It's very easy to say...
respite, a bit of time off, a break, a change, a rest
We all have very different lives.
Some of us work, some seek elusive work, others choose to stay at home, a few can afford extra help, others have family nearby to lend a hand, some are lone parents, some are lonely within relationships, others are fortunate to find themselves within supportive partnerships, part of a team.
But what we all have in common, as parents of children with a disability and special educational needs, is that we need time out in order to recoup our energy levels and enthusiasm. And 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.
Here's my experience...
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. Breastfeeding meant that both of my babies and I could not be far from each other for long, so in those days, time off meant hitting the sack to grab a couple of hours' sleep or doing a mercy dash around Morrison's, delighting in looking at fresh vegetables alone, while a family member or close friend played with the girls.
My family live many hours away, so there was never anyone on hand to step in on the worst of days, particularly hard if hubby was working away. That was always a cue for a medical crisis.
Trust has also always been a big issue for me. Who could we leave the girls safely with? Who could deal with Natty's dietary needs or cope with her propensity to choke? There were always so many issues to explain. No-one can do it as well as the parents after all, can they. And part of living through any kind of shock is that it leaves you wanting to be completely in charge, to over-organise every element of your life, so that you don't get any surprises again!
Eventually though the cracks begin to show in any super hero's foundations. For me it was my back that began to bemoan the lifting of a little lady who was growing stronger and heavier. That in between stage of needing lifting into cars and carried the last part of every walk, but being a big enough to make a chiropractor's hands rub with glee.
For other friends it has been migraines or depression.
I asked for a social worker so that I could get on the road to Direct Payments that would perhaps cover help if I was alone and Natty needed hopitalising. I had spent too many nights on a ward camp bed with Mia tucked next to me. Unfortunately they made the decision that I was 'coping' and we were signed off their list.
This is when we need to listen to our bodies, and those around us telling us to look after ourselves.
This is when we need to force ourselves to eat a little better, to walk round the block for 10 minutes each day 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, rent a funny DVD, buy a new sassy lipstick. Remember that you need to look after yourself as well as the rest of the family, because if you don't those cracks will widen.
At this stage of our journey, we decided to move into a temporary dwelling and do some fairly heavy duty, messy, disruptive work to our house (primarily to accommodate Natty living with us as an adult if necessary). This also combined with The Statement of Special Educational Need process 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, we had taken on other external stresses and worries.
We did take a wonderful family holiday, which undoubtedly kept us all afloat and we borrowed a friend's 'supernanny' for a night so we could go away. But somehow 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.
A brain tumour? MS?
Well, happily, it all turned out to be (nothing but) stress and exhaustion.
So we all sat up and listened. A plan was hatched. A whole weekend away in York was arranged with my dearest oldest friend who has also been rather poorly herself. Natty was old enough and well enough to be left, along with her sister, with my husband at the helm.
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-mother 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 shop a little with.
|Someone who dressed as Adam Ant with you, remembers your terrible denim dungarees,|
stuffed chocolate sponge pudding in at the rate you did,
and helped you pin that Bros poster on the living room door of your shared student house!
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!
So back I came, refreshed and human. Ready for the upper respiratory nonsense and the lack of sleep that accompanies it. Ready for games and art and devising learning activities. Ready for doing a TV appearance. Ready for anything.
I'll try not to leave it 7 years until the next pitstop. Neither should you. Think of it as an insurance policy. Don't be afraid to accept help, it is not a sign of weakness.
There have been some fabulous responses from friends regarding this subject upon reading the blog...
The first comment below says it all;
"If Momma ain't happy... ain't nobody happy!"
Another friend reminded me that all Mums "need to put on their own air masks first before attending to others."
And a third likened the 'red alertness' we parents of special needs kids feel pretty much constantly, as "penguin ears", after the way penguin parents can always pick the sound of their baby out in a crowd. We have to close the penguin ears sometimes.