Monthly Archives: May 2015

An Inspiring Mother

hands2If 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.

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Filed under ageing, individual development, parenting

Fourteen

14-1Fourteen flings his arm easily around my shoulders and tries to push down on me to elevate his own height, keen to prove that he is taller than his small mother. He’s not, quite, but it will only be a matter of months. If I turn my head just a small amount whilst his arm is around my shoulder, I am startled to see his face, right there, where once I had to bend over him in his cot or his highchair to press my cheek to his.

His face is still as beautiful as the baby face I adored, but is now morphing into a man-face.   There is heft and length to the jaw, a new untamed bushiness to the eyebrows and a definite dark shadow on the upper lip that will soon need attention.

The hand that playfully claps me on the back, accusing me of only being taller because I am wearing heels, is bigger than mine. The feet that he tries to raise imperceptibly to give him the height edge on me as we stand back to back have gone through several growth spurts in the past year, pausing for too-brief months at a point where we could share shoes. Suddenly there are almost-man sized extremities on a still slender, still short, boy’s frame, presaging the growth to come.

His voice has deepened and is deepening still, his laugh catching in his throat, unable to settle on the right register. He can kick a football with such force and strength that his younger brother sprains his wrist trying to stop it powering into the net.

Fourteen has bursts of physical energy, playing football and going to a gym. He seems to need to spend the rest of his time in recovery, lounging on the sofa for hours watching episode after episode of The Big Bang Theory or How I Met Your Mother sighing ‘I’m so tired…’ periodically. The boy who for years and years woke up (and woke me up) at 5.50am every….single….day now needs rousing on school mornings and lies in at weekends. He has become the slug-like teenager that people told me he would, but I never believed possible.

His appetite has grown to facilitate the changes. I see him standing by the fridge-freezer, opening the top half hopefully to seek (vegetarian) fuel within and realise with a shock that, standing at full height, he used to fit under the door, clinging to my legs as I cooked. I wonder how I have missed noticing his boyhood passing so quickly.

Fourteen has the twenty first century teenager’s reliance on technology down to a fine art. He likes nothing better than playing FIFA on his Xbox whilst simultaneously flicking through Instagram on his phone, 5 Live on his radio all the while providing a droning background commentary of a real football match somewhere out in the real world. I have the twenty first century parent’s anxiety about my teenager’s dependence on technology down to a fine art. We have awkward conversations where I feign an ‘easy chat’ about the risks of modern life and he feigns insouciance about the embarrassment I am subjecting him to.

But I realise that technology has given Fourteen and me a way of meaningful communication – albeit sporadically and on his terms. We text, quite regularly.   ‘Time for bed’ I try, from my bedroom upstairs to Fourteen watching TV downstairs (I have tried ‘time 4 bed’ but I can’t pull off the ‘4’ with any sense of credibility). He begs for a few minutes longer, on one occasion to finish watching a documentary about gay people in Russia, which has obviously become unexpectedly fascinating when faced with the alternative of going to bed. Texting gives me the possibility of regular inconsequential communication with him and an insight into my witty, entertaining son’s life. When engaged in a quick fire exchange, he tells me things via text that I do not think he would get round to disclosing face to face.

Fourteen can be an engaging, witty, charming companion. Whilst still prone to sudden bursts of anger – particularly directed at his younger siblings and particularly triggered by car journeys – he has calmed down a lot over the past year. He has a lively, enquiring mind and an interest in history and current affairs. He is interested in and can talk knowledgeably about the election to be held the day before his birthday. He is a safe pair of hands with whom to entrust conversation with visiting adults – he generally likes their company and they generally like his.

Fourteen still has a preference for trying to establish a definitive answer to any question and is particularly keen on pitching ideas or concepts against each other. He becomes engaged by a school history project to decide who was the greater villain out of Stalin and Hitler. I recall similar exercises in my own schooling and my tendency to find it unbearable to plump for one side or the other, preferring instead the ‘on the one hand….on the other hand’ type of argument. Fourteen, however, delights in being able to argue the case for the one over the other. I am met with bemusement if I try to point out to him subtleties of argument, unreliability of evidence or uncertainties of conviction.

His insistence on being given ‘the’ right answer is wide ranging in scope. Fourteen is soaking up his cultural heritage, exploring his place in twenty first century Britain and deciding what the ‘right’ thing for him to think is on any number of issues. Amongst other things, I have been asked over the past year to pronounce on the definitive ‘best band of 90s Britpop’, who should have won the Blur v Oasis chart battle, the ‘funniest sitcom of the 80s’, the ‘best play that Shakespeare wrote’, whether Lennon or McCartney should go down in history as the greater man, whether ‘people’ think Beethoven or Mozart was better, who the best James Bond has been and (after YouTube research) why people ever laughed at The Two Ronnies. He rolls his eyes when I refuse to be drawn on a ‘winner’ and talk to him of opinion, perception or historical context and try to tell him that the world should not be reduced to an endless series of competitions or black and white pronouncements. For the time being at least, it falls on deaf ears – he is a competitive boy, at a competitive school, being endlessly prepped for a competitive future and trying to negotiate his road to success.

Fourteen’s vulnerabilities are better hidden than when he was younger, but lie ready to be scratched just beneath the surface at all times. He has begun to relish time alone in the house without an adult (something previously unthinkable), but can be panicked suddenly by noises, smells or things glimpsed out of the corner of his eye. An innocuous household noise prompts a panicked telephone call to me, with Fourteen convinced that the living room ceiling is about to fall down. Swirling leaves in the garden become unexplained visions at the window.

A fear of flying is becoming more entrenched: the rational boy who loves and repeats statistics, facts and figures refuses to be convinced that flying is less dangerous than car travel, despite all evidence. Instead, he refuses to move beyond his assertion that most people survive car crashes, whereas no-one survives a plane crash and tortures himself with his anxiety about an upcoming holiday. He is so certain, so definite, so unwilling to be consoled.

We are in an awkward inter-regnum between requiring babysitters (generally in the humiliating form of girls not much older than him) when we go out, or letting him be the unstable, vulnerable king in charge of his younger brother and sister for the evening.  His huge capacity for empathy, his charm, his self control are not yet quite reliable enough to withstand the provocation of two younger siblings. But it won’t be long.

He is interesting, sometimes infuriating, lovely, charming, obstinate, empathetic – my beautiful boy at Fourteen.

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Filed under individual development, young shoulders