By Renee Swannack
Every parenting journey is as unique and as individual as our children, and the special needs parenting journey gives us a unique perspective on life, love and family. As tough as some days can get, it can also be liberating being handed a big fat chunk of perspective each day. Let me break off and share a chunk of mine to hopefully help make whatever parenting journey you’re on a little easier
1. Prioritise your time
Our definitions of time well spent are all different; spending time with our kids, our families, cooking an amazing dinner, going for a walk, scrolling social media, sitting in a wardrobe eating a family sized block of chocolate – whatever it is that makes you smile and helps you get through your week happily – do it. Anything not so important or that doesn’t help re-fill that internal block of chocolate can wait.
2. Curate your very own team
As our families evolve, the people most sacred to us become even more so while others drift away. As special needs parents we learn this at some of the hardest times of our lives.
Our children are a lesson to us and to those around us; they’re a beacon of love and acceptance that some people aren’t ready for. Good. Don’t waste your time trying to get them to find space in their heart that might not be there. While you’re worrying about one person you might be missing out on meeting another who will love and accept you and your family exactly as they are.
Don’t underestimate the power of social media support groups and messenger chat friendships here either. Whether it’s your child’s uncontrollable meltdowns or obsession with Bluey – trust me there’s another parent out there who gets it. Suddenly two people are less alone in the world and if there’s one thing the world needs right now it’s more of that.
You may find that at different times, for different reasons, some friends and relatives will step up, some will drift, some will appear out of nowhere and just get it, some people will need to be bid farewell. Your intuition will tell you who is on your team and who isn’t.
Trust it, own it and behave accordingly.
3. When things get hard, get harder
Life in general can be really tough. We all react differently to any given situation – each of us are on a journey that is exclusively ours.
Special needs parents do a lot of what I like to refer to as being ducks. We look like we have it under control on the surface, but beneath that surface we’re frantically paddling. Admitting weakness, being vulnerable and reaching out for help is hard. But sometimes it’s exactly what we need.
Ask questions, educate yourself, if you feel something isn’t right, push back, get a second opinion, approach those people in your community who might be able to help, people who have walked the path ahead of you.
Do whatever it takes to improve your situation. Trust me, one day you’ll need to call on all of those resources and your situation will do nothing but improve as a result. Some days that tired old duck morphs into the most elegant, ass kicking swan ever.
4. Avoid worrying about anyone else’s opinion
Judgey McJudge Face and their opinion is none of your business.
We all dive into parenting as different individuals, with all sorts of different life experiences, different needs and wants and things that make us happy or alternately, things that make us sad. As a result, our children are all different individuals too, making our families as unique as that collection of miscellaneous items in the third drawer down.
Natural or caesarean? Formula or breast milk? Private or public? Work or stay home? Who cares?! As long as we’re all alive to tell the story, the rest is insignificant. As special needs parents, more often than not, whatever grand plans we had go out the window like most of those well intended parenting manuals should do!
Do what works for you and your family and don’t pay any attention to what others might think or what others are doing. More often than not, everyone else is so caught up in their life’s pile of miscellaneous items that they really don’t have time to pay any attention to yours. And if they do, good luck to them. What a lonely existence poking around everyone else’s third drawer down must be!
5. Try not to compare your child to other children
This one is tough. If our child’s condition involves delays or missing any kind of milestone, it’s hard not to watch other kids the same age doing all of the fantastic things’ kids do and not feel a pinch of heartache for our own children.
Often times, we actually have no other children to even realistically compare with – as most conditions have a spectrum of outcomes.
Like all humans, our children will excel at different times in different ways – embracing diversity and finding peace with all of those different outcomes is important.
If things are concerning you, by all means speak to a professional, just promise me you won’t listen to Judgey McJudge Face and how their child had mastered the periodic table in utero… Fluorine-Uranium, Judgey!
6. Take time out for you
As special needs parents we find care for our loved ones takes up all of our time and we become accustomed to putting our needs last. There’s a reason behind why airlines direct parents to put their oxygen mask on first in an emergency – without ensuring you’re okay, it makes the task of caring for others more difficult. Special needs parents know how to let their hair down in those rare moments we have to ourselves. Make the most of you time and make no apologies.
But if you end up in an oxygen mask… ease up a little next time!
7. Let your children be children
That elusive window of time that is childhood ends far too soon.
Embrace the innocence that comes with being a child regardless of their abilities. The curiosity, the lack of inhibition, the time when other children just see our child as part of the gang; help facilitate that. Make sure your child has a diverse range of friends, let them ask questions and be themselves. It will only make the world a better place for all of us. Suddenly our children become adults so help ensure they’re the most caring, patient, understanding and accepting versions of themselves they can be.
8. Live every day in the moment
None of us are immune to the facets of life that can land us in the realm of special needs parenting… Accidents and unexpected medical conditions can strike us all at any time.
Some of us know our loved ones are living on borrowed time, some of us will spend time preparing a future for our loved ones after we’re gone, some of us don’t have a diagnosis or our children have a condition so rare we have no idea what the future holds for us.
Living every day in the moment and taking each day as it comes is liberating. There’s a whole new perspective thrust upon us as special needs parents, an appreciation for a new kind of beauty, for a new normal.
Try to take a few moments each day and spend them as if they were your last moments with your child. Your child will know nothing but love and your heart will always be full of beautiful moments. Those beautiful moments are exactly what we signed up for when we became parents.
Oh, and the occasional secret block of chocolate in the wardrobe.
Renee Swannack is mum to Damian and the founder of the KCNA2 Epilepsy Alliance www.kcna2.com