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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GPS: Giving Parents Strategies

20140105-132341Being a secret hippy, I love self-help books and blogs.

The more I read, the more ideas I get on how some of the strategies could help other parents of children with disabilities or special educational needs.  The strategies to “bounce back” after a bad day, the strategies to be resilient after a bad experience in the supermarket and the strategies to know where to go for support.

I know however, that I am fortunate to have the time to read through these books, I also know they are not the chosen reading for everyone.

So I have spent the last month or so working on a new workshop.  A workshop aimed specifically at parents, taking ideas from a number of books and providing some really practical ideas on how to survive the Jungle we live in.  I have used these strategies personally for the last few months and the difference they have made is immense. My hubby and kids are benefitting from a less-stressed out me and in turn, they too are calmer and happier (except this morning, when “back to school” arrived)!

GPS: Giving Parents Strategies.  There are several amazing courses out there on helping families to cope but many of them require 5-10 weeks commitment from families and to be honest, that is something that deterred me personally.  I know of many parents who have attended them and had great feedback but for me, with a short attention span and a chaotic life, I prefer “short and sweet”.

I am mum to three children, under 10, all with a variety of SEN/Disability, all statemented, all in different schools and I have my fingers in many pies (too many pies) so time is not something I want to give up, especially when it is a course for “me”.  If it was a course on managing behaviour in my child or sleep issues for children, I would gladly give up months of my time but giving up time to do a workshop that is just about me – well that is a concept that I struggle with and I know I am not alone.

GPS is not a condensed version of any of the courses, it is original.  Why duplicate what is already out there?

GPS runs from 10-2 (working lunch) for one day and is informal and friendly.  6 weeks later, the parents are invited back for a fun coffee morning to see how the strategies are working.

Interested?  We will be running this in Ashford in January so get in touch if you want to find out more.

 

Equality Act – Reasonable Adjustment

This is something we are always asked about.  What is a reasonable adjustment, when should someone make a reasonable adjustment, etc.

This is an extract from a Government paper called “Equality Act 2010: What do I need to know?  Disability Quick Start Guide“.  

 

What?  How?  When?  Where?  Why?

What? How? When? Where? Why?

What reasonable adjustments do you have to make for disabled people?
Service providers are required to make changes, where needed, to improve service for disabled customers or potential customers. There is a legal requirement to make reasonable changes to the way things are done (such as changing a policy), to
the built environment (such as making changes to the structure of a building to improve access) and to provide auxiliary aids and services (such as providing information in an accessible format, an induction loop for customers with hearing aids, special computer software or additional staff support when using a service).

Where a service is delivered from a building that cannot be made accessible through reasonable adjustments, it may be a reasonable adjustment to provide the service at a different venue, including a home visit.

Reasonable changes are required wherever disabled customers or potential customers would otherwise be at a substantial disadvantage compared with non-disabled people. A substantial disadvantage is more than a minor or trivial disadvantage. Service providers cannot charge disabled customers for reasonable adjustments.

What is reasonable will depend on all the circumstances, including the cost of an adjustment, the potential benefit it might bring to other customers (ramps and automatic doors benefit customers with small children or heavy luggage, for example), the resources an organisation has and how practical the changes are.

The Equality Act 2010 requires that service providers must think ahead and take steps to
address barriers that impede disabled people. In doing this, it is a good idea to consider the range of disabilities that your actual or potential service users might have. You should not wait until a disabled person experiences difficulties using a service, as this may make it too late to make the necessary adjustment.

Example
Sandra is arranging a conference for her charity to discuss new ways of fundraising. She looks at a number of venues to find one that has good physical adaptations with accessible toilets, an induction loop and places for people to eat their lunch at tables if they want to.   She contacts speakers and participants beforehand to ask if they have any disability-related requirements, such as a sign language interpreter or information in alternative formats.

Does this make sense?  What other questions do you have?