When your family includes a member with special needs or disabilities, there is so little time for you, the parent carer. Almost none.
Of course, parenting all young children can be relentless, but in my experience it’s much more difficult to get a break, some help or a babysitter when your kids have additional needs. For example, if you’re ill, as I am at the moment, it can be virtually impossible to find someone else to take over at a moment’s notice. I’ve still had to keep up my parental duties and then some. These include all the normal tasks of motherhood such as cooking and eating tea, reading books to my son and helping him get changed after school, hunting for school letters and of course, bath-time.
But on top of this, I need to give Monty an extra hand with his personal care, offering constant reassurance for his fears and phobias and keeping eyes and ears open to head off any potential meltdown. Simultaneously, I’m trying to keep the poor long-suffering family dog safe as well as Monty has lots of sensory needs and for some reason only sucking the dog’s ears will do.
Even though I may feel frazzled, I have learned that I mustn’t show it, because Monty is extremely sensitive to changes in my tone of voice or my facial expression. If he picks up an exasperated tone of voice or a frown on my face he immediately becomes hyper-anxious. This is something I’ve been noticing more and more over time and the effect on his behaviour can be heartbreaking to watch. It makes me very vigilant about what I say and how I say it - but this is very demanding and tiring too.
So I started to think about how to maintain a level of positivity and sanity to make sure that even the really difficult days have something rewarding in them. Today, for me, that means an early night, albeit with Monty lying next to me, chatting nineteen to the dozen. But the result is I have eventually managed to have some extra time lying down to look after myself, which may help me shake off this virus.
Finding easy ways look after myself every day
This year, I’ve been trying really hard to think about my own mental and physical health. In January I started the ‘Couch potato to 5K’ Challenge. I don’t expect to manage the whole 5K in nine weeks but this is not about success or failure, it’s about finding something of my own.
And I’ve stuck at it, rain or shine. I’ve jogged in the dark when it’s been pouring with rain, something I NEVER thought I would do and I do feel much better for it. I now choose to go for a jog four or fives times a week and have become a bit addicted. It’s done wonders for my general outlook on life, it’s free and I have even shed a few pounds - so a win-win all round.
My tips for grabbing some glorious guilt-free time
Now spring is here, bringing with it the lighter evenings, how can you bank a bit of glorious guilt-free time that will help you keep on keeping on?
For me, it’s things like getting out in the fresh air - even just to walk the dog. If I have an hour I might on occasion go for a 30 minute swim or with 15 minutes, I can try a very small garden project, such as planting up a pot with seeds. If my partner is here or the boys are in bed, I might run a hot bath and take a book to read (not an ebook reader!) Or at the very least, just 15 minutes to put my feet up on the sofa and acknowledge to myself that this quarter of an hour is ‘ME’ time. (TIP: set your phone alarm, just in case!)
We’re all different, so whatever it is that puts a smile on your face, make a plan to fit it in to your day wherever and whenever possible.
Life as special needs parents or carers can quite often be demoralising, exhausting, repetitive and frustrating. It can also be rewarding, inspiring and stir up many other emotions - which is why self-care is a crucial element of being able to keep going.
Never forget to acknowledge your own hugely positive contribution to your young person’s life, because then you will realise how important it is to look after yourself. After all, if you don’t care for yourself, you can’t look after anyone else.
I am finding that for me, anything I consciously do JUST for me almost certainly boosts a few feel-good endorphins. When my time is so limited, creating small manageable projects that take 15 or so minutes a day is really worth it.
I’ve realised that although I’m a Mum and carer, I’m still a woman in my own right and I’m trying really hard to sometimes just be Angela.
- Helping our disabled children understand that difficult experiences don’t define them or their future - February 11, 2022
- Let’s rename bullying for what it is: abuse - November 16, 2021
- Therapy resources for families of children with additional needs - May 20, 2021