All names have been changed.
Sarah is a single mum of three, whose youngest child is 8 years old and lives with autism, ADHD (AuDHD), sensory processing disorder, and chronic constipation.
Sarah’s story is one of love, strength, and unwavering commitment. It also shows how important it is that carers have the right support around them, at work, in their communities, and from local services.
Note: This carer's story is real, but names and images have been changed to protect their privacy.
More Than Just Parenting
Recently someone said to me, ‘Being a parent and a carer just comes with the parenting territory.’ That hit me hard. Parenting is one thing—but being a carer is so much more.”
For many parents, there comes a time when children become more independent. For Sarah, that hasn’t been the case. Her daughter still needs daily support, from getting dressed to coping with overwhelming environments and emotional regulation.
I’m not just a mum. I’m the therapist, the teacher, the nurse, the advocate. I’m constantly co-regulating, anticipating what might cause distress, and trying to stay calm even when I’m running on empty.”
A Full-Time Role Behind the Scenes
The admin side of being a carer is relentless. From fighting for a diagnosis to arranging support in school, Sarah is always working behind the scenes.
I’m constantly advocating, asking for help, chasing referrals, making new plans when things fall through. Some weeks I have five or six meetings just to keep everything moving.”
Getting professionals to listen, understanding how her daughter masks her needs at school, and making sure nothing slips through the cracks, all of this adds to the emotional and practical strain.
The Financial and Emotional Cost
On top of everything else, being a carer takes a financial toll, traveling to specialist hospitals, parking charges, and small but constant costs for home adaptations.
Sarah is also mum to two older children, aged 16 and 18. She reflects on how difficult it can be to meet everyone's needs when caring responsibilities become all-consuming:
I love all of my children deeply and try my best to give each of them the time, care, and attention they deserve. But when my youngest is in and out of hospital, I physically can’t always be there for my older two—and the guilt that comes with that is overwhelming.
My life consisted of a never-ending cycle of parenting, caring or working with no time left for anything else. I just couldn’t keep up with everything. I was burning out. I needed to protect my wellbeing, so I could keep caring.”
Like many carers, Sarah had to reduce her working hours, not because she wanted to, but because she had to.
The Power of a Supportive Employer
This is where the difference of a supportive workplace really matters.
Thankfully, I have a really supportive manager who just gets it. If my daughter’s admitted to hospital or I have another emergency school meeting, there’s no judgment. She allows the flexibility I need. That kind of understanding is everything.”
Sarah says having that kind of flexibility has helped her stay in work, something that’s important for her own identity, wellbeing, and stability.
Without the support of my manager I would have to leave work all together and lose the one thing that gives me identify other than mother and carer. I love my job and feel very grateful to have the support I do to enable me to continue.”
Finding Community and Connection
One of the most positive impacts in Sarah’s journey has been finding peer support through local charities and community spaces where she and her daughter feel accepted.
Being in a space where my daughter isn’t judged, where we’re not stared at, and where other parents just get it—that’s been huge. You don’t realise how isolated you’ve become until you find somewhere safe to land.”
Accessing spaces where her daughter can simply be herself, without needing to explain or apologise, has been a lifeline for Sarah.
Being part of groups like Woods and Waves and Glowsticks, where both my daughter and I are fully understood, makes such a huge difference. They create activities that are safe, inclusive, and tailored to our needs. Without these groups, I’d really struggle to find things to keep my daughter engaged while also getting the peer support I desperately need.”
Final Message
My daughter is amazing, hilarious, kind, full of life. But this journey is exhausting. The love is endless, but so is the work. That’s why understanding matters. Support matters.
I’ve shared my story to support We Care You Care in raising awareness of unpaid caring. There’s still a real lack of understanding around what parent carers face, the challenges, the exhaustion, and the stigma, whether intentional or not. As a society, we need to recognise that raising a child with additional needs is not just parenting. We are carers too, and we need support, understanding, and recognition.”