By Kelly Wilton
Let me tell you a secret.
I’m winging it like everyone else! Yep, it might look like I know what I’m doing, but it’s only because I feel more confident as time goes on and I’ve learnt to understand that when sh*t hits the fan, we fall AND then pick ourselves up again. With experience comes resilience I guess.
Who taught me that? My kids, time and practice!
The idea of actively working on our resilience almost feels out of reach, what with everything else we have to deal with day in day out. However, because we don’t stop to acknowledge what we do each day, we almost forget we are practising this very skill each and every day that we get up and show up!
Next time you feel low, just remember how far you’ve come in your own knowledge. The medical knowledge, the therapy hacks and tips, all that and more that is completely unrelatable to parents of neurotypical kids. It’s all the knowledge you’ve accumulated over the years. Knowledge that over time, makes us as special needs parents so damn capable, and so we should so be proud of that!
That is something to celebrate! Particularly when we get a punch in the gut, which we so often do, as is par for the special needs parenting course we are on!
If I could go back to my younger self, I would say ‘you don’t know how strong you are because you’ve never had to face anything which calls upon the resilience you’ll acquire over time’.
Resilience is the capacity to recover quickly from difficulties; it’s a toughness.
We see it each and every day in our children during their therapy sessions, their interactions with their peers, their community and their family. We see that they are kids, getting on with their lives with whatever is thrown at them – time and time again they build their resilience through the challenges they face.
When there is no way you can control things that are happening (hiding under a doona is not an option for us!) you click into a mode of acceptance of the situation so that you can proactively work on a plan of action.
Do you know, I’ve been told to put my ‘big girl pants’ on because I was literally having a panic attack when I found out my twin had been confirmed with having a rare syndrome? (The first twin had his rare diagnosis years prior, so I was half expecting nothing to come of the 2nd investigations because it had been a while!) To be fair, the person who said it to me had no idea what had gone on previously in my life, but the throwaway comment hit me in the guts as a pure attack on my character.
Little did they know, I had actually been wearing my big girl pants for years and as time went on I had gotten better at being open about the realities of special needs parenting. I love my kids, I love who they are, they don’t live a sad life, nor do we as a family. We live a challenging life, but most people do over the course of time. Our challenges are ones that stem from things out of our control. It’s not about bad life choices – simply a hand of fate or set of circumstances that force us to face life with a different perspective, whether we like it or not! And the sooner we lean in to this new perspective, the better we are at adapting and living our best life as a family.
I truly believe that my life would not have been as wonderful up to this point – we sure wouldn’t have had the diversity that was thrown literally into our laps with twins both born with medical complexities that have led to a life of neurodiversity.
Acceptance, resilience and coping techniques are hard, I know. As the saying goes – this is a sprint not a marathon – so don’t be too hard on yourself if you’re not there yet or have bad days or weeks. We can only learn as we go, changing at different points in our journey, doing things our own ways, finding what works for us.
We can get wonderful strategies to help us from books and from the beautiful stories of other people’s lives that give us inspiration and a fresh perspective to do better, to be better, to live better! Do look out for these and draw strength from them.
Hindsight is also a wonderful thing. If I could go back to the beginning of our journey, I would:
- Ask for help MORE often! It sounds easy but it’s hard to ask for help – whether it’s to vent, or to get some advice – all of it’s hard because we fear that we won’t be heard the way we need.
- Get some professional advice when you are first handed your child’s diagnosis. Even if you don’t feel like it – how the hell can anyone support you if they’ve not walked that path? – get a professional to help you understand your emotions.
- Feelings of anger, despair and grief are not directed at our child at all (despite this huge misconception – don’t get me started!!). Our emotions, are just that, emotions.
- Get online to a place where you can vent the high highs and the low lows, because during these times, you need the right cheer squad in your corner! Find somewhere you can talk about the punches felt when a test result comes back negative or you’re staring at another assessment form. On the flipside, there are the huge highs like mastering a self care skill that has been years in the making! These inch stones are to be celebrated and you will find others who will truly bask in your happiness.
It truly is a roller coaster ride, so hang on and remember that you are not alone! You have an army of champions behind you with their warriors leading the way.