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

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Could you be a facilitator?

Facilitators needed:

We are currently recruiting facilitators in Kent to see how we can build connections and resilience within families via Community Circles.

CC LogoFacilitators will help to co-ordinate and run Circles on behalf of the families, with objectivity. They will receive training in order to provide a person centred approach for the families.  The training is free and will cover a variety of person centred planning tools and how to facilitate a circle.

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.

‘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?

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.

Who would benefit from a Circle?

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 07508 232399.

 

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.

 

 

 

 

One Page Profile? Tell me more…

In the new draft SEN Code of Practice, there is a brief reference to One Page Profiles and Person Centred Planning.  Several people use these and know how powerful they can be, however, quite a lot of people asked me what they actually were.  So I went to Helen Sanderson of Helen Sanderson Associates and asked her to explain.

helen-opp-picMy daughter, Laura, had the first one-page profile when she was six, eight years ago. She had been in Year 2, for three weeks, when she came home one day in tears, saying the teacher had told her off for wearing the wrong trousers in PE. When we went to see Laura’s teacher, she explained that she had not told Laura off, but had pointed out that if she only had shorts, and not jogging bottoms, then her legs would get cold. She also said that she had not really been able to get to know Laura, as she is quiet in class.

We decided that we needed to help the teacher to learn more about Laura – and quickly. At that time I was the Department of Health’s expert advisor in person-centred planning, and I knew this could be a helpful approach, but I also knew that teachers would not have the time to read the detailed plans we were using. So, I created a one-page version for Laura – a one-page profile.

A one-page profile is a simple way to start personalising education. It is a person-centred thinking tool that provides a way to capture who each pupil is and how best to support them – as far as is possible on one page.

There are three sections in a one-page profile:

  1. ‘Appreciation’ – what people appreciate about the pupil, their character, gifts and talents
  2. ‘What is important to’ – what matters to them, from their perspective, about school and life
  3. ‘How to support’ – the ‘expertise’ from family, teachers and other staff about how to get the best out of the pupil (and the pupil themselves of course)

One-Page Profiles can be developed and updated throughout the school year and as part of the curriculum. The first part of a one-page profile is an appreciation  – what people like or admire about the child. We involved Laura’s extended family in contributing to this. It was lovely for Laura to hear what her family likes and admires about her. Then, over a hot chocolate in a cafe, Laura and I thought about what was important to her – her yellow Teddy Sunny who slept on her bed, her three cats, the stick insects and wondering if their eggs would hatch; and what we know as her parents about the best ways to help and supporter her – recognising that she finds change difficult and needs lots of reassurance, and that she can perceive a small negative comment as a big telling off.  Laura drew a picture of herself for the background of the profile and we made an appointment to share it with her teacher.

Laura’s one-page profile helped her move from class to class. Each year we updated it with Laura, and her teacher and Laura drew a new picture or chose a photo of herself. Fast-forward now to 2011 when, at the same school, Norris Bank, every child has a one-page profile. Stockport is the first local authority to commit to every child, whether in primary, secondary or special school having a one-page profile, and twenty-two schools in the borough are leading the way.

Screenshot 2013-11-27 12.14.21A one-page profile gives a shared understanding about the child, built from the knowledge of the child, the family and friends and teaching staff. They give parents an opportunity to share their learning and expertise on what good support means for their child, and what is important to them. It is these ‘little things’ that make a huge difference. Jen liked to have her socks pulled up, and could not settle in class unless her socks were just how she wanted them. If a teacher who did not know that, was to say, ‘Stop messing with your sock’, then that Jen would not be able to concentrate on the lesson at all. Guy was anxious about coming to school, and by doing his one-page profile, staff learned that he felt more able to cope if he had a seat by the door in the class room. All teachers knew that, and a simply thing, that did not cost any money, enabled Guy to stay in school.

Fundamentally, one-page profiles put the child at the centre of their learning and personalises their support to them, creating the best opportunity for each child to learn, develop and succeed.

One-page profiles are both a way to share important information, and also to the foundation of changes through person-centred reviews. Zach’s first one-page profile was created when he was in Year 1, following a person-centred review meeting. Many of the significant adults in Zach’s life came together with Zach to talk about what they like and admire about him, what support he needs and what’s working/not working for Zach. A huge amount of rich information about Zach was generated and collated by the school into his first one-page profile. This was shared with significant adults and used for transition to Year 2 to support a full understanding of Zach for new adults in his life. Zach’s one-page profile is re-visited at his annual person-centred review meeting and updated in this way according to his changing needs.

Helen Sanderson, Helen Sanderson Associates

Here at Inspiring Circles, we have used One Page Profiles personally – especially when our children are moving into a new class, having a new taxi driver or escort or if we get a new PA.  It is such an easy way to share the important information.

We really need more mention of these and person centred planning in the new Code of Practice.  With the removal of school action and school action plus, it is really essential that those children and young people who will now come under the “school based category” have the right support in place.  Having a one page profile and using person centred planning tools will really help this to happen.

So, if you are writing a response to the new draft Code of Practice (consultation finishes on 9 December so you still have time), then please add in a request for there to be a much stronger focus on One Page Profiles and Person Centred Planning tools within the Code.  

You can find out more about one page profiles on the following sites:

*  Helen Sanderson Associates

* One Page Profiles – create your own

*  Youtube