M: A to Z of Family Rights and Lives
We continue with our A to Z of Family Rights and Lives. We’re over half way there now and today we are looking at M. M is for Magic Wand, Manic, Me and Merry Ordinary Christmas.
Magic wand: what would you do if you could just wave that magic wand around? Would it be someone to do your ironing; or the sink to always be free of plates and mess; that the house would stay tidy; the children always do their homework without being told; that the sandwiches were miraculously made each morning; or that you could lose that weight by eating chocolate?!
Tell us, we would love to hear what you would want a magic wand for.
Manic: we lead crazy, busy, whirlwind lives’ juggling numerous balls in the air and every now and again stepping over the ones we may have dropped on the way. It is never dull in our house and life is never boring. We live in the fast lane and run around at 90 miles an hour, heads spinning and planning our next move as if we were heading towards check mate on a chess board.
Me: who is the most important person in our lives? It is hard to admit especially because often it is easier to care for others rather than ourselves. As parents of disabled children we are dashing around non-stop doing things for our kids, partners, and extended family. We are listening and supporting friends and even setting up support groups, running forums, challenging cuts and local authorities, going to appointments and endless, often pointless, meetings. On an aeroplane we are told that if the plane goes down in an emergency we should put the oxygen mask on first so we can then look after our kids. It is so important that we look after ourselves – the journey is long and rocky and if we are falling over at each hurdle we encounter then we are no good to anyone else. So, do look after Number One! Make time for seeing friends, hot baths, eating healthy food, keeping fit and looking after your emotional well-being. Any other ideas on Looking After Me, do let us know!
Media: disabled people and families are depicted as either benefit frauds, victims, desperate, sad, or angry in the press. Disability is not sexy and although the tabloids are happy to put a story on the front page about a tragic mother who jumps off a bridge with her severely disabled child; or the mother who decided to have a termination when she found out she was pregnant with a disabled child. We need more disabled people to be in the media doing ordinary things and achieving in a mainstream world.
This is a list of the 5 most important things people must do and think about when using the Act:
- Start off by thinking that everyone can make their own decisions.
- Give the person all the support they can to help them make decisions.
- No-one should be stopped from making a decision just because someone else thinks it is wrong or bad.
- Anytime someone does something or decides for someone who lacks capacity, it must be in the person’s best interests – there is a checklist for this
- When they do something or decide something for another person, they must try to limit the person’s own freedom and rights as little as possible.
Mental Health: “The vast majority of parents caring for a disabled child experience periods of stress or depression at some time. Most link this directly to the additional pressures of caring for a disabled child” Contact a Family, Relationships and Caring for a Disabled Child.
- One in ten children between the ages of one and 15 has a mental health disorder
- 1 in 4 British adults experience at least one diagnosable mental health problem in any one-year,
- Mixed anxiety & depression is the most common mental disorder in Britain, with almost 9 per cent of people meeting criteria for diagnosis.
- Between 8-12 per cent of the population experience depression in any year.
Things are pretty bleak eh? Looking after Me is even more important. We are on a marathon of a journey and saving our energy and making sure us as parents and our family stay in one piece is a priority.
Money: We hear about cuts, austerity measures, bankers taking massive bonuses, bedroom tax, benefit frauds, Independent Living Fund being slashed, deprivation and poverty on the increase, and the gap widening between rich and poor. Money makes the world go round, but now and in the future the reality is that there isn’t enough to go round. It is a time to be creative, to be looking at communities and building capacity to come up with new cost effective ideas that meet the needs of our families in a way that services are unable to.
Mountains to climb: It can sure feel like that. What do we need to take on the way so we can get to the top in one piece? A positive attitude, determination, staying focused, good health, not going alone, pre-planning and the right information, good navigation skills, a head for heights, emergency contact numbers, not rushing on the way, taking plenty of stops, reflecting and learning from others, getting advice on the best route, having confidence in your abilities and staying calm in tricky situations. Better pack a big suitcase to get there.
Moving and Handling: Services and organisations are bound up in moving and handling and are unable to lift, or need two people to hoist and can’t do this and can’t do that. Yet, we lift our kids up without any real training for us as family carers. I never quite understood why the very people who do most of the lifting get the least support which is probably one reason why bad backs are prevalent amongst parents of disabled children.
Mum: “Mum” shrieked from upstairs, “Mum” shouted at from the utility “Mum” when the kids are doing homework, “Mum” at bedtime and our favourite “Dad. Where’s Mum?” Let’s celebrate and bring out the wine/beer/champagne because mums of disabled kids are definitely the Mums of the Year!
Oh and seeing as it is December, M is also for Merry Christmas
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Debs is one of the co-founders and Directors of Bringing Us Together. She is mum to three child with a variety of SEND and has a great husband.