Wednesday 10 September 2008

Return from Activenture

I’m not entirely sure why Paul, Charlie & I were all chomping at the bit to pick up Max after his week’s stay at Activenture, the residential holiday camp for young teenagers with special needs. Even Charlie had placed his sibling rivalry to one side and was looking forward to Max’s return. After an initial period of anxiety and concern at the beginning of his week holiday, we all managed to relax and enjoyed the taste of freedom and couldn’t help but feed on the calm. Once we’d got used to the idea that he was away and we’d heard that he was doing brilliantly, we started to embrace new possibilities. We treated ourselves to a few meals out (blessed with the absence of Max’s dominant mood swings and lust to overeat) and Charlie and I had a day cruising along Oxford Street taking our time to explore the delights of the Apple Store and HMV, something that would have been impossible with Max.

He was still constantly in the back of our minds and in a way it was a solid reassurance that he is a strong and vibrant member of our family. I think we all felt that an important piece was missing from our clan – in truth we just missed him. But please- don’t get me wrong! I certainly had mixed feelings as we drove into the Activenture car park to pick him up. I had thrived on the calm, relished the lie-ins and the break from routine. I had been granted a temporary bonus of ‘me’ time which was most welcome.

As soon as we arrived and identified ourselves, Max’s name was called and echoed down the corridors by the many young and enthusiastic carers standing about. It wasn’t long before a tubby little bundle blasted its way out from the common room and into our welcome arms. Max was beaming with pride and joy, clearly delighted to be reunited with us- and we him. We all took deep breaths of pleasure as we had a family hug. I could tell he was proud of his achievements, very pleased to see us but had also grown up a good deal as a result of his experiences in the last week.

We said our goodbyes and thanks to the brilliant staff who after a full-on throttle of a week must have been running on empty and gagging for a quiet moment to themselves to enjoy a swift half, or catch up on depleted sleep. We collected Max’s suitcase (which remarkably had all his belongings still present and intact), diary of the week, medication and surplus (yes! Surplus) pocket money. We were shown the exotic flag his team had made for the theme of the week, the Olympic Games. Max’s team was Ireland; the teenagers had used a bed sheet to create one of several colourful flags resulting in an impressive and colourful display.
He was brimming over with tales of gigantic breakfasts, and camp fires, discos and swimming parties. To be honest we thought he’d get into the car and within minutes be fast asleep with exhaustion – but no! Verbal diarrhea surrounded us for the entire journey. It was wonderful to hear Max excitedly splutter out tale after tale of merriment. It has to be said it was mostly about food, the sausages, waffles, sweeties and toast (I’m certain a green vegetable was consumed at some time) but never-the-less a welcome relief to know that he enjoyed himself and not only that – asked to go back!

I’m not sure that we picked up the right child. We arrived with our grumpy old man, hormonally sullen, stubborn and argumentative and left with a charming polite and calm young teenager. I still can’t quite believe that Max’s new found independence and maturity did not evaporate within the first twenty four hours, the charm stuck. A new smiley boy came into our home, a delight and surprise.
Believe me; we’ve already booked for him to go back!

Sunday 10 August 2008

Summer Camp

Sometimes in the dead of night Paul and I can have a little visitor. Max has been known to silently linger by the bed. Initially such visits were alarming, now we are used to them, gently guiding him back to bed with a kiss. A similar visit occurred last night, only Max appeared in my dreams not by my bedside. I woke full of anxiety, and, in what seems to be a normal state of affairs these days, was propped up in bed at 3am sipping a mug of tea. I couldn’t get back to sleep because this week, Max is at a residential summer camp. A new, challenging experience for all of us, he’s been on a mini taster weekend with IPOP, but never a whole seven days!
The camp, Activenture is run with special needs in mind and comes highly recommended. We dropped Max off on Sunday, suitcase brimming with all the essentials and more. We were greeted with warmth and enthusiasm; young vibrant people were buzzing everywhere – full of fun, which is what Max is all about.
The large rambling house is set in deep beautiful countryside and is crammed with well worn corridors and busy communal rooms. The atmosphere was calm and positive and a relaxed, lived-in feel extended from the walls, helping to reassure us. Even so, Max was naturally nervous and buried his head into Paul’s chest looking for a hug and familiarity. Just a momentary blip for him because, out of all of us, Max had the desire to enjoy this opportunity and grasp all it had to offer.

We were shown his room which he was to share with his mate Raffy (a nifty bit of co-ordination between me and Raffy’s mum Christa) and Ben their designated care worker. Ben instantly reminded me of my eighteen year old nephew Fraser, thoughtful, kind and calm, so my nerves were momentarily soothed and we all started to feel a bit more positive.
Mark, the Team Leader escorted us to meet ‘The Boss’ Di Churchill, who immediately struck me as an individual following a vocation rather than a money making exercise. This I found impressive and reassuring.

Our goodbyes were all that remained and Max’s was swift.
‘OK, bye then.’
A quick kiss and that was it.

Paul, Charlie and I stood in the car park the rain lashing down in sheets staring at one another like lost puppies.
‘What time can we pick him up?’ said Paul.
We felt so lost it was frankly ridiculous, and we fretted about our concerns for Ben, spending the whole week with our son and his friend with no chance of a night off. Tough, as we knew only too well. But we took solace in a pot of tea and a homemade cake at a local teashop in nearby Amersham. Then we went to the pub.

Paul was in a dreadful pickle for most of the week and even Charlie confessed to being worried and missing Max. I knew that he had every chance of having a great time and I felt confident he was in safe hands. But only time would tell and I worried about the long duration. Max is terribly vulnerable, he would struggle to fathom how long a week was, and therefore how long it was until he came home. He may have identical thought processes to you and I, but he finds assimilating such thoughts into speech a real challenge. So by Wednesday, even though we had had a message to say he’d settled in well, I couldn’t contain myself and called Di on her mobile.
‘Oh, Hi Di!' It’s Sandy Lewis here, Max Lewis’s mum, sorry to bother you.’
‘No problem Sandy.’
‘I just wanted to know how Max was doing?’
‘Brilliant, just brilliant.’
‘Oh good! Give him a kiss from us!’
The call got disconnected, but I’d heard all I needed. Something inside me let go and I felt enormously tired. I went and put the kettle on, letting out a sigh, embracing the remainder of this week’s much needed respite as properly intended. And I let Max get on with thoroughly enjoying himself.

Sunday 13 July 2008

Max's story

Max and I have been asked by a National Children's Charity to support them by speaking to the media. They have asked Max to share his inspiring story and include it in a major piece of work they are embarking on this autumn. So I have had my first taste of ghost writing and here is his story!
*********
When you look at me I immediately appear different. That can be very hard to cope with. My name is Max Lewis and I’m fifteen. I love to watch wrestling, go to the cinema and play with my cat Chutney; I also have Down’s syndrome. Oh, and I’m a BIG Dr Who fan. I don’t know what it’s like not to have Down’s syndrome because it’s something I was born with (I have an extra chromosome), so I guess you could say I don’t know any different. But it can be very difficult having to face every day with a disability. People immediately think I’m stupid and that I can’t do anything and they sometimes stare at me too. That makes me feel worthless, it also makes me angry.

I have low muscle tone, so some tasks many people take for granted, I find hard, like walking long distances, going up and down stairs and holding a pen. I love to chat and have a lot to say, but sometimes it’s hard to speak clearly and I struggle to make myself understood. I can get quite confused too, especially if I’m told a lot of things, I find it difficult to remember them all. I also have a hole in my heart. All the challenges I face can make me very unhappy and frustrated.

But I’m always quick to smile and like to look for the good things in life. I love being with people, and enjoying myself, I have loads of friends and I’m a great guy. Most of all, I love to act. Since I was seven, I’ve gone to the Chickenshed Theatre Group every week. Because people got to know that I loved acting I was asked by Richard Eyre to audition to be in a film called Notes on a Scandal starring Judi Dench, Bill Nighy and Cate Blanchett. I was so nervous and worried about it, but I really wanted to be in the film so I did my very best and showed Richard how much I could act – and I got the part! I was thrilled.

I had such fun during the filming; I even had my own trailer! It was very exciting, but it was hard work and I got quite tired. I enjoyed messing about with Bill Nighy who was very funny and I thought Cate Blanchett was beautiful. Judi Dench was always kind to me and we have a dance together in the film. Being in a Hollywood movie gave me confidence and I feel much better about myself. How many people can say they’ve been in a movie? My mum has also written a book about me called Living with Max. It made me think that maybe I’m ok and that I can have goals and do things. Since then I’ve had a great time, nothing as exciting as being in a film, but everyday I put my heart into whatever I’m doing, life is for living!
Written for Max by his mum – Sandy Lewis.

Tuesday 6 May 2008

Living with Max

Great news! Living with Max is now published! So for anyone who is curious to have a read, you can click on the link to http://www.rbooks.co.uk/ and order a copy, plus there is the bonus of a discount! You can get 30% off plus free P&P. Just enter MAX in the promotional code box at the checkout.