London to Brighton……we did it!

All the training paid off

Brighton boys 350x263On 22 June, Peter, Tom and I rode our bikes from Certitude’s Balham office to Brighton. We’re all keen cyclists and have been training hard since March, so we were confident of making it, but that didn’t stop the nerves from creeping in on the morning! We set off at 9.30am under gorgeous, deep blue skies and got lost almost immediately. The route itself was pretty hilly and the constant rise and fall meant that keeping our rhythm was tough. With enough glucose to down a small elephant and some rousing speeches from Tom, we got to the top of Ditchling Beacon, a dizzying 750ft above sea level! We could see the sea sparkling 5 miles away and as we rode through the poppy fields of the South Downs, we knew we’d done it, all downhill from here. Tired and sore, but grinning from ear to ear and miraculously un-sunburnt, we arrived about 3.30pm. We were met by staff and customers from the Activity and Resource Centre (ARC) as well as Peter’s sister– a lovely end to an amazing day. To date we’ve raised over £420 towards accessible bikes for the ARC in Greenford.

The cycle ride was very hard, but it was well worth it. I didn’t like cycling up hills or even walking, especially up the Ditchling Beacon – it is miles! Thing I did like was meeting my sister at the end in Brighton, but unfortunately I was so tired so I didn’t speak much and now I am aching all over!

Peter

Community Fundraising

I’ve just moved from the Corporate Services Team to overseeing a brand new initiative at Certitude. Community Fundraising is about getting support from people outside the organisation for specific projects we’re undertaking. It’s not just about money, it could be people donating items or volunteering their time to help us develop things like sensory gardens. A lot of companies like supermarkets and banks like to give back to their local community and I’m going to be working to get them on board. I’m already working with staff at Grange Close and Crofton Road on bringing in some new equipment for the people they support and will be in touch with our services in the coming months about community fundraising in your area.

It’s also about events. We’ve had loads of sponsored stuff happening recently – the good folk at Barclays in Richmond are riding to Paris and back for us on stationery bikes, and have raised almost £4,000 to date! Farida Mallick recently ran the Ramathon Half Marathon in Derby and yours truly rode to Brighton!

It’s such an exciting opportunity for us and I’ve got loads of ideas for things I’d like to do, but I’d much rather it came from you guys. If you’ve got an idea for a project you’d like support with, would like to get sponsorship for something or just want to get involved, it’s be great the hear from you. Drop me an e-mail on sam.mason@certitude.org.uk

Sam Mason, Community Fundraiser

 

 

Living with my brother’s autism: Laura’s story

Laura and her brother, Tom, who is autistic. 'He is the best brother for me he can be'
Laura and her brother, Tom, who is autistic. ‘He is the best brother for me he can be’

‘Many people across Certitude have personal experience of disabilities within their own family. As a Deputy Manager at Certitude, I always try to see things from the family’s point of view and ensure they are actively involved. And I personally know how important that is. Outside of work I’m ‘Sister Laura’ to Tom, who is autistic.

When I was growing up, I wasn’t jealous of the normal things my friends were – new clothes or flashy holidays. For me, if I’m truly honest, I was jealous of the sibling rivalry between my girl-friends and their brothers. I wanted a ‘normal’ brother that I could scheme with against my parents, who I could blame when I broke something, or someone I could hit back when rough and tumble went too far.

I remember being a tot watching Sesame Street and shouting at Tom for him to come see the Cookie monster, or for him to join in number games with the counting. Whenever I looked over Tom was there in body only. His mind for many years was taken over by sitting, standing or twirling while staring up at a light bulb. It used to make me feel so dizzy just watching him spin and spin. But he never fell over, not once.

Tom didn’t start speaking until much later in life, but his formative years were far from silent. Tom hummed; not a jaunty tune and not in short bursts, but constantly. In all fairness it didn’t bother me until I started having sleepovers. Trying to watch a film with my friends suddenly became a strenuous task while Tom hmm’d his way around the light bulbs. My friends were too polite to ever complain but I quickly noticed we increasingly held film nights at their houses and not mine. Should that bother me? Probably not, but as a nine year old, I wanted to feel part of it, and host an event.

I don’t remember a moment when I realised Tom was different, I just grew up knowing that he wasn’t like other brothers. Thinking back now though I can see Tom was the best brother for me he could be. You’ve never had a proper cuddle unless you’ve had a freely-given ‘Tom cuddle’ – he pours love and comfort into every pore. It’s beautiful and it’s an amazing marker of how far he’s come.

As I share my story I want you all to know how much I love my brother – he is the best. I wouldn’t change him in any way at all. However this is my honest view, and I’m hoping it will give an insight to those who don’t understand how disability affects everyone else around.’

 

 

 

Training Blog of Misery!

If you train, your body adapts and you’re better next time. This is true of cycling, as it is of all physical sports – do it more and you’ll get better. That’s the plan, anyway.

Cycling’s also a very psychological sport. If you allow doubt to creep into to your head, it quickly moves down and wraps around your legs, suffocating them. Riding a bike for 50 miles is tough on your legs, but it’s up *here* the battle rages. This is why we train, to quiet the voices telling you it’s too far, too steep and too hard.

Peter had shared some concerns with me during the week: it’s far, really far. And that hill at the end is very big indeed. “Will I make it?” Riding from A-B (rather than back to A) raises that possibility, you can not make it. And there’s no safety net. This is why we train.

Tonight is our last training ride: we’re planning 33 hard, hilly miles in the early evening sunshine. The cars on Balham High Road had been winking the sun’s rays back at me all day and I couldn’t wait to get out there and catch up with Peter about his latest toys. It was a hot one, the air con had been humming noisily above me from about midday. Just before any ride, my thoughts turn to food. We were going to burn about 800 calories tonight and I realised my meal deal from the 24hr garage probably wasn’t going to cut it. I shove some porridge in the microwave and put some carbohydrate powder in my water. Yum.

We take a new route to Richmond Park, the massive semi-wild area now well established as our training ground in the lead up to the big day. Through Wandsworth Common and past the personal trainers, down through Earlsfield, my hood – as much as anywhere with a Carluccio’s and a running club can be anyone’s ‘hood’.

I love the little details you get from riding, rather than driving or tubing it. It’s cold in winter, very cold, but summer’s worth it. When it’s warm you can smell the River Wandle along the whole of Garratt Lane; a little bit of nature rubbing up against the fumes and car horns as we sit at the lights.

We rise through Southfields and descend off Putney Heath down into Roehampton Village. When you cycle, London is a relief map. It’s divided into flat sections, climbs and descents, not stations and stops. Wandsworth’s a broken bowl, Clapham’s a wobbly table. Crystal Palace? We don’t go to Crystal Palace.

The warm afternoon air seems to lift us clean off the road as we sweep down through the Alton Estate. Any cinematic vibes disappear quickly as the smell from the stables at the bottom of the hill fills our noses. Stable hands must pray for winter.

Peter - taking a breather
Peter – taking a breather

Into the park and the road rises on Sawyer’s Hill, we’re tapping out a great tempo as the road undulates for the first half a mile, dithering before making its mind up and rising to the Star and Garter and Cancellara corner. We stop for a swig of water and ride on to Pembroke Lodge, using every little bit of the 20mph speed limit. The pace slows noticeably as we hit Dark Hill and I look back to see Peter off his bike by the side of the road.

“You okay?”

“Yeah, just shattered!”

“When did you last eat?”

“About midday”

The words hang in the air as Peter takes in an energy gel and chases it with most of his water, wincing at the lactic acid in his legs or perhaps because the once cold liquid is now luke warm. The heat returns when we’re not moving and we realise how much we’re sweating now the wind isn’t drying it out as we move through the air. A drip falls off the end of my nose. Did we go too fast up Sawyer’s? Ack, maybe. Back on our bikes, we finish the climb gingerly, but it’s clear something is wrong. We finish our lap and take stock.

It’s clear our 3 laps isn’t going to happen. We know time to Brighton is running out, and with this in mind we ride towards the Ballet School in the middle of the park and back to where we started. We stand in a silence broken only by our breaths and consider our options as the sweat returns to sting our eyes. Go home? Push on? Another half lap? Peter has another gel, half of it ends up on his handlebars.

The mood is lifted by a stag leaping inelegantly into a brook by the side of the road before reappearing, its antlers draped with pond weed.

This is a sudden loss of form and we’re both pretty shocked. Brighton is a month away this Thursday and we’ve only managed 20 miles. Brighton’s 50. We managed another 7 miles last time and it was well within us, so what’s changed?

We do another half lap and ride home. Quieter than before, the road feels like sand underneath us. This can’t be our last training ride. We can’t finish on this note and we don’t know if the legs are there yet. Another two rides should do it, but our confidence is bruised and we need a boost.

We go again.

Sam Mason, Cyclist Extraordinaire

 

 

Accessing support and caring for my son: A mother’s story

Amir learns to prepare a meal with his support worker
Amir learns to prepare a meal with his support worker

Elsie Mahdi is primary carer to her son, Amir, who has severe learning disabilities. When she was diagnosed with breast cancer she felt at a loss to know how to cope with the demands of looking after Amir and dealing with her illness.

”With no responsible immediate family to support my son, I have always been his primary carer. It is a heavy load and responsibility as he has severe learning difficulties, very special needs, including a combination of hyperactivity and autism.

When I was diagnosed with Stage 4 Breast Cancer in 2011, and my son had to be left at home for nine months without any support whatsoever, we were at a loss on how to handle the situation. Certitude’s Harrow Outreach team decided to act. They acted in response to the mounting stress placed on me to survive and look after my son. The team came to visit me one morning and immediately understood the gravity of our circumstances. I cannot tell you how grateful I was (and still am) for this timely intervention.

At first, times were very challenging. My son started to become very frustrated and increasingly difficult to handle, and it was hard to find the right support for his needs. In spite of all of this, my commitment as his primary carer never waned. I’ve also been blessed to have a receptive team of support workers who were open to suggestions and creative options to help him flourish and learn the art of living in this world. Finally, after a lot of hardship and many months of sleepless nights to explore creative outlets for his unique energy and disability, something clicked into place in 2013.

‘I have seen him develop in ways I never thought possible’

Amir developing his artistic skills with his support worker
Amir developing his artistic skills with his support worker

My experience as a teacher for people with special needs, as well as Certitude’s willingness to support my son to lead a meaningful and useful life, manifested a plan of action that we could all work with, including my son. I feel that through our collective action, and deep understanding of his unique disability, we found ways to maximise his support and channel it to the benefit of all. In short, he became a happier human being, and his support workers became better at what they do.

He practices art with his support worker, which my son is very proud of, including T-Shirts and pillowcases. He is even learning how to buy material for his art and use his own money to pay. It has helped immensely with his motor skills; he is now able to sit for longer periods of time without getting distressed.

He has started to learn how to count and work with money so he can prepare for his activities (and finally accept that when I give him two 50p they make a pound!) He is able to prepare simple meals in the kitchen; sit and share meals without constantly leaving the table so that one day he might be able to sit in a café and have a meal. He also has tremendous fun being supported him in various fun activities, yoga, reiki, swimming, computing, going to the gym, zumba, cycling and clubbing. Thanks to amazing support from his carers!

‘For the first time in over 30 years, I feel we have a great team of support workers in place that are doing a wonderful job with my son. They actually accept him for who he is, and like him, which has made a huge difference in his development.’

He is finally, after 35 years, improving in every aspect of his life and while he will never be able to work, the people who care for him enrich his world. These people work in harmony to help him grow.

Every little bit of help I receive from trusted support workers is the highest blessing I can receive. I don’t wish for anything for myself, just for my son to find happiness and begin to navigate this world with a bit more knowledge and skill for his own sake, for his own future.”

Providing family support

Elsie and Amir benefited from the Harrow Outreach service as part of Certitude’s Family Support. Working with families and teams, they support the development of positive relationships with families, and offer families additional support in times of need or crisis.

Lorraine Jarman is Certitude’s Family Support Manager. ”Family members have the knowledge and expertise that they have acquired during a lifetime of knowing and loving the person”, she says. ”This must be valued and utilised effectively if we are to get the support right for their loved one.”

 

 

Offering new ways to communicate

Speech therapist gains valuable experience volunteering with Certitude

intensive interaction turqVolunteering at Certitude has given a newly-qualified speech therapist valuable experience which has helped her career, while the people Certitude supports are benefitting from her commitment, expertise and compassion.

When we were looking for someone to work alongside our Intensive Interaction specialist in London, City University’s speech therapy department seemed like a good place to start. Kate had recently completed her course and came forward; she was keen to try out her new skills.

Kate began working with a group of older people who have a learning disability living in Certitude-supported housing in Streatham. She started just over a year ago and has been offering her services around twice a month ever since. The time Kate had given our Intensive Interaction specialist, Lucy, has enabled us to achieve much more than if Lucy had been working on her own. Using a range of Intensive Interaction techniques Lucy and Kate have been able to reach out to all the individuals in the house, building their confidence and offering them new ways to communicate. Thanks to Kate’s support each person now has a communication profile which states their communication needs, how best to communicate with them and what they might mean by particular actions.

Kate says she enjoys the freedom volunteering has given her to do so much hands-on work, without having to be too involved in the paperwork:

“Volunteering has been a great experience for me. Lucy has taught me so much, especially about the importance of process – how to make things happen (not just wanting to make something happen). I have witnessed how people making small everyday changes, and keeping to them, can really make a huge difference in their lives. I am looking forward to taking this knowledge with me into my new role as a full-time speech therapist.”

We wish Kate every success with her new job and are delighted that she still plans to volunteer with Certitude in her spare time.

If you are interested in volunteering with Certitude, we provide a diverse range of volunteering opportunities to people of all skill levels and experience, and we pride ourselves on offering an inclusive, stimulating and supportive environment. You can contact us directly at volunteering@certitude.org.uk or click here for more information

 

An amazing evening!

Friday 16 May 2014 is a date that I shall never forget. The National Learning Disabilities Awards Gala dinner marks one of the most memorable events in my life.

We had such a great night!
We had such a great night!

I truly know what happiness, pride and an amazing sense of honour means to me since winning The National Support Worker Award on that unforgettable evening.

Since my nomination I have often imagined how I would feel and what I would say if it was my name that was actually announced as the winner. Well to be honest my imagination seriously let me down and didn’t prepare me for the huge shock I felt when I heard my name. It was an incredible feeling as the room erupted into a roar of cheers and applause.

It is truly an honour to be recognised for what you do and I would like to pay tribute to Certitude and say thank you to the people we support and everyone who works tirelessly to create our triumphant organisation. I would not have been able to achieve this award without your support and believe that this is recognition for each and every one of us.

Lewis Wallis

A further article on the National Learning Disability Awards Ceremony can be read here.

Well done to Lewis and Me!!!

John with his award
John with his award

I travelled up to Birmingham on Friday with my sister Patricia – we had spent the morning getting ready – having my haircut and a proper shave at the barbers. I got a new jacket and bow tie and by the time we reached our hotel we were SO excited.

We started off the evening toasting Lewis and I with a bottle of prosecco before heading off to the Gala. It was great to catch up with old friends on the night – I met Caireen who used to work for Ealing Mencap, she was up for an award too.

Proud sister Patricia!
Proud sister Patricia!

The celebrity presenter Jeff Brazier hosted the night – it was good to hear about his brother who has cerebral palsy.

The night was fantastic we were at Edgbaston cricket ground and there were so many people there – about 500 I think. We had a three course meal and it was great to watch short films about all the nominees – I saw myself on the big screen!

We all had a great time!
We all had a great time!

Being a runner up on the night was as good as winning. I know my family, my friends and my colleagues are all so proud of me and all I have achieved by being a trainer with Treat Me Right!

Seeing Lewis win was brilliant – I really liked getting to know him over the weekend and I can see why he won!

John Keaveny

Treat Me Right! trainer

 

So proud!

Hi, I’m Lewis Wallis, Acting Shared Lives Manager at Certitude. I have recently been presented with an amazing opportunity that I want to share with you. Not in my wildest dreams did I ever imagine that I would be nominated for the National Learning Disability Awards – in the Best Support Worker Category, and then to discover that not only have I made it through to the final, but I am to attend the Awards Ceremony in Birmingham on 16 May!! Well to be honest the whole experience has been quite surreal and it has involved me travelling up to Birmingham to attend an interview led by the judging panel!!

I really can’t begin to explain the overwhelming feeling of excitement, nerves and honour that I felt when I was told of my successful nomination and my feet haven’t quite touched the ground. It somehow seems ‘bizarre’ to be given this nomination in recognition of my role in supporting people, when it’s something that is so natural to me. I am totally passionate about my job which has enabled me to work alongside people who are as equally committed as I am and I thoroughly enjoy this gratifying profession that we have chosen to work in.

One of the questions that I have been asked is “Why do I think that I was nominated and what makes me good at my Job”? My honest answer is that I believe in what I do and take great pride in our given responsibility in empowering the individuals that we work with to gain important skills for life and fulfil their potential.

With just a few days to go before the night of the Awards Ceremony I am experiencing mixed feelings of anticipation, anxiety and aspiration hoping to be triumphant and win this award in honour of the unique service that each and every one of us in Certitude delivers on a daily basis for the people that make it all worth while.

Lewis Wallis

Lewis’s nomination was based on the excellent support he has shown and continues to show in all areas of his work.  A brief summary of his nomination is below: 

Lewis Wallis is being nominated for his outstanding approach to supporting people with learning disabilities. We receive numerous compliments about Lewis by families, carers, colleagues and members of the general public around his persistent excellence and his willingness to go above and beyond the call of duty.

For example, earlier this year he supported Ernie, who was devastated by the sudden death of his twin sister. Lewis volunteered to accompany him to the funeral in Liverpool when no one from his regular support team was available.

Lewis took a day of his own time to get to know Ernie before the funeral and planned the trip to make it as positive an experience as possible under the circumstances. At the railway station Ernie and Lewis spotted Liverpool footballer, Michael Owen, and, as Ernie is a big fan, they approached him for an autograph. Not only did he sign Ernie’s hat and pose for photographs, Michael Owen stayed and chatted for almost half an hour while Ernie and Lewis waited for a taxi. Ernie said that even though it was a sad event, the activity which Lewis had planned around the funeral had made him happy. The pair discovered they have similar interests like swimming, football and bowling and now Ernie has asked that Lewis support him on holiday.

Lewis is an excellent support worker who always works at a very high level and is very person centred in his approach to his work. He has built excellent relationships with the people he supports and is an asset to the organisation.

 

London to Brighton: Our first training ride

After a day spent running around the office, the colour of my face varying between under ripe strawberry and isthereadoctoronboard beetroot, I remembered Tom and I had scheduled our first ride together for that evening. Good thinking! It was a beautiful afternoon and when he stuck his head round my office door at 4.30 to ask if I fancied setting off a bit early, I pulled my head out from underneath a dusty desk and nearly took his arm off.

We were on a mission to reccy Richmond Park before our London to Brighton training rides start in April.

I love showing off Richmond Park. It’s a gorgeous space with about 300 wild deer and more and more parakeets every year. They’re beautiful birds – flashes of brilliant green darting through the trees that line the road. Rumour has it Jimi Hendrix released them when he was staying in Richmond with the Stones. I’ve also heard they belonged to a guy that collected rare birds. He was caught in bed with another woman and his wife released them into the wild. I like the first story better.

Why Richmond Park? Wildlife aside, it’s a great test of a riders’ abilities. There’s two distinct climbs: Sawyer’s Hill to Richmond and Dark Hill, just after Kingston Gate. Both are equally testing, but in very different ways. We entered the park and started to climb the former, a mile and a half drag from Roehampton to Richmond. We pass a group of about 100 Fallow deer to our left, rutting out of season (don’t spose they have calendars), and parakeets in the woods to the right of the road. I realise that we’ve seen all the animals I promised Tom we would see during our ride here and we’ve only been in the park a minute or two.

Looking right, you can see the city in the distance. The Shard and BT Tower dance in the distance as the day’s heat is lost into the sky. Definitely colder now, not sure Tom would agree as we hit the top of Sawyer’s Hill.

Left at the roundabout. Past the spot where Fabian Cancellara – a man so fast, people actually thought he had a motor hidden in his bike – fell and broke his collarbone in the Olympic road race. Steady…

St Paul’s Cathedral, 10 miles East, comes into view. There’s a line of sight dating back to 1710 which means it’s illegal to build anything above a certain height between this area of the park and the cathedral – it restricted some recent building work near Liverpool Street station.

Towards Kingston now, the views to our right out across Hounslow are something else. Suburban London stretching out West, Twickenham Stadium stands proudly in the middle of it, planes rise and fall from Heathrow. The road dips, then rises sharply to the left. Gravel crunches underneath our tyres as we bank into the turn.

Dark Hill. We climb out of saddle as the gradient hits 10%. The road flattens out, stutters through the woods, rises again. Shut up, legs.

Both major hills now done, we ride towards Roehampton and the end of our lap of the park, down the swooping descent of Broomfield Hill and past a group of Red deer on our left. Postcard stuff. We speed away. Over the roundabout, now pretty rapid, we ride hard to Roehampton Gate, legs burning as we get low on our bikes to stay out of the wind now whistling past our ears.

‘You’re doing well to keep up!’

‘WHAT?!’

‘Never mind’

The only thing that keeps the deer off the road are the cars and the gates were soon shutting to traffic. Some of the deer look pretty pointy, and the big ones are like horses. We take the hint and call it a day. 17 miles after work, not bad. Tom’s got another 6 after I peel off in Earlsfield, I lend him my lights.

Lovely ride. Really looking forward to showing the park off to the rest of the L2B guys next month!

 

Steven Mayers, our New SOVA Trainer, tells his story

Co-Production in training

Steven Mayers
Steven Mayers

Please meet Steven Mayers. Steven is young, tall, dark haired and funny…he also has a learning disability …is a travel buddy at Certitude …..and is our new SOVA* trainer. Caroline Dyment, Learning and Development Manager for Certitude, talks with Steven, and they share their story about working together……..

Steven: “My training story starts last year when I went to a SOVA training session run by Mark Wallis. I hadn’t realised how widespread in the world abuse was. I have been bullied in the past because of my learning disability so this really made me wake up about how many people are abused.

At the end of the session I went to Mark and asked about how to get into training as it seems so enjoyable and useful….”

Caroline: “At the same time I was faced with a problem…..One of Certitude’s golden threads is co-production. How could I and other trainers recruit and involve people with lived experience in training?

I contacted the SOVA trainers to ask if they knew of anyone who had a story to share in a SOVA session. Abuse is a delicate subject so I was nervous about finding the right person. Mark remembered Steven and so introduced us.

After some coaching and mentoring from me, Mark and another SOVA trainer Karen Carr, Steven is now sharing his story on SOVA courses and helping co-facilitate the whole day.”

Steven: “It means a lot to share my experience as I supressed my story inside. Now I feel that if I tell my story it will have maximum impact on people. That feels good as it affects people and helps them share their stories too. I feel much more confident in public speaking and I’m looking forward to being an accredited SOVA trainer. Caroline’s also got me involved in revising the SOVA course along with the other trainers in February.”

Caroline: “Delegates on Steven’s training have been impressed. These are exciting times for everyone involved. I am looking forward to getting more people with lived experience involved in training events either in person or in other ways.”

Lewis Wallis, Delegate on SOVA, Shared Lives Co-ordinator and Michael Rosen Award Winner: “I am shocked that it was Steven’s first time sharing his story on the course because he seems so relaxed. It really made you realise how people who have experienced abuse and bullying must feel. It helped other people open up about their experiences too. It was great”.

*Safeguarding of Vulnerable Adults