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.
Monday 26 October 2009
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.
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