I hardly know as I like things done in my own way, at my own pace. But everyone totally understood and helped me overcome this whereas others, even my sister, would just say I’m being stubborn.
I attended a quilling class with The Hub, which was AMAZING! Donna was a great teacher and over a few classes, taught us loads - I ended up taking this up as a hobby. I liked feeling part of this group as it had a definite purpose and it was very relaxing. It’s always good to learn a new skill and take your mind off life’s problems for an hour or two.
With support from the Hub, we received an iPad from the Family Fund. It has been a godsend as Jax uses it well. It helps him calm down and helps his learning and understanding so much. Due this, his communication skills have increased dramatically, and he finds it a little easier to tell me what he wants. He loves to play counting and matching games and watch his favourite programmes. This is also helpful for longer journeys and for times when he needs to sit for longer periods such as dinnertime. Before having the iPad, these situations were a nightmare. He’s happy with an activity he enjoys, and I now get more time to myself to recharge my batteries.”
Outcome
We will have successfully supported 52+ carers of pre-school children with complex disabilities and 42+ carers of school-age children living in the North East sector of Glasgow. They will have enjoyed various activities, family events, new friendships, hospitality and pamper/beauty sessions
Results
This outcome has been 100% achieved. We provided day trips for parents
for example barge trips along the local canal network and also fun filled activities that gave them new hobbies or rekindled old pastimes like creative arts and creative photography classes. The feedback we received from parent/carers was fantastic with carers taking their new found skills out of the classroom and putting them into practice and importantly enjoying the experience.
Case study
Sarah (not her real name) told us about her experience of taking part in these workshops with the Create artist.
I care for my son. He’s five years old. He has been diagnosed with autism, and he also has reflux – he has had that since he was a baby. It’s 24-hour care. He’s had sleep issues so you don’t get enough sleep at nighttime. He’s in a mainstream school, but I have to support him a lot with his homework and during the holidays as well. He throws up quite a lot during the day, so there’s a lot of caring and cleaning up involved. It’s a very busy role, not only on the emotional side of things but physically as well.
We also suspect that my younger son may have ADHD. He’s very, very hyper, constantly jumping on and off the sofas. He’s got sleep issues as well. So it’s two young boys, five and four. It’s a lot of energy in the house. So you have to withhold your self-expression just to carry on.
I had to stop and say I need to do something for myself. This art workshop was the perfect opportunity. If the workshop wasn’t there I wouldn’t have stopped.
Most of my artworks from the workshops are unfinished, but I feel really liberated. I used to be an arts student, a long, long time ago. But my health has not been the best, and my caring role kept me away. So it was really nice to come back to this, to reconnect. This was a really important workshop for me to feel confident in myself, to find my identity again. As a carer you lose your identity, you feel as if all you’re doing is looking after somebody else, and that somebody else becomes your number one. This break of two hours away… it was really nice to find myself again.
I learnt that, with visual art, nothing is right and nothing is wrong. Anything is your interpretation. Everybody had different colours, different ideas to display. They were all different, they were all unique. That’s something really interesting in visual art: your perspective, and your creation. You learn all these different mediums to express that, so it wasn’t just sketching it was also a bit of paint work, print work, weaving using recycled materials.
The first day I didn’t realise the Edinburgh Carers Centre were going to be involved as well. It was really nice that we were able to cross the cities and meet new people. Everybody was coming from different backgrounds, and everybody was really friendly.
It’s difficult to describe the feelings you get from being creative. You feel more confident in yourself. You see a different side of yourself: that you can do something. And that something gives you a little more confidence to stand a little bit taller.
Since taking part in the workshop, my husband has gone out and bought me a sketchbook. What I’ve learned from the project I will definitely carry on. If I get some more time to myself, I wouldn’t mind picking up my sketchbook and sketching up something really simple. I’ve already got a project for myself for the summer from the printmaking. I’m going to take some bags and T-shirts and print them up in something boyish so I can make something for my boys. The skills have definitely been handy, and I will definitely take them forward. Please do this again!
Outcome
94 carers of pre-school children with disabilities will report being better connected to support within their community and will have benefited from knowledge and experience of peers and staff members resulting in increased capacity to understand their child’s condition and develop coping strategies
Results
This has been completely achieved. We have supported parent/carers who came to us either via self-referral or by our Referral partners by listening to their needs, both immediate and long- term and working with them to provide the training and breaks that they required to support them along their caring journey.
Comments we have received from carers include
‘We felt welcome as asylum seekers. My children were able to see and do things they’d never done before, including wonderful days out. I even found someone who spoke my own language.’
‘I feel we fit in here as we haven’t before. Staff and parents understand our issues, so we feel properly supported now.’
Case study
Susie and her husband, Billy, referred themselves to The Carers Hub via our website during the lockdown period of the Covid-19 pandemic on the recommendation of Jane, a Community Worker in a local Chinese Church. In addition to her community work, Jane provides a translation service for our organisation.
The family had recently arrived from Hong Kong to start life in Glasgow with their two young daughters, Connie age 7 and Lucy age 5, who has developmental delay and probable Autism.
The parents were vulnerable and felt bewildered in their new country as they did not know how or where to get the advice, information and practical help needed to navigate an unfamiliar Health and Education system. They were feeling isolated in their community and anxious as they tried to make sense of their daughter’s condition and meet her additional needs effectively.
Val, Parent Services/Autism Family Worker, called Billy to make an initial assessment however it quickly became apparent that translation services were required to truly understand and identify their support needs.
Val invited the couple onto upcoming Autism Awareness Training , delivered by our facilitator Theresa via Zoom with Jane’s support to translate into Mandarin We intentionally kept the number of attendees small and ensured the content was paced at the right level to allow opportunities to ask questions and share experiences. The couple attended in full, interacted well and gained knowledge in Understanding Autism, Understanding Sensory Needs and Anxiety and Distressed Behaviour. They learned of strategies to support Lucy’s communication and sensory differences and felt better supported, more confident in their care role and less isolated belonging to a community of carers within a shared culture. This was of particular importance, as we have learned that disabilities often come with a sense of embarrassment and stigma in Chinese society.
To consolidate their learning and meet individual need, we offered the parents an Autism Helpline service with Mandarin translation. Susie and Billy had an hour’s consultation with Theresa for further advice on supporting Lucy’s ability to hold a pencil effectively and focus on pencil control, in preparation for school. Theresa identified a potential sensory deficit in touch and recommended trying a weight and pencil grip to help Lucy’s dexterity and fine -motor control and provide increased feedback through Lucy’s muscles and joints. The Carers Hub then purchased these items and demonstrated how to use them. By experiencing advice tailored specifically to their issue, they felt better supported and encouraged that such small adaptations could make such a big difference.
Susie was then invited to join PlaySense at a local soft play area once Covid -19 restrictions were lifted. Initially she was hesitant because she was unfamiliar with the location and lacked confidence using public transport due to the language barrier and difficulties in coping with Lucy’s behaviour in public. We now provide and a weekly taxi service to address this potential barrier to her and Lucy receiving much-needed support.
Susie and Lucy now attend PlaySense regularly where they are valued members of a supportive, multi-national group of parent carers. Susie feels more relaxed knowing neither she nor her child are judged and is visibly delighted to see Lucy develop friendships with her peers. Val also attends PlaySense to be available for parents as issues arise and evolve, and has provided Susie with advice, information and practical support in accessing statutory services such as Health and Education. She has also facilitated Susie’s integration within the group. Susie now feels reassured knowing she has ongoing support from one organization without having to re-tell her story to strangers.
All of the above interventions have impacted positively on Susie and Billy, who now feel better supported to sustain their care role.
Outcome
94 parent carers and 64 children with disabilities will feel more fulfilled and have experienced a reduction in stress symptoms and increase in emotional and mental wellbeing.
Results
This outcome has been wholly met. The activities we facilitate empower parents to take back some of the control in their lives and give them a break from their caring role. The days out and pamper days make them feel better about themselves and the mindfulness sessions help them to relax. Children learn social skills while having fun in a safe environment with a breakout sensory space for when they need a timeout
Comments we have received include
‘My children love messy play and are becoming more social around others. I now have a better understanding of my sons’ behaviour as I received autism training in Mandarin.’
‘I’ve been able to see a new side of my child – she’s more expressive and communicative. As she’s prone to meltdowns, it’s fantastic to have access to the sensory room.’
Case study
Zola, an African parent carer to Daniel, her autistic 8 year-old son was referred to the Autism Project by the Depute Head of his primary school with concerns for her wellbeing. Daniel’s behaviour is very challenging as he has significant difficulties with communication, processing sensory information, engaging in impulsive behaviours, with no danger awareness. Zola was exhausted and didn’t know how to navigate support for her and her son.
Upon meeting Zola during Covid-19 lockdown via a Zoom call and giving her the time to tell her story, it became clear that she was isolated, low in mood and experiencing cultural and language barriers to getting the support she needed. The zoom call gave great insight into just how demanding her care role is, as Daniel was also at home and the level of his additional support needs was clear to see.
Zola joined our Autism Support Whatsapp group, where she was delighted to discover an inclusive, multi-national, group of parents actively sharing their experiences, information, and friendship in a non-judgmental space. Soon Zola began building friendships with people who understood her and Daniel.
Zola had been aware of the gaps in her understanding of Autism and wanted to learn how to better support Daniel. However, she was hesitant to sign up for our evening Autism Awareness seminar due to the challenges around her care role, as she has no other family members to provide replacement care. The Carers Hub reserves a small budget to provide carers with short breaks, meaning we could offer 1:1 support by an experienced Personal Assistant from GEECC Homecare department. Zola was given the time and space needed to participate fully and get the most from the learning opportunity, resulting in increased knowledge and more confidence in her care role.
Zola then approached Val for help to understand a Welfare Benefits letter regarding a potential transfer to Universal Credit. Val was able to advise her of the best way to proceed to protect her current income and identified an opportunity to maximise her income. She was given an appointment to complete the relevant benefit application.
Zola shared that she had been experiencing discrimination by her neighbours, who judged her son’s behaviour and her parenting. Daniel is vulnerable and easily persuaded by peers who exploit his condition for their own gain and had been goaded to engage in dangerous behaviours, with no awareness of the consequences. Val offered to provide a letter to explain the reasons behind his behaviour and to provide copies for her to share to restore better relationships and advocate for Daniel. She also provided a Hidden Disabilities lanyard which aims to foster more sympathetic responses towards individuals with non-visible conditions such as Autism. The Carers Hub operates an Autism Helpline service and Zola is currently awaiting a call for 1:1 support on how to approach Daniel’s poor understanding of danger. Val will then support her practically, using Social Stories to support his communication and understanding. Zola feels listened to, hopeful and supported by these initiatives.
We then went on to talk about Zola’s concerns around Daniel’s education, specifically that he is not currently placed in a school that can meet his complex needs. Val has extensive experience in Education Rights and with Zola’s consent, contacted the school management team to seek their views and to establish any ways she could offer support, eg, by letter -writing, attending meetings and providing advocacy. Zola now feels less intimidated and confused by what can be an uncertain and complex process.
Zola’s need for regular breaks is ongoing and Val introduced her to the subject of Self-Directed Support (SDS) as an option. She then made a referral to Glasgow Centre for Inclusive Living (GCIL) for a place on their online SDS information workshops. She also contacted Social Work to facilitate an assessment of the family’s needs. Zola now knows how to get the support both her and Daniel need around accessing social care.
Of the support she has received Zola says:
“Your service has made a big difference in our lives. You supported me with a carer while we had the training course on zoom and I had the opportunity to meet other parents. I felt less isolated and got more information I needed. You have helped me with every one of my problems. I don’t feel alone anymore, I do appreciate everything you have done. Thank you.”