This summer has been extremely busy for me. I have been working and selling and packing up my bits to move home. But mostly, I have had the task of helping my son set up his new life following his graduation from college where he achieved an NVQ in Hospitality as well as a number of other qualifications and certificates. He has worked hard for three years at the most progressive college in the UK for people with learning disabilities, as far as I can see: Foxes Academy, has had dozens of new experiences and a ton of fun.
When Ben was born and it was apparent he had Down’s syndrome it was a huge shock and an emotional rollercoaster. I loved him, but it was unknown territory and the road unclear. It was difficult dealing with our own emotions, but telling others was the hardest bit: the silence, the judgements, the projected fear. We hardly received any congratulations cards: even the community midwife didn’t know what to say and hardly visited. I felt very alone, but also not wanting to deal with other peoples’ emotions. The first year was tough, Ben was sick and had heart surgery just before his first birthday.
We had to deal with the pessismism, outdated predictions and condescension of many professionals, lots of appointments and it continued and still continues. We have also had some wonderful people inbetween, but there is a still a lot of discrimination and even doctors who would rather see Ben and his like dead because “they are a drain on society” (That is real quote from a cardiologist).
In the meantime, Ben has not had the ability to speak up as he would have needed to or access to the right information or understanding to fight for his own needs because Ben has Down’s syndrome. I have had to fight for him. He has had to grow and learn and experience in a body and brain messed up by an extra chromosome.(that is the physical effect of emotional causes in the parents) It’s not easy being him at times – he is aware he is different, he notices the stares, he wants to be taller and freer and he would certainly love to be able to speak more clearly – to be understood and be able to pronounce words correctly and remember enough to say a sentence without missing words out.
The first time I met Jesus, only two weeks after coming across the Secrets of the Universe talks, I asked him what the cause of Down’s syndrome was. His answer is 1hr 52mins in this video. I have yet to process those emotions that he talks about. It was emotional hearing it, but is also amazing to know we have more power to help our children than we realise.
My road has a parent has been complicated and messy. I tried to hard to do it differently than my own parents, and sometimes I got it right and fought many battles on behalf of Ben, but without realising it I acted out in my unhealed emotions and as a single parent, for most of the first 10 years of his life, it was tough and I have made a lot of mistakes and damaged him further.
What I find amazing is that in God’s design, in all the messiness us humans create, there are gifts to be found; wonders to discover and learnings always.
Ben has proven the professionals wrong many times: crashing through their thinly disguised pessimism. The truth is Ben has a soul based knowing at times uninhibited by fears of looking silly or sounding ridiculous. The truth is he like many people with learning disabilities who smash through our complicated thinking with a simple, heart-felt answer to the big questions about life and love. The truth is I may have helped Ben at times, but he has helped me and others in deeper, more meaningful ways ten-fold over.
What I find amazing is that even though it is human error and arrogance that has caused these problems, a gift has been created for us and in this gift is another demonstration of Love – the love of God: pure, simple and powerful.
His life can be challenging. It takes a long time to learn even simple, every day things and there are many things he will never be able to learn in his current condition. He has limits on his intelligence that mean he cannot just go out in the world independently – he has to rely on the help of others. His dreams are restricted compared to others of the same age.
In our materialistic, economy-based Western world he is unlikely to be seen as a success because he is unable to earn lots of money to plough back into the money market, or become a celebrity, or get a degree in Astro-physics and design a rocket to Mars. What does he bring to life?
Firstly, Ben did not choose this. He did not choose to be born in this body; he did not choose to have a learning disability or a heart defect or poor eyesight or poor speech. It is not his fault. Ben has to try to survive against the odds in many ways and has no choice, but to need help. He is part of the most vulnerable in society – not by choice, not by harming himself or others, but just by being born as he is.
Secondly, not realising what Ben and people like contribute is to really lose touch with what being human is or created to be. To value only the material, the physical, the monetary is empty: a house built on sand. Ben demonstrates every day his humanity, his love, his openness, his free spirit. He is as capable of being inhibited by external forces; including me of course as any person is, but mostly, I have tried to allow him to just be him: loving, cheeky, fun, kind and brave.
Ben demonstrates to me how to let love flow through you, he reminded me how to be silly again. He taught me spontaneity, living in the moment, how to be free in that moment.
He gave me a chance to love freely. My heart skipped a beat to watch him sleep, to wonder at this miracle of life that lay before me. When he was born, it was traumatic – discovering he had Down’s syndrome. My heart ached, not knowing what he or we were going to go through, but I knew he was innocent and he needed care.
I would struggle – I could barely love myself and so didn’t know how to love him at times. But magic would happen. A trip to the supermarket became a dance down the aisles or me running about picking up clothes he was trying to remove. Nothing was “normal” and yet it felt more alive than normal. He walked three years earlier than they predicted: he was out of nappies three years earlier than they predicted. He loved to dance and sing. We had our own secret sign for music. He walked further than they said he would.
He was and is a near- fearless climber, loves to free-run, break dance and can drum for hours. He learns the drums by listening to music over and over, repeating it many times until he knows it. He can recognise a song from the first two notes. He is a romantic and loves feeling “in love.” He wants to marry one day. He is a stronger and braver swimmer than I and a good athlete. He is incredibly perceptive about people and his reaction to someone says a lot.
Music, sports and food are his loves. When he eats he does not talk and will not talk with you. Instead, he sits and tastes passionately every mouthful. If he goes out for the day, the first thing he will tell you is what he had to eat.
In the last two years, I realised that I micro-managed him too much because of my fears about his ‘vulnerablity’ and it was controlling and unpleasant for him. So step by step I learn to step back, trust him to toher’s support and help, trust him to grow. We chatted about it and he tells me if I am ‘bossy.’
Last year he was second outstanding learner and he has come out more mature, more confident and capable. He is bold and decisive and chose a new life, living with a friend, away from me, with support workers to help him. He was fully involved in interviewing and choosing his support workers and we are currently settling him into his new life.
His courage is incredible and I am honoured to see this young man grow. He has such character, such a sense of fun and incredible love in him. He also shows a perception about life and talks about wanting to teach others how to have an open heart.
I feel stiff next to him. I can feel the walls around my heart built up from my injuries – from my childhood and what has happened since. Yet I have this son – well God’s son, this soul in my guardianship demonstrating to me that opening is the way forward. He is lighter and freer than I and I long to feel that. He is closer to God.
As parents of children with disabilities, the trauma of discovering your child is not quite what you thought, what you may have been through with them – through illness, or schools or other care needs creates a strong protectiveness. We can feel them so vulnerable that our fears and unshed tears drive our actions, which we may think of as love, but isn’t always, especially as emerging adults. We can feel an internal pressure to make them feel okay, to feel better because we don’t want to feel vulnerable about them ourselves – somewhere inside we may know unconsciously we have some responsibility for what has happened. Whatever our feelings, and for their sakes, we need to own our emotions – our fears, our grief, our anger, feeling overwhelmed, exhausted – we need to be brave and honest and unselfish. Like any adult, they need room to breathe, to explore and to experiment. They need room to make mistakes and learn how to cope with that and to learn to live in a world they probably don’t really get, but one they can benefit from given the right help balanced with the right freedom to choose and live.
We must not patronise them, they are great teachers:
Ben’s bravery shows me I need to be braver.
Ben’s openness shows me the freedom in breaking down those walls around my heart.
Ben’s spontaneity and joy is there for my inner child to awaken again.
Ben’s pleasure in simple, everyday things demonstrates an unspoken gratitude and acceptance.
Ben is happy in his own skin, happy to say he is handsome, he is a dude, and he is a good dancer. He is not obsessed in judging his body as I have mine. He is just “this is me and this is okay.”
For Ben, life is now, in this moment – whether it is eating something delicious, doing a cartwheel, drumming to Muse, or singing along to Lazy Town. He is not wasting energy mentally fretting over yesterday or tomorrow. The only real time for him is now and therefore he gains more from the moment than I do.
Ben has compassion. He is not happy to see a man sleeping in a doorway, or a child screaming or a dog yelping. He “feels it in his heart” that something is not okay and he wants to change it – with Love and kindness.
Even in what can seem a tragedy to many, God finds ways to express and demonstrate Love, to help us see where we can improve, where we can be more honest and reflective, to create change.
I don’t believe we have to have a world with people with Down’s syndrome or other disabilities to demonstrate all these qualities or to bring out these qualities in ourselves. But we can be good guardians to these brothers and sisters, whose worth is equal to our own and who for now are disabled by the emotional injuries of the generations who came before them. They often help us open our heart, have more compassion and understanding.
They can give us a taste of our Father, a doorway to heaven, by their own demonstration of love, fun and kindness, but also by what they bring out in us: patience, tolerance, humour, love, compassion and kindness.
In many ways he is Peter Pan – caught between adulthood and childhood. But I sense none of us really understand what being grown up is. We live in a world of injured souls, whose need to control their environment and “manage” life is seen as being an adult. So in this way, Ben helps me question my own “adulthood”, my addiction to control, to avoid fear, what true responsibility is.
Maybe the Peter Pan’s of this world remind us of what Jesus said, “Let the children come to me. Don’t stop them! For the Kingdom of Heaven belongs to those who are like these children.”
So thank you Ben, and all the “Ben’s” out there. In adversity, you shine, with no self-pity. In a controlled world obsessed with what others think, you dance and sing, no matter what; you are freer. In a world full of competitiveness and hierarchy you only see equality; no man lesser than yourself. And most importantly, in a harsh world – you love.
love Maxine “mum”