IF THIS WERE HAPPENING TO MAINSTREAM KIDS, THERE WOULD BE UPROAR

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Imagine a world where your child does not have their basic needs met at school. You turn up one day and the staff explain, very politely and regrettably, that they cannot do what your child needs today. Would you smile back? Say that’s okay? Leave your child anyway and head off to home / work as normal? This is what the parents of disabled kids are expected to do every day.

Imagine that your child is told to stop communicating. The books are all removed from the library. The next day, there are no pens. You are reassured that the pens will be provided but only once every 6 weeks. The school does not have budget for your child to be able to communicate or learn. Core equipment, an eye gaze which allows children to communicate through eye movements, or an iPad which provides a voice for so many – not funded because there is no money.

Just imagine your child after lunch being told to sit in a corner and not take part in the class. Observe, yes. Take part, no chance. You see, there is only funding for a part time 1-2-1. Even if your child happens to have medical challenges or a lack of safety awareness, well we will take our chances rather than overspend. After all, it’s okay in the morning and that will have to be good enough.

Now, your child’s feet have grown. Clarks is available to you (other shoe shops are available) but not for at least 6 weeks. You have to squeeze your child’s feet into shoes for at least 6 weeks and by the way, you need to attend 3 appointments, all at short notice, in the middle of the day and parking costs £6 a go. Oh and be grateful you don’t have to pay for the shoes.

Imagine that you start work at 8.30am and go to drop your child at breakfast club to be told that it does not exist. Not only that, but there is no childcare at all available around school hours. In the holidays you might be offered 1 day a week – school hours only of course.

Children with different abilities will have (usually after a long fight) either a statement of needs or what is now an Education, Health and Care Plan (EHCP). This outlines the needs of each child and forms a legal requirement for provision. Unfortunately, there are 2 major issues. Firstly, the true needs of a child are rarely properly documented leaving gaps. Secondly, even when the needs are documented, they are not always provided. Parents will fight for the correct provision and as a result are labelled as ‘difficult’ or ‘tiger parents’.

My daughter has an undiagnosed genetic condition – known as a Swan. (Syndromes Without a Name). I have therefore become one of the ‘difficult parents’ who is continuously fighting for the basic needs of my child to be provided. I don’t want to be difficult and neither do others, but we do want to be heard. Britain in 2016 needs to think differently and we need you to help us shout it out.

If you would like to help please feel free to RT to the following people:

@PennyMordauntMP (Minister for the Disabled)

@EHRCChair (Chair of Equalities and Human Rights Commission)

@Sajidjavid (Minister for Local Government and Communities)

@JustineGreening (Minister for Equalities)

 

Blogfest16 and the Swan Bloggers

Last Saturday, I attended the Mumsnet #Blogfest16 – my first experience of such an event and I loved it. A room full of inspirational, world changing and passionate (mostly) women – all of whom are bold and brave in sharing their life experiences online, for the greater good. In describing why I came away so bolstered and enthusiastic, I have given many examples from informative sessions, to truly hilarious stage shows, to a range of fab ideas for how I can be so much better as a blogger.

However, if I am completely honest, the main reason I had a great day, rather than a good day, was the amazing group of Swan bloggers who also attended.

swan-uk-image(Swan UK = Syndromes without a name)

I have come to think of the Swan bloggers as fabulous virtual friends – I have met some of them once or twice, others I met for the first time in person at Blogfest. Yet I am more honest with this group than many others in my life, and it feels immediately comfortable to be in their presence. I care passionately about what is happening in their lives, I shed tears of sadness and laughter on a regular basis reading their blogs, I truly appreciate their encouragement, honesty and support with my own writing. Being part of a group that is – bit by bit – changing the world for Undiagnosed children is incredibly empowering.

I loved the way that as a group, we were rooting for the amazing Liz with her ‘Are you Kiddingney’ blog to win the best campaigner award. An incredible talent, read more here…..https://areyoukiddingney.wordpress.com/.

I loved the way the group interacted with others – open minded and open hearted. I was proud to be part of a recognised group, with others commenting on how supportive and non judgemental this lovely gang is. I loved the fact that when unable to spot anyone I knew (I am known for my inability to recognise others in large crowds), a fellow Swan blogger spotted me and pointed me back to the herd. Most of all, I loved the fact that I laughed so much, despite tackling some tough topics, this group is so much fun to be with. And, as it turns out, a few of them share my penchant for too much wine….cheers ladies!

To find out more about Swan UK click here….https://www.undiagnosed.org.uk/

To read more Swan UK blogs click here….https://www.undiagnosed.org.uk/news-events/