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-20131The 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


The Bad

  • let-the-stressYou 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


The Ugly

  • barrierYour 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


Biggest Lesson

  • clownCommon 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?  

This post first appeared on Chaos in Kent


New pilot for Kent – Community Circles

What are Circles?

The idea of a circle is both simple and ancient. A circle is simply a group of people who come together regularly with a common purpose, who think and talk together, then agree and take actions that will further that purpose. It’s based on humanity and human relationships, and on the way that a group of people working together can harness their mental and physical resources toward a common end.

Is this national or just a Kent project?

Community Circles is a national project.  You can find out more about Community Circles at their website, on their Facebook page or follow them on Twitter.

We’re exploring how to create Community Circles at scale, using person-centred practices, so everyone can benefit.

CC LogoWhat is happening in Kent?

We are currently recruiting facilitators; and families who are interested in getting involved in a pilot to see how we can build connections and resilience.

Facilitators will help to co-ordinate and run the Circles on behalf of the families, with objectivity.  They will receive training in order to provide a person centred approach for the families.

Families will be looking to create a Circle to help them to achieve goals.

‘Circles of Support’ already improve the lives of a small minority of people in thousands of diverse ways.  How can we share the effectiveness of circles so that they touch the lives of many more people, and become a tool for building connection and resilience in Kent?

Who would benefit?

One issue that is common to many people who have long term illness or disability is that they become socially isolated. Here it becomes necessary to consciously build circles and connections with the person, because for some people connection does not occur easily or automatically.

Sometimes a circle can even begin with just the focus person and one other person making a commitment to work to build a circle of support around the person, however difficult that is, and however long it takes. This more ‘intentional’ work of building connections in order to overcome a person’s social isolation is what is meant by a ‘circle of support’.

Get Involved?

If you are interested in learning more or would like to get involved, please email debs.circles@gmail or ring 07805 232399.