Winter 1997
By Norman Brown, Parent and Sense Specialist Adviser (Congenital Deafblindness)
My own deafblind child was a boy called Stephen. I am writing this as if I am thinking about him and as if it is that time of transition from a school to an adult placement. However I also am using hindsight and the experience of other parents - I did not think so clearly when it was really happening.
What is an adult?
An adult is mature, fully developed. I can see aspects of that maturity in my child, or at least I recognise why other people see my child as an adult.
Being an adult means being responsible for yourself. Here I have real problems. It is not that my son does not want to decide some things for himself, but that he cannot always imagine or handle the consequences. There are also many circumstances when he is genuinely puzzled or confused and could not reach a relevant decision. Regardless of mental capacity, his experience has not given him enough to evaluate what is involved or the language to find out more. He is very powerless and vulnerable.
Yet I cannot say that he remains a child. In many ways he is mature and fully developed. He is now subject to drives and emotions that a child has yet to experience. He also has greater strength and weight than a child. So treating him as a child is not always even possible.
I probably think of him most of the time as a child in an adult’s body and I fear that, on his own, he is a possible danger to himself and others - like a child in the driving seat of a car with the engine running. I would feel safer if I was driving, yet I do not want him to spend his life a passenger.
The struggle for independence
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I have struggled to find help to move him further towards independence and I have been amazed at the progress that can be made. I have learned much about him, the heights of courage and forgiveness that have enabled him to cope with us all, as well as the depths of frustration and distress when he was lost and misunderstood in a world we have created.
I have learned much about myself. We have meant a lot to one another and we have greatly influenced one another’s lives and personal development.
He has learned to trust and to like others and he has certainly attracted much love from many people along the way. He no longer finds his sole source of comfort and reassurance in me. He no longer needs me around to be happy and engaged. So although he still has relatively few skills to feed, clothe and occupy himself, he has, in fact, the basis of real independence - emotional independence and the capacity to form new relationships.
But one of his greatest difficulties is with relationships at every level. He has trouble relating things to things, things to people, people to people and all of them to himself. When you cannot see or hear things clearly how do you get a whole and unified picture? You need that broader perspective if you are to be an adult.
Being an adult means handling our own personal relationships and being responsible for your part in them. Being an adult is very hard if you have difficulty with relating.
My struggle
I need to see him not as a dependent child in an adult’s body but as a dependent adult who is unable to be fully responsible for himself. My struggle is not in moving from over protective parent to parent of an independent adult, but in allowing his main dependence to be transferred to others.
His new placement may be right for him, but I am not there to judge for myself and he cannot phone or write to me unaided. You see, basically, if he is happy then I am happy. If he is distressed then I am distraught. But how am I to know? All I have to go on is other people’s interpretations - how I miss direct communication.
Perhaps what I also miss is his rebellious assertion of his own changed dependence, like the discussions, arguments and reassurances I had with his sister. Perhaps I miss him telling me to go away and get on with my life and stop worrying about him. The evidence of my child’s readiness, even need, to break away from me comes after and not before the break.
Only he is the truly believable witness. I need the pain of seeing him forming happy relationships with others, enjoying new experiences in a wider and more exciting world that I was able to provide. I need to see and feel that and realise that it is good.
Starting to change
Evidence comes in the strangest ways. When Stephen went to his adult placement, all his state benefits went with him, along with most of his clothes and other personal possessions. His young carers took him out shopping armed with his benefits and updated his wardrobe. When he next came home I was stunned. He looked smart, fashionable, more truly a young man than he had ever been before. It was not that I had dressed him badly, it was that he was a generation more modern than I was, and so were his carers. I had got it half right; they had got it exactly right. This was on top of the evidence of skill acquisition and a general sense of well-being. It had a great impact on me and was a small revelation that his best placement was not with me and that he was becoming more acceptable and more able in society than when he was with me.
He never forgot his father nor his father’s home but now, he had two places to be happy and his world was continuing to grow. One of his places was becoming increasingly his and not mine.
As he becomes emotionally independent of me and therefore capable of a new relationship with me, so I must become emotionally independent of him. It is only when this mutually dependent independence becomes a reality that I shall be able most effectively to play a part in his adult life.
That may take a year or two and first there is another journey I must make. What is left when this large part of my life vanishes? To me he was always my child; to others close to him he was more of an adult; to some he was a burden I should be grateful to let go. People do not always realise that you can love the person causing your burden, even as the weight breaks your back - any of you who have cared for someone with great needs, I hope, will know what I am trying to describe here. It is just that sometimes our love is bigger than our strength. It is not just strength though, underneath I feel that it is right for him and me to have lives of our own.
What of my life now?
So I have to face the world without him. All sorts of factors arise. Although being the parent of a multiply disabled child restricted my freedoms, it did give me status, identity and priorities. Now priorities will need rethinking. I and my married partner have to face one another anew. Is the partner who helped me through now going to be the partner of my new life? What of those other aspects of my partner and me that now have no hiding place and were never resolved?
Most significantly I have to face myself and the struggle of self discovery again despite the urge to claw back the old situation. There is no going back to what I was before - it may be too much to say that Stephen made me, but he certainly changed the direction of my development.
I am the parent of an adult who will always need support and direction. He is not a child in adult shape but a dependent adult who does not depend on me. It may be some time before I grow to like that.
His carers talk of "letting go" meaning "letting them take responsibility." To me it sounds like letting someone down rather than letting them go free. It sounds as if people are thinking of my freedom rather than his.
My difficulty is that I cannot hand over responsibility to him; I have to hand over responsibility for him to others. If I can do that how much should I be involved afterwards? As his advocate, how good a job would I do compared with his present carers? As far as choice of clothes and activities were concerned who was Stephen’s best advocate?
Fathers and sons
How much does he want me to be involved? I missed my father when he died. I missed the times together, the advice, the ideas, the things important to me that only he knew of and the knowledge that he was there when I wanted him. But my life was my own. I want to be to my son what my father was to me but I am not accessible to him when he is not with me. My son needs those who know him best to advocate for and support him. Those people are the ones he lives with. As time passes the knowledge increases among them as it decreases with me. That is how it should be.
But it would be a tragedy if I was not a continuing part of his life. The balance shifts because I am becoming "one of the important people in his lfe" instead of "the only one". And that is good. He needs all of us.
Everything will hinge upon our maturity rather than his and upon our ability, emotionally as well as cognitively, to join in working for his benefit rather than our own. Then he will be able to play his most adult part along with us and we shall all glory in his successes.
