Most of us did not chose to live in this community, we were dropped into it. Dropped in from a great height, very quickly, with no warning and no safety net or soft landing
We eventually start to find our feet, although most of us probably fell back down on a number of occasions and, as my son would say, many of us have probably said more than a few naughty words during this time.
Some of us would be given the “Welcome to Holland” poem or be told “God only gives special children to special people” by those who meant well or those who didn’t know what else to say. Some of us would appreciate it, some of us would quite happily have shot the messenger.
We would learn the jargon we thought we needed, only to go into another meeting and hear yet more new acronyms.
We would have total strangers in our homes, advising us how best to have our child eat, sit, walk, talk and we would feel, on more than one occasion, that we were just useless and our poor child was so unlucky to have drawn you as their parent.
We would learn to navigate a system, that is, at best, difficult or at worst, not fit for purpose.
We would complete pages of forms explaining at length the things our child couldn’t do, how they were lacking in their own ability.
We would also sit in meetings with practitioners discussing our child’s development, or lack thereof, often with the very child having to sit in the same room.
All of this just seems par for the course and we accept it. However, the one thing that continues to amaze me is the fact that so much of our strife and stress comes not from practitioners and poor systems, but from other fellow-parents or from those who are supposedly there to support us – those who should know better – not working together or judging us.
Recently, there was an amazing social media campaign: 107 days – Justice for LB. The one thing I loved most about this campaign was the absolute solidarity it created. Everyone stood with LB’s family and supported them. Everyone was working together towards the same goal. I felt proud to be part of that amazing Community. We all left egos at the door, politics and personalities didn’t matter; everyone just wanted to get on board and work together.
Then the campaign finished, making some great achievements in the process, but with it went that feeling of togetherness and a true team. We have quickly reverted back to making it about ourselves and how these thing affect us rather than thinking “wow, we managed to achieve some great things together, what next?”
Sadly, we appear to be heading back to “every man for himself” and not “we’re in this together”. As a mum of three children with SEN/Disabilities, I know the challenges that we face and how difficult it can be to think of the bigger picture when we are fighting for our child but I know that if I want things to improve for my children, it has to improve for all children, or we will continue to have a system that works only for those who shout the loudest. I am absolutely exhausted from all the legislation I have had to read and comprehend, I am emotionally drained from all the appeals and battles we have had and I am frustrated beyond belief when I have to spend time being “advocate/secretary” when I want to spend that time being “mum”.
My children will be young people one day and I know from the Justice for LB campaign and Mark Neary’s Love, Belief and Balls blog the difficulties that may lay ahead. As difficult as it to read some of their experiences and as much as I would love to believe it could never happen to us, I know that sadly if we don’t stand together now to make it better, then it really could happen to us, and it could happen to you. I am grateful that they have taken the time to share their stories because they are stories we need to hear. There are many stories out there and we need to do something together to stop these stories being repeated in the future.
Bringing Us Together has launched a concept of “Mastermind groups“. People with similar interests, working together towards the same goals.
However, I am not arrogant enough to think that everyone would want to work with us at Bringing Us Together, nor do I think it should be the only option. In the same way that our children and young people do not fit in just one box, neither do we.
- Some of us like Facebook to stay involved, some of us hate Facebook;
- some of us use Twitter, some of us just don’t get it;
- some of us love on-line forums, some of us find them quite “cliquey”
- some of us are involved with local support groups, some of us would rather not;
- some of us are involved in parent carer forums, some of us dislike even the idea of them;
- some of us read blogs and respond to questions and surveys on there, some of us find that eats away at our data package.
We are all different and we all have something to offer. We can all get involved in making a difference but we have to work together for this to be effective. Being told that the only way you can make a difference is by taking one route takes away our choice so we don’t engage. We need creativity and new ideas/suggestions and more importantly, we need to learn that we don’t all have to be in charge to make a difference, we can achieve more as part of a great team.
When we work independently, we are duplicating the work, coming up with the same results and getting exhausted. Then guess what? Nothing changes. No one wins.
The Justice for LB campaign showed us it is possible to do it. So, think about how you could make a difference. Then think about what you would like to change. Then find a team that works for you and share their progress with others.