When they are good, they are very very good

There was a little girl

BY HENRY WADSWORTH LONGFELLOW

There was a little girl,
Who had a little curl,
Right in the middle of her forehead.
When she was good,
She was very good indeed,
But when she was bad she was horrid.
“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.” - Maya Angelou

Divided we fall…

Most of us did not chose to live in this community, we were dropped into it.  Dropped in from a great height, very quickly, with no warning and no safety net or soft landing

We eventually start to find our feet, although most of us probably fell back down on a number of occasions and, as my son would say, many of us have probably said more than a few naughty words during this time.

Some of us would be given the “Welcome to Holland” poem or be told “God only gives special children to special people” by those who meant well or those who didn’t know what else to say.  Some of us would appreciate it, some of us would quite happily have shot the messenger.

We would learn the jargon we thought we needed, only to go into another meeting and hear yet more new acronyms.

We would have total strangers in our homes, advising us how best to have our child eat, sit, walk, talk and we would feel, on more than one occasion, that we were just useless and our poor child was so unlucky to have drawn you as their parent.

We would learn to navigate a system, that is, at best, difficult or at worst, not fit for purpose.

We would complete pages of forms explaining at length the things our child couldn’t do, how they were lacking in their own ability.

We would also sit in meetings with practitioners discussing our child’s development, or lack thereof, often with the very child having to sit in the same room.

teamwork successAll of this just seems par for the course and we accept it.  However, the one thing that continues to amaze me is the fact that so much of our strife and stress comes not from practitioners and poor systems, but from other fellow-parents or from those who are supposedly there to support us – those who should know better – not working together or judging us.

Recently, there was an amazing social media campaign: 107 days – Justice for LB.  The one thing I loved most about this campaign was the absolute solidarity it created.  Everyone stood with LB’s family and supported them.  Everyone was working together towards the same goal.  I felt proud to be part of that amazing Community. We all left egos at the door, politics and personalities didn’t matter; everyone just wanted to get on board and work together.

Then the campaign finished, making some great achievements in the process, but with it went that feeling of togetherness and a true team.    We have quickly reverted back to making it about ourselves and how these thing affect us rather than thinking “wow, we managed to achieve some great things together, what next?”

Sadly, we appear to be heading back to “every man for himself” and not “we’re in this together”.  As a mum of three children with SEN/Disabilities, I know the challenges that we face and how difficult it can be to think of the bigger picture when we are fighting for our child but I know that if I want things to improve for my children, it has to improve for all children, or we will continue to have a system that works only for those who shout the loudest.  I am absolutely exhausted from all the legislation I have had to read and comprehend, I am emotionally drained from all the appeals and battles we have had and I am frustrated beyond belief when I have to spend time being “advocate/secretary” when I want to spend that time being “mum”.

My children will be young people one day and I know from the Justice for LB campaign and Mark Neary’s Love, Belief and Balls blog the difficulties that may lay ahead.  As difficult as it to read some of their experiences and as much as I would love to believe it could never happen to us, I know that sadly if we don’t stand together now to make it better, then it really could happen to us, and it could happen to you.  I am grateful that they have taken the time to share their stories because they are stories we need to hear.  There are many stories out there and we need to do something together to stop these stories being repeated in the future.

Bringing Us Together has launched a concept of “Mastermind groups“.  People with similar interests, working together towards the same goals.

However, I am not arrogant enough to think that everyone would want to work with us at Bringing Us Together, nor do I think it should be the only option.  In the same way that our children and young people do not fit in just one box, neither do we.

  • Some of us like Facebook to stay involved, some of us hate Facebook;
  • some of us use Twitter, some of us just don’t get it;
  • some of us love on-line forums, some of us find them quite “cliquey”
  • some of us are involved with local support groups, some of us would rather not;
  • some of us are involved in parent carer forums, some of us dislike even the idea of them;
  • some of us read blogs and respond to questions and surveys on there, some of us find that eats away at our data package.

We are all different and we all have something to offer.  We can all get involved in making a difference but we have to work together for this to be effective.  Being told that the only way you can make a difference is by taking one route takes away our choice so we don’t engage.  We need creativity and new ideas/suggestions and more importantly, we need to learn that we don’t all have to be in charge to make a difference, we can achieve more as part of a great team.

When we work independently, we are duplicating the work, coming up with the same results and getting exhausted.  Then guess what?  Nothing changes.  No one wins.

The Justice for LB campaign showed us it is possible to do it.  So, think about how you could make a difference.  Then think about what you would like to change.  Then find a team that works for you and share their progress with others.

 

 

 

 

 

Today, I lost a friend

jemToday I lost a friend.  Those five words cannot convey the heartbreak I am feeling.

I lost an amazing friend who has been part of my life for over 20 years.  He was the type of friend everyone should have.  My life was certainly richer for knowing him.

Who was Jeremy?

A friend who didn’t judge.

A friend who helped put me back together when relationships failed.

A friend who made me laugh more than any other person.

A friend who made me laugh with just one word or one look.

A friend who knew how to have fun and party.

A friend who would dress up as a Gypsy fortune teller at company’s parties

A friend who spent hours making a papier mache Island for a company party with each member of staff having something on there named after them.  I had “Swindley’s Peaks” for fairly obvious reasons.

jem marc and chris
L to R: Marc, Jem & Chris Handsome Herbie

A friend who would give up his bed for his guests

A friend who would leave Action Man figures in his bed so you didn’t feel lonely or bad about having no boyfriend

A friend who introduced me to some other fun loving and wonderful men

A friend who holidayed with me (before children)

A friend who loved that the Turkish cafe owner asked him was he “happy” and did he like other “happy” men?

A friend who happily line-danced with the over 70’s in the bar

A friend who loved charity shops and bargains

A friend who loved music from every era

A friend who knew more about the history of this country than any history teacher I had ever had

A friend who made history come to life

A friend who researched his family tree and was determined to find that we were related somehow – he was adamant he looked too much like my Dad for us not to be related.

A friend who shouted “D H Darling” whenever you left the room to get anything.  D H = Do Hurry.

A friend who took me into a gay bar and insisted on calling me Lesley Ann.

A friend who left messages on my ansaphone which started “you’re probably under a sweaty lorry driver” – when he hadn’t realised that my mum was visiting.

A friend who assured me I could still do handstands in my 30’s after a few drinks – I really couldn’t

A friend who believed in Narnia.

A friend who brought a bag with his drill to work instead of a bag with his lunch – we were never sure how heavy his lunch must be

Jeremy
L to R: My brother, Dad and Jeremy

A friend who organised my hen night and turned his home into “Aspland Manor” for a weekend.

A friend who organised top hat and tails for the men at the hen night.

A friend who stood next to me at my wedding as my best man.

A friend who dieted more than I did before my wedding as he had to give his measurements for a kilt he had to wear

A friend who worried for weeks about what to wear under the kilt

A friend who gave a Best Man’s speech at my wedding that shared the real you with my friends and family

A friend who was proud of what I achieved in my career

A friend who was so proud of my family and all their differences

A friend who asked if I was sure my daughter was mine when he first met her – because she was so pretty

A friend who made me realise I had to celebrate what I had achieved rather than focussing on what I hadn’t.

The list could on for a long time.

Jeremy was Jem.  Jem by name and a Gem by nature.  He was one of life’s good guys and was loved by so many.  He was someone I am totally honoured to have called my friend.

I will miss him everyday.

RIP my beautiful friend.  I hope you find the peace you need.

Jeremy Ian Jones

03.12.58 – 12.07.14

 

 

Justice for LB – Let’s Walk, not Talk

justice for lbHere we are, day 95 of the #JusticeforLB 107 day campaign.  A campaign that should never have had reason to happen.

I have followed My Daft Life for many years, initially with smiles and laughter – relating to some of the experiences.  However, my children are still under 10 so much of the battle with the Unit and the poor support during transition was something I could only read and think “oh please, please, please let things have improved by the time my eldest reaches this age”

 

Will things change?

During my short time in this Jungle, I have met so many people who talk a good talk.  People who tell you what you want to hear, people who promise you everything and people who tell you they are going to change things.  I have been involved in lots of box ticking and lots of hit and run consultation.  I have spent hours in meetings, often on a voluntary basis, because I thought it would make a difference if the views of families were heard.

Sadly, I walked away from many realising that I had achieved nothing except to allow others to say “we listened to families” or more accurately, “we listened to families because we have to, but we did what we had planned to do anyway”

The 107 day Justice for LB Campaign is giving us all the opportunity to get involved, to unite and to campaign for a difference that will actually help our families.  If you, like me, have young children and think “well this doesn’t affect me”, think again.  Time flies quickly and your little one will soon be a little dude or dudette.  This campaign is for all of us, all who have a child or a young person with a learning disability in our family, irrelevant of age.

We are not just talking about parents and carers, we are asking everyone – siblings, aunts, uncles, grandparents, carers, godparents and friends – please get behind this campaign, unite and make a real difference.  Please.

 

Let’s Walk, not talk

 

 

 

 

 

 

 

 

 

 

The Good, the Bad and the Ugly

Almost ten years ago, I gave birth to my first child.  For the first 6 months, we had the usual anxieties that new parents have with no warning of what was to come.

Within two years, we had three children and had to learn about hydrocephalus, autism, retinopathy of prematurity, severe visual impairments, speech and language delay, oral dyspraxia and many other “labels”, while spending far too many days sat in hospital wards or outside operating theatres.

Our dreams and goals all changed and a new perspective had to be learned and appreciated.  We’ve had to learn to handle the Good, the Bad and the Ugly of this unexpected community.

k birthday 2013The Good

  • You will meet some amazing people.  Some of the people I have met due to my children are people I would possibly never have connected with otherwise, and wow, am I glad I met them.
  • You learn what is and isn’t important.  Suddenly having the designer labels, the latest car, going on the holiday of everyone’s dreams or being seen in the right places just doesn’t matter anymore.
  • Your real friends will come through for you in ways you can never imagine.
  • Your sense of humour becomes quite warped – or so it seems to some of your mainstream friends
  • You will find support from other parents, either those who have been there before you or are travelling alongside you
  • You will find energy reserves which would be the envy of some of our top athletes
  • Small, tiny, minute steps in your child’s development will become major milestones and causes for celebration
  • Your child will astound you and those around you

 

let the stressThe Bad

  • You will have more “practitioner” contact details on your phone than friends
  • You will realise that many people don’t have any expectations for your child
  • You will lose a lot of people from your life, those who don’t know what to say or do so they stay away.  Sadly, you won’t know what you want them to say or do either so you can’t help
  • You will become a secretary, a nurse, a therapist and an advocate for your child
  • You will juggle appointments, therapies and appeals with running a house, other children and for some, holding down a job.
  • Your child will become a label, not an individual
  • You may be consulted, but often not listened to
  • Family days/meals out either become a pipe dream or an event organised with military precision
  • Your mainstream friends will say “oh my child does that”, which will make you say lots of naughty words in your head
  • You will possibly be accused, directly or indirectly, of looking for problems where they don’t exist.
  • You will possibly have to learn a new method of communication
  • You may be asked to make an informed decision without being informed
  • You will feel totally out of your depth in many meetings due to the jargon being used
  • You will be the only person in many meetings who does not control a budget.  You may have a personal budget but control, well that is something very different

 

barrierThe Ugly

  • Your expertise in your child will be ignored by many
  • Your child will have to fit into a system, the system won’t fit around them
  • You will spend hours fighting the above system to try to make it work for your child
  • You will fight for your child and often become known as the neurotic mum or the rottweiller
  • You will be most likely to be offered and/or prescribed anti depressants
  • You will be most likely to be offered and/or prescribed anxiety medications
  • You will possibly not meet the criteria for a short break
  • You will be exhausted
  • You will keep going and going until you actually break down, then you have to get back up quickly to carry on
  • You will have to learn how to understand the Education Act, the SEN Regulations, the Equality Act, Disability Discrimination Act and many more laws set up in order to ensure your child is protected
  • Having all of that legislation still won’t make your life easier
  • Local Authority policies do not always relate to the law
  • Head Teachers are sometimes not accountable to anyone – in theory, yes but in practice, sadly not
  • Your child’s best interests do not take priority over budget constraints, even if the legislation says it should
  • You will possibly hear yourself be referred to as a “benefit scrounger”
  • You will be judged to be a bad/neglectful/pitiful/self-pitying parent at some point
  • If your child has behavioural issues, related to their disability, your parenting skills will be called into question
  • You often don’t have anything in common with other parents of children with the same disability as your child
  • There are parents who are competitive about their child’s disability or services they receive
  • Some parent support groups don’t actually offer support
  • Some parents only want to help if they are also given the glory
  • Some charities set up to support families will forget their mission statement

 

clownBiggest Lesson

  • Common sense doesn’t exist in the world of SEN and Disability legislation and budgets

 

Would I change anything?

As the saying goes, I wouldn’t change my child for the world but I would change the world for my child

 

What have you learned as you travel through this minefield?

 

Why?

QWhy is it that when you have read everything you can about your children’s known conditions, another one pops up to knock the wind out of your sails?

Why is it that your children’s conditions cause such mayhem and turn your life upside down in a way no one can understand unless they’ve been there?

Why is it that people think it’s ok to judge your children and you without asking one question?

Why is it that everyone has sympathy for the child with no vision but no sympathy for the child with autism?

Why is it that you find yourself apologising to “friends” for having a moan?

Why is it that you feel guilty that your “mainstream” child doesn’t get enough attention?

Why is it that you know more about your child’s condition than most doctors?

Why is it that you struggle to cope with the extra demands with little, if any, sleep?

Why is it that you struggle to cope with little, if any, help?

Why is it that we get to choose from 30 special schools in a county rather than 30 mainstream schools in a town?

Why is it that when you think your “mainstream” friend “get’s it”, they suddenly say something which makes you realise they absolutely don’t?

Why is it that our children are at a higher risk of abuse but no one teaches them what is acceptable or not?

Why is it that our children are not credible witnesses when they say “an adult hurt me”?

Why is it we have to beg and plead to get the help our children need?

Why is it that we have to act grateful for every little thing, things our mainstream friends take for granted?

Why is it that we do this with little, if any, financial reward?

Why is it we can’t attend mainstream venues without ringing ahead to check how busy it is, or does it have wheelchair access or are there Braille signs?

Why is it that we usually find the information we actually need when it is too late to be of any use?

Why is it that if we speak up, we have to worry about the consequences for our children?

Why is it that when we do speak up, we are seen to be “neurotic”?

Why is it that when some parents raise concerns about their child’s development, practitioners respond by raising concerns of  “Munchausen by Proxy”

Why is it that when parents and families are consulted, nothing actually changes?

Why is it that so many charities exist to help families but some don’t help at all?

Why is it that children and young people die in care but nothing changes?

Why is it that communication about any important changes is so poor?

Why is that our children are seen as a label/diagnosis rather than being an individual?

Why?

 

This list could go on for eternity or so it feels as I am typing it.  So, let’s change and let me ask you another question.

 

How can we improve this?

I would love to hear how you think we can improve things, all suggestions welcome.

If you obey all the rules, you miss all the fun