This summer has been extremely busy for me. I have been working and selling and packing up my bits to move to a smaller – and more importantly cheaper place to live. 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, as far as I can see: Foxes Academy.
I drove round hundreds of miles to check out different colleges, but nothing stood out like Foxes and when we visited I got that feeling right in my gut that lets me know: this is it! This is the place! (Or the person or the thing to do) When it comes to my gut feelings about Ben it has always worked out. I have fought many a professional, found my voice on behalf of him many, many times and followed my gut, listened to my heart, had faith and quietened the fears created by professional opinion and “realism.”
I have spoken up on his behalf much better than I have for myself. I have discovered a strong assertiveness and determination with regards to helping him create a meaningful and happy life more than I have for myself. On reflection, this is an error, as in God’s eyes I am no less important than Ben; in God’s eye’s I am equally loved and equally have the right to a happy and meaningful life. Intellectually I get that; emotionally I have yet to. But that will come – when the error is released.
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. He has had to grow and learn and experience in a body and brain messed up by an extra chromosome – well that is the physical cause. The emotional and soul based cause is multi-generational, including myself and his father: error based emotions eventually impacting the physical world so much as to “disable” a potential healthy human body, which in turn impacts the soul. Of course we have the potential to help our children to heal by correcting the emotional error and false beliefs in ourselves.
However, I did want to talk too much about Ben’s dis-ability, but rather his capability. I am not trying to brush over the struggles and pains of having a disability or of being a parent, but this summer, I have just felt the beauty in Ben, the silver lining, the way God uses every situation to Love – and I wanted to share it. I may have been Ben’s voice many times; I may have drudged my way through a ton of paperwork, phone calls and meetings to get basic rights for him whilst ignoring the doctor’s so-called predictions of what he wouldn’t be able to do, but in the end it has been Ben who has done it.
The truth is Ben has proven them 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, 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. This is what I want to demonstrate today.
For my son it is not an easy at times: he is frustrated he cannot speak clearly and be understood easily. 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. For instant, he cannot just hop on a plane to Japan if he wishes; he cannot go to the bank and sort out a mortgage.
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. We have encountered people who ask what a person like Ben can contribute to society. Are they just not a drain on the economy? (This included a cardiologist we once met in a famous London hospital!).
There are two reasons this is both arrogant and ignorant. 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. I let go a bit with him. I happily would sing out loud on my way down and around the shops with him in his buggy. We would make up songs and rhymes to teach him colours, numbers, shapes, animals. I sang “Chitty, chitty, bang, bang” for hours and hours.
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. It was traumatic that first year before the holes in his heart were repaired. But I always loved him from the womb all the way through. 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 was a single parent, for most of the first ten years. It was tough at times: I didn’t know what I was doing. I didn’t know how to love myself, so loving someone else wasn’t always possible.
I would struggle, but then the 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 incredibly fit following his surgery; he never got fat and he never had mucus and the hearing loss they predicted.
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.
At college he was challenged to go beyond any previous pre-conceptions of what an adult with a learning disability can do. For years, post 16/18 education has been much the same old thing: life skills, gardening, craft and animal care, possibly a bit of catering. There was no particular goal except to teach some life skills and give them something to do for 3-5 years. Foxes have a different view: they are getting them ready to have a life – to live as independently as possible, to find meaningful work and interests and relationships, including love and sex relationships. Foxes are all about outcomes.
Since he left for college 3 years ago, I went on quite a journey within myself: a grieving and a lot of facing some harsh truths about my parenting. I tried to be the parent I didn’t receive myself, but not having a clue I have made many mistakes. When he left for college I spent a day sorting through the 5 boxes of paperwork from his years in education and the health system. It took over 3 hours to burn it and I cried over most of the papers I read through. I told myself I was letting go, but it took a bit longer than that and in truth, is ongoing.
The first two terms Ben did well, settled in, enjoyed his work and social life, but he also had some problems with a girlfriend who was controlling and bossy and was easily influenced by others. He came home for the holidays and we had some sticky moments. It took a while for the penny to drop, but I started to see that I was micro-managing too much – in fact trying to control his choices, as well as project demands at him. At times he was aggressive with me and/or himself. I was doing too much for him and expecting him to fulfil emotional “holes” I needed to fill myself. I started to see I was harming him and what I was calling love wasn’t.
Over the next few months I focused on “un-hooking”, watching out for my addictions with him and try to own the feelings and fears. It wasn’t all perfect, but goodness a change happened in him. At college, the penny dropped that he was there for himself, for his own aspirations and dreams. He started to do much better and cope much better with the challenges that came. 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.
I still have to watch myself, to step back. I encourage Ben to tell me when I am being to bossy or interfering, when he wants me to not be around or not to help. We are really working on a more honest relationship and he is speaking up more clearly and assertively. 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.
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.
Because of all this, Ben is closer to God than I at the moment. These qualities he demonstrates are qualities and attributes of God. There is the gift: God appears in many ways, through many people and the way they live their lives. 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. This is unloving as having a disability is not easy and I have seen grief and confusion in Ben at being “different,” but until we learn we have a choice in all these things, until we turn to God more and our own spirituality and soul, we can be good guardians to these brothers and sisters, whose worth is equal to our own. 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, Ben is a man and in many ways he is Peter Pan – never growing up. 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.”
(Matthew 19:14)
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”
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