If you were to catch a glimpse of Anne walking down the street, you would not think her extraordinary in any way. Perhaps you wouldn’t even notice her in the first place – most people don’t notice old women. If you did pause to look for a moment, you would see a white haired, stooped, smartly dressed eighty three year old who still moves quite briskly for her age. If you looked a little longer, you may pick up in her unflinching, challenging gaze a hint of the steeliness and determination that sustains her.
Anne’s son is nearly fifty now. He does not live with her, but she sees him three times a week. One day she visits him, one day he is brought to see her and one day they are supported to go on an outing together. If they have enough staff on the rota to provide him with the two-to-one cover that is required to keep everyone safe, that is, so quite often it gets cancelled.
She told me that she knew from when he was a toddler that something wasn’t right. To start with, people told her the tantrums were a phase that he would grow out of and that all children behaved this way. She so wanted to believe that her beautiful, bewildered boy would stop the biting, the head-butting, the rocking, but as time went on and he didn’t grow out of anything, she grew more and more worried. As the months and years ground on, it was clear to everyone that he wasn’t developing as he should; that he was not ‘normal’. The few words he learned were simply not adequate for him to articulate the frustrations he felt with the world and so the lashings out continued. He clung to Anne as to an anchor in a stormy sea but, sometimes, she got in the way and the older he got, the more it hurt.
Friends drifted away. He was too difficult to be around and people – even the kind hearted, sympathetic ones – didn’t want their children to be around him. Eventually, when their boy was five, Anne’s husband left too and neither of them have seen or heard from him since.
The doctors tried to help her, but they couldn’t find an answer. He was definitely autistic, they told her, but that couldn’t explain everything. There was no other specific diagnosis, but talk of ‘developmental delay’. They talked about finding him a place in a children’s home, about how this would be the best place for ‘a boy like him’. So she went to look at the one they wanted to send him to and decided that no-one was going to lock her son up and throw away the key.
Who will love him when I’m not here?
So she fought the doctors who thought they knew best and kept him at home with her. She fought the social workers and she found a special school that would take him. She fought the local authority and she got the budget for transporting him to school and home again and for some respite time for her, so she could keep going. She fought the system and – eventually – she got the disability benefits to which they were both entitled.
Who will fight for him when I’m not here?
When he got to be adult sized, Anne realised she could no longer cope by herself. She couldn’t keep him safe and she couldn’t keep herself safe. She couldn’t believe that he wanted to hurt her, when she knew he loved and needed her so very much, but she did keep getting hurt. The amount of physical restraint required to control him became impossible when there was only her there to do it and he was bigger and stronger than she was. The complexities of dealing with a boy whose hormones, cruelly, developed normally whilst the rest of him did not, were too great for her to manage alone. So he went to live in a house with ‘boys like him’, with staff there day and night. And then, in due course, to another house, with different men.
Now, at almost fifty, he has been living in the same house for nearly two decades. Other men have come and gone, carers’ faces have changed regularly but there has been stability and security for him and always his mother at the centre of it all. Anne has continued to fight for him every step of the way, has been at every assessment and has protested against every repeated attempt to cut his care package. She has taught herself about the law and about his rights and she has been tenacious at securing those for him.
And now, as she progresses into old age, Anne is preoccupied with trying to make sure everything is as secure as it can be for her child before she dies. She has made sure that her son is not just locked away, that he has the opportunity to have physiotherapy in a hydropool, that his physical health needs are not neglected just because he cannot articulate what those needs are, that he is taken out into the community with an appropriate level of support.
Who will make sure he gets what he deserves when I am gone?
She has made friends with each and every one of the underpaid, endlessly replaceable carers assigned to be his key worker, to show them she appreciates what they do in the hope that they will be more inclined to look kindly on her son.
How will he cope in a world when he is difficult to like and there is no one left who loves him?
She is dismayed at the news of the austerity measures and the public sector cuts and what this will mean for her boy. She has refused to accept austerity-inspired attempts by harried social workers to ‘still meet his assessed needs, but in a cheaper way’ and has harnessed the support of charities and solicitors to prevent her son being moved, aged 49, to a care home with people decades older than him.
Who will protect him when I’m not here?
Anne once told me that she wished people who said they never wanted their children to grow up had some understanding of what having a child denied the opportunity to grow up was like for a mother. Meeting her, witnessing the strength of her love for her son and the extent of the fight she has made, has been humbling and moving.
She is an inspiration as a woman, an (unsung) disability campaigner, carer and mother.