O: A to Z of Family Rights and Family Lives

Over the last few months, we have been producing an A to Z of Family Rights and Family Lives.  A lot of the ideas for the content have come from members of our Facebook group.  We grab a glass of wine and ask for suggestions.  The evening is always fun, but also so very sad that everyone seems to relate to the same problems.  Even sadder is that the parents in the group range from young children to adults so the issues are not new problems and they don’t seem to improve as we move through the system.

So what does O stand for?

O is for:

Offer – the Local Offer.  This should be the place where you go to find all the information you are ever going to need in one place.   It should have everything that is happening locally for your child as well as in neighbouring authorities.  It should tell you about eligibility criteria, what schools have to offer, services from health, education and social care.  It should tell about getting out and about and what clubs, organisations, charities there are around.  It should do all that and be all singing and all dancing.  We hope that it does what it says it is going to do.  We know it is going to take time and will also rely on family feedback.  Have you seen your Local Offer?  If not, find it here and let us know what you think of it so far.   In the meantime, our own biggest source of information is one another.  Sharing our own personal experiences, getting to know one another, following behind the ones who have been there before us and learning from them – that is more than any Local Offer can ever promise parents.

Okay – it’s okay to scream and shout, it’s ok to feel shit, it’s ok to swear, it’s ok to want to send that snotty email or letter, it’s ok to be you.  But only once in a while!  Not all the time!

One Page Profiles   – we been looking at how to do a One Page Profile over the last couple of months.  Thinking in this way will help with the enormous task of doing an Education, Health and Care Plan.  It can change how your child feels about themselves and impacts how others see them.  Find out more by checking out our One Page Profile posts

Opinions – whose do you value the most?  The health, social care or educational professionals?  Service land people? Or is it your partner, best friend, other parents on facebook?  How much of what other people think helps you formulate your own ideas.   Sometimes we forget the most important person to discuss things with especially if they are non-speaking.  That is our kids.  Their opinion should be central to all our thoughts and planning.  Listen with our eyes, and our ears with an open mind and that will help us make our own opinion.

Opportunities – this is sometimes “jargonised” by professionals.  Accessing Opportunities.  Or is it having a good time, going out and about, trying new things, having fun, taking risks and doing what other kids just do?

Ordinary – this is also sometimes “jargonised” by professionals.  Our lives can never be described as ordinary.  Juggling life, kids, work (if we can), appointments, assessments, Personal Assistants (if we have them), school life, social life (if we have one), friendships, relationships (if we have one), shopping, cooking, cleaning, doing the meds, up in the night, cleaning up poo or sick, taking dogs out, trips to A and E, changing nappies for a child over 4yrs, changing feeding tubes, camping out by a hospital bed.  But our lives can never be described as dull!

Outcomes – another “jargonised” “professional” word.  Do our non disabled children and young people have to Achieve Outcomes?  I don’t think I have ever been asked by a teacher, doctor or anyone involved with my 5 non disabled children about what their outcomes are.  Words are there to confuse us and make things far too complicated.  It is a way of disempowering us.  So junk the jargon.  If we own the words and change them to ones that fit our lives then things would be much more simple.   My hopes for what I want in the future for all my kids is for them  each to be happy, healthy, safe and have purposeful lives.

Overcoming – our young people face enormous barriers whether they are to do with other people’s attitudes, lack of disabled access and environmental barriers, or organisational barriers around the systems and services.  Our young people face discrimination and prejudice, illness and life limiting conditions,  being assessed and assessed.  How do they manage to keep smiling, to keep laughing, to stay strong and resilient, to keep their hopes up and to keep loving people.  Our disabled kids and young people are our teachers in patience, love, and kindness.

Overwhelming – Does your head feel like a prickly hedgehog with spikes coming out, really tight and you can’t think straight?  Have you got so much to do that you can’t make a start on any of the tasks, even the simple ones?  Is that DLA form still sitting there and the deadline is looming?  The Children and Families Act and EHC plans feels like the last thing on your mind.  Yeh, you know the feeling. It is overwhelming.  Take a few hours out for you.  Phone a friend for coffee. Get some fresh air and go on a walk.  Phew.   Take a deep breath.  And then carry on.

We will be looking at the letter P next week and can already imagine the suggestions for that.  If you are not already a member, join our Facebook group and join in the chat.  Alternatively, if you are not a Facebook fan, drop us a line via our site and let us know what you think.

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Debs is one of the co-founders and Directors of Bringing Us Together. She is mum to three child with a variety of SEND and has a great husband.

BuT Site Admin

Debs is one of the co-founders and Directors of Bringing Us Together. She is mum to three child with a variety of SEND and has a great husband.

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