A Berkshire mum is calling for better support for SEND families as the extra costs of having a disabled child leaves her ‘crying in the corner’ some days
Kirsty Northam is getting candid about the realities of raising a disabled child, particularly in the finance department, as the cost of accommodations and therapies for her six-year-old daughter adds an extra £4,800 to the family’s bills each year. The Berkshire mum, alongside Purpl founder Georgina Coleman, is calling for better support for SEND families.
Six-year-old Harper has been diagnosed with autism (Pathological Demand Avoidance profile), Hyperlexia, Sensory Processing Difficulties, and Restrictive Eating Patterns. For Kirsty and her partner Dean, it meant letting go of the parenting journey they had pictured for themselves.
Kirsty also lives with a functional neurological disorder herself, adding an extra layer of challenges to caring for her daughter: “I cry quietly in the corner some days. I often get told off for not looking after myself, but parenting a disabled child means sacrificing a lot because your child’s needs always come first.”
The 32-year-old said: “When you’re expecting, you have all these hopes and ideas about what it will be like, and the reality has been quite different. We love our Harper so much, and she is the most amazing little girl, but we’ve had to learn not to compare ourselves to other families.
“We first suspected that Harper was autistic when she was just under a year old. She didn’t respond to her name, and she couldn’t maintain eye contact with us. Later, she was non-verbal, until one day when she surprised us by reading out loud! Over time, we realised it was more complex than autism alone.”
On top of the usual childhood expenses, the Northams face additional bills for Harper’s care:
- Specialist therapies costing £160 a month
- Sensory tools costing about £500 a year
- Adaptive clothing costing £500 a year
- Specialist learning resources like SEND courses cost £500 a year
- Mobility buggy which costs £700
Altogether, the Northams spend an estimated £4,120 more per year compared to other one-child households. While they are able to claim DWP benefits like DLA and Carer’s Allowance, their benefit income totals at £800, which doesn’t quite cover the added cost of Harper’s care.
Kirsty said: “We’ve had to cut down the specialist sessions to save. Debt is an issue, and even when we think we’re in the clear, somehow we land back in it. My savings are non-existent, having been used to top up accounts for bills and unexpected costs. It doesn’t help that anything used for disabilities automatically has a ‘suped-up price tag’.”
The cost of raising a child currently sits around £12,400 a year, according to LV, but parents of disabled children face a far higher cost and need more creative ways to cover the deb,t as some parents have to squeeze their work in around caring duties.
When Harper was born, Kirsty gave up her role as a teaching assistant and started working at Harper’s nursery to save on the cost. Once Harper aged out of nursery, Kirsty tried to find other ways to balance the budget: “I had to give up earning a salary because I am the primary carer, so we are a one-income family living in Service Family Accommodation.
“Wherever possible, I try to freelance by writing, supporting brands with their social media, or selling goods like apothecary oils and handmade items to bring in extra income.”
Georgina Colman, founder of Purpl Discounts, said: “As a disabled person myself, I know firsthand how expensive life can be. That’s part of why I started Purpl, and I’m proud we’re helping families like Kirsty’s. But the truth is, they shouldn’t have to rely on discounts to get by. Life with a disability is expensive, and policymakers are failing to recognise that.”
