For many months now I have been following a blog by Sara Siobhan called “mydaftlife”. It is a blog that painfully unfolds to tell the harrowing and outrageous facts about how Sara’s amazing and healthy son LB was allowed to die in an assessment unit for adults with learning disabilities.
As a mother to a young adult diagnosed as learning disabled I have had to fight the system all the way. Even about whether she had any disability. Some thought her just plain “naughty” or me a ridiculous and incompetent mother. Her eventual diagnosis came so late in her childhood that her SEN educational support was practically nil and support to me in parenting her mainly punitive.
To many of us our children are not disabled, they are just who they are. Often amazing, intelligent, challenging and independent characters that others find difficult to pigeon hole. My daughter does not consider herself disabled or a slow learner, she is mortified and confused by the label. She believes its mainly the rest of us that are peculiar.
During her transition into adulthood, she like many teenagers, found life very challenging and as a result her behaviour expressed this. Suddenly my worth as a parent and her worth as a family member diminished. She was suddenly treated as an adult now responsible for her actions and I was no longer validated despite my extensive knowledge of her needs, individual likes and dislikes.
We are a large, close and happy family and are generally very creative in our problem solving on each others behalf. Because my daughters behaviour was becoming more aggressive and risky in public it was twice suggested to me, and to her in my absence, that she should go into an institutional setting.
The last suggestion discussed with her was an assessment centre for learning disabled adults. I voiced my horror and concern at the thought as television programmes, such as the one about Winterbourne View and all it portrayed, were quite fresh in my mind. I was reassured that things were different now. High standards of care etc etc. As it happens at the very last minute a family member stepped in financially to help me get some respite and a meaningful needs assessment from Family Futures. This private support bought me fighting time and my daughter is now living independently with the help of Direct Payments.
LB and his family represent the ones who have not been afforded this basic and very reasonable outcome. It is an outrage beyond measure that this tragedy happened to Sara and her family but as if this weren’t enough she has been subjected to torturous, disrespectful and cruel treatment by the health authority as a consequence.
We just wanted support to keep safe at home. We didn’t get it and we all paid the price in one way or another. My daughter came to serious harm but she didn’t die.
Many of us adopters will find we have children with at least “additional needs” even if we didn’t know at the beginning these needs will become apparent as time passes and our children don’t fit into the rigid systems provided to them.
Learning disabled children and adults deserve better support. Please share Sara’s story linked below with anyone you feel may be able to highlight the campaign for a cultural change.