Divided we fall…
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 a