The mother of a child with additional support needs has been hugely influential in improving outcomes for other children and families.
Sylvia, who has a teenage daughter, has played a pivotal role in organising support for parents and a summer programme of inclusive children’s activities following a consultation with our Commissioning Officer and Children with Disabilities Social Work Team.
The consultation, which was in partnership with our Children and Families Commissioning Officer, and Social Work Services, allowed a number of parents, carers and families to share their views, through focus groups, questionnaires and digital consultations.
Many asked that peer support groups be made available for ASN (Additional Support Needs) parents and highlighted the need for more inclusive activities for ASN children, as parents felt it was stigmatising for them to have to fit in with mainstream groups.
Sylvia quickly became passionate about improving outcomes for other ASN parents and their children, and immediately organised a venue for a support group, spreading the word and encouraging other parents to attend. The inaugural drop-in session took place on Wednesday 18 May and was attended by workers from the Children with Disabilities Team.
Contracts, Commissioning and Complaints Officer, Paula Raymond, explained that, while the team has provided a platform for change, it is “very much the parents who are driving things”, adding that “Sylvia has been a force of nature”.
Sylvia and another parent were invited by Paula to be part of a steering group, which was also attended by East Ayrshire Leisure, Vibrant Communities and social work staff, and has helped with an application to the Scottish Government for funding. The group has since been successful in its bid to provide 12 events for families over the school holidays, which will take place at the Dean Park and Dumfries House.
Sylvia told us more about her experience, from attending the initial focus group to playing a key role in bringing about such fantastic progress for ASN children and families:
“My journey started when my daughter was in Primary One and I took that first daunting step through the door of the Parent Council. I was terrified! I took over as chair six months later and have been there ever since (she is now 15!).
I have attended meetings, organised information sessions, sat on interview panels, represented the Parent Council at funding events and have done many things that are way out of my comfort zone. I have heard too many times that we need to fight for our children but learned very quickly that if we talk first there is no need to fight.
I have a super relationship with my social worker. She is my daughter’s best advocate and the saviour of my mental health! When she asked me to attend a focus group to discuss the development of services for the future, how could I say no? ASN (Additional Support Needs) kids and families often feel overlooked, so when someone asks for your input you take the chance.
It was an eye-opening session that allowed me to feedback to my parent forum about the commitment of the service to getting things right. I took away a feeling of comfort and reassurance that day, which was very much appreciated in my frantic little ASN world. The conversations we had touched on the lack of activities for ASN kids and I was delighted when I was asked to provide some parent input to the Summer Activity Steering Group.
I always knew the world wouldn’t change for my child and this is just one small way that I can help change the world.”
We’re continually amazed by the resilience of the families we support and how motivated and determined they are when given the right opportunities for their children.
As summarised by Paula, “We started the process and are supporting its development, but it is very much down to the families telling us what they need. They are driving the changes they want.”