The weather has been extraordinary. As such, life in GB has come to a standstill. It’s all about snow and plenty of it. Although it can be lethal, it is beautiful and in my two teenage boys eyes, the stuff of magic. Both Max and Charlie were ecstatic that both their schools were forced to shut for not one, but two days. You have to admit in a Child’s eye that’s pure heaven. Ten inches of snow & no school!
The joy for me soon passed. Yes, I did delight in a long walk with Charlie down at ‘the swamp’ (local brook running for half a mile surrounded by mini woodland, a surprise oasis in North London). And it was sweet to see the boys crashing about in the garden, flinging snowballs at one another and squealing with anguish and delight. But then I got frustrated. We couldn’t get out because the snow turned to ice and I didn’t fancy a trip to A& E. The mail, the refuse collection, the recycling collection, all stopped, I started to go stir crazy. But not my boys. They relished their time at home, being more than happy to ‘chill’ and do absolutely nothing, popping in and out of their own little worlds for food and drink.
Day three arrived and the schools re-opened. Charlie, although reluctant, returned to his school with good grace, Max on the other hand was having none of it. I could tell he was disgusted that his school was open for business, plus I’d heard him muttering in the toilet that perhaps a new arrival of deep snow in the night might do the trick and force his school to remain closed. This had not transpired and as his bus arrived to collect him bang on time, Max left with a face full of thunder.
Just a few hours later we got a call from Max’s school. Max had diarrhoea and would like to come home. A rather graphic conversation then took place; I shan’t go into too much detail here, suffice to say it involved conditions of unflushed toilets and changes of clothing. Max can be highly creative and is pretty savvy when it comes to convincing anyone of his fake ill health. His professional and impressive teachers can end up bearing the brunt of it; even so, it pays to be deeply sceptical to the point of blunt disbelief. That takes quite a bit of determined, perhaps brave grit; Paul and I wobble at the first call of doubt. Neither of us wants to appear to be cold uncaring, almost cruel parents, but Max is a magnificent actor.
We stuck to our guns and arranged to pick him up and take him as normal to his regular pre-arranged literacy lesson with Julia. Unfortunate timing as it was going to prove a challenge to get him back to school. When I picked him up he was cheerful enough, if in an extraordinarily tight pair of trousers. (Max’s XL waist can lead to limited resources when a spare item of clothing is required.) Still, nothing was said and a clean set of clothes was left with his classroom assistant. Thinking on my feet and desperately trying to be one step ahead of my son I welcomed him back to the car after his lesson and presented him with a tricky decision. I suggested that if his stomach pains (putting aside the tight trousers) were still a problem, we should return home, missing afternoon school. But that would mean no lunch, perhaps a dry cracker, but nothing more. Or, if he felt his stomach was in any way better, we could return to school, change his trousers and he could eat his lunch.
Max was not remotely amused. We suffered a silent five minutes. It was all I could do to remain quiet; I literally had hold of my tongue between my teeth. Eventually, with very little grace, Max decided to return to school. He ate his sandwiches while parked outside the school and for an awful moment, after he’d polished them off, I thought he was going to renege on our deal. But, true to his word he finished his lunch, got out the car, and poignantly slammed the door. I got no ‘goodbye’ and he deliberately ignored my wave as he begrudgingly buzzed himself into the school via the electronic gates. He does enjoy school – he’d just rather be at home. In some ways I felt I’d done the right thing. I’d shown him that he couldn’t pull the wool over my eyes and that he had to go to school, everyday. Even if he experienced an explosional bowel movement (his low muscle tone, makes it not uncommon for him). Coming home when he felt like it couldn’t be an option. But I also had a vague uneasiness about the whole thing. Say I was wrong?
Wednesday, 23 December 2009
Friday, 20 November 2009
Cleaning the cars
I asked Charlie if he’d like to clean the inside of both cars for a tenner.
‘Err. No thanks,’ he replied.
I asked Max if he’s like to clean the inside of both cars with me for a fiver.
‘Err. Ok,’ he replied.
It was some days before the timing was right, but eventually Max declared he was,
‘Going to clean the cars now.’
He had just come back from Lords with Paul and Charlie. (Purely for the egg mayonnaise sandwiches) and was head to foot in ‘posh’ gear.
‘Ok lovely, best get changed though’.
‘Oooh, no! Mum!’
I gave it a minute; Max is never good at getting his head around things at speed. His irritation at me suggesting that he change was a perfect example of how he sees clearly that the idea is sound, but can’t be bothered and thinks if he just stalls, something will change. Plus his thought processes are just never immediate, he needs time, sometimes a great deal of it. In fairness to him, given time, he manages to make the leap from where he was, and get up to speed with the correct way of thinking and move on. He soon managed it now.
Five minutes later he arrived in the kitchen dressed to clean.
I decided I’d play a minor role in the cleaning and directed Max to the cleaning cupboard for the cloths, furniture polish and glass cleaner, and to the floor of the pantry for the Hoover. He enthusiastically collected all the items and headed for the front door. I felt my initial sense of trepidation float away, as I searched for the extension lead for the Hoover.
By the time I got outside Max had begun. He was furiously spraying and polishing a side mirror.
‘Inside the car Babe. Remember what I said?’
‘Oh, mum! - Headlights?’
‘Sweetheart just inside today, you need to clean all the mirrors and windows and the plastic bits, inside.’ I gave it a minute.
Max stormed off to get the car keys from inside the house, but emerged with a smile back on his lovely face. He clicked the remote, which he loves to do, and the car beeped open. He then opened the door, threw the keys inside a shut the door again.
‘Can you put the keys in your pocket Max ?’
‘No.’
‘It’s sensible to put the keys in your pocket because if you leave the keys inside the car, it can automatically lock them in.’
‘Oh.’
Max opened the door, reached for the keys and put them in his pocket - a small battle won. (Although I did get a filthy look.)
He really was doing a good job and attacking it with gusto. I thought I’d make a start with the Hoover; I was bound to get shouted at if Max thought I was slacking.
I bent down into the front of the car and was overwhelmed with furniture polish fumes. A great deal of spraying was going on. Max had emptied over half of the can onto the back leather seats and was furiously wiping with his cloth.
‘Excellent Max, not quite so much spray though eh?’
‘Oh, Mum!’
Now was the time for me to realise it was in my best interest to just keep quiet and let him get on with it, his way. And not a bad way too, he chattered to himself as he briskly went over all the seats and plastic and then moved on to the windows and glass. The rear-view mirror was dribbling glass cleaning fluid, but I bit my tongue and went to fetch a big black bag for the rubbish.
When I arrived back, Max was in the boot in fits of giggles.
‘Mum, I got locked in the boot!’
I let him out and he happily trotted around to the front where he finished off his polishing. For some ten minutes we beavered away side-by-side, Max barking out the odd command or complaining that I was in his way, but overall, a harmonious, joint effort. I really felt that Max had accomplished all I had asked of him when he shouted,
‘Mum, I’ve finished!’
‘Brilliant mate, lets lock up this car and move on to Dad’s.’
I thought he was going to throw a wobbly, but no, he looked over at Paul’s car and said,
‘Ok.’
I was impressed. What a little worker, such enthusiasm too. We both moved on to the next car after Max expertly locked my car up and replaced the keys in his pocket. As if by magic the keys to Paul’s car were produced from his other pocket and he unlocked it, raring to go.
Same drill as before and no real slacking either. I made sure I gave him lots of encouragement and kept hinting that we were over half way through the task and really nearly finished now. He plodded on with his polishing and spraying. The furniture can was completely empty by now, which was perhaps a good job, those fumes! Still, he soldiered on with just a very wet cloth and did a magnificent job.
We had it cracked in no time and Max was positively thrilled with himself. Paul was ordered down from his office to survey his sparkly clean car and gave the suitably required praise and appreciation.
I just handed over my fiver.
‘Err. No thanks,’ he replied.
I asked Max if he’s like to clean the inside of both cars with me for a fiver.
‘Err. Ok,’ he replied.
It was some days before the timing was right, but eventually Max declared he was,
‘Going to clean the cars now.’
He had just come back from Lords with Paul and Charlie. (Purely for the egg mayonnaise sandwiches) and was head to foot in ‘posh’ gear.
‘Ok lovely, best get changed though’.
‘Oooh, no! Mum!’
I gave it a minute; Max is never good at getting his head around things at speed. His irritation at me suggesting that he change was a perfect example of how he sees clearly that the idea is sound, but can’t be bothered and thinks if he just stalls, something will change. Plus his thought processes are just never immediate, he needs time, sometimes a great deal of it. In fairness to him, given time, he manages to make the leap from where he was, and get up to speed with the correct way of thinking and move on. He soon managed it now.
Five minutes later he arrived in the kitchen dressed to clean.
I decided I’d play a minor role in the cleaning and directed Max to the cleaning cupboard for the cloths, furniture polish and glass cleaner, and to the floor of the pantry for the Hoover. He enthusiastically collected all the items and headed for the front door. I felt my initial sense of trepidation float away, as I searched for the extension lead for the Hoover.
By the time I got outside Max had begun. He was furiously spraying and polishing a side mirror.
‘Inside the car Babe. Remember what I said?’
‘Oh, mum! - Headlights?’
‘Sweetheart just inside today, you need to clean all the mirrors and windows and the plastic bits, inside.’ I gave it a minute.
Max stormed off to get the car keys from inside the house, but emerged with a smile back on his lovely face. He clicked the remote, which he loves to do, and the car beeped open. He then opened the door, threw the keys inside a shut the door again.
‘Can you put the keys in your pocket Max ?’
‘No.’
‘It’s sensible to put the keys in your pocket because if you leave the keys inside the car, it can automatically lock them in.’
‘Oh.’
Max opened the door, reached for the keys and put them in his pocket - a small battle won. (Although I did get a filthy look.)
He really was doing a good job and attacking it with gusto. I thought I’d make a start with the Hoover; I was bound to get shouted at if Max thought I was slacking.
I bent down into the front of the car and was overwhelmed with furniture polish fumes. A great deal of spraying was going on. Max had emptied over half of the can onto the back leather seats and was furiously wiping with his cloth.
‘Excellent Max, not quite so much spray though eh?’
‘Oh, Mum!’
Now was the time for me to realise it was in my best interest to just keep quiet and let him get on with it, his way. And not a bad way too, he chattered to himself as he briskly went over all the seats and plastic and then moved on to the windows and glass. The rear-view mirror was dribbling glass cleaning fluid, but I bit my tongue and went to fetch a big black bag for the rubbish.
When I arrived back, Max was in the boot in fits of giggles.
‘Mum, I got locked in the boot!’
I let him out and he happily trotted around to the front where he finished off his polishing. For some ten minutes we beavered away side-by-side, Max barking out the odd command or complaining that I was in his way, but overall, a harmonious, joint effort. I really felt that Max had accomplished all I had asked of him when he shouted,
‘Mum, I’ve finished!’
‘Brilliant mate, lets lock up this car and move on to Dad’s.’
I thought he was going to throw a wobbly, but no, he looked over at Paul’s car and said,
‘Ok.’
I was impressed. What a little worker, such enthusiasm too. We both moved on to the next car after Max expertly locked my car up and replaced the keys in his pocket. As if by magic the keys to Paul’s car were produced from his other pocket and he unlocked it, raring to go.
Same drill as before and no real slacking either. I made sure I gave him lots of encouragement and kept hinting that we were over half way through the task and really nearly finished now. He plodded on with his polishing and spraying. The furniture can was completely empty by now, which was perhaps a good job, those fumes! Still, he soldiered on with just a very wet cloth and did a magnificent job.
We had it cracked in no time and Max was positively thrilled with himself. Paul was ordered down from his office to survey his sparkly clean car and gave the suitably required praise and appreciation.
I just handed over my fiver.
Wednesday, 4 November 2009
Food & Wrestling
There are two things of great, but equal importance to Max, food and wrestling. Food just tips it. He has even confused the merits of religion, with the merits of food. Not particularly hard to do when you think about it. All religions seem to gather people together with the allure of a feast!
A few weeks ago Max came home from school declaring that he was going to fast the next day because of his religion. To be clear, as a family we are not religious, very welcoming to the beliefs of others, and like Max, rather enjoy all the religious festivals involving food, but are not participants. Paul was born Jewish but has gone off the rails since then – big time, for one thing, he’s married to me. I am not Jewish, but we are surrounded by people we love, who are. Many celebrate the festivals and all the delicious food this entails and Max embraces this marathon of eating wholeheartedly. I applaud such dedication, but I was unaware of any festival coming up on the horizon.
So I was puzzled, as well as astonished that Max proposed to fast. With a little detective work I figured he must be talking about Ramadan. One or two of the boys (there are no girls in Max’s class) could possibly be Muslim, so I pointed out that it was probably a Muslim, not Jewish festival, but Max was having none of it. He was determined to fast for the day and that was that. I can only imagine that there had been a discussion of some great culinary reward.
The following morning I chose to ignore our conversation of the previous evening and I placed Max’s beloved bread and butter in front of him, to be met with his usual gleeful greeting. So I’ll admit I was surprised, but made no comment, when after he’d finished his breakfast Max made a big fuss about replacing the contents of his lunchbox into the fridge, suggesting I was a very silly mum for forgetting that he was fasting for the day.
Carol and Pauline the driver and escort of his bus to school, fell about laughing when Max declared he was fasting for the day. His reputation as a foodie is huge, but he was not amused at their jesting.
Later in the day I arrived at Max’s school to take him to his tutor Julia. I was immediately greeted with,
‘Where’s my lunch?’
‘Oh, Max. I thought you were fasting my love.’
Wicked I know, but I just couldn’t resist it. And Max’s reply was an unimpressed grunt. Still, it was rather amusing and I suppressed a smirk as I handed him his packed lunch. He was soon munching on a favourite egg mayonnaise sandwich. Perhaps the path of dedicated religion is not for Max after all.
Wrestling does come a very close second in importance for Max. He adores the whole drama and festival of the sport. My Grandmother was the same. I still remember her raising her fist at the telly in triumphant adulation as Big Daddy was pummelled into submission. She too loved the drama and took great delight in verbalising her thoughts for all to hear. I just saw old men with rotund tummies wearing big black pants. And that whole counting thing..... What is that?
Max has some wrestling idols. On Saturday he took a computer printout of John Cena (seriously important wrestler) to the barbers and demanded to be able to walk out looking like his hero. Very smart it looked too. I’m a little concerned about the tattoos these beefy giants rejoice in littering on their skin, (although I am attracted to such graffiti in a weird kind of way) but that’s a bridge we will have to cross when we come to it. For now, I’m happy to waive goodbye to Max and Paul as they pop to Brent Cross shopping mall in order to cruise along the isle in Top Man looking for ‘bling’.
It’s a passion he shares with his mate Robbie. Thank goodness neither of them have been drawn to ‘acting out’ any matches. They both prefer to get right up close to the television screen and be drawn into the pantomime. I’ve noticed that a great deal of interest has developed towards the female wrestlers and all their beauty. Suddenly Max and Robbie are keen to watch the girls strut their funky stuff as well as the men. The outfits are astonishing and born from such ingenuity!
They relish the full glamour of WWE, RAW and Smack Down and save up for DVDs and Wii games, proudly wear t-shirts with their idols full frontal and get over excited when something new is due to hit the shops. But they are also just as happy to buy tickets for the local wrestling matches held at the church hall up the road and refereed by the vicar, Father Benjamin.
Whatever Max’s passions are, you can guarantee that he will pursue and enjoy them with gusto. He is completely nonjudgmental, embracing all that life throws at him, very sure of what he wants and determined to get it. Compromise is not a word he is comfortable with, but he soon moves on if it’s made clear to him that something is impossible or not appropriate. He is a joy to watch when he’s having fun. And it’s not because fun passes his way infrequently, on the contrary, but because he demonstrates a joy of life that needs to be rejoiced in all of us – we just need reminding and thankfully, I have Max to do that for me.
A few weeks ago Max came home from school declaring that he was going to fast the next day because of his religion. To be clear, as a family we are not religious, very welcoming to the beliefs of others, and like Max, rather enjoy all the religious festivals involving food, but are not participants. Paul was born Jewish but has gone off the rails since then – big time, for one thing, he’s married to me. I am not Jewish, but we are surrounded by people we love, who are. Many celebrate the festivals and all the delicious food this entails and Max embraces this marathon of eating wholeheartedly. I applaud such dedication, but I was unaware of any festival coming up on the horizon.
So I was puzzled, as well as astonished that Max proposed to fast. With a little detective work I figured he must be talking about Ramadan. One or two of the boys (there are no girls in Max’s class) could possibly be Muslim, so I pointed out that it was probably a Muslim, not Jewish festival, but Max was having none of it. He was determined to fast for the day and that was that. I can only imagine that there had been a discussion of some great culinary reward.
The following morning I chose to ignore our conversation of the previous evening and I placed Max’s beloved bread and butter in front of him, to be met with his usual gleeful greeting. So I’ll admit I was surprised, but made no comment, when after he’d finished his breakfast Max made a big fuss about replacing the contents of his lunchbox into the fridge, suggesting I was a very silly mum for forgetting that he was fasting for the day.
Carol and Pauline the driver and escort of his bus to school, fell about laughing when Max declared he was fasting for the day. His reputation as a foodie is huge, but he was not amused at their jesting.
Later in the day I arrived at Max’s school to take him to his tutor Julia. I was immediately greeted with,
‘Where’s my lunch?’
‘Oh, Max. I thought you were fasting my love.’
Wicked I know, but I just couldn’t resist it. And Max’s reply was an unimpressed grunt. Still, it was rather amusing and I suppressed a smirk as I handed him his packed lunch. He was soon munching on a favourite egg mayonnaise sandwich. Perhaps the path of dedicated religion is not for Max after all.
Wrestling does come a very close second in importance for Max. He adores the whole drama and festival of the sport. My Grandmother was the same. I still remember her raising her fist at the telly in triumphant adulation as Big Daddy was pummelled into submission. She too loved the drama and took great delight in verbalising her thoughts for all to hear. I just saw old men with rotund tummies wearing big black pants. And that whole counting thing..... What is that?
Max has some wrestling idols. On Saturday he took a computer printout of John Cena (seriously important wrestler) to the barbers and demanded to be able to walk out looking like his hero. Very smart it looked too. I’m a little concerned about the tattoos these beefy giants rejoice in littering on their skin, (although I am attracted to such graffiti in a weird kind of way) but that’s a bridge we will have to cross when we come to it. For now, I’m happy to waive goodbye to Max and Paul as they pop to Brent Cross shopping mall in order to cruise along the isle in Top Man looking for ‘bling’.
It’s a passion he shares with his mate Robbie. Thank goodness neither of them have been drawn to ‘acting out’ any matches. They both prefer to get right up close to the television screen and be drawn into the pantomime. I’ve noticed that a great deal of interest has developed towards the female wrestlers and all their beauty. Suddenly Max and Robbie are keen to watch the girls strut their funky stuff as well as the men. The outfits are astonishing and born from such ingenuity!
They relish the full glamour of WWE, RAW and Smack Down and save up for DVDs and Wii games, proudly wear t-shirts with their idols full frontal and get over excited when something new is due to hit the shops. But they are also just as happy to buy tickets for the local wrestling matches held at the church hall up the road and refereed by the vicar, Father Benjamin.
Whatever Max’s passions are, you can guarantee that he will pursue and enjoy them with gusto. He is completely nonjudgmental, embracing all that life throws at him, very sure of what he wants and determined to get it. Compromise is not a word he is comfortable with, but he soon moves on if it’s made clear to him that something is impossible or not appropriate. He is a joy to watch when he’s having fun. And it’s not because fun passes his way infrequently, on the contrary, but because he demonstrates a joy of life that needs to be rejoiced in all of us – we just need reminding and thankfully, I have Max to do that for me.
Monday, 26 October 2009
Hormonal teenagers
I am not a victim, I am a survivor, so is my son Max. Even though he has Down’s syndrome. You’d think that would slow him down, somehow sour his life - not a bit of it. His vibrant character has carried him through some challenging stages of his life. Passing through adolescence is one of them.
Being sixteen is a tricky age for any young man although Max welcomes many of the experiences, like growing facial hair “Like my Dad,” which he painstakingly shaves off with his mini electric razor, or the allure of women, particularly blondes. As one of five grandsons, I remember my mother remarking on several occasions that she would doubt Max to be the last of her grandsons to be granted his first kiss. She was right, he’s well on his way to developing an expertise in snogging. He’s also had a fair number of girlfriends, racking up quite a respectable portfolio of beauties. Some he’s been keener on than others, remarking to me,
“Mum, I like Polly, but I’m waiting to find the right girlfriend.”
Rather taken aback, I enquired what he felt the “right” girlfriend to be. His reply was as always, direct and truthful.
“She’s got to have long blonde hair like you mum and she must be funny, love wrestling, music, going to the theatre and be able to sing.” No pressure!
Until Max’s dream woman arrives I have no worries, he’s cut from the same cloth as those who believe “if you’re not with the one you love, honey, love the one you’re with.” Any passing young lady who may wish to brush up on her kissing technique need look no further than Max; he will be a most willing and enthusiastic partner.
But some of Max’s hormonal changes are not particularly welcomed by any of us. Apart from farting in public, purely for his own amusement, he’s taken to being grumpy and massively uncooperative for no good reason – that we, at least, can fathom. Within the four walls of our home, whilst troublesome, such moods can be contained, and are best ignored if I’m honest, but in the outside world, some colourful issues can arise. Also the world outside sometimes comes to visit us and even the protective walls of our home are no help.
Max’s longsuffering brother Charlie can get it in the neck too. He's fourteen now, but carries the weight of the world on far senior shoulders. He’s a terrific brother, but even Charlie cannot resist giving in to the temptation for point scoring and one-up-man-ship, so commonly seen in siblings.
When Max is strutting about the house, ipod clamped to his ears, dancing and singing at the top of his lungs, completely naked, Charlie can be forgiven for muttering under his breath,
“For God’s sake put some clothes on!”
Or Charlie’s parental instincts may kick in, as Max seizes an opportunity to swipe an unauthorized biscuit, knowing he will not be discovered, by remarking,
“You shouldn’t be doing that.”
Perfectly excusable, but such comments push all of Max’s buttons and drive him to forbidden expletives, and the odd, uncharacteristic wallop.
For many years now, we’ve discovered the best way to get any kind of hold on what Max is truly feeling, is to listen to him while he’s on the toilet. Thinking he’s alone and enjoying the privacy, he often chats away to himself. Wrong perhaps to intrude, but valuable information can often be gleaned from what falls from his lips. Just like on Sunday evening,
“I’m fed up with this family. I’m going to get a new family. I’m cross with Dad, he’s always telling me off and it’s that Charlie’s fault. He gets me into trouble. He winds me up! Mum’s horrible too.”
Such truths can often be the valuable bridge we need to pass over turbulent times. I’m clinging to the knowledge that it’s most probably his hormones and that my gorgeous, but sometimes obnoxious teenager will blossom into the handsome, considerate swan I know he is. But if I foolishly relax, naively assuming calmer waters have arrived, I must remind myself, that Max is not unique in his hormonal outbursts and I would do well to steel myself, because he has a younger brother.
Being sixteen is a tricky age for any young man although Max welcomes many of the experiences, like growing facial hair “Like my Dad,” which he painstakingly shaves off with his mini electric razor, or the allure of women, particularly blondes. As one of five grandsons, I remember my mother remarking on several occasions that she would doubt Max to be the last of her grandsons to be granted his first kiss. She was right, he’s well on his way to developing an expertise in snogging. He’s also had a fair number of girlfriends, racking up quite a respectable portfolio of beauties. Some he’s been keener on than others, remarking to me,
“Mum, I like Polly, but I’m waiting to find the right girlfriend.”
Rather taken aback, I enquired what he felt the “right” girlfriend to be. His reply was as always, direct and truthful.
“She’s got to have long blonde hair like you mum and she must be funny, love wrestling, music, going to the theatre and be able to sing.” No pressure!
Until Max’s dream woman arrives I have no worries, he’s cut from the same cloth as those who believe “if you’re not with the one you love, honey, love the one you’re with.” Any passing young lady who may wish to brush up on her kissing technique need look no further than Max; he will be a most willing and enthusiastic partner.
But some of Max’s hormonal changes are not particularly welcomed by any of us. Apart from farting in public, purely for his own amusement, he’s taken to being grumpy and massively uncooperative for no good reason – that we, at least, can fathom. Within the four walls of our home, whilst troublesome, such moods can be contained, and are best ignored if I’m honest, but in the outside world, some colourful issues can arise. Also the world outside sometimes comes to visit us and even the protective walls of our home are no help.
Max’s longsuffering brother Charlie can get it in the neck too. He's fourteen now, but carries the weight of the world on far senior shoulders. He’s a terrific brother, but even Charlie cannot resist giving in to the temptation for point scoring and one-up-man-ship, so commonly seen in siblings.
When Max is strutting about the house, ipod clamped to his ears, dancing and singing at the top of his lungs, completely naked, Charlie can be forgiven for muttering under his breath,
“For God’s sake put some clothes on!”
Or Charlie’s parental instincts may kick in, as Max seizes an opportunity to swipe an unauthorized biscuit, knowing he will not be discovered, by remarking,
“You shouldn’t be doing that.”
Perfectly excusable, but such comments push all of Max’s buttons and drive him to forbidden expletives, and the odd, uncharacteristic wallop.
For many years now, we’ve discovered the best way to get any kind of hold on what Max is truly feeling, is to listen to him while he’s on the toilet. Thinking he’s alone and enjoying the privacy, he often chats away to himself. Wrong perhaps to intrude, but valuable information can often be gleaned from what falls from his lips. Just like on Sunday evening,
“I’m fed up with this family. I’m going to get a new family. I’m cross with Dad, he’s always telling me off and it’s that Charlie’s fault. He gets me into trouble. He winds me up! Mum’s horrible too.”
Such truths can often be the valuable bridge we need to pass over turbulent times. I’m clinging to the knowledge that it’s most probably his hormones and that my gorgeous, but sometimes obnoxious teenager will blossom into the handsome, considerate swan I know he is. But if I foolishly relax, naively assuming calmer waters have arrived, I must remind myself, that Max is not unique in his hormonal outbursts and I would do well to steel myself, because he has a younger brother.
Wednesday, 7 October 2009
Youth Club
If it’s Friday night, then it’s Youth Club night, one of the highlights of Max’s week. Raffy’s mum Christa and I, have organised with a few other like-minded mums, a regular Youth Club for our teenage children with DS. Just a handful of young people, who are keen to get together, happy to share the hosting in each other’s homes. When it comes to your turn, you and your teenager are in charge, you provide the food and your child enjoys the privilege of being top dog and master of entertainment.
Last Friday was our turn at being host. Max is always thrilled to be centre of attention, and so emotions ran high. From the minute I heard him banging on the front door (yes, we do have a bell!) after being dropped home by the driver and escort, (Carol and Pauline) from his Special Needs School Bus, the party had begun.
Max had given me strict orders not to begin any preparations until he had arrived home from school, and then I met the full wrath of his bossy nature. We cleared the lounge, made sandwiches, microwaved popcorn and organised the music.
Max is big on the electric carpet sweeper, and so enthusiastically bashed his way from room to room, taking out various pot plants and terrifying the cats. For all his zest for domestic order, he can get momentarily waylaid after buttering just one bread roll. His concentration will flit from one exciting task to the next, but all he really wants is for his friends to arrive.
He’s been known to get so carried away with the delights of preparation, that he forgets to change out of his school uniform. When realisation strikes home or his oversight is gently pointed out to him, he’s known to shriek,
“Oh my God!” dashing up the stairs to his room, quickly but methodically selecting his clothes, careful to make sure they pass the “cool” test.
Last Friday was no different, by the time the guests had arrived, Max was at fever pitch and it was a joy to bask in his excitement. I watched with pleasure as all the eager faces greeted each other with wide grins and big hugs.
“Hello Max! My lovely friend, hello!”
“Hello Raffy, hello, hello, come in my friends!”
They are such a delight, Raffy, Annalie, Nikita, Melissa and Hannah, like-minded teenagers all with DS. They benefit from chilling out among friends, seeking the perks of adolescence that perhaps others would take for granted. The flirting and the arguing, the falling in and out of love and the incredible joy of knowing you belong.
After the initial rapturous welcome they all sat down and stared at one another, not quite sure what to do next. It’s a tricky time for the host. As parents, we’re all in agreement that the right move is to stay out of the way with minimal involvement. Thus allowing these young people to organise themselves and learn the skills of socialising. But that can be hard. It can take some time before they gather together and focus on an activity. Painfully slow and unsure of how to behave, it’s sometimes agony to just watch.
Charlie, Max’s fourteen year old younger brother, couldn’t resist checking out proceedings, establishing once and for all that he really was not required. I know he’s rather fond of all Max’s friends and couldn’t help but absorb the enthusiastic and cheery atmosphere. Putting sibling rivalry aside, Charlie seemed genuinely pleased for Max and happy for his brother’s shot at teenage socialising. Once he was convinced that they could survive without his help, he slunk off, back up to his room where he knew he would be left undisturbed.
They all bring very different personalities to the table. In fact the only binding trait they do share, is DS. It was a slightly tense time for me as I sat out of the way in the kitchen, pretending to read the paper. But over the few years that the Youth Club has been running, I’ve seen a vast improvement in their skills. Like any other group of people, they’ve taken time to find their feet. There are leaders and there are followers, there are the loud bossy members (Max!) and there are the quiet withdrawn members. All I could hear from the kitchen was the delightful laughter. For me, and I suspect for them, it’s the sound of pure heaven.
Last Friday was our turn at being host. Max is always thrilled to be centre of attention, and so emotions ran high. From the minute I heard him banging on the front door (yes, we do have a bell!) after being dropped home by the driver and escort, (Carol and Pauline) from his Special Needs School Bus, the party had begun.
Max had given me strict orders not to begin any preparations until he had arrived home from school, and then I met the full wrath of his bossy nature. We cleared the lounge, made sandwiches, microwaved popcorn and organised the music.
Max is big on the electric carpet sweeper, and so enthusiastically bashed his way from room to room, taking out various pot plants and terrifying the cats. For all his zest for domestic order, he can get momentarily waylaid after buttering just one bread roll. His concentration will flit from one exciting task to the next, but all he really wants is for his friends to arrive.
He’s been known to get so carried away with the delights of preparation, that he forgets to change out of his school uniform. When realisation strikes home or his oversight is gently pointed out to him, he’s known to shriek,
“Oh my God!” dashing up the stairs to his room, quickly but methodically selecting his clothes, careful to make sure they pass the “cool” test.
Last Friday was no different, by the time the guests had arrived, Max was at fever pitch and it was a joy to bask in his excitement. I watched with pleasure as all the eager faces greeted each other with wide grins and big hugs.
“Hello Max! My lovely friend, hello!”
“Hello Raffy, hello, hello, come in my friends!”
They are such a delight, Raffy, Annalie, Nikita, Melissa and Hannah, like-minded teenagers all with DS. They benefit from chilling out among friends, seeking the perks of adolescence that perhaps others would take for granted. The flirting and the arguing, the falling in and out of love and the incredible joy of knowing you belong.
After the initial rapturous welcome they all sat down and stared at one another, not quite sure what to do next. It’s a tricky time for the host. As parents, we’re all in agreement that the right move is to stay out of the way with minimal involvement. Thus allowing these young people to organise themselves and learn the skills of socialising. But that can be hard. It can take some time before they gather together and focus on an activity. Painfully slow and unsure of how to behave, it’s sometimes agony to just watch.
Charlie, Max’s fourteen year old younger brother, couldn’t resist checking out proceedings, establishing once and for all that he really was not required. I know he’s rather fond of all Max’s friends and couldn’t help but absorb the enthusiastic and cheery atmosphere. Putting sibling rivalry aside, Charlie seemed genuinely pleased for Max and happy for his brother’s shot at teenage socialising. Once he was convinced that they could survive without his help, he slunk off, back up to his room where he knew he would be left undisturbed.
They all bring very different personalities to the table. In fact the only binding trait they do share, is DS. It was a slightly tense time for me as I sat out of the way in the kitchen, pretending to read the paper. But over the few years that the Youth Club has been running, I’ve seen a vast improvement in their skills. Like any other group of people, they’ve taken time to find their feet. There are leaders and there are followers, there are the loud bossy members (Max!) and there are the quiet withdrawn members. All I could hear from the kitchen was the delightful laughter. For me, and I suspect for them, it’s the sound of pure heaven.
Sunday, 27 September 2009
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.
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.
Sunday, 20 September 2009
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.
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.
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.
Subscribe to:
Posts (Atom)
