I knew my expectations of motherhood were slightly unrealistic when I had to Google ‘can you die of sleep deprivation’ on day two. But even then, I thought once we got through the baby years, I’d get to the life I’d imagined—swimming lessons and long Sunday lunches in the pub with toddlers colouring in the corner. There would be school clubs, and we’d have big family holidays with our friends and their kids.
I have now learned so much of parenting is out of your control. I’ve learned this over and over again. When I noticed my son wasn’t the same as the other toddlers. When the nursery asked me if I’d seen any issues. When I was referred to the GP and later a hospital consultant. When we finally got a diagnosis that I already knew was correct.
Motherhood is a lot of work for everyone, but with one child with additional needs—my son has autism and sensory and coordination needs—and one without, I know parenting a disabled child comes with a huge amount more physical, emotional and mental labour.
There’s the additional caregiving because your child has higher needs, and because it’s hard to find clubs or childcare they can access. Plus, there’s the extra mental load. As a friend who also has children with additional needs said, “People don’t see the constant work you are doing behind the scenes.” I’ve usually done a mental risk assessment, checked accessibility and calculated whether a trip is worth it before we’ve even left the house.
I’m always considering behaviour, social norms and potential judgement. This means I’m in a state of high alert and hyper-vigilance all the time, so it’s hard to relax or enjoy things. I’ve taken to adopting a kind of clown-meets-Zen-master persona. While inside I’m sweating, on the verge of a panic attack and thinking everyone is looking at us, outwardly I’m smiling, projecting a sense of calm and brushing off weird looks.
Then there’s the stressful unpaid admin of parenting a disabled child. The special education needs and disabilities system is a minefield and requires a vast amount of time and energy to navigate. It’s like learning a foreign language—everything becomes an initialism or acronym, and there are so many meetings, forms and emails. Studies show the system is in crisis, and long-awaited reforms have just been delayed again, leaving many parents anxious about whether and how they can access support.
At times, it feels like the system is designed to make you give up; a whistleblower confirmed as much, revealing to ITV that “superiors would joke about the ways they can deny support to children and how they want to deny more children access.”
There is a real threat of invisibility—that you become defined by your child and are so busy supporting them with school or admin that you lose other parts of yourself.
Like any parent, I want my child to get an education, have fun and experience the world, and it’s upsetting when it feels like you are fighting for every aspect of this.
I love being a mother, and I feel a huge amount of gratitude for the funny, loving children I have. At the same time, I hate that constantly having to fight and advocate for one of my children threatens to turn me into someone who is neurotic, stressed and burnt out.
Plus, I’d much rather be having fun or doing almost anything else than spending hours hunched over my laptop chasing emails or sitting in school meeting rooms during my spare time. When professionals call me ‘mum’ rather than my name during these meetings, it feels like my soul has left my body and I cease to exist as a rational, professional, competent person in my own right.
There is a real threat of invisibility—that you become defined by your child and are so busy supporting them with school or admin that you lose other parts of yourself.
Many mothers of disabled children are forced to cut down or give up work as a result. Research from disability charity Sense found one in five parents of disabled children have left work altogether, while the Trade Union Congress found women are seven times more likely than men to be out of work due to caring commitments. No matter what you do, you feel guilty about working, not working or taking any time for yourself.
57% of parent carers struggle to find accessible holiday clubs.
Research by disability charity Sense
I often talk with another friend who has a child with additional needs about how we don’t want this to become our entire personality. We are multifaceted human beings with jobs, lives and other children. We are not perfect or inherently good at caring because we have disabled children; we are just trying our best with the things available to us.
Having a disabled child can expose gaps in your relationship. People make odd comments, use outdated language or give unhelpful parenting advice—he won’t grow out of it, and no, I don’t think an infrared sauna will help. It can be hurtful when it’s people you love.
Other people don’t understand why certain activities like theme parks or shopping trips aren’t accessible and either aren’t prepared to change their plans to accommodate you or stop inviting you to things. Sadly, as much as I’d love to, we can’t come to street fairs or busy Christmas markets as a family, and my dreams of big group pub lunches never came true.
My friend finds social media overwhelming because you see what other people are doing and there’s a huge amount of content about what you ‘should’ do for a child with additional needs like diets, screen-time tips and parenting styles.
Occasionally I hear people talking about things they’ve done with their family and feel a brief stab of envy. But I’ve come to realise all children and families are so completely different that there is no point comparing. I won’t engage in parenting Olympics or use other families as a yardstick for my own, and it’s been a relief to disengage from any sense of family life being a competition.
You might think life closes in when you have a child with additional needs, but in my experience, it opens up.
I find myself worrying about my son’s future—will he finish school, get a job, ever move out or cope without me—but one of the best bits of advice I read in the early days of my son’s diagnosis in a forum about parenting a child with additional needs was to focus on their experience in the moment. Am I projecting my own views about what his life should be like? Or is he happy and safe now? Usually, the answer is yes, so that’s all that matters. After years of overthinking and anxiety, this has been an excellent lesson in mindfulness and living in the moment.
Having a child with additional needs has taught me to embrace the clown persona and see the funny side of things—you’ll either laugh, or you’ll cry, and it’s easier to navigate the world when you take everything less seriously. My son asking a group of teenagers why they were vaping or asking a group of soldiers in the Remembrance Day parade if their guns were real were pretty funny moments.
It’s also opened my eyes to accessibility and equity—I never thought about access requirements or how sensory elements like sound and crowds can affect someone’s experience. I feel enraged by systemic failures, like huge waiting times for support, and thousands of children being unable to access the right education for them.
I feel less judgmental and more empathetic toward other people and their experiences. And I feel more aware of the fundamentally human quality of care and know that while it might not feel glamorous in the moment, caring is one of the most important things you can do for other people.
The experience has changed my expectations of parenting—I now expect it to be hard and brilliant and exhausting and fun and frustrating all at the same time. You might think life closes in when you have a child with additional needs, but in my experience, it opens up. There’s more to feel and think about. You learn to expect the unexpected, to juggle the additional work and responsibility, and to have more capacity to love and care and think about people outside yourself than you thought possible. Just not during a long Sunday lunch at the pub.
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