By Kelly Wilton
Pandemic aside, as special needs parents we are all quite used to sitting with unknowns, dealing with curveballs, and riding the highs and lows of our unique journeys – it just kind of comes with the territory.
From the moment we know something is different with our child, we feel different as a parent. There’s not a great deal of celebration of what this life might mean in the early days. It’s all about standardised tests which unfortunately our children either meet or don’t meet.
A lot of what we hear is ‘wait and see’; but while we are ‘waiting and seeing’, everyone else, in their ‘typical’ families seems to be ‘doing’. And there we are becoming increasing confused and spun into a sense of discomfort.
“Why is this not feeling right. I feel anxious all the time. I can’t put my finger on it, but I just know deep down there are answers to be had, and I’m not getting any. I want to help my child but I don’t have a clue how!“
All the scenarios we play out in our head end up making our brain’s tired and our physical bodies limp with exhaustion.
Brain fog is a very valid and real result of this never-ending roundabout that we spin on as we wait for answers and for time to pass.
It’s 2021 now, and still no one talks about neurodiversity being a gift when you first get that confirmation and/or diagnosis in the doctor’s room, do they? (If you’ve experienced something different, I would love to know!). It’s all about the differences, the absences of milestones, the difficulties that are being faced by your child, you as a family and you as a mum.
How the hell do I know, we say to ourselves at 1am as we are searching the web, trying to get a clue because we feel it’s our job alone (perhaps also along with our significant other) to find out what we can do to help our child.
Over the years we’ve had our ups and downs with my son’s condition (which is a rare epilepsy syndrome that needed one side of his brain to be disconnected from the other side; essentially he now lives with half a brain). We’ve come a long way since those early days of worry, angst and fear of the unknown – all of which took their toll on my mental health. I had to make a conscious decision to work on this (my emotional wellbeing) – admittedly stopping then starting a lot of the time – and one of the keys I’ve found to enabling me to support myself, and to protect my mental health from spiralling, is to put some firm boundaries in place.
It’s hard and it feels like it goes against all parenting instincts of breaking your back to get it all done. “How do I fit myself amongst all that?”, you may ask! The pressure of appointments, other peoples expectations, and our own expectations that we put upon ourselves loom so large in our lives, it’s hard to see past them. However, over time, I have taken notice of the mums out there who are making a conscious change with the way they live their life. They have consciously stepped off the merry go round of exhaustion that we experience due to the emotional and physical intensity of raising a child with a disability…and boundaries seem to be a common theme in helping them cope.
If you feel that 2021 is the year you need set some boundaries too, here are some actions that may help you get started:
- Say what you mean, mean what you say – If you want something to change and yet say one thing and do another, then you will be giving people the opportunity to test your limits, and you may fall back into old habits (it’s easily done!) Say what you want to change, then follow through.
- Unfollow who or what is no longer helpful – Following positive role models instead and looking at different ways of doing things, isn’t admitting defeat – it’s actually the opposite! You are acknowledging that by changing what is no longer working for you, you are giving yourself the permission to let go of the old and invite the new.
- Learn to say no – You can say no without an explanation and without providing any emotional labour to the person you’re saying it to. We just have to stop the narrative we tell ourselves that we have to provide a reason!
- Have some tune-out time from tech – Switch your phone to do not disturb; set a time to not answer emails; and set that time for you to do something you love – listen to music, go for a walk/run, read a book.
Setting boundaries is not just an outward practice, it’s an inward practice too, one that you may need to set some time for. However, give it time and you will find yourself in a new space where you are no longer spiralling emotionally, but comfortable enough to settle in and brace for those twists and turns which are an inevitable part of this colourful, diverse journey we are all on!
