Columnist Hayley Goleniowska writes:
Last month, in my first column for Special Needs Jungle we explored the preconceptions that strangers have about our children, how their swift judgements make us feel and the wonderful unique truths we want to replace those hurtful rigid stereotypes with.
This month, I've drawn inspiration from an unexpected quarter.
ccKatie Price, aka glamour model Jordan, had us all aquiver with her insensitive comments about carers, saying, "There actually is a lot of help out there, but some people are too ignorant and they don't want to look for the help... Some parents might be too lazy".
I rolled my eyes a little at how way off the mark she was, at how little she understood the daily struggles, the exhaustion, the waiting lists, the fund-raising, the endless letters that parents write to get the basic support and equipment that their incredible children need.
But the comments stung. They lingered. Why? Because Katie has a son, Harvey, who has complex and multiple disabilities. And I guess I thought that any SEN parent would know instinctively from the core of their soul, that it's simply not possible to be lazy or ignorant when you are so driven to do the very best for your disabled child.
Katie's not known for being a great orator, so maybe she simply meant ‘tired and frustrated’ or ‘exhausted and unsure of which way to turn next’. As I penned a few thoughts on how her gaffe made me feel and read the carefully crafted responses of many other high profile SEN bloggers, I sat with goosebumps of pride to be a part of this strong 'tribe', or as Complicated Gorgeousness put it 'sorority' (not forgetting the Dads of course).
My thoughts turned to how amazing all parents and carers of children with additional needs are, what a brilliant job we do even when we are doubting ourselves, and furthermore how much we all support each other, online, via support groups, in our blogs, at the school gates, on the phone, over coffee, in parliament, making grass roots changes. We wouldn't be where we are without the ever-ready input and safety net from others around us, those who have trodden the path before and I thank every one of you.
But a few comments stood out.
Pink Oddy, The Sensory Seeker too talked of how Katie’s comments had made her reflect that we aren’t all on exactly the same page, chasing the same goals, and for the same reason that Katie’s comments set my mind whirring, this realisation about the disability community had taken her by surprise.
Another mum told me she had experienced unpleasant comments from a SEN parent. As we chatted online, we both concluded that parenting is a wonderful, unique yet frustrating and exhausting task at the best of times and that when at a low ebb we all lash out to those close at hand, partners, family, maybe others within our social circle. Just because our children have additional needs doesn’t make us angels.
I also recalled a conversation over dinner some time ago with a blogging friend who said she had noticed subtle comments from other parents about how their child ‘was more disabled than so and so’s and ‘who was she to complain’. What at first sounds like a lack of empathy or an impatience with others is perhaps the need of some parents to create an entirely understandable, self-preservationist distance from those who have fewer or different worries. The mum of a teen who soils and smears daily might feel justified in not having the energy to feel particularly helpful towards a family not experiencing such behavioural challenges.
Suddenly, I remembered a comment from a mum at a conference who runs a wonderful nationwide support group. She told me ‘not to try to reinvent the wheel’ with my blog and turned away when I gave my speech.
I was hurt; I thought perhaps she didn’t like newcomers, that I might be perceived as trying to compete with the wonderful work she was doing in some way. But maybe it was because my daughter’s needs weren’t complex enough for my voice to be valid in her eyes? And maybe she had a point. She had been there and done it and was wearing the well-washed T shirt after all.
And so to bring my thinking full-circle, I realised that by assuming all SEN parents were watching out for each other, that we all have the same goals, that we all think or act the same way after no sleep or while pacing a hospital corridor or after a glass of wine or however we choose to let our hair down, is to make the same snap judgements that others often make about our children. We are not identikit robots.
I recently attended Pippa Best's Story of Mum Exhibition and it was never so apparent to me as at that moment, that each mother has her own story, her own journey, personality, identity.
As SEN Mums we are no different. We too are resilient, wonderful, resourceful, tireless, humorous, down in the dumps, counting our blessings, motivated, broken, solitary, confident, content, frustrated, loyal, loving.
We are changers of hearts and minds, movers and shakers, nurses and therapists, story tellers and chefs, human climbing frames, peace-keepers and chocolate-eaters, poets and Zumba dancers, even if it’s only in our own kitchens!
Maybe we can all support each other better by accepting each other's individual differences, strengths and occasional failings. Let us know what your thoughts and experiences are.
She has campaigned tirelessly for inclusion, equitable education and healthcare over the years, and trains medics and teachers to this aim.
Hayley, along with daughter Mia, has published a book for children called I Love You Natty as well as contributing to many other books and publications, such as The Huffington Post, Special Needs Jungle, The Telegraph and Nursing Times.
She delivered a TedX Talk dispelling the myths around the condition and appeared in Sally Phillips’ BBC documentary A World Without Downs.
Hayley is often called upon to give comment in the media and she and her model daughter, Natty have popped up on The Lorraine Show, Channel Four News, Loose Women and more, but her stories always remain extraordinarily ordinary.
- Campaigning for inclusive education for children with Down’s syndrome - May 18, 2022
- Heidi’s Down’s syndrome abortion case: It’s complicated - November 10, 2021
- 21 Resources for Trisomy 21 on World Down Syndrome Day - March 21, 2018
So beautifully put, Hayley. There are so many apparently unifying things about motherhood (and thus as SEN mums too I imagine) that sometimes we forget that while we have much in common, our individual experiences are very specific to us – each child, each mother, each father, is different. There is great strength to be found in coming together to acknowledge and share our experiences, while keeping an open mind to others’ distinct and equally valuable perspectives.
Thank you for your beautiful comment and infinite wisdom Pippa. Keep support Mums and Dads everywhere.
So sad the lady at the conference was so unsupportive. You could never say that and I am so grateful of how you support so many people, when you have so (I imagine) little free time to do so. This is a very well written and sadly true piece – I just hope that people will try and support others more, even if they don’t agree with all their opinions.
Thank you for the mention.
Thank you for your lovely insights this month too, always a wise lady Joy. And the free time of which you speak…? lol x
Lovely piece. Thank you.
Thank you. I was a little nervous about it, but glad it has been well received.