Day 88: A sibling manifesto #107days

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 Connors 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.

Day 75: Pockets of peace #107days

Today was adopted by Louise, a friend and colleague of Sara’s. This is why she wanted to support #107days and #JusticeforLB and what she is doing:

I adopted today to take Sara out to do something nice – nothing about the campaign, nothing about work (we are colleagues) – but just a bit of a treat.

Any of you who read Sara’s blog will know what a toll this has taken on her, and how in the midst of coping with personal grief she has been thrust into a role as a highly effective but reluctant campaigner. She deserves a break.

Sara and I used to chat a lot about parenthood and our kids as they moved towards adulthood. Sara’s daughter and my older son did their A levels at the same time, so we compared notes over exams, university choices, student loans – and about how on earth we’d feel when they left home. How could our babies possibly be old enough all of a sudden to make all their own choices and be responsible for running their lives? What changed so dramatically overnight on their 18^th birthday to make us redundant? I remember talking about the way the term ‘helicopter parent’ is used to ridicule parents who can’t let go, and agreeing that maybe it was all a bit more complicated than that.

Of course we cried when our firstborns left – and of course over time we discovered it wasn’t quite such a separation as we feared. They ring up for advice, they come home for holidays and leave their laundry lying around, they ask for money; we ask them about their new lives (and sometimes they tell us), we remind them about stuff, we still ask them to do the washing up. It’s not a sharp divide between dependence and independence at 18, but a gradual handing over of freedom and responsibility over many years, all the while providing the safe backstop of parental love, interest and concern.

And then we got to talking about the next two kids approaching the cliff-edge of 18 – LB and my younger son. The same age, but with such different prospects. While my son followed his big brother to university, Sara has blogged about the lack of an ‘imagined future’ for LB. Long before he was admitted to The Unit, she was anxious about the absence of meaningful opportunities for him when he left school, but determined she would find something. Then came The Unit, and the stripping away of all aspiration, meaningful activity, and responsibility to do something productive. Replaced with vacuous ‘choices’ to do nothing and a cruel version of ‘autonomy’ in which Sara – who had loved and looked after him with inadequate support for 18 years – was cut out of decision-making. Worse, she was labelled as a pathological ‘helicopter parent’, part of the problem preventing LB from being an independent adult.

Of course we have to preserve individual rights for people with disabilities, of course we do. And the relationship between young people and their parents is often complex and sometimes damaging. But here’s the irony. While my sons and LB’s big sister were feeling their way gradually towards adulthood with family support along safe, well-trodden roads, LB – the one with less mental capacity and adult competence – was bundled sharply into it with no map and no guide. It feels, to paraphrase Thatcher, as if care services believe ‘there’s no such thing as family’. To exclude all parents as a matter of routine is surely wasteful of all the care and understanding they can bring, as well as tough for us parents.

So today is a day to think about Sara and all the rest of the family, and reflect on their needs and what this has done to them. We can’t make it right again, but we can try to create little pockets of peace and relaxation to lessen the pain for a short while.