Tag Archives: support

My advice to anyone with a hidden impairment

Alex has worked for West Yorkshire Police since 2006, where she first joined as a Police Community Support Officer. She was diagnosed with Dyspraxia and Dyscalculia in 2014. Alex is involved with the Positive Role Model Programme, a West Yorkshire Police initiative to encourage more people to be open about disability. The message is “It’s okay to be you” and in this blog, Alex shares her story.

Before joining the Police I had lots of ideas of what I wanted to do as a career, but I never seemed to be able to focus on any one single pathway.  I struggled at school in all things academic, especially Maths, but nothing was ever flagged up.

Hidden impairments were not really known about in mainstream schooling. I think it was partially due to excelling in my social abilities. My reports always said ‘Alex is a cheerful, chatty person, a delight to have in class, very sociable’, coupled with ‘but she could try a little harder, she needs to concentrate more’.

When I was diagnosed a massive weight was lifted

When I was diagnosed in 2014 with Dyspraxia and Dyscalculia a massive weight was lifted. I am not stupid, I do not need to concentrate more. I am already concentrating much more than most people on the simplest of tasks. I also realised I had to stay away from anything to do with numbers if I wanted a stress free life.

I once had a job as an Assistant Manager of a high street shop. Most of the time I was good at it until it came to cashing up the tills at night – nightmare! It was so stressful and I assumed I must be really stupid to get things wrong time after time. Thankfully, my personality has always kept me going even if sometimes I feel I am going to crack. Now that I know I have Dyspraxia and Dyscalculia I can give myself a bit of a break from being ultra-hard on myself and ultra-critical of my mistakes.

Alex laughing, with a park in the background

Fighting to succeed

In a way, not being diagnosed earlier made me the person I am today who works hard to achieve everything I want at work and at home. I am driven, confident and sorely honest with myself. My conditions do not disable me but they do challenge me and I am up for a challenge in any form. It is this drive to succeed at everything I do that keeps me fighting to stay at work.

In my 11 years in the Police, I’ve had several roles and I am currently in a dream position at the Regional Scientific Support Service, training to become a Fingerprint Identification Officer. This is my biggest challenge to date and my Dyspraxia is really putting up a fight with the capabilities required for the position. But I have had this battle before and it hasn’t stopped me succeeding!

We need to think about reasonable adjustments

The assessment did get me thinking: why make a person with Dyscalculia (someone with no natural ability with numbers) do a Maths based test? Is that not setting them up to potentially fail? I fully acknowledge the need to assess people’s skills and resilience – especially in jobs like the Police – but I feel the current methods of assessment do not match our modern day understanding of disability. I think assessments could be more reasonably adjusted – impairments are much more complex than requiring a bit of extra time.

I think the recruitment process has moved forward with the introduction of a presentation as it’s another means of demonstrating a specific skill. These are much more relevant than demonstrating you can work out percentages.

Woman smiling inside an office

My advice for anyone with a hidden impairment

Some people feel like they want to hide the fact they have an impairment but I almost want to shout it from the rooftops. It validates me, my quirks and my frustrations. It means that people know to give me that little extra time and patience and afford me the right to get things wrong more often than is considered ‘normal’.

I would say to anyone with a hidden impairment: be open, be honest, be confident, be adaptable! Life is challenging enough without a hidden impairment and in coping with both you already have one up on the rest of them.

If you have a story you would like to share, get in touch with the stories team.

Read more experiences of having a hidden impairment.

Employing disabled people isn’t just about building ramps

Abbi was born with a genetic bone disease called osteogenesis imperfecta, also known as ‘OI’ or brittle bones. In this blog, she talks about some of her own experiences and what she thinks needs to be done to support disabled people in and out of work.

I was very lucky to get a job straight out of university. I work in a large advertising agency in London which can afford things like a wheelchair accessible office, ergonomic furniture and any software I might need. My physical access to my office is faultless, but employing disabled people isn’t just about building ramps.

Having the confidence to ask for what you need

When I started my job, I was never given the opportunity to explain what my impairments are and what effect they have on my life. As a junior employee, I didn’t feel comfortable asking for that conversation.

After a year of working 10 to 12 hours a day, five days a week, when I could no longer disguise my illnesses my employer didn’t know how to respond. I ended up having to take an entire month off work for reasons which could have been avoided had I felt comfortable explaining my conditions, and asking for a little flexibility, earlier on.

My agency is now working to make changes to my role but it’s been a real knock to my confidence in the workplace and has had a real effect on my mental health.

In my experience, many disabled people at the moment have a real fear of appearing as a financial burden to employers. That’s wrong, but it’s a position with which I can only empathise.

Abbi, a young disabled woman in a wheelchair, smiles and poses for a photograph

Everyday Equality by 2022

We live in an increasingly technological world, yet many employers consider employment to mean being physically present in a place of work, nine to five, five days a week. That’s something that for many disabled people is simply not possible. It’s something that I’m not going to be able to maintain forever and it’s not necessary to do a good job.

The key is flexibility. We need to create a culture in which disabled people feel confident asking employers and potential employers for what extra flexibility they need to do a good job. Whether that’s working four days a week, reduced hours, working from home or just taking a lie down once a day, a little flexibility can make all the difference for disabled people, especially those with fluctuating conditions.

Tell us what would help to improve your work opportunities

Scope is calling on the next government to improve disabled people’s work opportunities.

You can read more about Scope’s priorities for the next government and how you can register to vote in this election.

What would help to improve your work opportunities? Email the stories team and tell us your experience – stories@scope.org.uk 

You can also join the conversation on social media by using the hashtag #EverydayEquality.

I still don’t have the support I need to live a full life

Josie, from Bristol, was a nurse until 2008, when she developed a number of impairments which affect her health and mobility.

She has most recently been diagnosed with mast cell activation, a condition which affects immunity and increases the chances of anaphylaxis attacks.

In 2008, I was well and working as a nurse. Then I got ill, and just didn’t get better. I was eventually diagnosed with fibromyalgia, a neurological condition which causes pain all over the body.

I then suddenly developed idiopathic anaphylaxis – life-threatening allergic reactions caused by a range of things, from heat to pollen and perfume. It means I need to have a support worker with me when I go somewhere new in case I have a reaction.

My other health problems mean my mobility is limited, and I’m often ill in bed for several days at a time.

I recently got an electric wheelchair, which has been amazing and has given me some of my freedom back. I have two children who live with their dad, whom I see regularly. But I still do not have the support I need to live a full life.

Some days I barely get to speak to anyone

At the moment, I get three short visits a day from a care worker to cook my meals, help me shower, and keep the house clean. I get two hours every two weeks “social” time which at best on a good day gets me over the park and back .

It’s not long enough to join in any activities but I value this time hugely as it’s uninterrupted time with actual real conversation, not just “what do you need to eat?” or similar.

My basic needs are met – I’m clean and I’m fed. But I haven’t got enough support to actually get me out of the house. It means that some days I barely get to speak to anyone, let alone have a social life.

If I get an infection and have to ask my carer to pick up a prescription, I don’t get to have a shower that day. There just isn’t enough time.

Josie, a disabled woman, and her daughter

What the right support would enable me to do

A little more support – for example, a support worker to go with me to new places – would give me so much more opportunity to take part in life, but at the moment that feels like an impossible utopia!

People like me, who were professionals and could make a contribution with the right support, are being cut out of the workforce.

Working in an office or a hospital isn’t really possible for me, but I still have skills and experience that I would like to use, if I had the means of doing so.

Everyday equality by 2022

In the end, it is a question of equality. In a fair world, I would have the support I need to live my life, and the opportunity to fulfil my capabilities.

I’d be able to go out and have a social life. I’d have support to do some work, maybe based at home where I would be able to control my surroundings. Instead I don’t feel like I’m living, just existing.

Tell us what living independently means to you  

Scope is calling on the next government to improve social care for disabled people, so they can live the life they choose.

You can read more about Scope’s priorities for the next government and how you can register to vote in this election.

What does living independently mean to you? What would getting the right support from social care enable you to do? Email the stories team and tell us your experience – stories@scope.org.uk

You can also join the conversation on social media by using the hashtag #EverydayEquality.

Why we’re taking on the London Marathon for Scope

Vicky, Louise and Nina are running the London Marathon for Scope – “a charity close to our family’s heart”. In this blog, Vicky, her sister Mell and her nephew Moss, all talk about why raising money for Scope means so much to them, and why they are excited to take on this challenge! 

“My little sisters have decided to run the London marathon!”

They are raising money for Scope – a charity close to our family’s heart.

My eldest son, Moss, has cerebral palsy. Thanks to Scope’s support, and against the odds (prognosis was that he would never walk), he took his first unaided steps when he was almost four. To hold your child in your arms and be told that life would not be the same for him as it was for his peers was the hardest moment in my life. Scope gave us hope.

To be able to walk into school on his first day and be able to stand up in a bar and look at people in the eye when he was older – that was my goal. My son is now more independent than any other lad of his age I know. With the use of sticks he walked into his first day at school and he walks into bars on his feet often! To say I am proud of him wouldn’t even ‘cut the mustard’ (if that’s a real saying?)

This, I know was down to the support of Scope at the beginning of our journey. I am mega proud of my little sisters for doing this. I hope Scope’s support for parents continues as I honestly don’t know what we would have done without them.

“I’m so happy that my aunts are running for Scope”

Scope had a huge impact on my life. If it wasn’t for Scope and the encouragement from my mum I wouldn’t be able to walk unaided now. When I was a kid I was told I would be in a wheelchair for the rest of my life but that’s not the case and that’s down to Scope and my mum.

I’m so proud and happy  that my aunts, Vicky and Louise, are running for Scope. I didn’t realise they knew so much about how Scope helped me when I was growing up, so it’s great they are raising money for Scope. I work at Scope now so I really appreciate where the fundraising goes and how important it is.

I really hope to be there to support them on race day. My dissertation is due though so I don’t know if I can make it, but fingers crossed I can be!

Head and shoulders shot of Vicky and Louise smiling with a field in the background

“I’m really looking forward to marathon day”

I started running last February as I wanted to get fit after having my two children. I started the ‘Couch to 5k’ on my phone. This developed into entering 10k races and a half marathon with my younger sister Louise. Then we decided we wanted a challenge as I was turning 40 this year and we entered the London marathon.

Running for Scope was a natural choice for us because our nephew Moss has cerebral palsy. Without being supported by Scope we really believe he would possibly be in a wheelchair, rather than having the strength and determination to walk with his crutches. Scope also offered my older sister Mell the support she needed when Moss was growing. We met other families who benefited from Scope’s service too and have family friends who have also greatly appreciated the service Scope provides.

I’ve loved training for the marathon with my sister and our friend Nina has been a huge part of it too. It’s been challenging and tiring at times but we have all pulled each other along. When my legs are stiff and tired at the end of a run I think of my nephew and this makes me more determined and motivated to carry on and more proud of him. He is one totally amazing person.

I’m really looking forward to marathon day and running for Scope. Although I’m feeling a little overwhelmed about how many people are going to be there! We really feel that Scope are an amazing charity and we’ve all been working hard to fundraise so that they can continue the great work they do.

Want to help Vicky, Louise and Nina reach their goal? Make a donation on their fundraising page.

If you fancy taking on a challenge, sign up for 2018 or check out some of our other events!

It took me 32 years to get a diagnosis. Why is autism in girls still overlooked?

Carly is an Autism advocate, filmmaker and speaker. She wasn’t diagnosed with autism until she was 32, after two of her daughters were diagnosed. She found it a battle to get a diagnosis and started to notice a lack of understanding and resources when it came to autism and girls.

In this blog Carly shares her journey and talks about why we need to start recognising and supporting autistic women and girls. 

Growing up feeling different

My earliest memory is being the kid that couldn’t go to preschool without my mum staying. My mum actually got a job at the preschool so I would go! I remember it seeming very noisy and busy. All the kids were playing but I wasn’t. Then when I started school that didn’t change. I remember feeling very different then and things got even harder in secondary school. I was really anxious. I started realising that I never got invited to birthday parties. I couldn’t cope with bright lights and they actually made my quite hyper. My teachers just thought I was naughty.

My parents took me to see a psychologist at 14. He said I was just lazy and his advice to my parents – which is the worst advice you give an autistic person – was she needs everything new, she needs a fresh start. So we moved house and I started a new school but life just took a downward spiral for the worst. I got into all sorts of trouble, bad boyfriends. Obviously I had no understanding of how vulnerable and naive I was, no idea of the consequences of my actions at all. I ended up pregnant at 15 and living in a homeless hostel. I had my daughter who’s wonderful and I worked hard to turn things around, but there are serious consequences to not being diagnosed and not being supported.

carly-jones-blog-3-resized
Carly at the UN, where she spoke about autism and girls

“You can’t be on the autistic spectrum because autistic people can’t act”

I have three daughters and two of them are autistic as well, which is how I found out that I was. My 14-year-old was diagnosed when she was six and my youngest was diagnosed when she was just two. In the process of trying to find out anything I could about autism and girls for them, I realised “oh this explains everything!”

I went to see an NHS psychologist who gave me a tick sheet with things like “Do you prefer parties or museums?” – you know, one of those. I scored quite highly on it but then he asked “What are your hobbies?” and I said “I love acting” and he said “Oh then you can’t be on the autistic spectrum because autistic people can’t act”.

I left it for a while, then I wrote to the lady who discovered Asperger’s. I wanted to film it so that no-one else would have to go through this alone. Because I felt so alone. She invited me to meet her and I finally got my diagnosis – on film! There was a mixture of emotions but overall it was complete elation. I had my answers and I could start rebuilding my life, understanding who I am. I always felt like a second class ‘normal’ person and now I know that I’m a top class autistic, so I’m fine!

Why is autism in girls overlooked?

I was told in 2008 by educational staff that it was impossible that I could have two autistic daughters because autism only happens to boys. Every book I picked up to try to understand and support my daughters all referred to “he” or “my son”. There was nothing for girls. I just thought why?

I think gender stereotypes are a big problem. Not only are there lots of women who are undiagnosed and unsupported, there are lots of men who present themselves in a more feminine way and they’re not diagnosed and supported either because they’re not the stereotypical view of what autism is – they’re not “train spotters” or like “Rain Man”. Also, female pain and female differences aren’t always taken as seriously. It’s always “Oh they’re probably hormonal”. Even my reaction to the sensory overload was seen as “Oh she’s in a bad mood” – and being autistic, I couldn’t explain my discomfort to them.

Then there’s what I call the ‘chameleon effect’ – masking your differences and trying to blend in. We do this just to survive in a scary, unpredictable world. Things are changing but there are still pockets in the UK where this is happening and girls aren’t being believed and supported.

Head and shoulders shot of carly in front of a brick wall

I want to make sure the girls in our country are protected and supported

Globally there needs to be more recognition of autism and girls. In the UK it’s a really exciting time because I’m looking around and seeing so much more awareness. People finally believe we exist – yippee! That’s my first eight years done. Now my next eight years will be about making sure we have equality; making sure we have the same protection and opportunities as everyone else.

Some things that happened in my life were awful but in hindsight I’m grateful now because I know how important it is to make sure that the girls in our country are protected and given proper support. I spent 32 years of my life thinking I must be “stupid”, “crazy” or “unliked”. Being diagnosed gives you an understanding that this is how you see things and this is how other people see things differently to you. It gives you self-awareness. I’ve got a lot more confidence now. The hardest thing is knowing who you are after years of it being eroded away. I’m still discovering myself now but it’s quite exciting. I’m getting there!

Find out more about Carly’s story on her website. You can also buy Carly’s book about autism and girls.

If you have a story you would like to share, get in touch with the stories team.

“I want to have a job, get paid, go out, enjoy myself”

Nusrat is 27 years old and recently started a job as a Lab Aide at the Sainsbury’s Wellcome Centre, with help from Scope’s Future Ambitions employment service.

For Learning Disability Work Experience Week, Nusrat shares her journey in to work and her goals for the future.

When I was at school I was thinking –  I want to get paid, I want to earn my own money and that’s what I want to do for my future. I went to college, then when I finished college I went to Project Search which finished in July. Project Search gave me training to help me get a job. I also did First Impressions, First Experiences with Scope. I liked it. I made loads of friends there. We did mock interviews, learning more skills, that kind of thing. That has helped me.

Work experience helped me get a job

I was going to Newham’s employment service and a Workplace advisor told me and my mum about work experience through Project Search. I thought it sounded good, that’s why I wanted to do it.

The work experience was good. I liked working with my tutor and job coach from Project Search. I liked working in the kitchen, giving patients tea and coffee in the morning. I liked working in the canteen, emptying the bins and cleaning the tables. I learned new skills. I learned to give food to customers and how to make tea. I learned to use the till. I did that with a colleague. I worked as a host. I was learning to be a housekeeper. I didn’t like that, it made me feel sick. I was also in an office, typing, answering phones. I enjoyed it. I liked it. We finished at the end of July and had an awards ceremony. My mum came. She said she was very proud of me.

I learned about listening to colleagues and managers. I learned how to make tea. I learned about working with people. I also learned about interview skills. Doing the work experience helped me get my job.

Nusrat sat at a long table smiling, with a cup of tea

Support to do my job

Jodi from Scope told me about the job at the Wellcome Trust. I wanted to come here and work in the lab. I came here for an interview. I was brave, confident, and polite. I liked it. Jodi was there too. I love this job. I want to do it, I enjoy it and I like my colleagues.

I like Jodi because she’s really friendly and very helpful. She supports me so my mum knows it’s okay, she’ll look after me. Jodi comes in to visit me at work. It’s nice to see her and I like working with her. If she doesn’t visit, I can just give her a text. It’s nice to have someone to talk to.

It’s difficult for me to travel. A taxi comes to pick me up and takes me home, takes me to work. Jodi has sorted things out for me. If I didn’t have the taxi it would be difficult for me to do this job.

My hopes for the future

I’ve never experienced bad attitudes. I’ve worked with some good people. It was hard to find a job at first though. I don’t know why, I’m not sure. I was looking for jobs but they wouldn’t hire me. Employers need to change their attitudes and respect other people.

I work hard. Working with other people has improved my skills. In the future I’d like to be able to go out with my family, go shopping, help out at home. I have lots of friends and that makes me happy. I go to a friendship club to meet other friends and I enjoy it. I want to have a job, get paid, go out, enjoy myself. This is what I want to do for my future.

If you would like to share a story about work experience or employment, get in touch with the Stories team.

“It’s nice knowing my hard work will make a difference” – Caroline takes on the Great South Run

Caroline is doing the Great South Run for Scope in honour of her friend, Vicky, who lost her leg in the Alton Towers Smiler crash.

For this blog, she chatted to us about her reasons for doing it, her journey so far and her determination despite her own injuries.

My friend Vicky was involved in the awful Alton Towers Smiler Crash where she lost her leg. She has had an incredibly tough time adjusting to her new life but has shown outstanding courage and bravery. She has overcome so many barriers and inspired thousands of people.

Despite her own heartbreak Vicky has helped me so much. Her courage has given me courage.

Vicky has sadly faced criticism and trolling online, which does get to her. I want to show her and other disabled people who have to deal with prejudice just how much support they have. It was after having a chat with one of my close friends, that I decided I wanted to do more for charity and for Vicky.

Why I’m supporting Scope

I chose to support Scope because they do such incredible work supporting disabled people and their families. They also campaign for equal rights which I think is amazing. I work as a teaching assistant, working with disabled students at a college in Cornwall. It’s an incredible job but sadly I see the prejudice they face every day, so the work that Scope does is very close to my heart.

caroline-2You’ve got to believe in yourself

Running or walking 10 miles doesn’t come naturally to me, but I know I can do it if I work at it. With help from my friends I have done lots of training for the run.

I have foot injuries so to run it would be very difficult. walking will be tough enough but I am determined to jog some too. I know that I can make it. You’ve just got to believe in your own abilities.

I organised a big fundraising event in my local pub

Tyacks Hotel have been so supportive and cannot thank them enough for all their help. I got so many incredible donations from so many local and national companies.

With all the amazing support from my family and friends it was a brilliant night and we raised £471 in just 3 hours. I was so pleased that I could do this for Scope and Vicky.

Some people didn’t think I’d be able to get great prizes or thought that it wouldn’t raise much. But I emailed a lot of companies, put myself out there, and got so many incredible prizes. The determination to help my friend was all I needed.

It’s nice knowing my hard work will make a difference

I get to help amazing charities and have an opportunity to do something great for myself and others. I feel like my hard work will make a real difference. Knowing it’ll be tough only makes me more determined to do it. I am very excited and just know it will be an incredible day.

My advice to anyone out there looking to take part in an event or raise money is don’t doubt yourself, we can all do things that we never expected.

If you feel inspired by Caroline and want to support Scope by taking part in one of our events, you can read more here. You can also sponsor Caroline here.

Recruiting personal assistants means I can live my life how I want to – Nadia

Nadia is 24 and lives in West Yorkshire. She’s a student and a campaigner with Scope for Change – Scope’s training programme for young disabled campaigners. Nadia employers her own personal assistants and last year, she won an Employer of the Year award.

She told us what this meant to her, what she looks for in her employees and how they support her to live a busy, independent life.

I’m profoundly deaf and I have cerebral palsy. To communicate, I use a communication aid called DynaVox. I can also sign British Sign Language but my body physically limits my signing. I’ve been employing personal assistants with the help of my family since I was eight years old. I started off with two or three and now manage a team of eight, as well as one volunteer and a communication support worker.

With support from my team, I can enjoy a busy life

I volunteer at a college and I like to meet friends, go to concerts, festivals, weekends away, travel and go for cocktails. I also need support to go to conferences, events and college. My team help me to be independent. For example, I’m planning a backpacking trip around Europe. They also help with everyday life including personal care, showers, writing and communicating, feeding and dressing me. All of these responsibilities are done respecting my autonomy.

I like to recruit personal assistants myself

I find staff through advertising on the internet. I also use Facebook groups, Twitter, Gumtree, the deaf community and students learning sign language.

I’m often pre-judged so I feel it’s better to meet people myself. I like to meet face to face and assess their skills. Employing my team myself, as opposed to through an agency, means I can plan my life how I want. If I want to socialise until 2am, I can arrange it. If I plan something that others may think is impossible, I have a fantastic team that will work with me to make it possible.

I look for people with similar interests, open personalities and honesty. I welcome diversity. I like people with skills in deaf awareness, signing and good receptive body language. I also need people who understand my thoughts and how I process language, someone with a good sense of humour, who can think quickly if problems arise. My team have supported me at the best times, but also at some of my worst times.

Working together with my team, we get to know each other well. I support my team emotionally, with advice and through training. I also plan nights out which my team are welcome to join and this builds relationships.

Nadia on a night out with a group of female friends all smiling

I’ve had moments I will always remember

In 2015 I visited London. I was going to the Houses of Parliament to give a speech with Trailblazers. Afterwards, we were at St Pancras station and there was a man playing the piano. He was an old Italian man and he sang a song called ‘That’s Amore’. My personal assistant, Sam, signed and I danced with my electric wheelchair. We were in the middle of the train station. I felt so happy and free.

Then we went to King’s Cross Station and I saw what looked like a big birdcage lit up with different colours. We went to have a look and saw that it was a swing. I told Sam to go on it and she said “No, you get on it!”. I felt safe so I agreed. She got me on the swing and held me while pushing. I felt excited and it was so different. Every day I’m sat in my wheelchair. I felt air on my legs while I was swinging and I laughed so much. I will always remember that experience.

I was so proud to win an award

This year I was nominated for an award – “Best individual employer who employs their own care and support staff”. The event organisers were Skills for Care. On the night of the awards I had a headache, felt so sick and I wanted to go to bed. My clinical support worker persuaded me to stay for the results. When they announced that I had won, I was surprised, happy and proud.

If you have a story you would like to share, get in touch with Scope’s Stories team.

 

I published a book so others can walk this road with me

Rachel is mum to Sam, who has severe cerebral palsy. She writes a blog, and she’s just published a book called The Skies I’m Under.

She’s doing a Q&A on our community this week – feel free to come and say hello! Here Rachel talks about her experience at the time of diagnosis. 

Memory is a funny thing. I can tell you the name of the boy I fancied aged nine (Andrew Jafferies) and sing you the ‘Milkyway’ advert from start to finish, but I can’t tell you why I just walked into the living room. It seems my brain is very good at identifying important information and promptly forgetting it.

A day I’ll never forget

There are some things though I will never forget. Like the day I was told my son, Sam, had been born with severe brain damage. Three years ago, I set off on a journey of remembering. I sat in the summerhouse in my garden and started writing about my early days of motherhood. I wasn’t just sketching out what had happened but I settled there, and filled in the hues and shades of a time when my life was turned upside down.

Last month, I published my memoir about becoming the mum of a severely disabled son, so now others can walk this road with me. Here’s an extract from The Skies I’m Under. It tells of how my husband, Tim, and I were told the results of an MRI scan that confirmed Sam’s brain damage.

“I’m afraid it isn’t good news.”

‘The doctor in front of us finally stopped, swung open a door, and showed us into a small office. We entered clinging onto our hopes of a miracle, with our dreams intact. The room resembled a large cupboard, absent of a two-seater sofa or box of tissues. With the small room void of natural light, limited space and haphazard layout, the doctor was required to perch on the edge of a desk as she began to talk.

“I’m Doctor Rutherford,” the slight woman explained. She introduced her colleague, whom we had seen earlier that day.

“I’m afraid it isn’t good news. The scan shows severe brain damage.” Her words were spoken lightly, yet the room began to close in. She gently and calmly explained in detail how the scan showed Sam had been very unlucky.

I sat rigidly and gazed across at the scan. I began to see a withered, shrunken brain, with deep darkened rims of space where healthy tissue should have been. She explained Sam’s brain damage was both unusual and extensive. Not only had he suffered damage to the white matter but also the grey matter.

“From the scan we can only assume that numerous insults occurred in the time leading up to Sam’s birth and then again at delivery,” she informed us. Her words became a blur of white noise as my mind drowned out the truth; replaying all the times I may have allowed this catastrophic event to occur.

How had I missed my baby struggling inside me?

How had I carried on singing, stripping wallpaper and going about my daily life, when the fragile being inside me was suffering repeated insults?

What kind of mother was I?

Refocusing on the words being thrown around the room, I brought my mind back to the small office and information I wanted to ignore.

“All parts of his brain are affected. He will live with cerebral palsy… resulting in learning difficulties… as well as physical limitations.” There was nothing to say, so we simply nodded, indicating our readiness to hear more.

“He will have complex needs and it seems the areas affecting temperature regulation and vision are particularly damaged.”

Tim bravely asked questions and I was surprised at his ability to talk with a steady voice. The doctor remained vague. We weren’t told he would never walk, talk or eat, but it was indicated that each of these things was in jeopardy.

Our future plans were erased

It was as though the doctor conjured up a paintbrush dripping with brilliant white emulsion and began covering the wall of our future. What had once displayed vivid colourful strokes of our hopes, dreams and future plans, was being abruptly erased. The blank canvas that remained felt daunting rather than full of potential. Nothing could be assumed, and nothing could be expected.

A bomb had exploded in the middle of our lives splintering our world into thousands of tiny pieces. Like walking wounded, we staggered out of the hospital holding onto each other, dazed and bewildered. The words spoken over us rang in our ears. As reality began to sink in, I was surprised at the magnitude of my shock. I simply hadn’t prepared myself for hearing my little boy had profound brain damage.’

A different outlook

I couldn’t imagine what my life would become and how hard it would be. I struggled picturing a world where my son was disabled and my home full of disability equipment. Today, I appreciate that the most picturesque views are often found down a bumpy road. I couldn’t foresee neither the heartache, the love, nor the smiles.

Win a signed copy! Ts&Cs

Want to win a signed copy of Rachel’s book? To enter, sign up to the community and comment on Rachel’s discussion. Only one entry per person. The prize draw closes on 1 February at 10am. The winner will be chosen at random after this date and notified via email. The book can only be posted to addresses in the UK and no cash equivalent or alternative prize will be offered.

Rachel is doing a Q&A on our online community from 25 to 31 January. You can ask her about her experiences and find out more about her book. 

My experience as a grandparent of a disabled child

Vicky Harris is Face 2 Face Co-ordinator for our befriending service at Liverpool’s Alder Hey Children’s Hospital. She believes that grandparents of disabled children, as well as parents, need access to emotional support. Here Vicky shares a very personal experience of disability in her family.  

I have been blessed in my life to have three children and three grandchildren, but I feel there may be more grandchildren to come in time! My eldest child, who’s nearly 30 was born with a very rare physical disability which at times has been emotionally challenging. She has grown into a beautiful adult who I’m very proud of.

Nearly eight years ago my second grandchild Jack was born to my daughter Sammie who was 20 at the time. I remember being so
excited as I had a granddaughter who was two years old, and I was now lucky to have a grandson too. The first time I saw him, he looked so beautiful but I knew something was wrong. Within a wBaby Jack asleep in a blue cardigan and hateek we received the news that Jack had catastrophic brain damage. I have to say I felt devastated. Devastated for my daughter and her partner, and devastated for Jack.

I loved him so much, part of me hoped the doctors had made a mistake but I knew they were right. I was trying to find light in what was a very dark time. We spoke to the consultant and then came crashing down again when we were told he might not live beyond eight years old. He would be completely reliant on my daughter for all his needs. My daughter hurt so much, I wanted to take her pain away and make her feel better but I knew I couldn’t.

As a family, we rallied round. I remember Jack started drinking from the bottle, which the professionals had feared he may not do. This offered us hope, but sadly it didn’t last and he had to be peg fed to help him thrive. We were always looking for hope, then hopes were dashed along the way. Picking ourselves up, loving each other, caring, scared the day we were dreading would come.

As a grandparent I felt almost useless, sitting back and watching the journey unfold, knowing the outcome one day would be having to say goodbye to Jack. I know my daughter hurt, she was a wonderful mother to him. I know she loved him with all her heart, and I wondered if she’d be able to let him go when that time came.

I wanted to fix the situation, change it, make it better. Watching Jack have many fits, hospital visits, but also trying to live this normal life. Enjoying every day, loving him every day, always mindful of how precious his life was. As a family we’d already experienced disability. We knew in the grand scheme of life that disability is not the end of the world. Yes, it can seem a different world at times, but none the less a good life can be lived. With Jack it seemed so final, and we just hopeJack at three years old strapped into his pushchair, wearing a shirt and smart waistcoatd he would stay strong for as long as possible.

My granddaughter Jess loved him so much, she would pretend she was reading him a book and then poke crayons in his ears! She seemed to understand he was special, her bond with him was so beautiful to see.

Sadly, the day we had dreaded arrived all too soon. Jack had pneumonia and was on life support for 10 days when it was agreed it should be withdrawn. My heart broke watching my daughter be so brave in letting him go. When we said goodbye, Jack was only three years old.

I have such immense pride in my daughter, I wanted to spare her the pain, spare her the hurt but no one could have loved him more than she did. We were all blessed to have Jack in our lives, and we’ll never forget him.

Vicky will be starting a grandparents drop-in group in Liverpool next year. Would any of you grandparents of disabled children be interested in attending something like this, where you can meet other grandparents, talk about your experiences, and gain support? Please let us know. 

We are fortunate to have Grandparents Plus on our online community this week, talking about some of the issues Vicky has raised here, and answering your questions.