Uncommon Parenting 101: Lessons I’ve Learned About Surviving and Thriving

 

There’s no doubt that raising a child with disabilities can change you. I’m no subscriber to the belief that ‘special children are given to special people’, nor that having a disabled child automatically adorns a person with a Pollyanna-esque gratefulness and wonder.

It would be fair to say that the experiences along this uncommon parenting pathway can shift your centre of gravity fundamentally. But learning to navigate this path, and find your way along it with a spring in your step, can take some practise and sometimes determination.

When Orange 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 a small chink of 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 Orange’s life, we rollercoastered 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 anxiety inducing; negotiating the education and social care systems to get him what he needs to have a normal life.

Even in my darkest moments, though, I never wanted to back myself into a corner through fear or anger. I was not going to be the person asking ‘why me?’, nor the one in denial, or embarrassment.

To me, the ultimate ‘failure’ and loss of control would be to have felt aggrieved at the unfairness of it all and let this overcome my world view. Even though I had no idea how I would do it, once I knew 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.

So I had to adapt. To find creative ways to establish some sense of control. To feel a little bit normal in what felt like deeply unusual circumstances.

I’m still learning, of course. And I’ve also learned that our circumstances aren’t so unusual after all. Which also helps.

For those of you at the beginning of this path I won’t pretend it’s an easy one. But I will say this.

You can survive things you might have thought impossible.

You can thrive in a life you might have thought unpalatable.

And you are most definitely not on your own.

You are human, and that means you’re really good at adapting. It’s what we do. What I’m about to share here is just a few of the things I have learned along the way. It might not be for everyone but it’s what I would tell myself if I was doing this all again.

You can choose. It’s completely ok to admit this might not have been the life you wanted. It doesn’t make you a bad person. So you can let go of that guilt. But you can choose whether to hang on to the sadness that your lives, and your child’s life, might not fit the vision you had in mind.

Life is unpredictable and if it wasn’t this, there would almost certainly be some other challenge round the corner that would throw best laid plans off course. You can choose to embrace life’s unpredictabilities or to be blown about by them. That doesn’t mean denying that life will sometimes bring sadness, grief or regret, or that any of us might have more than our fill of bad luck, but that you don’t waste the good times wishing your life was different.

 

You do need help. I’m an introvert. I’m also fiercely independent. I don’t do asking for help or showing vulnerability very well at all. But there have been times when I couldn’t have coped with a situation without the help of others. Figuring out the statementing process and securing the right school place for Orange would have been impossible without the help of wiser, more experienced SEN parents. Jumping in an ambulance with a non-breathing child and not having a kind neighbour step in to care for his sister. Maintaining a career without the help and support of family and the right childcare and respite network.

I couldn’t manage any of these situations without help.

So don’t hold back in seeking out help. Online, in groups, at school, at work, or within your own family and friends. Find it and nurture it. You will find that you can give as much as support as you take and this will make you feel good and useful too.

Learn to recognise anxiety. I didn’t, until very recently. Last November in fact. So almost six years into this uncommon parenting life. Before then, I just stuffed it away by over-filling my days with an impossible number of tasks and washing it down with enormous boxes of Maltesers and Kettle Chip chasers. This seemed like a pretty successful strategy until I was close to burnout, my jeans no longer fit and I stopped wanting to leave the house.

So don’t do that.

Listen to yourself, find a healthy outlet for negative emotions and nurture gratitude. I thought it was deeply cheesy at the time, but one of my Christmas stocking fillers this year was the ‘Five Minute Journal’. I don’t exaggerate when I say it has been life changing.

Preserve and create energy. Because you will need it. I won’t lie. Lifting, carrying, changing and feeding a full-size child is physically demanding. Advocating for your child’s educational, housing and equipment needs with your local authority – who you won’t want in your life at all but you will find are a necessity – is mentally and emotionally exhausting. Surviving an emergency hospital admission, or waiting around in wards and hospital waiting rooms for medical appointments or diagnostic tests is anxiety inducing.

These things can’t be avoided. And they might be more frequent that you would like.

In the first few years I treated these moments as being in ‘crisis mode’, that I could get on track with healthy eating, exercise and better sleep habits when those times passed so it was perfectly ok to stop at McDonalds on the way home or to stay up late watching Netflix and drinking wine like some kind of special reward.

Only those times never really passed. So I spiralled into an unhealthy pattern of eating crap, going to bed late and sitting about on my arse.

This one’s most definitely a work in progress but I am feeling so much more balanced and energetic in the last month having started the Eight Week Blood Sugar Diet. Next stop, exercise…

One step in the right direction

Maintain your friendships. Sometimes you will feel like you can’t. You’ll feel that your life is different now and how could they possibly understand. They won’t always get it right. But give them a chance. They are your friends for a reason. You may find that the people who support you day to day may change, but your long standing friendships will give you a sense of normality and a connection to yourself ‘just as you were’ that you will find you want to come back to, again and again. It will keep you grounded and connected to the outside world. This is a good and necessary thing.

Switch off. Mindfulness meditation was recommended to me as a way of managing the looping lists and invasive mind-patter going in my head. It wasn’t for me but I have found that writing and walking most definitely are. Preferably by the sea. Find your thing and make sure you do it. Your brain needs the space.

 

Feeling a little bit like a dickhead and hoping it’s worth it

I’ll be honest and say I’ve shied away from writing about this for a really long time. For fear that everyone else is just getting on with it and hasn’t needed some kind of survival strategy to see them through. That I might just sound like a massive dickhead. Perhaps I do. But if it helps just one person, I’ll take that.

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6 Comments

  1. Verity April 17, 2017 / 8:08 pm

    If it helps just one person. I have followed Orange’s story for years now, you probably wonder who the hell I am liking your posts all the time. I am on a similar path and just hearing that we are at the same stage has helped, we moved, went through EHCP, house adaption and now seizures. I love hearing what Orange is upto. My daughter has started smelling things, at almost six, it’s fantastic, Different mile stones.

    • KatherineKowalski April 27, 2017 / 8:36 pm

      Hi Verity, it’s always so lovely to get messages like yours from people on a similar path. Making those connections really makes a difference doesn’t it? Love the smelling milestone, that’s absolutely brilliant xx

  2. Yes. This.
    Thank you so much for sharing your experience. I have also used chocolate as a coping mechanism in a not entirely helpful way. But my sanity is still mostly intact even if my dress size has increased. I really appreciate you sharing what’s working for you in terms of self-care – I’m always looking for things to try out. 🙂

    • KatherineKowalski April 27, 2017 / 8:38 pm

      It’s so important isn’t it? It’s easy to put ourselves last but vital not to. If only someone would hurry up and invent sugar free, calorie free chocolate! xx

  3. Taliah August 21, 2017 / 5:30 am

    I started following your blog a long while ago when Orange was teeny tiny. I watched from the outside looking in at the love and passion a mother had for her son. Watched with fear and empathy that a parent with 4 children with no medical conditions aside from eczema, can feel. But I was drawn to your Orange’s story because it felt like there should be answers for him, there should be solutions! And then nearly two years ago, our daughter was born. And I began my own journey with her on her path. Lots of problems. Ours started with epilepsy. It is not funny that my husband and I said. It is just epilepsy. We can learn to cope with this right? Just epilepsy. Those late night non breathing ambulsnce trips, the constant inpending doom feeling. Sure, we can do that – she is perfect to us anyways. Almost like we had put our hands over our eyes not wanting to see the avalanche of other problems that would fall upon our daughter. And now we are left with it must be an underlying degenerative neurological condition. Degenerative. That word makes me ill. I needed to read your post today because I need to stop being in crisis mode. I need to make life real again. It is just so hard. I am sorry if the first part of this is too honest to admit just how much I really, really didn’t understand. But neck deep in this now, I can’t express how much it helps to know that there is more future to come. I just need to kick myself into a better gear.

    • KatherineKowalski November 17, 2017 / 6:31 pm

      I’ve taken a little break from blogging for the last few months and it was just lovely to log back in and read your comment. You know I had seriously been considering not writing anymore but to know that it helps other people to have hope for the future when things seem really dark means SO, SO MUCH! Thank you. You are right, it is hard and there is so much to manage, so many unknowns when we have children like ours with multiple health issues and conditions. Degenerative is such an awful scary word. There’s no easing the reality of that. But there is life still, in the moment, and that’s what will get you through xx

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