Are you gonna spend your day down in the dirt?

As I write this, it is the morning of Friday 8th March, 2015.

  • The day after the General Election.
  • The day we realised that we are highly likely to have a Conservative Government for the next five years.
  • The day Esther McVey lost her seat
  • The day Ed Timpson kept his seat
  • The day Norman Lamb kept his seat
  • The day Ed Balls lost his seat
  • The day Andy Burnham kept his seat
  • The day Simon Hughes eventually lost “the straight vote”
  • The day Vince Cable lost his seat, along with David Laws and many other Lib Dems
  • The day SNP won 56 seats for Scotland

Whatever your politics, there will have been one or two shocks and unexpected twists.  Some results which made you happy, some which made you possible cry.

As I sit looking through Facebook, it is full of many families with disabled children or families with children with SEN or those with older family members expressing concerns about the next five years and the odd few families with great local MPs who are happy.

I have to be honest, having sat up all night, I am tired and feeling quite emotional.  I am actually quite frightened but know I am tired.  I am not a happy person when I am tired.  Like many of us, sleep deprivation is par for the course but this can cause huge mood swings and make our anxieties increase in size.

When my hubby rang this morning, I shed a few tears – more the fear of the unknown or the fear of some of the rumoured changes ahead.  However, he made me stop and think.  He asked me “Debs, what is the one thing you always do?  When something doesn’t go to plan, when you don’t get the result you want?  What do you do?”

I thought for a minute (lack of sleep doesn’t help when thinking of an answer, as we all know) but then it hit me.  What do we all do?  How do you want to spend your day?

We get back up and go again!

  • How often are we knocked back?
  • How often do we get turned down?
  • How often do we have to appeal?
  • How often do we want to bang our head against a wall?

Who relates to this process?

  • Apply for a Statement/EHC Plan?
  • Get turned down
  • Get back up and try a different way?
  • Apply for a therapy
  • Get turned down
  • Get back up and try a different way?
  • Apply for support?
  • Get turned down
  • Get back up and try a different way?

It’s often a regular event in our lives.  I know we actually think of not getting what we ask for as part of the process.

So, the one thing we families have a real skill at, the one thing we can do, whether we want to or not, is get back up and try again.   We often surprise ourselves with our resilience.

Unity is powerfulUnity is Powerful

If this wasn’t the result you wanted, do whatever you normally do.  Have a day off, scream, shout, cry, go for a jog, whatever you do to let off steam.  Then you need to get back up and make this work by doing something different.  There is a saying “if you do what you’ve always done, you’ll get what you’ve always got”.

However, it’s difficult to do anything new without support.  As the Style Council said “Unity is powerful” so the thing we need to sort out is how we (and by we I mean families and those interested in working with us), unite.  There are so many groups out there and that’s great -one size does not fit all.  So somehow we need to find a way for all of those groups to unite and join forces.

If you stand alone, you are the equivalent of a busy fly in the room.  You cause some distraction, you are annoying but eventually you get tired or you get swatted. tweet

If we want to make this system work well for us, if we want a system where accountability is a major concern for the Government, if we want a Government who is going to actually walk the walk and not talk the talk, we need to come together somehow and have a joint voice.  As a real joint voice, we will get much further down the road than we are now.  Currently, parents trying hard to represent parent voices are often unsupported, exhausted or disillusioned, or sadly in some cases not trusted.  So they sometimes fade away or lose their passion or sometimes, they lose their vision.  With no back up in place, the parent voice goes quiet.

Or families don’t know these groups exist, or we do but we don’t think it makes a difference so we just go for a coffee with mates and say how rubbish the system is.

So what do we do?

How do we co-ordinate the views and feelings of ALL families so that we have a united voice?

This is a many pronged issue:

  • How do we make sure that families know about the LB Bill, IamThomas,  Special Needs Jungle, IPSEA, Educational Equality, Parents Protecting Children, Bringing Us Together, Justice Together, Educational Rights Alliance, ALLFIE, Parent Forums, Carers Associations and other parent driven groups and sites.
  • How do we make sure families know about SEN Direct, Contact a Family, CDC, EDCM, etc?
  • How do we ensure that those parents have a place to feed into?
  • How do we ensure families can have their views heard?
  • How do those groups work together, how do they promote each other?
  • How do we get people to put personalities and personal agendas to one side and unite?

We need to find a way to do this.  It may be that we have a few options available so families still have a choice (some parents are like me and really hate being told what they HAVE to do).  Maybe different groups for different issues but an easy signposting guide for families so they know who to feed in to?

Ideas please

  • What would work, how would you like to feed in?
  • Do you like to feed in via a choice of groups/organisations or sites; or
  • Do you prefer just one place to go?
  • Do you have some suggestions for groups that you would like to use?
  • How do we ensure families are informed, when they want to be informed?  I am not talking the LA local offer (please, I can’t do another political rant today, I am too tired)!!!

There has to be ways to do this.  What would you suggest?

 

 

You may also like...

2 Responses

  1. Lisa Thomas says:

    What a great read.. The hoovering husband was did us all a favour; onwards!

    We need a well regarded middle woman to create a strong accessible on line debating forum and then use the power of collective thinking to strategise with ET (or blue replacement?) – especially for accountability, standards and inspection in LA and schools, a-l-health. And to persuade everyone they can do more with less!
    NNPCF doing good job and working so hard, but still not well enough known. SNJ has the ear as well as the voice of parent carers.
    I vote coallition SNJ + NNPCF + ET

    Absolutely hit nail on head with unity message – carer support network highly fragmented due to so many great startups stepping up where govmt/LA fail. I deliver Early Support workshops – a sort of induction workshop to SEND world. Every parent should have this option if they want – to get a quick fix on all the good help out there and how to safely vavigate SEND World.

    We need to step up pressure for ES – early intervention is cheaper than late mediation/medication when it all gets to breaking point.

    Stick with us SNJ; need you more now than ever.

  2. I know the feeling! Exhausted and disgusted with what families including my own have to go through at the best of times. However this is the worst of times, we can only imagine with horror what a further £12.billon of cuts will do to our already depleted and litigious system. Unity is the only answer. We work hard for families on a ground level basis, but the queue of those who are baffled or cheated by the system keeps growing.
    Organisations who have some knowledge of the Law and processes really do need to come together to fight this injustice. There are many differing views about how this should be done and what the focus should be, but we all recognise that there are significant flaws in the new system which are going to be a barrier to children receiving the support they need. I would willingly work with any other organisation, or individuals who want to help. I would like to see a conference for those who want to pool ideas and issues which need to be raised. There is no room for ego in this situation we just have to do our bit to try to make things change, accept each other’s good intentions and contribute without criticism. I also know that many parents feel powerless and some even apathetic and ignored, and perhaps as organisations we need to give them some clear guidance and inspiration to fight on. We are all in this together!

Leave a Reply

Your email address will not be published. Required fields are marked *

CommentLuv badge