It's very easy to say...
I need some respite, a bit of time off, a break, a change, a rest...
We all have very different lives.
Some of us work, some seek work, others choose to stay at home with young children. Very few parents of children with additional needs can afford extra help, some rely on nearby family to lend a hand. Some of us are lone parents, some lonely within relationships, others are fortunate to find themselves within supportive partnerships, team-tagging their way through the special needs jungle.
But what we all have in common, as parents of children with a disability, is that we need time out in order to recoup our energy levels and enthusiasm. We need regular pitstops in order to be better parents and carers.
All unpaid carers know we need to nurture ourselves, but time for yourself is really difficult to actually factor in to your life for many reasons, often not least because you don't think you deserve it. Read why it is vital do press the pause button once in a while and have a look at our tips for doing so, in this post created in collaboration with Basubu Yoga Retreats, who know a thing or two about restoring the senses.
|Being a special needs parent can be wonderful and exhausting in equal measure
In the early years one stumbles in a state of worried exhaustion much of the time, from one illness, hospital appointment or surgical procedure to the next. In between you are happily bonding with you baby, constantly amazed by what they are achieving, but exhausted by broken nights, feeding and just keeping on top of the everyday chores that can't be put to one side.
My family lived many hours away, and my ex husband worked away, so there was never anyone on hand to step in on the worst of days.
I knew I needed support but who could deal with Natty's dietary needs or cope if she choked? I suppose in the early days I coped by trying to over-organise every element of her life, to avoid surprises!
Eventually the cracks will begin to show. For me it was my back that began to give way after lifting and carrying a little Natty who was growing not so little.
For other friends it was migraines or depression.
This is when we need to listen to our bodies, and those around us telling us to look after ourselves. We need to force ourselves to eat a little better, to walk round the block for 10 minutes while a trusted friend or partner listens out for sleeping children, to ring an old friend and chat about anything but the daily worries, have a giggle about the old times, flop in front of Netflix, buy a new sassy lipstick.
At this stage of our journey, we were doing some disruptive work on our house. This also combined with me trying to get an EHCP in place for Natty, which required many meetings, research and hours of writing reports in readiness for her starting school. So, although her heart surgery was behind us and she was stronger and healthier with mainstream school ahead of her, I'd taken on other external stresses and worries.
And no matter how organised I made myself, I always felt on red alert, adrenaline high, ready for the next challenge.
Finally my body shouted STOP!
Facial palsy, right side weakness.
MRI scans, blood tests. Concerns about MS.
Happily, it all turned out to be (nothing but) Bell's Palsy.
Time to Relax
So I sat up and listened and planned a couple of nights with an old friend.
It turns out that this is really the best kind of medicine. A quiet weekend with someone who delights in nurturing you (and vice versa), someone who knows your pre-parent identity. Who has seen all your hideous old outfits, laughed at all your dodgy hairdos, rolled her eyes over your inappropriate choice of boyfriends. Someone you can reminisce, laugh, cry, share and hug with. Someone you can eat, drink, walk and completely relax in the company of.
The key for me was that this was the first time in 7 years that I had had a weekend of purely adult time. I couldn't believe how it felt not to be on red alert.
Oh, and did I mention the sleep. I clocked up 33 hours in 3 nights!
It was long overdue, but I came home refreshed and feeling human. Ready for the upper respiratory worry and the lack of sleep that accompanies it. Ready for educational games and art and devising learning activities. Ready for anything.
I promised myself that I wouldn't leave it 7 years until the next pitstop. And I haven't.
Pandemic notwithstanding, close friends and I have forced ourselves to find time for a long hike, spent a day at a music festival we were a little too old for and enjoyed a very grown up city break. We've snapped up spa days when they are on special offer, stretched our tired limbs in yoga classes or sometimes just sat and chatted into our mugs of tea in one another's kitchens.
How do you get a break as a special needs parent?
You too need to factor in a break. Think of it as an insurance policy. Don't be afraid to accept help, it's certainly not a sign of weakness. And if you don't have any support readily available, ask for some. It tricky to learn to trust someone else to do your job at first, but you must.
- Look at Direct Payments or Disability Living Allowance and Carers Allowance options so you can enlist the help of a Personal Assistant for your child.
- Ask if you can have the support of a Disabled Children's Family Worker. They will have lots of ideas and resources at their finger tips.
- Join a local support group so that you can meet other parents in the same boat.
- See if there are any specialised activity groups your child can join locally.
- Read Give Yourself an MOT Checklist.
Because, as the air crew always tell us before every flight, we all need to put on our own oxygen masks first before attending to others.
* I was paid for my time to include a link in this post.