One of the Mothers Uncovered facilitators had an idea for a new development of our activities. She had attended many excellent support services with her child with additional needs, but she found there weren’t as many opportunities for her to talk about herself as a mother. She felt that support for the family focuses on the child’s, often complex, needs rather than her experience. When support is available, it is often entwined into a course to learn about the child’s behaviour or it is about obtaining a diagnosis or additional support within the educational system, for example.
Parents who care for a child with additional needs are ‘parent carers’. (Children and Families Act 2014. Legislation.gov.uk) In general, it is mothers take on the parent carer role. Caring for a child with SEND brings unique challenges which take the mothering experience away from the mainstream parenting world. This can cause isolation and lack of peer support for the mother. Children’s groups and schools may be harder or impossible to attend because the child’s needs restrict parent support relationships that can be formed in the community. Children are now more likely to attend a mainstream school rather than specialist provision. This means that they may be the only child in the class with significant needs, again limiting the opportunities for peer support for the mother.
The pandemic meant many mothers of children with complex medical needs needed to shield and are still having to restrict social contacts as the case numbers increase again. In Brighton one of the key community sessions for children with ASC under eight and their families has not run since the start of the pandemic.
Mothers may have had to give up work to care for their child further adding to their isolation. “Women caring for a disabled child or young person were: are less likely to be in paid employment than other carers or than women without such caring roles”. Almost two thirds of carers say that their mental health has worsened as a result of the COVID-19 pandemic” (Carers UK)
We decided we needed to develop our structured groups which provide a safe and facilitated way for mothers to connect. The groups are developed and held by experienced facilitators who have lived experience of caring for children with additional needs. They are knowledgeable about the SEND parenting community, services available, the emotional, financial and support and discrimination difficulties parents of SEND children face.
The peer support groups reduce isolation and increase connection between mothers who are carers. They are also a chance to share hopes, fears and challenges with other mums who can relate. They can reflect on the child’s diagnosis progress, how it felt for them, the relief, sadness and grieving this can bring. They can also share the unique joys and positive life changes caring for a child with SEND brings.
The feedback from the online sessions we have run so far indicate our groups were much needed. The facilitators report that participants are so grateful and they don’t feel so alone. Something that other parents take for granted, such as their child’s first smile, can be a huge achievement for a child with SEND. Here they find other mothers who understand what such a milestone means.
