Is it fair? ~ Do you care?

Is it fair? Do you care?

The Disability Discrimination Act and the Equality Legislation are there to protect the most vulnerable people and ensure fairness. Why then does it appear that some are falling through the cracks? Why is it that some people with a learning disability and Autism seem to be being penalised for their disability? Some are even having their benefits sanctioned leaving them without an income for long periods of time. Why, because their disability hasn’t been recognised properly or has gone unrecognised.

Life is difficult enough for these individuals. Many are living a life of isolation right under our noses in our communities. Life in the community goes on and they go unnoticed. The consequences can be devastating and some are not here today as a result! How can this be happening in the 21st century in our towns and villages?

What can be done to change this? Getting a diagnosis is a good place to start! However, this is not something provided by the NHS because it’s not a health issue. Learning disability can only be diagnosed by Educational Pyscologists and therefore, it’s an education issue. The cost of an assessment ranges from £500 to £750 per person!

Wear the shoes of someone with a learning disability or Autism. Imagine being given the impossible task of proving your disability, when day to day living is enough of a challenge in itself. All they need is reasonable adjustments made to ensure they get the right daily support, the right benefits, the proper housing support and the best path into work or volunteering!

Where does anyone start? There are so few charities and organisations being able to offer support in getting a diagnosis but HEALS of Malmesbury is one doing just that! Enabling and supporting people to get a diagnosis is important but with numbers of people needing this growing, funds need to grow too in order that some of the most vulnerable get the help to live the best life they can.

“Never believe that a few caring people can change the world. For indeed, that’s all who ever have” Margaret Mead

Are you one of the few who can change the world for those who need help, empowerment and support in our communities today? Ask yourself is it fair? Do you care? If the answer is yes then maybe you can help by making a donation.

http://www.healsmalmesbury.com

The day in December the world stopped for me

The day in December the world stopped for me. It was 1996, the day was clear, the air was cold and crisp and the sun was shining. The children had gone to school and I was settling down to a cup of tea after the mornings usual getting ready for school mayhem. I was listening to music and was feeling relaxed and happy. The knock at the door changed everything. I opened the door to find my neighbour and friend at the door screaming hysterically. At first I struggled to understand her but then I understood. Was she really telling me that she couldn’t wake up little Ian? Surely, she was wrong? How could you not wake up a three month old baby?

Although I was pregnant and ill, I rushed into the house. I asked where Ian was and she ushered me into the front bedroom. I remember how warm the room was, on the floor was a small carrycot. Ian (wearing a white babygrow) was lying on his right side. I gently picked him up saying “now come on little man wake up Mr Sunshine is smiling” I got no response! Ian’s pupils were large, his eyes rolled and he let out what seemed like one breath then nothing. His left side of his body was purple and pink. He was gone and so I laid him back down in his bed, for a long time this action made me feel guilty. I realise now that in laying him back down, I did nothing wrong.

I went outside and called for help from neighbours, I called the doctor, the ambulance service (who called the Police which is standard practice in any unexplained death) and then I called my husband who worked alongside Ian’s father. I was running on auto pilot, it was like everything was happening to someone else and I was keeping it all together!

Christmas 1996 was a difficult one for us all because of that day in December. What should have been a happy time was one where I relived that day, where I spent most days struggling to comprehend how this could happen to someone so small. Of course what my husband and I were feeling could even come close to what Ian’s parents were going through and much of our time was spent helping and supporting them through their day.

Every year on December 7th, I spend time thinking of that day and remembering. I wonder if there was anything I could have done. I look at my daughter and I am reminded of how old Ian would be and I wonder about the young man he would have become. I didn’t get to say goodbye in February 1997 because of my own ill health, the doctor said no and so I left saying goodbye to my husband and oldest daughter. In May that year I visited Ian’s grave to say my own goodbye and to place a basket of white, red and yellow roses. On that day too the sun was shining.

I will never forget that day in December 1996 and I keep a treasured photo of Ian (a gift from his parents) taken just two days before he passed. Although the years have gone by and other events have happened in my life including the loss of loved ones and friends, that day in December the world stopped for me.

“The only disability in life is a bad attitude” ~ Scott Hamilton

“The only disability in life is a bad attitude” ~ Scott Hamilton

This is true! It amazes me that we legislate against discrimination against those with a disability and things such as malicious communications. We live in an age where our children are educated about equality and diversity and even study citizenship. We’re considered to be an inclusive society or at least that’s what we like to think. The notion of community and caring is something we understand. How wrong can we be?

Over the years I’ve come across people who’ve said that at school their child had a diagnosis of a hidden disability but they’ve outgrown it! Can you believe that some people actually think that hidden disabilities suddenly disappear in adulthood! If you are born with a hidden disability then you’ll always have that disability ~ how it affects the person might change and the challenges in life will be different but it’s still there ~ no miracle cure exists.

Parenting a child with their own challenges is a whole new ball game ~ the rule book is totally different. I know when my own daughter was small how frustrated I’d become because I struggled to come to terms with the fact she was different. Then I started to think what it must be like for her, how can she be dealing with life. Susan Hampshire says “it is a lonely existance to be a child with a disability which no-one can see or understand, you exasperate your teachers, you disappoint your parents and worst of all you know you are not stupid.” This says it how it is, I made the choice that my daughter would not disappoint me because I would always do my best to try and see things from her perspective ~ although life will always hold challenges for both of us we’ve succeeded. In helping her, we can use our experience to help and give hope to others.

Many adults with hidden disabilities go on to have children of their own who face their own challenges because they too have a hidden disability. How much harder is it for these parents to navigate life? It’s a bit like having a bicycle kit to fix a car ~ no matter what you do it’ll never be enough. Is any of it the parents fault, whether they have a disability or not? Of course it isn’t!

Why is it that there are those who take delight in bullying those who are vulnerable? Those who make vulnerable people with a learning disability think that they are friends and then coerce them into behaving in a certain way?

NEWSFLASH! People with hidden disbilities cery often are unable to read the signs, they have difficulty distinguishing, banter, jokes, sarcasm, etc because they take life at face value.

Shame on those who know these individuals are vulnerable and still persist in making them think that they are their friends so that they’ll behave in an inapproriate way or do something wrong. What makes it worse is that these same individuals will then take pleasure in publicly humiliating the vulnerable because they have behaved and done exactly what those coercing them had wanted.

I’ve witnessed such behaviour over social media and I’ve also seen the posts by those vulnerable individuals. Maybe those doing the humiliating should think about them, just once! All they want to do is fit in, have friends, be like everyone else ~ don’t we all want that? It’s because they want to fit in that makes them an easy target!

“Disability is a matter of perception. If you can do just one thing well, you’re needed by someone” ~ Martina Navratilova. This is exactly one of the reasons why Heals – Help Empowerment And Local Support was set up. We help those who are vulnerable to have a voice, to find the things they are good at and encourage them, so that they can feel part of the community and avoid leading an isolated life.

What would I say to those being negative to those with hidden disabilities? I’d say start looking at the person in the mirror and ask them to change their ways because no message could be any clearer. Take a look at yourself and make a change ~ the world will be a better place and you’ll be a better person too because “the only disability in life is a bad attitude” ~ Scott Hamilton.

http://www.healsmalmesbury.com

http://localgiving.com/charity/healsmalmesbury

http://www.alisoncross-jones.com/

“Don’t carry your mistakes around with you. Instead, place them under your feet and use them as stepping stones. Never regret. If it’s good it’s wonderful, if it’s bad it’s experience.”

“Don’t carry your mistakes around with you. Instead, place them under your feet and use them as stepping stones. Never regret. If it’s good it’s wonderful, if it’s bad it’s experience.”

Over the years I’ve met a number of individuals who seem unable to move their lives forward because of their mistakes or something that went wrong or because something they had no control over has made them feel inadequate. The truth is it’s life, everyone faces these situations at sometime or other.

No-one is perfect and until we accept and learn to love ourselves for who we are, moving forward for some will remain an uphill struggle.

So how is it some people do and become successful? What sets those people apart is the ability to learn from every situation whether they be positive or negative.

There have been a number of times in my life when I’ve felt that was it, I couldn’t go on and I couldn’t see how I’d ever get back up but I did. I look at my life today and realise that I’m more resilient than I thought I was. I could have accepted the stereotypical ‘label’ placed on me by society – I was a single mother therefore, I wasn’t going to succeed and neither were my children. For many years this is what I expected and this is what I got! I now realise that whatever you strive for you can achieve but you have to be motivated, want it, see it and plan for it. You may not reach it the first time but you will achieve and you will be successful.

I am always amazed when I speak to successful people because the result isn’t always what they expected, in many cases it’s better! This is exactly how I feel! I knew I’d be doing the kind of work I do now but I didn’t think that starting and building a charity would be quite so exciting and rewarding.

Carrying your mistakes around with you weighs you down. I often liken it to Marley in the Dickens classic Scrooge. In death he carried around this huge chain, not being able to move forward. Carrying our mistakes is a bit like that too because we can end up carrying around our own invisable chain, which prevents us from being happy and it makes those around us unhappy too.

So, look at your own life and don’t carry your mistakes around with you. Instead, place them under your feet and use them as stepping stones. Never regret. If it’s good it’s wonderful, if it’s bad it’s experience.

http://www.alisoncross-jones.com

http://www.heals.btck.co.uk

The Challenges of being a parent

I was speaking to a professional the other day who said, being a modern parent was far more difficult than years ago, especially in these changing times. I came away thinking, yes, times are changing but haven’t they always? Is parenting today more difficult than years ago?

Perhaps the biggest difference is the way we live our lives. There seem to be so many more pressures with both parents needing to work, talk about juggling things! Unlike years ago, families tend to go their separate ways. I’ve found it challenging, living away from my grandchildren and I know I’m not alone.

Parenting as a couple is difficult enough but imagine doing it alone. As a single parent I’ve found the juggling at times over whelming but you keep going. Being a parent has been one of the most challenging but rewarding jobs I’ve ever had.

Finding myself on my own again sixteen years ago filled with dread and the green, green grass of home was far behind me! I quite literally had to start over again and although the journey here has been ‘interesting’, I’ve survived. For me the greatest challenge was dealing with the ex-husband. Thankfully, over the years we’ve been able to put aside our personal issues and feelings and parent together even though we’ve both moved on. The journey to this point has been far from easy and putting the emotions and feelings I felt aside was probably the hardest.

I often hear single parents putting the other parent down to their children. When I’ve challenged them about why they’re doing this, the answer’s been “well they need to know he/she has been a …. bleep” or they’ll say “well I’m only being honest”. Of course as a parent you have to be honest with your children but I have always tried to that fairly. I say tried because I’m aware I’ve not always got it right either.

With my children it’s been about them seeing that adults make mistakes but that mistakes made by the other parent doesn’t mean that their loved any less. Neither does is make the other parent a bad person. Who hasn’t made mistakes?

I hear many parents say that they wished their children had come with an instructional manual because life might have been easier, because although we love our children unconditionally, there are times when as parents we could scream!Mix in parenthood with a child with additional needs, then you really are juggling balls while tying your shoe laces at the same time! 

When things get difficult wouldn’t it be great to have ‘Super Nanny’ or ‘Nanny 911’ living in a cupboard under the stairs? At least then you’d have hands on expert advice. For me you can read all the books, take all the advice and it still doesn’t prepare yourself for parenthood.

Today the challenge for parents seems keeping their children as children and not getting caught up the ‘must have it now and blow the cost’ society we seem to be cultivating. Barbara Johnson puts it simply when she says: “To be in your children’s memories tomorrow, you have to be in their lives today.” This is very true. If I were ask my own daughters what things they remember from when they were young it would be, the flying lesson as a thirteenth birthday present, days at the seaside, a day in London or me going into primary school with a surprise birthday cake. Long after the gadgets have broken or been outgrown the memories remain. It’s about spending time with your children.

Of course for my children our one collective lasting memory is of the greatest girl band never discovered ……. me and my girls, hairbrushes in hand! We even created our own actions to dance to! The passes of time have now unfortunately split the band! However at birthdays, weddings, etc the band does reform!

“If you need me, call me no matter where you are no matter how far. Just call my name and I’ll be there in a hurry, on that you can depend and never worry…………. I know you must follow the sun wherever it leads but remember if you should fall short of your desires remember life holds for you one guarantee you’ll always have me……………… Ain’t no mountain high enough, ain’t no valley low enough, ain’t no river wild enough, to keep me from you”. Diana Ross – Ain’t no mountain enough. Time and memories are far better to give your children than any toy.

For me these words have real meaning because they about doing everything possible to be with the ones you love. For me this is my children and grandchildren. Unconditional love for our children is something that comes and smacks us in the face and instead of hitting back we embrace it and ask for more!

What about when our children grow up and make choices we disagree with? The challenge is how do we as parents’ support the children we love to take a path we know may lead to hurt? The answer is we can’t, what we can do is be there to help put things right. Besides, mistakes are not the end of the world as long as you have the love of your parents. I know, I’ve made my fair share but hasn’t everybody.

“Parents can only give good advice or put them on the right paths, but the final forming of a person’s character lies in their own hands.” ― Anne Frank

Gosh, these are wise words of wisdom, from someone so young.

This blog is part of the I Am Woman 30 day blogging challenge.

http://www.iamwoman.biz

 

“There are far better things ahead than any we leave behind” C. S. Lewis

If only we had a way of knowing what lies ahead? Would we even want to? Maybe it would help us to avoid the things that hurt us? Or maybe it would lead to disappointment? In my life I’ve learnt it’s the ups and downs, the unknown, the surprises and the challenges that make us who we are.

Today through my work, I’ve talked to parents of children with additional needs, who are on their journey into the unknown and uncharted waters of life. It’s reminded me, how every situation differs and how the only common denominator are that there are parents, with more questions than answers. No encyclopaedia Britannica, is going to answer those questions! I know because I’ve walked in their shoes and worn the t-shirt too. Looking back, I’ve lost count of the number of times, I wanted to escape from life with this ‘odd child’ and I’m still trying to find the instruction manual !

It wasn’t all bad though, there have been times of great laughter and humour and it’s the good times, that compensated for the bad. A friend once quoted an unknown author, saying “when life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile”. Over the years, it’s occurred to me that conquering Everest or swimming the Channel would have been easier and since I swim like a brick, that would have been something!

Thank goodness, I didn’t listen to the so called experts who’d all written my daughter off, at age seven. Today aged twenty-one we’ve proved them all wrong. We’ve survived, we’re still both breathing, [which is always a good sign]  and together we shout, “NEXT” or “Bring it on”!

I’ve often said that my daughter came into my life to make it exciting and it’s certainly been that!

In the last eleven years I’ve been lucky enough to have helped other parents navigate their own course of life with their unique children. In the words of Diana Ross there, “ain’t no mountain high enough”.  Some would say being on my own journey, I must be mad to do it again and again with others, I thought madness, was a prerequisite!

Life continues to throw challenges to us all and we should meet them all head on because “there are far better things ahead than any we leave behind”.

This blog posting is part of the I AM WOMAN 30 day blog challenge.

http://www.iamwoman.biz