BUT Newsletter – May 2014
We’ve been busy here at Bringing Us Together.
We are delighted to announce that Pippa Murray (of IBK Inititatives) has agreed to join us as a non Executive Director. Pippa brings a real wealth of experience and knowledge to the Board so we are absolutely thrilled. We’ll let Pippa tell you a bit more about herself:
Before I was lucky enough to have my two children I had the bizarre idea that they would be ‘mine’, and that I was there to help them make their way through live. Ha ha! I learnt early on in my life as a parent that it was the other way round! I belong to them in ways they can never belong to me, and they have more to teach me than I can ever teach them. And now I have two beautiful granddaughters who I also belong to.
Both my daughter and son mean the world to me. They changed my life in ways I could never have imagined. Unfortunately my son died at the age of 15 as the result of his impairments. That was 15 years ago now, but I still feel his strong compassionate presence in my life.
It was the lessons my son taught me that motivate me to work with disabled children, young people and their families. I think it is so unfair that our beautiful children are not valued exactly as they are. They have so much to give, so much to teach. And I think it is so wrong that parents are treated with such disrespect and that our experience is so often disregarded. We have so much to teach with regards to how things should be.
I do lots of different things these days – run ibk initiatives; training; facilitation; consultancy etc. But the thing that links them all together is my passion for raising and promoting the voice of disabled children, young people and their parents.
We’re sure you will agree what an asset Pippa is going to be for us. Feel free to say hello to her and welcome her to Bringing Us Together.
Many of you loved having different forums for different questions but many more of you have said you found it difficult as you weren’t sure where to post – e.g. if you had a statementing query and also wanted support, you weren’t sure if you posted it in Law, Statement heaven or hell or Advocacy.
So, first of all, a huge apology from us. We wanted to keep it simple but ended up confusing the masses!
However, we have listened. We now have a new Forum called “Ask a Question“. If you have a question about anything, you can add it here. Hopefully, this will make it much much simpler. We will be promoting this forum via social media and mailing lists to help others see the questions on there so we can help ensure all questions get answered.
All the individual forums, such as statementing hell or heaven, advocacy, etc, have been moved in a Resource forum and we will keep adding resources there. If you have a resource you use regularly, then feel free to either add it to the forums or email us with details.
We have kept the Campaign Office as a separate forum. This is where we post news of any surveys, consultations or petitions we hear about. You can add any of your own surveys or petitions to the Campaign Office. We wanted to do this as so often people only hear about these after they have closed and the more of us speaking up and having a voice, the better.
We need some suggestions please – we have a Personal Development forum which is where we post news of any training, relaxation and stress tips, fun healthy eating tips, etc. However, we have had feedback that not everyone understands that is what it means. This forum is “Just for You”, it’s not about your children, your job or your family. It is for you. What should we call it? Any suggestions really appreciated.
New Weekly Chats
We had some feedback that a more relaxed chat room would be great, especially if it ran once or twice a week at a set time. So we have introduced Weekly Chats and added an old fashioned AOL type chat room. At the moment, this is very basic but if we can see it being used and the demand is there, we can look for additional funding to upgrade this to a more “all singing all dancing” version.
Our first chat is scheduled for Friday 23 May from 1-2 in preparation for the half term. So pop in and have a chat with other parents and maybe some practitioners to tell us about your plans for the half term. We know that some school holidays can be really difficult – dealing with changes to routine or trying to organise childcare (and let’s be honest you didn’t expect you’d have to find childcare for your 14 year old, did you?). We’d love to hear what sort of things work for you as sometimes, as parents, we are so exhausted that we find it difficult to even think of a new idea. This is a great chance to share your tips with other parents in a relaxed friendly and, hopefully, fun manner.
Junk the Jargon
We have launched our Junk the Jargon campaign.
How often are you referred to as “service user” or have to discuss “outcomes”? What about your children – do they want to “access the community”, or do they want to go bowling or to the park?. As for the acronyms, well, really does SLCN really explain anything? What about RAS – all the rage with the talks of Personal Budgets. There’s another – Personal Budget! One that we are not particularly fond of is “Parental Capacity” – seriously, how on earth is that phrase supposed to help grow a relationship. Yes, we know this has to be looked at in order to safeguard our children and young people but let’s junk that phrase please.
So let’s get together and start to Junk the Jargon. We are asking parents and practitioners to take a collection box into your meetings. Every time any one uses jargon, they have to make a small donation. So if anyone mentions an acronym, or uses the word “service”, “eligibility criteria”, outcomes, accessing or anything similar, a small donation goes in the tin.
The donations can be for anything – maybe you are part of a local support group, or have a great relationship with a national charity, maybe you are trying to fund a new swing or other piece of equipment? Whatever, just be clear about what the money is for and take it in there with pride.
The campaign is supposed to be fun but the aim is to make people realise how often they use jargon. Can you remember when you first ventured into this community – probably in shock, in denial and definitely in ignorance – can you remember all the meetings and phrases used? Can you remember feeling like you were a useless parent or as a practitioner, perhaps you felt like your Uni or College course hadn’t prepared you for this? Well let’s Junk the Jargon so everyone starts in the same place – together.
We’d also love to hear about the jargon you hear daily. We have set up a quick forum for you to add these so we can share – no need to name and shame, just the terminology is great. We have a plan for a fun project using these phrases, so please add them (or just email them to us)
Let us know how you get on, we would love to hear from you.