A Child is for Life

My son Ben was born at 5.05pm on Sunday 25 November 1990. I was just 30 years of age.

Within moments, I sensed something was wrong. The medical staff were muted in their congratulations, nevertheless, they handed him to me and I marvelled at him as any new mother would. My husband left me to make telephone calls and fetch our two year old daughter to meet her brother. But I knew something was up. The Staff didn't behave in this way when my daughter was born.

Whilst he was gone, a nurse came to me and asked me when my husband would be back. "Not long", I replied. "Ok, the doctor will see you when your husband returns". I broke into a cold sweat. What was wrong? My head was spinning, I was exhausted and I kept looking at Ben for a sign, but could see nothing but a beautiful new born baby.

My husband returned, and within minutes a Paediatrician was at the bedside. She gave Ben a casual examination and then came the words. "I have to tell you that your son has Downs Syndrome". Our world collapsed.

Nothing had been revealed in all the antenatal tests, there was no genetic link with either of our families, the chances of my having a child with DS were put at 1 in 780. The shock was immense.

The days that followed were hazed in a fog, I remember words: "it will be a job for life" (my mother-in-law), "you know, you don't have to keep him", (my mother), "you must be Angels, God only chooses Angels for these children" (a nurse) and "if there's a disability to have, Downs Syndrome is probably the best" (my GP). My GP later said to me, "don't worry about Ben, he will lead a happy life, he will not know any diffierent".

There followed a period of complete uncertainty. We lived on Whisky and cried non-stop. It was almost as if we had lost our child, a bereavement, a grieving for the child we would never have. Ben went into temporary Foster care whilst we decided whether we could cope. The trouble was, we didn't know what we would have to cope with. Downs Syndrome, like so many disabilitiies has a wide spectrum of difficulty. Some people with Downs Syndrome (DS) go on to live almost "normal" lives, holding down jobs, driving cars, even marrying. Others do not. We would not know the full extent of Ben's difficulties until he reached the age of approximately 12.

Christmas was approaching and my emotions were ragged. Friends and family rallied and tried to give their advice, but none of them really knew of the trauma of giving birth to a disabled child and the worry that that child would bring over the coming years. Neither did any of us know of the absolute joy that our child would bring.

A decision was made to bring Ben home just before Christmas. That was it. No going back. I forgave my mother and mother-in-law for their earlier comments. They came from a generation embarrassed by disability, it was a stigma to them, these children were mongols, spastics, retarded, names that I hope are no longer used today.

At first I was very self- conscious when I took him out. Convinced that people were staring and pointing (and believe me, some did). Eventually, I overcame my discomfort and stared back, daring them to look at him in that way.

The years that followed were littered with hospital visits, physiotherapy sessions and occupational therapy sessions. He was generally healthy, had a minor heart lesion and hearing and speech difficulties, but was active and walked at 21 months.

Ben was, and is a charming character, full of fun, enjoys a joke and a comedian. When Ben was about 5, I remember one hilarious incident as we left a local golf club having had Sunday Lunch there. Ben bolted across the first tee with my husband in hot pursuit. Golfers looked bemused, my husband (who was a member there) looked hot and bothered and Ben was in fits of laughter. Our friends with whom we had dined, fell about laughing in the car park.

Ben attended many special schools, ranging from moderate to severe learning difficulties. He was always in the school play, loved the attention and produced many a laugh, a real character, always willing to please and enjoying being centre stage.He memorably played the part of Father Christmas one year, to rapturous applause from the audience. He didn't want to leave the stage and kept coming back for more! At that time, he was in a school for severe learning difficulties, and was described as a "big fish in a small pond", so we moved him to a school for moderate learning difficulties. Big Mistake. Ben was out of his depth, so were his teachers.

In the summer of 2005, we moved house to a diffierent county and Ben had to move schools. He was approaching 15, a large lad, loved his food, mobile, but displaying some worrying behavioural difficulties, puberty had set in and he didn't understand himself, let alone how he was supposed to behave. Ben was admitted to an MLD school (the only one with a place available) near our new home. Within days there was an incident, the school tried, but within 6 weeks of him starting, they made it plain that they couldn't cope with him and that their school was not the right place for him. What followed was a period of 8 months when Ben was out of school altogether whilst the Local Authority (LA) argued with us over his placement. In January of the following year, the LA arranged for Ben to attend a privately run school for a risk assessment over a period of a week, which they would pay for. Ben presented many difficulties during that week, and the school produced a report again stating that Ben needed a much more structured environment and that they could not offer him a place as their risk assessment indicated a strong tendency to run off and harm himself, or others. Astonishingly, the LA refused to accept the report and it was another 4 months and upon the instruction of solicitors that we forced the issue. Ben finally gained a place at another privately run SLD school close to our home, for which the LA now pay for him as a weekly boarder. That episode cost us over £10,000 in legal fees.

Ben is now approaching 18, a gentle giant, kind, sensitive, difficult, eager to please, repetitive and loving. He has the mental age of a five year old, will never lead an independent life, cannot understand money, has no road sense and cannot read or write more than a few words. He will never learn to drive and it's unlikely he will hold down anything more that the most menial job. He wears bi-lateral hearing aids and has speech and learning difficulties. He loves Eminem and Robbie Williams is his hero.

We are now exploring the joys of "adult services" for Ben's future. The LA have done a lot of form-filling, but, and I quote, "we don't really know what services are available at this time". So here we go again, another fight, another battle to ensure that our child, this young man receives all the help, understanding and care that he deserves. If only we could change attitudes. So often, the authorities, pay nothing but lip service to the needs of these young people, so often, they fail to provide, haven't got the money, or the agencies they pass the buck to can't provide either.

I think Ben has lead a happy life so far, my GP was right in that respect, I thnk he may suspect that there's a different life to be had. He gets upset when we can't let him out of the house alone, or that his younger 15 year old brother doesn't want to take him out with him, he thinks he will drive a car and have a job and get married. I doubt it. All we can do is ensure that Ben, our wonderful loving son has the best opportunities available to him, for the rest of his, and our lives.

To all parents of disabled children out there, I salute you. Keep fighting and don't lose heart. These children are worth every moment and I wouldn't have missed it for the world. He was and is a Gift.

Verbal Warning

What is it with Teachers? I'm a 48 year old professional female holding down a highly stressful and important job, whilst simultaneously running a household of 7, including 3 teenagers and two terrible two's. Yet today, I felt as if I were back at school, spoken to in that patronising tone that teachers do so well, with the occasional sympathetic smile when obviously they were thinking "crap mother".

I should add at this stage, that I made my way through infant, junior and senior school without so much as a detention. I never had a hairgrip out of place and was frankly terrified of my teachers. I left school with 7 "O" levels (they had proper exams in those days) and I've worked ever since. I wouldn't have known where or how to buy drugs (although I'm sure they were around) and the worst thing I ever did was stay too late at a disco (because I was dancing to "Pretty Woman" by Roy Orbison with a lovely chap) and incurred the wrath of my father who dragged me out of there by my pigtails.

I was summoned to my 15 year old son's school by the deputy head - a man of similar age, American by birth with an odd mid-atlantic accent and his head of year, a small weasly woman who looks as if she has a bad smell under her nose and never had sex in her life. The purpose of this meeting was to warn me and my wayward son that they suspect, from rumour alone, that he's using cannabis. If they had bothered to pick up the phone and asked me, I would have confirmed it anyway. It's just another worry as far as I'm concerned. I don't condone it and my son knows how I feel. We live in a rural village and it's use is rife amongst the local teenagers. He strongly denies having tried anything else and I have warned him about the "slippery slope" etc etc. Now, short of putting a dog lead around his neck, buying a kalashnikov and executing all of his friends, would someone like to tell me how I stop him associating with those that regularly use it and don't consider it a problem? There is nothing for these kids to do in a village like ours, the police are only interested in breaking them up when they crowd around the fish and chip shop, sending them scurrying away to hide in dark corners and get as high as a kite. Then, if you please, I find myself defending my stance, when my son quite rightly tells me that cannabis has been downgraded by this government who clearly don't see it's use as a risk.

The upshot of this meeting of minds was a warning to my son that if they "believe", with or without evidence that he is continuing to use cannabis then he will be permanently excluded from school and will only be allowed back into the system to do his exams in May. Exams which he will fail because he's missed so much school because they excluded him. So yet another teenager will fail in the education system and be chucked out without so much as a mexican wave. He may go on to try harder drugs with his low-life mates and end up without a job for the next ten years, if ever, relying on state benefits and staying out of prison by the skin of his teeth, if he's lucky.

It's just as well the wonderful British criminal justice system doesn't convict with or without evidence and on belief alone, but somehow this school believes it can act as judge and jury in a matter like this.

And another thing - I promised I would keep a tighter rein on him and asked them very politely if there was such a thing as drug counselling within school - Er.... no, it's been withdrawn - lack of funding you see. I rest my case.

Now I don't sleep at the best of times. Tonight I will be able to outstare a stuffed owl.

Truly, Madly, Deeply

It was a cold grey early November Monday morning and I was sitting at my desk, contemplating another five days in the office. I checked my emails, mostly junk, then my favourites on the internet - the webcam on the Oriana - Mum & Dad were back in Southampton today, the webcam at Calella de Palafrugell in northern spain, a lovely sunny day, the national lottery - did I really have to spend another week here? Unfortunately, yes.

So, the week began as so often before, nothing much to report, nothing much to look forward to, except a frighteningly high credit card bill, an overdraft and only two paydays to Christmas.

It had been over two weeks since his last text, nothing particularly unusual in that, but it's rarely more than two weeks, sometimes I get a message and we indulge in a text conversation, lasting several hours. Nevertheless, I felt uneasy, had I heard from him for the last time?

His texts are always full of wry humour, followed by gentle caring and sometimes slightly pornographic thoughts and they always, always make me smile. I wondered, should I send him a text? Hmmmm, don't want to appear needy, but needy, I am.

I restrained myself. The telephone rang and and so began the start of another busy, stressful day in the office.

At 4pm my mobile gently bleeped at me. "1 message received". It was a text from him. Instantly, I smiled. He asked about my weekend, nattered about his own, then he said "thinking of you" and finished with some mildly sexy code for the things he would like to do to me.

I think of him too, every day. It's been over two years since we parted company and I know he has someone else. Why does he stay in touch? Does he harbour some hope that one day I will tell him I am alone and available? We parted for that very reason, it was the wrong time for me. Will it ever be the right time?

Or is he just the serial womaniser I fell in love with? I still adore him.

I will be eternally grateful for having known him, but there's nothing so profound as the loss of profound love.

Bon Voyage Mum & Dad

My Mum & Dad aged 76 & 77 respectively, live 200 miles from me in a beautiful seaside town on the south coast.

With everything that's happened in my household over the last two years, I have only managed to see them twice a year and I miss them so very much. We speak on the phone every week of course, but it's not the same. I purposefully don't tell them about all the traumas at home because a) it would stress them out and b) they couldn't do anything about it anyway. They are far better off left happy in the assumed knowledge that everything in my life is hunkydory.

Yesterday, they took off on the good ship Oriana for a cruise around the Mediterranean, visiting Barcleona, Cannes, Rome, Naples, Messina, La Goulette & Malaga amongst other places. Mum telephoned me when they had embarked and reached their cabin. She sounded tired but happy. We have agreed that I will not telephone the ship because it's a £3.00 a minute charge, but that she will be in touch. They have mobile phones but only switch them on when they're expecing a call! (I think that's an age thing). I wished them a happy time, put down the phone and inexplicably cried. I suddenly felt so isolated and alone. It's funny, how quite unexpectedly, you become worried about your parents, when they of course, will always say that it's their job to be worried about you. Perhaps it was knowing that they are out of touch for two weeks (although I probably could track them down if I really needed to).

I joked with her...

"Are you wearing all your jewellery or have you hidden some back at home?",

She laughed "Well, I'm wearing what I always wear and yes, there's other stuff hidden, you know where".

I said "Ok, I just wanted to be sure, because if that ship goes down, I don't do deep sea diving!"

She hooted "Well really!!"

"It's my hair and makeup and the contact lens thing" "I can't have water on my face". I said.

She tittered "Wait unitl I tell your Father!"

That reminded me of days gone by - she would utter that phrase when I had done something really naughty, like smack my brother or answer her back. How I wish I could have those days again. Someone to look after me, no worries and a comfortable cosy home.

Behind the jokes there is a serious note. I know they're getting older and I don't want to lose them. I need my Mum and Dad but I'm acutely aware that time is running out. Perhaps's it's my age and my sudden awareness of my own mortality, the worry I have for my children, my own tiredness.

I've visited the Oriana website. The ship has a webcam - it doesn't show much, but I could arrange with them to stand on the deck and wave at it at a particular time and day, so that I could wave back. Even better, I've taken a virtual tour of the ship and have even seen inside their cabin! What a hoot! Just wait until she phones. I will tease her that I've seen her at the dressing table, cup of tea by her side, heated rolllers in her hair, slippers by the bed - I can even describe the colour of the carpet and bedding. She won't believe it either, but it gives me some comfort. Technology is a wonderful thing.

There is no escape!!

Top Marks and Sparks for Nigella!

Last night, I made Toad in the Hole. I used the finest plumpest Lincolnshire sausages and sizzled them in a little garlic oil from the sunsoaked vineyards of Tuscany with the sweetest most succuent onions delicately chopped to perfection, infused with gloops of runny golden honey and a splash of midnight dark soy sauce. When they were gently tanned I immersed them in my creamy batter and baked them in a comfortingly hot oven. The batter rose elegantly to mountainous proportions and I served it with perfectly formed baby roast potates, hand picked petit pois and sweet velvety onion gravy. This is not just food, this is my food.

Of course, I did all this after a soothing fragrant bath, dressed in a black silk nightgown, hair and makeup perfect, sipping a glass of Pinot Grigio and served it to a suitably impressed and grateful husband and perfect children who were full of praise. My house was pristine and the kitchen decorated with copious amounts of fairy lights. Even the dog thanked me.

Ok, ok, ok. I know you don't believe me.

In reality I bought ordinary pork sausages and Aunt Bessies Yorkshire puds. The roast potatoes were ready made and the petit pois were frozen. As for the gravy, thank you, Bisto. My house looked as if we had been burgled and husband and children were glued to the television throughout. A mirror cracked when I checked my hair and make-up, I didn't have time to change from my funerial office attire and my feet hurt. The dog looked miserable.

All credit to Nigella. I can't imagine how she does it. Maybe it's something to do with the fabulously rich husband, intellectually superior children and an army of domestic assistants.

I will continue to dream. Everything comes to those who wait, so they say.

Stop the World - I want to get orf!!

The bathroom situation at home has gone from bad to worse (see Teaching Granny to suck eggs). Last weekend, I decided that I should have done what I said I would do and demand that daughter of darkness move the twins into her brother's room, so that he could use the telephone line installed in their ex-bedroom for his internet access. She doesn't sleep in that room because the twins might wake her. The twins would then have an altogether bigger room in which I could install the playpen (currently in the living room) and it would be an ideal "nursery". I would move a t.v. in there and buy a digi-box so they could have their pick of the channels She could have exclusive use of the family bathroom. NO, NIET, NON, NR,HER, NAO!!! Was the answer, leaving aside the expletives. Because the twins room had the benefit of the en-suite, (her en-suite, you understand), she would not give it up. Thus ensued an argument of apoplectic proportions.

I think maybe I'm beginning to develop Tourette's (please don't be offended anyone who suffers or knows someone who suffers, this is not meant to be a derogatory comment). My screaming was interspersed with "I don't F***ing believe this!" "Two f***ing years ago, five of us were sharing one f***ing bathroom, now we're arguing over three f***ing bathrooms!!!"" "You have moved into this house with the twins and you and your mess has f***ing invaded every f***ing rooom, you haven't even picked up the f***ing wet nappies from their f***ing bath last night!!! You spend all day watching Jeremy f***ing Kyle, This f***ing Morning and f***cking Friends instead of putting some f***ing washing on, tidying your f*** tip of a room which still has a f***ing yohurt pot, spoon and f*** dirty used facewipes sitting on the f***ing cabinet from three f***ing weeks ago!!!" Etc, etc, etc. You get my drift.

She yelled back of course. Lots of screaming, crying, effing and blinding, coupled with threats to move out, I always get that when we fall out. Well she can move out. I will be heartbroken of course, I have become very close to the twins and I feel so privileged to have been able to see them grow over the last twelve months, but she simply doesn't appreciate the help, the house, the physical, emotional and financial support she's had. Maybe it will do her good to stand on her own two feet. Trouble is, she's reliant upon finding a Council property or Housing Assocation property where the landlord will accept a DSS tenant. It could be months, if not years. So I will continue to bottle up my anger and suppress my comments under my breath at the risk of upsetting Princess Daughter - until the next time I explode.

The result of all this was that I couldn't take the shouting and screaming, I was beoming more beetroot red by the minute and was terrified of bursting into spontaneous combustion. So I took her brother to Birmingham where we indulged ourselves over a long lunch at Cafe Rouge and watched the world go by. Wonderful, but he still hasn't got a room with internet access and it looks as if I will have to pay to send him "wireless" - whatever that means.

I bought him some Jeans and her a fluffy dressing gown with a "Grumpy but Gorgeous" logo on the back. You see, now I'm feeling sorry for her, because she cried,and because she's a single mother aged 19 of twins aged nearly two and she doesn't have a boyfriend and she doesn't have much money and she hardly goes out and she feels isolated and her friends are all working and nightclubbing.

I still have a sense of humour - just.

Monday Blues

I work for a firm of solicitors as a Conveyaning Fee Earner. This means that I buy and sell residential property for clients and that the fees I generate for the firm are target driven with a (theoretical) bonus paid to me if I exceed the target. The said bonus scheme is extraordinarily complex and probably unachievable in any event particularly in today's market. The bonus, if achieved is then paid over 5 months, thereby dissipating it's effect.

The residential property market has been hit by the introduction of the poorly thought out and expensive Hips, together with successive interest rate rises. Peculiarly, every month the Senior Partner will call me and ask me why my costs are down and why do I think I'm not opening so many new files? Perhaps he doesn't read the newspapers or watch t.v. - I'll give him the benefit of the doubt on that one. I give him the same stock answer each time. Add into this equation the fact that he took on another solicitor with two support staff in June of this year, thereby almost doubling the office overheads - I'm not counting on any bonus this year.

Everyone knows that buying and selling property is one of the most stressul things one can do. Imagine being the person at the end of the phone trying to explain the complexities of the conveyancing process, when all the client is interested in is a moving date. There must be a better way.

By 10a.m. today, one of my more difficult clients had reduced me to tears. This is not a normal reaction for me, but it's Monday and I'm pissed off and unmotivated.

Maybe I'll apply for a job at the supermarket.