4in10 organised a coffee morning in February 2023 that was jointly hosted by staff and parents at Marjory Kinnon School in Hounslow. Rochelle McIntyre, the Family Support and Community Outreach Worker facilitated the discussion and had invited her colleague Jo Stacey, Assistant Head Teacher, Key Stage 2 and Staff Governor as well as a parent to provide first-hand experience.
This mother shared her experiences as a single-parent and the challenges of caring for a child with autism. Throughout the group discussion, a few key costs were mentioned that demonstrate the challenge of parenting and educating children with a learning disability. These include:
- Changing dietary needs and specific food items being essential to meet the sensory needs of the child, these foods are often more expensive or difficult to predict and buy reduced
- Clothing and textures becoming uncomfortable leading to new purchases frequently
- High costs to attend a sensory appropriate gym, averaging £17.50 per visit which swallows up a high proportion of the Disability Living Allowance (DLA) that her son is entitled to
- Taxis across London for appointments as the underground is too overstimulating
- This parent shared that her son often strips off his clothes at home meaning its particularly important to keep the house warm enough, thus adding to the cost of utilities.
The emotional side for parents was also highlighted. A parent in attendance explained that working part time and taking coursework all had to stop because it just became too overwhelming for her and exhausting to keep up. Even when she was able to access a personal assistant, there were still costs associated with the PA taking care of her son or taking him out and about that limited how much her son could do with her PA. Thus, it felt like there were always limitations and challenges as to how much help she could get because the costs keep adding up.
Another parent of a child with autism shared her own experiences and emphasised that practical help is important, but the challenge of supporting and adjusting to the sensory needs of a growing child with autism is always there.
At 4in10, we want to listen to these experiences and share them with those who make decisions that impact children and their parents. We want to highlight the financial and emotional challenges that parents face and the impossible situations that parents with low-incomes encounter when caring for a child with a special need or disability. If you have other thoughts or experiences that you’d like to share, please do get in touch so we can support growing more awareness and social action to advocate for better support of children with varying needs and financial situations.