Published

Hemihelp are a charity supporting young people and their families with a hemiplegia.  Smudge was diagnosed with hemiplegic cerebral palsy when she was 2.  Her case is mild. We don't for a second take for granted that she is so very lucky compared to many of the children who share this diagnosis. However, smudge does have a body that doesn't always do what she wants it to. What her friends can do. She fights to keep up and because she's 8 we all bear the brunt of this fight.

Hemihelp asked if I would like to write an article on coping with stress. It took me an age. Possibly because I never feel that I actually manage to cope with stress. Most days I feel like I'm riding a wave. Some days I'm on a surf board channeling Point Break. Then others I'm caught in a rip tide struggling to stand up and snorting sea water out of both nostrils. 

Despite this I managed to write and they published:-

Looking after yourself

Finding time for oneself in the stress and challenges of daily life is not always easy. After taking a moment to think about her own needs, Sarah Macpherson feels better prepared to deal with her daughter's sometimes challenging behaviour.

With all the physical issues hemiplegia raises I sometimes forget that it is caused by brain injury and as such can have an impact on behaviour. My daughter's physical issues are relatively mild but her temper is not. It is hard to admit that my funny, kind, lovely wee girl flips and behaves horribly.

She tends to keep her most spectacularly impressive displays for just her dad and me. She can hold it together to function at school, has wonderful relationships with her doting grandparents and is a credit to us when we take her out and about. However, at home, where she feels able to let go, things can get a little stressful. 

We have found that getting her to drink through a straw when she is mid meltdown has a magic effect, instantly calming her. Although we can't have her wandering around with a straw permanently stuck between her lips.

Her reactions to seemingly innocent requests or instructions and resulting behaviours are part of her condition. Like with her affected hand and foot, there isn't going to be a magic pill to make it better. So I need to deal with it. I need to not react to her demands for a fight, to refuse to let the rudeness or cheekiness get to me and to keep reminding her that she is loved no matter what her hemiplegia throws at her and us.

I keep a mental score card in my head. When I keep my calm and don't rise to the bait I win, when she elicits a reaction my daughter wins. I still lose too many points, but I win overall and this helps me feel a little better when she gains a point.

To keep doing this I need to be on top form, I need to be strong. I need to find ways of managing the stress and to always remember that sometimes in order to best look after my child I need to take the time to look after myself and enable my husband to do the same.

I'm not pretending that this is easy, in fact it seems to get harder the more challenging her behaviour is. When she is particularly adrift I struggle to muster the energy for anything other than slobbing on the sofa watching mindless TV. But when I look after myself it helps, I feel more capable, energised and more determined not to let her win even a single point.

I have tried to find the answers at the bottom of a packet of Maltesers but unfortunately I know that eating healthily has a positive impact and that if I want to have the energy to remain calm I need to fuel myself properly. Happily, I've worked out that if I'm pinny clad in the kitchen I get peace. Even my incredibly stubborn 8-year-old can't argue with the logic of me being busy when I'm stirring a risotto, she's permanently hungry so letting me cook might be accused of selfishness.

Then there's the sleep issue. My first reaction to stress is to completely lose the ability to fall asleep, which then turns me into a wreck running the gauntlet of my emotions. I try to make time to go to a weekly yoga class and have been dipping my toe in the water with mindfulness, a type of meditation using the Mindspace app on my phone. It takes only 10 minutes and that quiet time makes my head a calmer and sleepier place at bedtime.

My husband and I both take the time to focus on our hobbies. I work in some time to read and to write; it might not sound like much but I need that brain activity to keep me sane in a world of packed lunches, lost socks and menu planning. It's hard to have the discipline and the self-control to walk away from the chaos of family life; but what a difference it makes.

For my husband it means taking his beloved bike out for a 50 odd mile cycle. When he works shifts, and isn't always about at weekends, it can be hard to remember that he needs this as much as we need him. When he arrives home sweaty and disgusting, with a massive smile on his face, all reservations about him losing quality family time are lost.

Quailty family times means that both parents need to be in a place where they can appreciate it, and for us this means remembering that occasionally we have to put our own needs first.