Back to work

I'm busy typing up a letter of complaint to Lulu's local hospital. It's tedious deciphering someone else's handwriting but she has no access to a computer and we both recognise the need to keep copies of all letter, so I offered.

Let me explain. Lulu is another mother of a boy with an 'autistic spectrum disorder' but he also has a number of health issues on top of the behavioural ones. In fact, Jimmy's health problems could provide the basis for at least a year's worth of medical lectures. He's had more operations than all of my friends put together, has a limited life expectancy and is doubly incontinent. Lulu has a theory that behavioural problems and incontinence are the least popular medical conditions, making Jimmy a social pariah. I've met him and she has a point.

Lulu is married, but suspects that her husband has Asperger's Syndrome. I've never met him but I have heard of him and she is probably right. They were married when she was about seven months pregnant. I'm not certain why either of them bothered, given what happened afterwards, but I suppose we must assume that they were both attracted to each other at some point.

I know Lulu as a carer, her life revolves around Jimmy, his social ineptitude, his malformed body, his bladder and his bowels but there was a time when she was a real person, with a job, aspirations and a social life. Then, she trained as a chef and when she isn't snowed under by Jimmy's needs I sometimes get a glimpse of the cook she should have been. Her kitchen is a wonder of ergonomics and ingredients and really reflects her interest. Physically, she is stick thin and worn with worry, but still clearly an attractive woman.

For really complicated reasons, known only to her local education authority, his school and Lulu, Jimmy attends a school in the Midlands but she has a home on the South Coast. Because of Jimmy's myriad health problems, Lulu spends term times in the Midlands, in the cutest little cottage. The problem with that is that Lulu doesn't fit in to the gritty Midlands. She probably stands out less than she thinks, but she is essentially a southerner and feels that we are all pointing at her, making assumptions based on her accent. I haven't the heart to tell her that although I've always lived between Birmingham and Edinburgh, I have visited the South, I've had friends from the South and I'm comfortable with people from the wastelands below my current home. Last month she was trying to decipher my northern dialect attempt at the word 'aunty'. Ok, so I pronounce it 'anty' but surely she has heard enough episodes of Coronation Street and Emmerdale to realise that I was talking about my uncle's wife? When it finally twigged and she unconsciously exclaimed 'Oh, you mean 'aunty'!' I laughed good naturedly and told her we'd make a proper human being out of her yet.

Anyway, here is Lulu, stuck in the Midlands with neither family or friends and a horrible, needy child for her only company. A member of staff at Pip's old school (one of the few I respected) phoned me up one day and asked me to invite Lulu for coffee. I like to think he recognised the empathy and kindness in me but it was probably just because I lived within an hour's drive. It took a long time for Lulu to respond to my invitation but as soon as I met her, I saw she was close to breaking-point, so I persevered. And thus began a strong, close friendship.

I try to be there for Lulu, to listen to her gripes, help her with her inevitable skirmishes with the care and health professionals and just to let her know that she isn't on her own in all this. She has parents, who live near her home, who I've never met. They are loving and helpful, but one is quite old and the other has other family with health problems, so they can't see as much of her as she would like. The rest of the time, certainly during term time, Lulu is stuck with Jimmy in a picture book cottage in a small Midlands town. Knowing Jimmy as well as I do, if I was Lulu then I'd either turn to drink or drugs. She already has.

Once a fortnight a group of mothers from Pip's old school meet for coffee. We call ourselves the coven, basically because we assume that headteachers, health professionals, social workers and education authority staff would look upon us as a difficult, bad-tempered cabal of bitter mothers. We are, but we also celebrate each other's good news, share in each other's families and support and listen to each other. For the last year, we have got each other through the numerous crises and disappointments which are the lot of the mother of an emotionally stunted child.

We have three venues for coven meetings, all of them hand-picked and all of them welcoming. The first of them is the bookshop. It's an old, rambling building stuffed full of books, with a tiny little cafe at the back. We squeeze onto a tiny pew, shuffling our ample bottoms ever closer as more of the coven arrive. We start off by discussing our choice of cakes, interspersing our deliberations with news stories which we can't contain any longer, polite questions about each other's children and rude observations about the officials who have thwarted us. We are noisy and lively, our conversations dominating the room, the waiters interacting with us, chatting and joking as the day wears on. Then suddenly, without any warning, we rush out to meet our homecoming children.

The first time I met Jimmy was a cold, winter's day. Lulu, Dee and I had already established our table at the bookshop, on our third pot of tea and reluctant to break up our meeting. Lulu rushed off to the school just down the road, then came back to introduce us to Jimmy. Jimmy has the high pitched whine so common to children on the autistic spectrum. I offered him a choice of cakes whilst his mum went back to park her car. His whine reached a crescendo as he found himself in an alien environment, with two caring, fussy women and a choice of cakes. Dee and I looked at each other and I mouthed 'ADHD' at her, she responded with 'and a hefty dose of Asperger's'.

A tiny, cramped cafe is no place for a child with ADHD and a generous slice of chocolate cake is of no interest to a faddy child, so when Lulu came back we let Jimmy wander off into the children's section of the shop. It was literally around the corner, well within hearing range. Within minutes we heard the whine now anxiously shouting 'It's my book, not your's, I found it first, leave it alone'. We ran out, to find Jimmy in the middle of a tug of war with a shop assistant. The magic of the place suddenly evaporated and we left, with the untouched chocolate cake in a napkin. Knowing Jimmy's lack of appetite, I expect it made a surprise and welcome tea for their dog.

After that, aware that Lulu is bored and lonely in the evenings and at weekends, I have tried to meet up with her. But it is difficult when I have my own disabled child. One evening I found myself in the area, waiting to collect Pip from a party, so I passed the time at Lulu's little cottage. Lulu already had a generous glass of whisky in her hand as she welcomed me in. We ate soup and warm bread, or rather, Lulu and I ate the soup, whilst Jimmy fretted about a board game he wanted to show me. Lucy filled up her empty glass with wine, offering me my usual glass of sparkling water. Eventually, after repeated reminders, we gave up on the untouched bowl of soup and emptied the board game onto the table. Jimmy reminded me of the official rules of the game, demonstrating some of the more difficult aspects, showing me alternative games, talking about the programme the game was based on, showing me some of the pieces which particularly attracted him then taking me over to the toy cupboard to show me yet more board games. The phone then rang, it was Pip asking to be picked up. I helped Jimmy tidy away his game, listening to him whining that I hadn't got round to playing the game and that I had to come back soon, so he could show me the game rules in more detail., Lulu poured herself another glass of wine and thanked me for coming, then I left. As I drove up to Pip's restaurant, I shook my head at the quantity of alcohol Lulu had drunk, then reasoned that I would have shot myself in her place. An evening of planning a board game with a child who is too hyperactive to settle down to the game, followed by a stomach wash out then patiently picking pieces of poo out of his bath was my idea of hell. On the way home I thanked Pip for being such a wonderful son, he looked at me confused but decided that was just the eccentricity of a neuro-typical woman and ignored the comment, preferring to tell me in detail about the meal he had eaten and his plans for when he became prime minister. I hugged myself in delight that we might be weird but at least our conversation was two sided and his interest in food hadn't diminished.

Jimmy had an operation last year. It was relatively minor for him and only required a few days in hospital. Lulu told me about the impending operation during one of our regular meetings, confiding in me her bitter hatred of most hospital staff. It's a bit scary listening to a woman who's son's life depends upon the expertise and kindness of nurses and doctors, as she proceeds to criticise them, but her dislike is understandable. Jimmy's autism seems to affect every aspect of his life, so that his pre-med drugs, designed to make him drowsy and comfortable have the opposite affect, making him noisy, angry and irritable. The anaethetist stands by in horror as Jimmy proceeds to shout and swear at anyone who will listen to him as he bounces on his bed. Jimmy's dislike of change makes every visit to hospital, every procedure and every interaction with hospital staff an embarrassing and humiliating experience for Lulu. She described how a doctor, in a child friendly moment, toured the ward, asking his patients how they were. The Little Lord Fauntelroy in the bed opposite, lisped his grateful thanks for the attention and generously showed the doctor his new toy. As the doctor neared Jimmy's bed, Lulu's anxiety rose. 'And how are you feeling today?' questioned the unsuspecting victim. 'How do you expect me to feel? I hate this bloody place, f*** off!' came the honest reply. Lulu can take these responses without even wincing now and, under the influence of the coven, is beginning to see the funny side of it all.

But to add injury to insult, Lulu loses Jimmy's Disability Living Allowance and her Carer's Allowance whenever Jimmy goes into hospital. In a marriage where she enjoys none of her husband's income unless she is at home and cannot work because of Jimmy's complex health needs, that loss is significant. The argument is that Jimmy's needs are all met in hospital, but in practise, few nurses are trained and experienced to meet his complex personal needs. Besides, since he is so talented in verbal abuse, few of them would welcome the challenge. Food is a similar problem. A child who can turn his nose up at the perfect chocolate cake at the end of a busy school day and who is significantly underweight is not going to be tempted by standard hospital fare. It takes all of Lulu's finances, ingenuity and imagination to keep that boy from inadvertently starving himself to death in hospital.

Lulu's most bitter criticism is directed at social services. It's one of the strange anomalies of autistic spectrum disorders that most mothers hate social services with a vengeance. After we have circumnavigated the bland 'he doesn't fit our criteria' argument we face the assessment of needs test. Emboldened by our coven, who egged her on, Lulu contacted her social services. Because of Jimmy's physical needs, Lulu managed to get to the assessment of needs stage quickly, so far so good. She was then handed a forty page questionnaire and left to fill it in. She cried to me as she recounted the experience, telling me she was too emotionally raw to fill it in. Always one to find a silver lining in all clouds, I told her it was a blessing as it would give us an opportunity to clearly demonstrate her need for help. She wasn't sure, so I arranged to meet her the following week to complete the form.

We met up the following Friday, Lulu with the form and I with a note book and a stack of pens. We met at the art gallery, our second favourite venue and prepared ourselves with strong coffee and cakes. For the next three hours, amply fortified from the cafe menu, we ploughed through the form, writing and re-writing our responses, adding all the relevant details like her husband's drink problems, her depression and the lack of support. Even Dee and I got a mention, as the two local(ish) women who provide limited support in spite of their own problems (single parent of disabled child in my case, single parent of disabled child with terminal cancer in Dee's case). As we wrote the damned report we alternated between crying and exaltation at a particularly splendid turn of phrase. We left each other optimistically arguing that even the most stone-hearted social worker, work-hardened by listening to years of sob stories would be obliged to respond positively to this particular tale. I spent the next two days working well into the night, perfecting our case. A week later Lulu presented the report to her social worker and we sat back, delighted and proud of our work.

Months later, concerned that we hadn't heard from social services, Lulu contacted them and waited for the response. It came just before the end of the autumn term. As usual it came to her home address and her husband opened it. He phoned her up, annoyed about it and the coven assumed it was the allegations about his drinking. At our last meeting we all nervously told her to come back up north if he became violent and waited anxiously for news. Eventually she phoned me and assured me that his concern had been for his driving license, which he had lost after being caught drink driving. He had been in the process of reapplying for the license and was concerned that social services would read the report and block his application. Clearly, Lulu had spilt the beans to social services just to upset him and prevent him from driving again.

But what about the response of social services? Had our heart-felt plea for help, clearly worded and detailed, liberally sprinkled with true anecdotes outlining Jimmy's behaviour and physical problems melted some bureaucrat's heart? Would social services arrange for the necessary support and give Lulu the much needed break we had requested? I inadvertently laughed as Lulu explained that all of the family problems were caused by her poor relationship with her husband, that the pair of them were so selfish and antagonistic towards each other that their unhappy marriage was affecting Jimmy's care and that a series of sessions at RELATE and a positive attitude would solve everything.

We have arranged a coven meeting for next week, snow permitting, and before we have even sat down with our lattes we will have already started blackguarding the social work profession.

In the meantime, it's time to get back to that letter...............................