Sylvia's gift

I’ve just returned from my run. It’s so tough to get out on that pavement every morning. The slightest excuse delays me, and not much needs to happen for me to cancel. But as soon as I hit my pace, my thoughts connect and I disappear into another world. My brain is so focused, it’s like I lock into my mainframe. My mind becomes clear, true feelings pop up to greet me, problems become more resolvable and the shackles of stress slightly ease.

There have been times when I just couldn’t face running, the thoughts I had were way too painful. To connect to my mainframe was the last thing I could cope with. A few months ago I lost my mum. She died of cancer of the oesophagus, a long, slow death over a period of a year. It was horribly painful, cruel and savage. She told me she ‘never knew there was so much pain in the world’. On the last day of her life she turned to me and held my gaze saying,
‘My love, get a gun and shoot me’. I knew then that it was over.

For that final year of her life I didn’t pay very much attention to Down’s syndrome. My mum and her impending death was my only thought, my only focus. I had always imagined the shock of having Max and trying to cope with his DS would be the hardest thing I’d ever have to deal with in my life. I was wrong. The agonies regarding Max, I’ve had to face along the way, don’t come close to the profound sadness of losing my mum.

When she first passed away I felt completely numb, and to be honest very relieved. To see someone you adore suffer so much pain is brutal. Then for a while my logical brain kicked in and told me that everyone must die. It’s part of the human condition. I needed to accept it, and get on with my life. Now, I just miss her massively.

My Dad says we now exist in two worlds side by side. The old world which contains my mum, all the memories of her and the life we all led together, and then our new world, the one without her. He say’s that they run parallel, side by side, overlapping on the oddest, surprising occasions. It’s true and for me, this new world has a strong urgency about it. My mum’s death has taught me the fragility of life, that we are mortal, each and every one of us. Time is precious. I’m going to treasure that lesson, consider it her gift to me. It would have been her birthday today. Happy birthday mum.

So my thoughts of DS are back, big time. The Down’s Syndrome Association published the minutes of their AGM this week. Some very disturbing facts have emerged. Of all the calls they receive to their help lines each day, 80% of them are about adults with DS. Not babies and young people as you might imagine. No, the calls are about adults living in miserable isolation ‘within the community’. This obsession to ‘normalise’ everyone, to ‘be as one group,’ whilst politically popular, is not such a great way of thinking for some individuals. This political jargon masks the money saving determination which is swamping our culture. As you read this, valuable and essential, residential facilities are being forced to close, placing vulnerable people in situations they are ill equipment to cope with, leading to the deterioration of their mental health and quality of life. Frightening and bleak, but no surprise.

For a long time I’ve known the only way to safeguard my son Max’s future is to provide it myself. For Max, I know he would like to live within a vibrant community. He would soon fail to function properly if he was hidden away living alone in a flat, with little opportunity of accessing the outside world, or relying heavily on others to bridge the gap and bring the world to him. I dread to think of the consequences, should such a fragile framework erode or breakdown.

That’s why I’m going to set up a charity. The guiding principle of this charity is to create a home for life. A thriving supportive community where everyone finds personal, independent fulfilment. It’s going to take millions. That’s a massive mountain to climb. I gasp at the magnitude of what I’m planning. It wakes me up at 3am in the morning and the figures spin around in my head and I panic. But then my thoughts quickly turn to my mum as they always do, and I remember her gift and I think, can I do it? Yes, I can.

Girls, girls, girls

First off, can I say that Max has given me specific permission to write this particular blog. In fact it throws up an interesting issue, one which I wrestle with quite regularly. When and where a line is to be drawn regarding private and personal material? How do you guard yourself from writing about stuff that family members would be uncomfortable, nay, outraged, being made public. I feel there is a very clear line. Living with Max is a book written mainly about Max as a baby and a toddler. He loves me writing about him and I feel there is very little in that book that I regret including. One or two things in hindsight probably crossed the line, but I’d like to think I’m older and wiser now.

So when I put pen to paper, with both my sons being in the throes of teenage angst, I constantly have at the back of my mind a ‘privacy’ conscience. It’s not hard to define. Many, many parts of our daily lives I simply cannot write about, it would be a wholehearted betrayal to my children. Of course, I’m occasionally tempted, some very amusing stories breeze through our household and it’s so very difficult to pass over these nuggets when I put pen to paper.

This tale I could easily classify as private. However Max was only too happy for me to blog about it. It’s harmless, so please fear not. As a parent I would not use such a flimsy excuse as Max’s acquiescence to justify my writer’s lust. I would most certainly always save him from himself! That massive ego requires constant surveillance; it needs to be kept under control and just out of harms reach, even from Max!

Max has a great bedroom and, as he’s matured, I’ve been delighted at the pride he takes in keeping it neat and tidy, creatively changing all the furniture around when the mood strikes. It reminds me of my idyllic childhood, when I would enjoy the same obsession of swapping and changing all my room’s contents at the slightest whim. I must confess failed to be anywhere near as tidy as Max. I follow Charlie in that department. My parents soon gave up on chastising me due to my room’s appallingly messy state; I have not come close to such frustrations with Max.

So one evening when I gently knocked upon his bedroom door to pay him a social visit and see what he was up to, I was aghast at the display of female beauties all lined up on his wall. I marvelled at his ingenuity and he faced me with a twinkle in his eye, not a hint of embarrassment. He'd also demonstrated smart computer skills as he must have google imaged each girl in turn (spelling their name correctly) and printed off a selected photo. Perhaps it’s best if you just take a look below.

MAX LEWIS

GIRLS

Is it me or do they all follow a similar type? All beautiful and, let’s be clear, his standards are savagely high. I would be thrilled if I was anyone of those creatures. To be one of the chosen few is praise indeed. For me to be included would be wrong, indeed a tad weird and uncomfortable, I need to acknowledge what all these babes signify for my son – but I couldn’t stop myself.
‘Can’t I be up on your wall, I’ve got long blonde hair?’
‘Mum! You’re too old’.
‘But Cate Blanchette’s there, she’s the same age as me!’ I wailed.
He just looked at me as if I’d lost it. Bright boy my Max.

A Nag

Max thinks I’m a Nag. He just came out with it this morning. Of all the descriptions to label me, I find this one the most annoying, perhaps because I feel it’s unfair. Plus it’s the one thing I strive not to be. Being a ‘Nag’ somehow seems to go with the territory of being a mother. I’d like to treat my children as I would my friends, have a relaxed attitude to the condition of the house, general day-to-day scheduling and organisation. Not worry about such minor details as their general attire, completion of homework, body and hair hygiene and teeth cleaning, but that would undoubtedly result in total carnage. No washing, no sleeping, filthy plates and mugs left to rot everywhere. Total chaos.

General mayhem appears attractive to a teenager in theory. In practice, any ‘fall out’ would be my fault and I would be expected to fork out the cost, be it financial or domestic, to remedy the situation, pronto. So boring, so unfair. I feel it best to provide the odd reminder now and then. I’m wise when to pick my battles and do let a huge amount slide, turning a blind eye on so many occasions I feel I’m positively carefree and relaxed.

Max was talking to Paul about getting ready to go out to East Barnet and get some new shoes. He knows full well that such an outing would be classified as a bonafide trip. Exit out of the house, travelling in the car to a destination of merit, involving other people. That means no wearing of scuzzy trousers. We have this agreement he & I. Max has some distinctly awful trousers which he mistakenly thinks he looks really cool in. He doesn’t. They are a worn out pair of denim leggings in a size 22. They are very comfortable I have no doubt, and there was a time when he was slightly younger and thinner when he looked reasonably ok in them. It was at a time when I struggled to find him any clothes to fit and before I found a great web-site called Premier man which caters for the out of the ordinary male figure like Max.

He mistakenly thinks he looks dashing and cool in them. I understand that they are comfortable and can go along with his misconception to a certain degree, but it’s got to the stage where it’s obscene to let him out of the house in them. Max and I have discussed it and I’ve explained the matter to him in the gentlest way I know how. He gets it. So he can wear them around the house as much as he’d like, but the minute he passes over the threshold of the front door, he has to change into another pair of his many, more suitable trousers.

This morning, once again Max chose to forget this little agreement. I suspect he sometimes gets away with it with Paul. For an easier life I can imagine Paul turning a blind eye and letting the fact that Max looks like an overweight middle aged woman with shocking taste in clothes, pass by. Paul only sees his adorable son; Max has him nicely wrapped around his little finger. Whatever the deal, Max tries it on every time. I keep calm and remain patient with him, but sometimes it’s a struggle. ‘Let him out, however he’s dressed! I hear you cry. What’s the big deal?’ You obviously haven’t seen him.

So I reminded him, much to his disgust, that he needed to change, and that’s when Paul stepped in to defend me. The retort from Max which I found so hard to stomach was,
‘Mum’s such a Nag!’
‘Charming!’ I cried.
‘Right, that’s it. I’m going on strike. You can all take a running jump. No more washing and cleaning, no more digging about trying to discover where all the rubbish you lot can’t find is buried, no more lamb curries, spaghetti bolognaise or macaroni cheese.’
There were cries of indignation from Charlie who hadn’t been involved in our verbal tussle and was clearly worried about the finding thing. Max just laughed,
‘Just kidding Mum!’ Little charmer.
We think he’s flailing behind us sometimes, it’s clear that he struggles to keep up with conversations; his sentence construction is short and limited, his articulation weak. He continually forgets to explain anything he’s talking about by way of an introduction or just a brief pinpoint of the topic, he just plunges straight in. Some of his speech comes out squashed up, like one big word, unpronounced and totally incomprehensible. But occasionally, more often than you’d think, he does impress and surprise us.
Paul and Max eventually said their goodbyes as they made their way to the car, Max looking smart in his denim trousers. Paul said.
‘You gonna drive then Max?’
‘Don’t be ridiculous dad! I haven’t got my driving licence!’

Relative Values

Two big contenders for my 'Bucket list' were to be on Radio Fours Women's Hour, and to appear in The Sunday Times, Relative Values. I am a happy girl, my work is done. Max and I were thrilled to be in Sunday 13th September Relative Values, beautifully written by Beverly D'Silva. Beverly captured Max brilliantly, food, food and food and girls!

In case you missed it , check it out below!

http://women.timesonline.co.uk/tol/life_and_style/women/families/article6829601.ece

Matthew came for tea.

It’s a delightful moment when my son Max, can be seen bursting with excitement. Yesterday made him particularly so. His friend Matthew came to Tea. At the age of sixteen, having friends over to play should be a regular occurrence. Charlie, Max’s fourteeen year old brother, is constantly plotting with his mates, to meet up and have fun. But for Max and Matthew, these delightful liaisons are rare. They have visited each other’s house, perhaps a handful of times in the time that they have been in the same class at their Special Needs School. That gives you an indication of how thrilled Max was about the visit and how potentially stressful it may be for me.

Just arriving home together on the same school bus was almost too much excitement for them both to bear. They gleefully scrambled off the bus, arm in arm, rather like two Labrador puppies. It’s a scene that made my heart leap – for both of them, and me. Matthew does not have DS; he faces the huge challenge of limited sight, as well as Learning Difficulties, not that you’d ever guess. As the two of them crashed into the house, Matthew promptly tripped over my ill-placed coffee table, but completely unperturbed, made a dash for the kitchen, as Max ran at full pelt into the conservatory, giggling and shouting. They managed to lose each other before they’d even begun and I gently guided Matthew to join Max, reuniting them in their playful delight.

Max had a detailed game-plan meticulously mapped out, which he had guided me through, in a very determined manner, earlier in the day.

“First Matthew and me are going upstairs to my bedroom to play SSX Tricky (snow boarding), Pro-evolution soccer and Smack Down VS Raw wrestling on the playstation, and then my friend Matthew and me, we’ll come downstairs for Tea and watch my new wrestling DVD.”

They both share a passion for this large underpants and high drama sport, but thankfully have never allowed it to spill over into real life.

All such plans appeared to momentarily evaporate as they chased one another around the house and I waited for the first crack of bone, or spillage of fraught tears. Gentle persuasion was required once again, as I reminded Max of his game plan.

Charlie is perceptive enough to realise when to stay in the shadows and leave things well alone, but he couldn’t resist trotting down the stairs to take a quick overview of proceedings. He rather likes Matthew who is an adorable boy and I think a small part of Charlie enjoyed watching his brother have fun with a good mate. After establishing that his presence really was not required, he soon slunk off back to his bedroom, with the knowledge that he would not be disturbed, his room being strictly out of bounds.

Max had previously enquired whether he and Matthew could borrow Charlie’s game control so that they might play a dual playstation game. Charlie thoroughly enjoyed the power and with a small show of hammed up magnanimous generosity agreed. Brownie points notched up for later.

It was a joy to watch them gallop up the stairs and I was then able to prepare Tea. Chocolate spread sandwiches for Matthew and mozzarella cheese and garlic sausage sandwiches for Max. I’d been given strict orders by Max on what should be served and I knew better than to deviate. You may baulk at the thought of such poor standards of nutrition, but let me introduce to you the world of Special Needs. Sometimes it is necessary for steadfast rules and comfortable parameters of acceptable behaviour to be flung out the window. At the age of fourteen, I can assure you that Matthew’s mum Monique has spent many sleepless nights, mulling over his diet. Matthew is the youngest of Monique’s four children, so she’s no novice to the game of nutrition. Like me, instead of festering over the inadequacies and the absent of anything green, Monique understands the merits of an eccentric, but acceptable diet, however limited.

The afternoon visit was not bereft of some anxiety, whilst both boys were eager to aspire to the interaction best mates enjoy, their ability to access this, is painfully limited. They need full-time supervision, tactfully handled. I had mixed feelings when a few hours later, Arthur, Matthew’s father, arrived to pick him up. Part of me was relived that the visit had gone smoothly and that we could all breathe a sigh of relief that the event had ended on a high, but part of me was heart broken to watch my son, as the front door slammed and he frowned with disappointment at the departure of a friend.