U and V: A to Z of Family Rights and Family Lives

We are almost at the end of our A to Z.   We ask in our Facebook group for families to let us know what each letter stands for and sadly, we see families with children of various ages and disabilities all experiencing similar problems.

This is why we launched Justice Together – a one stop place for families to find help and advice when they are in crisis.  So often, we don’t know of the people and services out there who can offer help so we are trying to Bring Us Together with Justice Together – this goes live very soon.  We also use our Facebook group so families can ask questions and get answers from other families and practitioners.

So what do U and V stand for?

U is for Unconditional love for our children. We love them to the ends of the universe and back. We love them warts and all. We may be driven to the point of no return and our stress levels are so high that we could explode – and sometimes do!   We love them so much that we will fight the good fight to get what they need to live and have a purposeful life. Even for those of us who have lost children we continue to love them forever

U is for the Unheard – especially those young people and adults who don’t have a voice, or are simply ignored and not listened to. This may be because the young person is not valued enough to be heard, or their communication needs are not being met, or people who support them struggle to find ways to tune in and understand, don’t have the skills or don’t take the time to really listen.

U is for Unseen. Hidden away in care homes, institutionalised across the world, isolated in communities, basic rights denied in their own homes. Disabled people forgotten and remain the uncared for and the untouchables. Easy to abuse and who cares anyway?

U is for Unbearable – pain, loss, grief, anger, resentment, sorrow, trauma, frustration, fear, and deep sadness. The most unbearable part being out of control and not being able to get justice, the time it takes and having to stay strong to go through the court processes. We can’t imagine the emotions felt by parents who have lost their children and young people to a system that often fails families but we think of you all often, we care that you get justice and we send you our love and support from across the country.

U is for United and Unity – your campaigns unite us, your blogs, facebook pages, your messages to the world reach out and touch so many of us. There is are incredibly strong feelings of solidarity, that this can’t go on any longer, and that something must happen to ensure that these preventable deaths stop happening. We are there in spirit and you are in our hearts.

U is for Up Yours to the Guilty – we are all thinking the same. We know who the guilty are. We want to see them pay for their mistakes and their abuse, and their lack of care for what could be our own children.

U is for Unit – Assessment and Treatment Units – having our kids supported well and close to home we know is the only way forward. We have heard too many heart breaking stories of young people assessed far away from home, by people who don’t know them, in situations they are unfamiliar with, with little or no voice at all, and no parental say.

V is for Valued. It does not seem a lot to ask for. For a human being to be valued by those who care for them, and by society. So, why is it such a barrier? Why are our disabled young people and disabled adults devalued and dehumanised? We see their true worth, our kids brighten up our days, their strength and resilience, their humour and their kindness, their love for life, the things they say and do that make us laugh, how they think about themselves and the world makes us smile. We have so much to learn and so much to be taught to make us better parents.

V is for Victory – we should not have to fight to get what we need for our kids, or to get justice if they have been abused or worse, died due to negligence. We should not have to go to the lengths that many parents are doing right now when they are legally challenging the services and professionals who are supposed to be there to help not to hinder.

V is for Vino – glass of red or a glass of white, or even a rose please. I am not honestly bothered and will drink any colour you put in front of me. As long as the red is warm and the rose and white are cold. Well-deserved at the end of the day, umm or around 6pm for happy hour me thinks!

V is for Velcro – The original patented hook and loop fastener was invented in 1948 by the Swiss electrical engineer George de Mestral, A gentleman with a great idea. Use it to hold your trousers up, for the screen to stay on the communication aid, to keep the bag closed with all the tools in, for the zip that’s broken, for the hem that keeps falling down and you can’t be bothered to sew it.  It’s also a great sensory toy, makes a great noise when ripped apart and a great way to help with motor skills, and shoes with velcro are soooooooo much easier than laces for some of our children and young people.

Justice Together by Bringing Us Together

The site will be launching very shortly.   We really are so happy with the response.  People can sign up to appear on the site (at no cost) if they can offer support or a service to a family.   Each of us involved in Justice Together (and Bringing Us Together) is a family member, we’ve all experienced issues personally and had to look for help or support.  We live this A to Z chaos with you.

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.