In this guest blog, written for the #JusticeforLB and #107days campaign, Marianne Selby-Boothroyd writes about her son with Down’s syndrome, and his siblings’ perception of him and what they think his future will be:
Day 88 was adopted by Marianne and her children, Jacob, Izzi and Alex. She was interested in supporting #JusticeforLB and #107days* because: there are clearly many reasons why what happened to Connor is so shocking and horrific and these have been and continue to be highlighted as part of the 107 days campaign.
One of the things that have affected me the most is the at times almost paralysing fear that this could be my family, this could be my son. I have three young dudes: Jacob, Izzi and Alex. That Jacob and Izzi could be in the same position as Connor’s brothers and sisters made me ask to contribute to the campaign and to adopt this day as the one for all the brothers and sisters out there.
For their day Marianne was keen that she would spend some time with Jacob and Izzi, discussing Alex’s future. Here’s what they did and why:
When Alex was born 5 years ago and I realised before we even left the delivery room that he had Down syndrome. To be absolutely honest, my first thoughts were not for Alex but for us, his family. I saw the faces of the parents, brothers and sisters of people with learning disabilities whom I had supported over 15 years. The emotions on their faces weren’t positive ones; weariness, anger, exhaustion, resignation and at times despair. Many of these emotions were deeply engrained due to years and years of fighting these invisible but all pervading ‘systems’.
For the past 5 years I have been in a space of denial: determined that our story would be different. What happened to Connor has therefore struck deep and stuck hard.
I now alternate between fight and flight in terms of what the future holds for Alex. A recent regular pub meet up with other mums in a similar situation found us ruminating on what will happen when our children grow up, what will happen to their brothers and sisters? The issue isn’t about burdening them with a sibling with a disability, it’s about burdening them with faceless and nameless systems to ensure their brother or sister has the life that makes sense to them. Burdening them with taking on a fight that they haven’t chosen or asked for. Our only answer was for us to become immortal. I know.
Jacob and Izzi’s beliefs and acceptance of their brother have grounded me and continue to be a lesson. Particularly for me, a professional in the learning disability world for longer than I have been a parent of someone who has a learning disability. Their perception of Alex as a brother first and someone with a disability last with heaps of things in between is a constant reminder to me to aim high. When I asked them to describe to me what Alex would be getting up to as an adult, they were quite clear:
• Alex will be a policeman or a driver of an ambulance, This is because he is caring and likes to look after other people
• Alex will go to university
• Alex will have a wife. If their house is bigger than mine, I will probably go and live with them (Izzi’s comment!)
It didn’t occur to them at first that Alex might need some support when he is grown up. When I asked them about this they immediately said that they were the best people to support him as they know and understand him best. If others need to help, then their list of requirements was as follows:
• You have to learn sign language
• Call us if you have a problem
• Don’t forget to record his favourite programmes
• Have a good personality – be lovely and caring
• Make sure you have a goal net – so he can have a good game of football
• There should be a mix of people – some like mum, some like us.
I am conscious in writing this down that I am not providing any answers or solutions to the fact that a beautiful young man at the start of his adult life has died needlessly and avoidably. When I asked to contribute it was with the thought of giving a shout out to all the brothers and sisters out there, to make sure that their voices are also heard and listened to. I think Jacob and Izzi have got the measure of their brother, they have set out what matters in just a few words and they didn’t use any forms, risk assessments or charts to do so. I know we will get sucked in to the system eventually, I do know that. But for as long as I can, I will stick with Jacob and Izzi’s version of getting it right and help them to shout it loud and clear!
This is my pledge to Connor.
* #JusticeforLB and #107days is a campaign set up in memory of Connor Sparrowhawk – also known as Laughing Boy, or LB – who had autism and epilepsy. On the 19 March 2013, he was admitted to Slade House Assessment and Treatment Unit run by Southern Health NHS Foundation Trust. After 107 days in the unit, he drowned in the bath, a death that was preventable, according to an independent report.
#107days seeks to inspire, collate and share positive actions being taken to support #JusticeforLB. The aim is to harness the energy, support and outrage that has emerged in response to LB’s death and ensure that lasting changes and improvements are made.
This blog was originally posted on the 107 days of action website. Click here to visit the site and read more about the campaign.