Terry with Prince Harry

“Cycling gives me independence and a sense of freedom” – Terry’s story

Guest post from Terry who attends Bikeworks’ All Ability Cycling. He lives in the London Borough of Tower Hamlets, has an acquired brain injury and an acquired physical disability. Terry loves cycling and likes the whole world to know it!

The past

I have cycled since I was a boy. When I was six years old, I was involved in a road traffic accident when I was riding my bike. As a result, I have an acquired brain injury, difficulty using my left hand and walking is quite hard.

I first went to an All Ability Cycling club in 2006 when Bikeworks ran a club from the Urban Adventure Base in Mile End Park. I rode a tricycle then, which I was given when I was at school.

I didn’t go to Bikeworks for a while due to health problems but I went into Bikeworks’ shop on Cambridge Heath Road when I was on a ride with my support worker, Nick. Jolyon from Bikeworks told me about Special Olympics cycling, which appealed to me because I like to ride fast! Knowing that I was going to start cycling competitively motivated me to relearn how to ride a two wheeler. My mum helped me with this and I much prefer riding on two wheels.

Nick and Terry posing in the park with a bike
Nick and Terry

 

The present

Since March 2014, I’ve been attending the Bikeworks Special Olympics cycling programme at the Velopark road circuit in Queen Elizabeth Olympic Park on a fortnightly basis. I’m currently the fastest cyclist there and my best lap time of the one-mile circuit so far is 4min 13sec.

Since returning to cycling regularly I’ve lost 10kg in seven months and feel a lot healthier. I have some liver problems, which my doctor recently told me are getting much better now that I am exercising more and my diet is better.

Aside from cycling with Bikeworks, I also cycle at least twice a week with Nick. We cycle on the roads and canals and ride all over London. Two weeks ago we went to London Zoo via Angel. I find it difficult to walk long distances so cycling gives me independence and a sense of freedom. If I didn’t have a bike, I wouldn’t go anywhere because of my foot. Now I am more free.

The future

I have a couple of modest goals for the future – I am aiming for a knighthood…and an OBE! To achieve these honours I would like to be recognised for getting loads of people involved in cycling. I have already started by getting Nick to cycle with me! I also have a friend who lives near Victoria Park and has a disability. I’d like to coach him on cycling and bring him to the All Ability Club. One day I want to cycle around the world and raise money for charity, with Nick in tow…

Get involved

I want more people to be able to cycle. Cycling has really helped me and I love it. Anyone who needs some support to cycle at first can go to Bikeworks All Ability Cycling clubs and there are also opportunities for volunteering and employment. More people cycling at Bikeworks’ clubs means that there are more people for me to beat!

Find out more about All Ability Cycling.

Bikeworks are looking for a Volunteer and Training Coordinator to work on the programme. For more information phone Jolyon on 020 8980 7998 or email Jolyon.Whaymand@bikeworks.org.uk.

Toddler in a wheelchair

How to talk to kids about disability (and Voldemort)

Would we reprimand our child for pointing out a woman who has blonde hair? Probably not, because it’s OK to have blonde hair. So what are we telling our kids when we reprimand them for pointing out a person using a wheelchair or a person who is blind, asks Mary Evelyn Smith?

When my son was a baby, I took him to our local toy store. The place was almost empty, but as we rounded the corner, we bumped into a woman and her husband. They leaned over and looked at my son as we passed. He giggled. They waved. They said how cute he was. It was nice.

But near the end of the aisle, we passed the woman’s son — an eight-year-old boy. The kid glanced over at my stroller and I saw a look of confusion flit across his face. His jaw dropped. He looked perplexed and the slightest bit nervous. He called to his mother standing a few feet away, pointed at my son and said with curiosity, “What IS that?”

Toddler in a wheelchairBecause my son has spina bifida and, at the time, he breathed with the help of a trach (which, if you’re not used to seeing it, can be a bit surprising).

I looked behind me and watched his mother’s eyes widen with embarrassment as her face turned stop-sign red. She glared at her son, took him by the arm and mouthed angrily into his ear: “Don’t. Say. Anything.” And I felt terrible — like my little boy was shameful somehow. Because he has a disability, and disabilities should not be spoken of.

… kind of like Voldemort

Can we talk about Voldemort for a second? He is one bad dude. He’s so freaking scary that if you even speak his name, all manner of horrors could rain down upon you. The kids at Hogwarts knew better than to mess with that can of worms (except for Harry Potter, since he’s brave and also a hero, no biggie) because, just like we teach our kids in the real world, it’s best not to talk about bad things.

Bad things should be kept quiet

But disability isn’t bad. And I’m sure that the woman at the store didn’t think my son was a menace of Voldemort proportions. Still, pointing out our differences makes us uncomfortable. We don’t know what we’re allowed or not allowed to say about disability. So we prefer to say nothing.

The problem is that our children are still learning the rules. They see difference in the world and they ask questions. They see difference and they speak it. They see difference and they point their fingers. All we can do is react. And our reactions send a message to our children. Our reactions tell them how to feel about the differences they see.

Here’s my advice if your child is the finger pointer:

  • Stay calm. I know it’s embarrassing. I know it’s awkward. But seeing you stressed over the mention of someone’s disability will make your child feel that they’ve done something bad by bringing it up. Know that it’s normal for kids to ask questions or even point and stare a bit. Parents like me are used to it.
  • Be open to discussion. No need to shush or remove your child from the situation. Try to calmly answer their questions and remember that “I don’t know” is an acceptable answer. When the boy at the toy store asked his mother what was going on with my son, I wish she would have felt comfortable saying, “Would you mind if my son asked you a question about your baby?” Like all parents, people who have children with special needs like talking about their kids, and most of us enjoy raising awareness too.
  • Lead by example. Do your best to use positive language when talking to your kids about differences — and not just disability. Try to avoid words that imply disability is sad or bad like “poor thing” or “something is wrong with him.” If your child says something hurtful like, “That person is funny looking,” you can talk to them about using polite words when they see someone who is different.

If your child is being pointed at

  • Stay calm. Remember that your reaction sends a message too. Little good will come from lashing out or reprimanding a stranger’s child. The last thing we want is for children to stay away from our kids for fear of saying or doing the wrong thing.
  • Be open to discussion. Answer questions if you feel comfortable. If not, redirect the conversation to what your children might have in common: “Do you like video games? Daniel Tiger? My son does too!”
  • Consider the intentions more than the words. Most of us have been in the special needs community long enough to know what words are OK and what words not OK to use when discussing disability. Remember that most people do not live in the same world of disability parenting, but their intentions are good.
  • Try to remember what YOU were like before your child was diagnosed. Try to remember how long it took you to learn and adjust. Try to assume good intentions. I dislike when someone asks “What’s wrong with your son?” or calls him a “poor thing,” but shutting them down will only end what could have been an eye-opening conversation.

Above all, remember that we’re in this together. Whether your child has a disability or your child does not, we’ve got to give each other some grace, take a deep breath and let go of our fears.

Be brave. Be a hero.

What would Harry Potter do?

Mary's son, with the text: Expelliarmus!

Mary Evelyn Smith is a children’s librarian, writer and blogger at What do you do dear? 

Discuss this topic on the online community

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It took me 30 years to make myself heard – Mandy’s story

Guest post by Mandy, 49, from Hereford. Mandy used to live in a care home and spent years fighting for the right to live independently. For the first 30 years of Mandy’s life, staff caring for her thought she had no awareness of the outside world. When someone finally realised how much she understood, she started taking control of her life. 

I was born in Warwickshire in 1965. I have cerebral palsy and use a motorised wheelchair, as well as a communication device which I operate with the back of my hand.

I did not get this device until I was 30 years old. Until then, I had no way of communicating except with my eyes and facial expressions.

Mandy at home, with photos of friends and family on the wall behind her
Mandy at home, with photos of friends and family on the wall behind her

Decisions made for me

I went to boarding school and then to a residential college in Devon. This would not have been my first choice, but the decision was made by the teachers from the school. I would much rather have lived closer to my family, but I was not given this option.

Then I moved into a residential home in Essex, 150 miles from home. It was a big home with 30 people in it, and only five support workers.

I used to get very angry and frustrated, because no one ever asked me what I wanted.

The staff and other professionals did not realise how much I understood, so they did not spend any time with me and I was often not allowed to make my own decisions.

It left me wondering – why? I could see other people making their own decisions. Yet I could not, just because people didn’t take the time to get to know me and understand my needs and wishes.

Finally getting a voice

In the late 1980s I moved to Hereford to live in a shared house run by Scope. I had my own room, but shared the house with a number of other people whom I had not chosen to live with.

A support worker noticed how much I understood, and helped me get a communication device. I mastered its use quite quickly, and could communicate properly for what felt like the first time.

This is where I began to feel a turning point in my life. Imagine what it was like – having a voice after all those years.

I contacted social workers, and with the help of my family and key worker, I started to make my case for living in my own home.

I had to work very hard at making people realise that it would be possible – that I would be able to cope with a more independent lifestyle where I could be in charge of my own life.

Mandy in her garden in Hereford
Mandy in her garden in Hereford

My own home

I got involved with Hereford Services for Independent Living (SIL). With their help and that of my social worker, Maggie, I claimed the allowances I needed to help pay for rent and 24-hour care.

I was very fortunate to get a fully accessible bungalow, and in August 2001, I moved into my own home. Now I really began to feel my confidence grow, and I gained more strength to make my own decisions and speak out. I built up a team of personal assistants by advertising, recruiting and interviewing. SIL supports me to arrange my finances as an employer and helps me sort out relief cover.

My support workers work a 24-hour shift, sleeping in my spare room overnight. This means I can organise my day however I choose without having to work around shift changeovers.

I recently completed a college course, and have also taken a creative writing class and written poetry. I have an active social life and often visit friends.

At this stage of my life, I feel more confident, decisive and stronger than I ever have before.

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I’m running the world’s only wheelchair spin class – Kris’s story

Guest post from Kris Saunders-Stowe, a fitness instructor working with both disabled and non-disabled people. In Scope’s latest film, he explains why we need to change the way we think about disability and fitness.

DSC_0184My first response to the idea of using a wheelchair started with ‘f’ and ended with ‘off’! I was an active person, and never saw myself as a wheelchair user.

But my joint problems, which started 14 years ago, progressively got worse and I was doing less and less. Over time – and no word of a lie – I became a hermit. Going out became more and more difficult, and eventually I just thought, ‘What’s the point of going anywhere?’ I never went out apart from to the doctor and the supermarket.

‘It was so liberating’

Then some friends of mine were going to Alton Towers, and the only way I could realistically join them was by borrowing a wheelchair.

And that was it. It was so liberating. Suddenly I was back to normal. It was a completely different perspective – I was free to move about as quickly or slowly as I wanted, and I could do so much more.

That was two years ago, and I’ve never looked back since. My personality has come back, and I take things in my stride rather than letting them get on top of me. In actual fact, I think I’ve got a better life than I’ve had in probably 20 years.

Getting into fitness

I’ve always worked in horticulture and retail – never in sports or fitness at all. But then in 2012, I was in Cardiff and the Australian Paralympic team were staying in my hotel! We got chatting, and I followed the team during the Games and got quite engrossed.

DSC_0518I took up wheelchair basketball and we didn’t have a proper coach, so I had a go at standing in myself. I loved it, and I started thinking: ‘Could I do this for a job?’

Within a couple of months, I had started the qualifications I needed to become a fitness instructor.

While I was training, I realised that there aren’t enough fitness programmes properly tailored for disabled people. The few classes I could find on YouTube were extremely slow and sedentary. The instructor training manuals would say, ‘You may need to adapt this routine for disabled people…’ – but what does that mean? They didn’t say. It was a token gesture.

Wheely Good Fitness

So I decided to set up my own business, Wheely Good Fitness, running classes adapted for physically disabled people. That doesn’t mean they’re gentle or easy – they are pretty intense!

I currently run a variety of classes, including what is quite possibly the only wheelchair spin class in the world. We have a huge range of members, from people with slight mobility problems to those with very complex needs.

It’s incredibly rewarding for me because I can see the change in people. Within a few weeks they’re sitting up straighter in their wheelchairs, their flexibility increases, their confidence grows.

Suzy (right), one of our most committed members, recently pushed herself round a shopping centre for the first time in years. The change in her has been unbelievable.

Changing attitudes

I’m currently writing a set of qualifications for instructors, explaining how to create fitness regimes suitable for disabled people. My hope is that these will be accredited by awarding body Skills Active, which means the qualification will be available for instructors across the country to take.

I am so surprised that no one has looked at wheelchair-based fitness from a different perspective.

People seem to have got used to seeing disabled people as delicate and fragile, rather than as somebody who’s just got a different way of doing things. Being disabled doesn’t mean you need to be wrapped in cotton wool, it just means you need to think creatively about exercise and fitness.

Getting fit and taking control of your body is just another way of demonstrating your capabilities – and suddenly, you’re taking down those barriers.

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Why don’t we take disabled people seriously when it comes to sex and relationships?

Guest blog from Jennie Williams, founder of disability charity Enhance the UK. Its current campaign, the Love Lounge, focuses on improving disabled people’s access to high-quality sex and relationships education.

About five years ago, I took my friend Andy, who has cerebral palsy, on a trip to Amsterdam to visit a sex worker. He was 32, funny, open-minded and a football coach with a university degree, but he was yet to have a sexual experience.

After the trip he told me that he didn’t think it had gone well, and I realised that while Andy is intelligent, sociable and knowledgeable in many other areas, when it came to sex he didn’t know the basics.

When I returned from Amsterdam I began researching what sex education was available for disabled people. I found very little, and that really scared me.

Stopping the stigma

The truth is that disabled people have sex and disabled people like sex, but they don’t have access to the same advice and support as their peers.

Currently, there is no UK government policy recognising that physically disabled young people require specialised sex education. In a survey we conducted last year, not a single disabled person had had their disability addressed in sex education lessons.

In particular, physically disabled people who rely on carers to wash, dress and feed them run the risk of becoming desexualised. Many find those around them view them in a childlike way, when they have as much right to a healthy sex life as anyone else.

We need to stop the stigma and address those awkward questions – everyone has them, but disabled people often have no one to ask.

Through my own disability, degenerative hearing loss, I am acutely aware of the issues the deaf community faces in terms of sex and relationships education. The charity Deafax found that two-thirds of deaf people received inaccessible sex education, often simply because they could not understand teachers. “There was never anyone to ask who could explain properly to me in sign language,” one girl said.

Your questions answered

Enhance the UK has just launched The Love Lounge, a safe space on our website where users can ask a panel of disabled people questions related to sex, relationships and disability.

We encourage queries not only from our disabled users, but their partners and parents too. We want to encourage discussion on seemingly ‘taboo’ topics and create a caring sense of community.

Our two ‘non-expert sexperts’, writer Emily Yates and activist and media personality Mik Scarlet, will be hosting a special session on Scope’s online community all this week, and would love to answer your questions.

Mik Scarlet and Emily Yates
Mik Scarlet and Emily Yates

Both also work for Enhance the UK as disability awareness trainers, so are used to addressing all kinds of issues – nothing is off-limits!

To give you some ideas, here are a few we’ve had on the Love Lounge so far…

Join Mik and Emily on Scope’s online community all this week, and post your burning questions!

Life’s too short to get offended

Guest post from Jay. Jay Lusted is a TV presenter, actor and motivational speaker who was born with a rare form of dwarfism.  

 Jay was in the papers last week talking about the awkward moment when he was out having a meal with his fiancée, and the waitress grabbed a colouring book and crayons to hand to him, after mistaking him for a child.

A few months ago I was out and about in Cardiff with my fiancée Chloe and we were hungry, so we decided to go to the Harvester for a meal.

When we walked in, the waitress asked Chloe how many people we needed a table for and Chloe replied “two please”. The waitress quickly glanced and saw me standing next to Chloe, then grabbed a colouring book and some crayons.

I just giggled to myself and Chloe looked at me and laughed too.

As we approached the table I said “thank you very much”. The waitress obviously heard my deep voice, quickly noticed I wasn’t a child, and realised that I didn’t need a colouring book and some crayons!

The waitress didn’t say anything, but she held the colouring book and the crayons behind her back, and Chloe and I carried on like normal looking through the menu, giggling about what had just happened.

 The waitress at the restaurant was busy and rushed off her feet during rush hour, she just made a little mistake, that’s all.

These things happen and it didn’t bother me or Chloe at all. It wasn’t the first time this sort of thing has happened to me.

Another time I was in Asda with my friend and he was holding a crate of beer when an elderly lady approached him and said “you better not give any of those cans to him,” meaning me, now we found that hilarious!

I’m a dwarf and some people get offended about that word, but I have a dwarfism therefore that makes me a dwarf. I love my life and I wouldn’t change the way I am at all.

The only thing that offends me, and I would 100% approach someone if they called me it, is the word ‘midget’ or the ‘M’ word as it’s called in our house.

That word means something different, depending on who you are or where you come from and it’s use is particularly offensive to the majority of dwarfs or little people. There are some dwarfs that aren’t keen on the word dwarf but prefer the terms ‘little person or ‘little people’. But the ‘M’ word can cause distress even when it isn’t meant as a derogatory term.

But I believe that life’s too short (pardon the pun but it’s true!) to get offended about genuine mistakes, like the one the waitress made. I can’t go about my day to day life getting offended because my life would be boring and negative. People make mistakes, we’re all human, and we all make mistakes.

Follow Jay on Twitter or check out his website.

Andrew Macdonald

An organisation very much in its stride

Post from Scope’s new chair, Andrew McDonald 

It is exciting to be joining a charity that is clear in its purpose, clear in its strategy and ambitious in terms of what it wants to achieve. It is clear to anyone that has anything to do with Scope, that this is an organisation very much in its stride.

A huge amount of credit has to go to Alice Maynard. This is a very different organisation to the one she joined in 2008. It’s testament to her leadership. I have a tough act to follow and publicly I would like to pay tribute to Alice’s extraordinary achievements as Chair.

Why am I here?

First and foremost I’m a disabled person. I was diagnosed with Parkinson’s disease in 2007. Three years later, I was told I had prostate cancer, a condition that is now incurable. I have been profoundly changed by those experiences.

When first diagnosed with Parkinson’s, I wanted to get on with my life. But I also wanted to be open with my team. But colleagues advised me not to do so – “because you will be labelled as a disabled civil servant and it will end your career”.  I was really shocked. I decided I wanted to go ahead all the same because if I didn’t, I felt I was making it more difficult for the next person.  And if these attitudes persisted in the Civil Service, a relatively liberal and enlightened employer, what were things like elsewhere?

I went on to chair taskforces on disability in the civil service, each aimed at improving the lot of disabled employees. That experience left me with the clear conviction that we need to act to make our workplaces more open to discussion of illness and disability.   We need them to be safe and supportive environments in which everybody feels their voice will be heard.  And we all – disabled or not – have a responsibility to bring that about.

I know now that a diverse workplace is not just a fairer workplace: it is more likely to be a more effective workplace. At its simplest, if people come to the table with a diversity of experience, they are more likely to make better decisions.

Scope’s work on the ground, in Parliament and through campaigning to ensure disabled people get the support they need to find work and flourish in work is vital.

We need to get better at talking about disability. A recent book review of a thriller by Martin Cruz Smith noted that the author had just “admitted” to having Parkinson’s. Pause for a moment and you will see that that verb stares out at you as extraordinary. Again, Scope is on the case: Scope’s End the Awkward campaign is light-hearted but it makes a serious point.

I have learned a lot through my work on disability in the Civil Service. I have also written and lectured on my experience of disability. One of the most important insights of the last seven years – and one of my motivations – is that I have so much more to learn. Each of us has a particular, a unique experience of disability.   Recognising that and respecting it is crucial. .

What can I bring?

My first priority is to learn.  To learn about Scope and its work; to learn about how I can best make my contribution.

I have worked across government and at the most senior levels of government, developing and implementing strategies, leading organisations and delivering change. That experience has been supplemented in recent years by my time as a trustee at Action for Children and the Cure Parkinson’s Trust.

My last job was one of the toughest in the public sector. From its creation, I led the Independent Parliamentary Standards Authority (IPSA), the body charged with sorting out MPs’ expenses and pay. It wasn’t easy. I steered it through some tricky times. I know the importance of listening when the going is tough. I know what is like to take tough, potentially unpopular decisions. And I know what it’s like to front those decisions.

I bring energy and enthusiasm for the vision and mission of Scope. From what I already know of Scope, I am clear that the next few years offer us a unique and exciting opportunity to bring about change, lasting change for disabled people. And to bring that about by putting disabled people at the heart of all we do.

I can’t think of a more motivating, or more important challenge.

(This is an edited version of Andrew’s speech at Scope’s Annual General Meeting on Saturday 18 October 2014)

Wheelchair user buying some food in a shop

Cutting the cost of disability

Trying to cope with above average living costs, pushes many disabled people and their families into debt. We have been sharing some great money-saving ideas with The Guardian from our new tips section on our online community.

Scope’s report Priced out; ending the financial penalty of disability by 2020 has revealed that disabled people are twice as likely to live in poverty, with 49% using credit cards or loans to pay for everyday items, including clothing and food.

Disabled adults spend, on average, an extra £550 on costs associated with their disability.

These typically stem from having to pay for items such as wheelchairs and stairlifts, buying more of everyday things like heating or taxis to work, and having to pay more for services like insurance and travel.

So what can disabled people do to cut costs?

Here are just some of the practical tips people have been sending in:

  • Go to Disabledgear.com and Disabilitybits.co.uk to buy second-hand specialist equipment at bargain prices. It’s also free to advertise stuff you no longer use. For example, say you need a Rollator – a walking aid with wheels. They cost around £265 new but on DisabledGear you can find them for £80.
  • Borrow expensive equipment before you buy. Your school/college or day centre may be willing to lend it to you.
  • Charities, including The Newlife Foundation for children and Cerebra offer grants towards specialist equipment, toys and services.
  • Abilitynet gives free IT support including advice on how to apply for grants for specially adapted computer equipment, and a list of organisations to apply to. Its free helpline is on 0800 269 545.
  • Computers for the Disabled supplies recycled PCs and new parts to the disabled and housebound.
  • Filling in the disability living allowance (DLA) claim form can be a daunting task. But the step-by-step guide from Cerebra makes the job easier. Call 0800 328 1159 or email info@cerebra.org.uk to request a printed copy or you can download it and print it out yourself.
  • Some hotel groups such as Travelodge, Premier Inn and Jurys Inn allow three adults to share a family room which is ideal if you need to supervise the person you are caring for and great for cheap short breaks.
  • Specialist shoes can be free. Check with your physio or orthopaedic surgeon.
  • When visiting attractions, ask ahead if they offer any concessions for the disabled. Most offer discounts, special access, and carers-go-free tickets.
  • Search for grants towards the cost of equipment, holidays, housing, and days out at Disability Grants.
  • Families with disabled children can be eligible to free home insulation, council tax rebates etc.
  • Some people may not be aware that incontinence aids such as pads and bed protection sheets are available free in some areas on the NHS. To find out if you are eligible, ask your local district nurse (get details at your GP surgery) for an assessment.
  • Large changing mats can be expensive. Try a waterproof picnic blanket, much cheaper and easy to keep clean.
  • Baby wipes cost a small fortune and we get through thousands so we buy them in bulk using Amazon’s “subscribe and save” feature which offers a discount of up to 15% and free regular deliveries.
  • I’ve been looking for a writing slope for ages but didn’t want to pay £40 plus. I finally found one in Ikea called BRÄDA for £2.50 that is meant for a laptop, but does the job!
  • Sponge hair rollers are a fantastic and cheap way to help improve grip on tricky objects. Just slot the sponge hair roller through a fork, toothbrush etc.
  • Since therapeutic chairs are so expensive, I made my toddler a little play station with a Bumbo seat and a tray with legs that is used for eating in bed. The tray has a table that can incline towards him to draw or do puzzles, and I use it flat for playing with blocks.

Read other tips about finance and benefits, equipment and aids and around the home.

Alice's two sons holding copies of the book

Toast – one word which holds so much meaning

Guest post from Alice. When both of Alice’s sons were diagnosed with autism she had a lot of questions. Feeling alone and feeling lost she set out to find the answers. In her new book TOAST: Autism in The Early Years she shares what she’s learnt on this journey with other parents.

Since the diagnosis of my two sons on the autistic spectrum, life has taken some unexpected turns.

Tom, now 9, was diagnosed with Aspergers Syndrome and Dyspraxia at the age of four, and his brother Alex, now 8, was diagnosed with severe autism, aged 2. My whole world turned upside down as I tried to adjust to the challenges this brought.

My experience of raising two boys with a disability has been an emotional rollercoaster, and I have learned to navigate through by finding strength in my own way, more recently by writing a book.

Toast. It is one word which holds so much meaning for me.

Imagine the moment when your six year old child says his first word: “Toast”. Every parent remembers the joy of a child’s first word. Yet this key skill is so challenging for a person living with autism.

Toast also reminds me of the problems my son Alex has had with eating. He has had a limited diet due to his challenges, and toast has remained a favourite as it encompasses the food type he prefers, ‘beige crunchy foods’. Some children on the autistic spectrum prefer a ‘beige diet’, and toast can be the number one choice. I can never see toast now without thinking of autism.

The early years were by far the hardest. I felt very lonely and isolated not knowing who and where to turn to for support. I struggled on alone trying to meet my boys’ needs as best I could, and keeping many of my emotions to myself. I pretended to the world that I was coping but deep inside things were falling apart. After starting to turn to a glass (or three!) of wine to numb the feelings of the day, I realised I was not doing so well.

One day at a meeting I was introduced to the local co-ordinator for Scope’s Face 2 Face befriending service. She asked me how I was doing. No one had asked me that before. All I had been asked is how my children were. Despite trying to put on a brave face the lady could see I was not in a good place, and asked if I thought it could help to talk to another parent in a similar position about how I was feeling. I reluctantly agreed.

Little was I to know that the support I received from Face 2 Face would be a huge step in me finding a path to come out of a dark and lonely place, and to start building a new and different life.

Meeting another parent of a disabled child made me realise how what I was feeling was quite normal, and that my worries were not unreasonable. I needed to start understanding and sharing my feelings so I could approach the journey of caring for my boys with a positive and empowered attitude.

Slowly the pieces started coming together. Meeting with other parents through Scope helped me become part of a community who understood my life. I was no longer isolated.

I learned that as a carer if I did not look after myself, I was no use to my boys, and that I would run out of energy before long. I started to think what I wanted out of life. Of course I would always be there for my boys, but being a full time parent carer did not mean my life ambitions had ended.

I had always wanted to write.

Thinking of a subject to write about was easy as I had learned so much since being immersed in the world of autism. Looking back, I wondered what I would have wanted to know at the beginning of my journey that could have helped prepare me for what lay ahead. I thought of all the questions I would have liked to have asked given the opportunity. I then set about writing a book of questions with answers to all the issues a parent or carer of a newly diagnosed child with autism might have.

Writing my book, started as a project for me to have something I could focus on whilst still being a carer.

Writing became a wonderful experience where I could indulge in my own interest and fulfill a lifelong ambition to write. I realised that unless I fulfilled my own ambitions I would start to feel a lack of self-worth.

I have gained strength to cope with the challenges of raising two boys with disabilities from many places. Some have been from the people around me, and now the strength also comes from within. In sharing my experiences I have found a positive way to channel the emotion and learn to live my life to the full, whilst still being there for my boys.

TOAST – Autism in The Early Years’ by Alice Boardman is available from Amazon in paperback and Kindle. We’re giving away a copy of Alice’s book on Scope’s online community.

Alex Brooker2

It took me seven years to find my big break, but I did it – and you can too

Guest post from Alex Brooker, presenter of Channel 4’s The Last Leg and star of Scope’s End the Awkward ads. Alex has been working with young people on Scope’s First Impressions, First Experiences programme, which supports disabled people aged 16 to 25 into work placements at top companies.

Alex in the End The Awkward video
Alex in Scope’s End The Awkward video

All I’ve ever wanted to do was to be paid to watch football. Unfortunately I realised it doesn’t work as a career choice, so I ended up doing the next best thing – working as a sports reporter on a newspaper in Liverpool.

I studied journalism at university, did a work placement at the paper, and they offered me a job. I spent half my time on placement reporting on toddlers’ football matches, but I did it because I was determined to make an impression.

But after a while I realised that it wasn’t really what I wanted to do. I didn’t know where to go next, and I spent years applying for other jobs – without a sniff of luck.

My big break

Alex BrookerThen, in 2012, I did an audition video for Channel 4, which was looking for reporters to present its coverage of the Paralympics. I was offered a gig as a reporter on The Last Leg – at the time it was the Paralympics highlights show.

It was a huge gamble. I was quitting my job for what was basically a nine-day contract (what if I was crap, and everyone on the internet laughed at me?) But I knew I couldn’t turn it down.

My first on-air interview was with the Prime Minister in the Paralympic stadium, with 11 million people watching. I’ve never been so scared in my life. My first line was, ‘Tell you what David, it’s packed to the rafters in here…’

It was the best feeling ever – when it was over. Fortunately for me, it went really well.

After my first day working on the Last Leg, I was asked to co-host – I wouldn’t be a reporter any more, I’d be on the sofa doing the jokes.

I counted myself as half-decent funny in the pub, but doing it night after night on television is a different matter!

Four series on, I feel very lucky to have been thrust into this TV life. I get invited to awards parties, and sometimes I get given free stuff, which is nice. I got given some free cooking sauce the other day.

In some ways, though, it’s just like any other job. The key is preparation – it’s a topical show, and if you don’t do your research you can’t be funny. We do so much reading for every show.

How to make it happen

When you’re looking for a job, you need confidence in your abilities and a thick skin. I’m still not quite there yet, but I’m working on it.

I waited seven years between my first job as a reporter and getting the job at Channel 4. Seven years of rejections. But I didn’t lose confidence in my ability, and you shouldn’t either.

Wherever you want to end up in life, the big thing is confidence. It doesn’t come overnight, but you just have to look at yourself and think: what do I bring to the table? Some people are funny, some people are organised, some people are good listeners. Everyone’s got something.

And don’t be afraid of your disability. That’s who you are. It’s who I am. My hands are part of me – I can’t go into an interview with a pair of mittens on hoping they don’t notice!

Be confident. You’ve got something that no one else has, I promise you.

Alex chaired the judging panel for the first Disability Power List, which launched today.

Scope exists to make this country a place where disabled people have the same opportunities as everyone else. Until then, we'll be here.

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