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Learning to adapt to ‘off the beaten track’ parenting

Katherine_OTMHKatherine_OTMH Member Posts: 1 Listener
edited May 2019 in Guest blogs

Drawing on her own experiences, Katherine writes passionately about motherhood when it turns out different to expectations. She covers topics as broad as parent carer health & wellbeing, accessible travel, home renovations and entertainment, family life with disability in the mix, and trying to improve the workplace for parent carers.

Katherine lives by the sea in Cornwall with her husband and two children, the youngest of whom has a Syndrome Without A Name (SWAN) which leaves him unable to walk or talk.

 Katherine smiling with her husband son and daughter

I’ve never believed that ‘special children are given to special people’, nor that having a disabled child makes a parent ‘amazing’ or ‘inspirational.’ It is true to say, though, that we can be stretched beyond our limits and our eyes opened to the fragility and complexity of life. These experiences can shift your centre of gravity fundamentally.

I am not a different person now to who I was before my son was born, but there’s no doubt that raising a child with disabilities has changed my outlook and I have had to learn to adapt to a life that I didn’t expect.

When my son was tiny, I didn’t want to be on this path. So for about eighteen months, I still hoped that he would be fine. Without any firm diagnosis, and with plenty of developmental ‘catch up’ time in front of us, there was still room for hope that we weren’t really on this path at all. That one day all my fears would be let go as unfounded.

The reality was that many of the things I was afraid of back then did indeed turn out to be on our path. In the first few years of my son's life, we roller-coaster-ed head on into some of my biggest fears: 

·       Non-walking child – tick. 

·       Non-verbal child – tick. 

·       Special school required – tick. 

·       The big one – epilepsy, seizures that stop your child from breathing – tick. 

And I hadn’t even anticipated the things that would be most relentlessly exhausting: 

·       Negotiating the education system to get him a special school place.

·       Navigating the Disabled Facilities Grant process so that we could stay in our home.

·       And worst of all, trying to keep a career together so we can keep a roof over our heads, while coping with the fact there is no suitable childcare for my son when he is not in school. At times, this has been seriously challenging and I have been convinced we are about to lose everything. It still feels like a deeply uncomfortable possibility. The impact on my mental health because of this has been significant.

Even in my darkest moments, though, I have never wanted to back myself into a corner through fear or sadness. Once I realised our lives would be different I always wanted to embrace it. To turn challenges into opportunities and to find happiness and fulfilment right where sadness or isolation could have easily set up camp.

I’m still learning, of course, but holding on to this way of thinking has helped ease the bumps in the road. And I’ve discovered some new things about myself along the way:

·       I can survive things I might have thought impossible.

·       I can thrive, even. Although at times the pressure may feel unyielding there are calm waters in between.

·       I am most definitely not on my own, even though it really felt like it at the beginning.

·       Being human means being really good at adapting. It’s what we do. 

Katherine Kowalski is the author of award-winning blog ‘On The Mother Hand’ where you can read her posts.

If you’re a parent carer, what has helped you most to adapt to your new role as both a parent and a carer, and have you learned anything surprising about yourself along the way?


  • Antonia_AlumniAntonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Thank you for sharing your story with us @Katherine_OTMH "I can thrive, even. Although at times the pressure may feel unyielding there are calm waters in between." Love this quote. :)
  • April2018momApril2018mom Posts: 2,869 Member
    I love your story. On diagnosis day I had so many unanswered questions and I felt out of control suddenly. What did make a difference for me personally was accepting external assistance to raise my son.
    I could not have coped as well as I have done over the past two years without the prayers and practical support too. Exercise also helped me. In the darkest moments I try to relax and remain positive. I talk about what my son can do not worry about what he finds difficult. 
    Can’t wait to read your book. It sounds like a great resource for new special needs families. 
  • alliy_jalliy_j Member Posts: 18 Connected
    I have found that it is possible to literally not sleep for 5 days and still function as a mother when your children need you.
    I have a t1 diabetic 8yr old daughter and a 5yr old son with aspergers. I need to wake every 2hrs to night test my daughter when she is bad and my son has never slept through the night. He wakes with night terrors and has done since 6 months old. He dreams about flies and can't be comforted.
    It is amazing what we can do when it's for our children. 
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