Tag Archives: befriending

Self-publishing: How do I publish my book?

Following our In The Picture campaign to include disabled children in the books they read, Scope published children’s storybooks,  My Brother is an Astronaut and Haylee’s Friends.

As a result, we receive quite a few approaches from people wanting to publish books about their experiences of disability, either as a disabled person or family member.

Much as we might like to, we can’t become a mass publisher but we’d love to see your books get published! Here are some people we know who have done just that.

Brighton Face 2 Face parent befrienders

Brighton Face 2 Face parent befrienders with their Paperweights book
Brighton Face 2 Face parent befrienders with their Paperweights book

Parents and carers of disabled children in Brighton and Hove joined a creative writing group and have published an anthology of their moving poems and short stories.

Kate Ogden, who ran the group, says: “The woman on my course inspired me, impressed me and surprised me. I believe it was the first course of its kind for parent carers, and I really hope it wasn’t the last. We have dreams of taking this nationwide, and the group went from struggling to say things out loud to shouting from the rooftops: our stories must be told.”

Parent Tracy Harding agrees, “We came together as strangers with something in common: coping with our children’s diagnosis through every type of obstacles life put in our way. All of us felt the therapeutic effect that comes from listening to others’ stories. Deeply identifying with every personal story. Opening our hearts and feelings with complete strangers brought us so close. Even though the disabilities were so diverse among our group our experiences were all so similar. Our anthology shows evolution and the journey from acceptance to continuing progress.”

The collection, Paperweights, is available to buy at Waterstones in Brighton  for a donation of £5. All the money raised from the sale of the books will go to the Brighton Face 2 Face appeal.

Beaumont College: Creating Catpig

Disabled students from Beaumont College have written and illustrated a children’s book called The Adventures of Catpig.

Catpig
Catpig

Beaumont’s Lauren Blythe says: “We created the book by hand using various craft materials, then we scanned each page into a Word document. We then printed these flat pages out and went around each character with a permanent marker due to our lack of Photoshop technology. We then scanned in our hand-edited pages and pieced them together on a Word document. The next stage was to send this document to a printing service”

“We have been lucky enough to win a creative enterprise award, which we collected at a local awards ceremony. We also did a speech using a communication device to share with the public something new they might not have seen before.”

Contact lauren.blythe@scope.org.uk if you would like to purchase a Catpig book, mug or shopping bag!

Crowdfunding for books

Here are some examples of books looking for funding:

Tips for aspiring authors

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.

“We searched the world for a miracle, but we found the answer at home”

Guest post from Reza Ataie, a volunteer befriender who runs our Face 2 Face dads’ group in Brighton. He’s sharing his story for Fathers’ Day in support of our Brighton fundraising appeal – we need to raise £120,000 to keep the service running for another three years.

My twins Nikki and Sara, who turned 18 recently, have severe autism and learning difficulties, they also have sleep problems and seizures.

Our children are a handful and a joy. Our life revolves around them, and we can’t imagine not having them for a minute. For our family the glass is always half full, and we’re always happy for the small things.

But when Nikki and Sara were very young, we went through a difficult time.  Even a lot of professionals didn’t know much about autism, and we felt very isolated.

We had a different style of living when the twins were born. I was chief executive of an international company; I travelled a lot and I had a teaching post. I now work in a different role, and I’m very lucky because I can work reduced hours and from home, but my earnings have reduced considerably as a result.

Searching the world for answers

We have videos of Nikki and Sara from their first birthday and they were talking, communicating. But then suddenly, almost overnight, their development turned back.

With the realisation of what was happening to the twins, my wife had to give up her job and eventually I had to stop too. It came to the point where I realised I couldn’t carry on – the sleep deprivation was tremendous.

When they were diagnosed, my wife and I started looking for a miracle. We started doing a lot of research into autism ‘treatment’, and this took hold of our lives.

As a parent, the most difficult thing is to accept and come to terms with your child’s condition. You hope it’s temporary. Autism is a lifelong condition, but we were fighting with every ounce of energy not to accept that.

We travelled a lot – from Russia to America, we went anywhere research was being done.

Finally, when the twins were nearly seven, our fantastic GP called us – he was the only person who knew everything we had been doing. He asked, “Are you tired out? Have you done enough?”

We looked at each other and said “Yes. We’re ready to accept it.”

Getting our lives back together

The first step was to start getting a routine back. We found the right school for the girls, and that was a major turning point. They started settling down and learning in their own ways.

We’ve always done charity work, and I got introduced to a local support group for parents of disabled children. When I started working with them, I realised what a difficult time we’d gone through and what it must still be like for younger parents.

I met Amanda Mortensen, whose daughter Livvy has autism and severe learning difficulties, and she told me about Scope’s Face 2 Face befriending service in Brighton, which she manages.

I did the befriender training course with Scope, and it was fantastic. There were 12 of us, but I was the only dad!

Starting a dads’ group

After the training, Amanda had difficulty finding a dad for me to work with. They tended to be a bit more reserved, and found it difficult to open up.

So I suggested we start a group just for dads. My reasoning was that if it’s difficult to get fathers talking one to one, maybe going to the pub as a group and having a drink would help.

Eight dads showed up for our first meeting in January 2014, and then word spread – we have 32 dads on our contact list now, and we’ve had up to 22 people come to each meeting. A running group has started on Saturdays, and people meet up socially with their families. I’m still amazed about how easy we have found it to talk to each other.

Fathers can feel very isolated – often they feel they can’t talk as freely about their problems. The group gives us a sense of belonging.

Can you support our appeal to keep Brighton’s vital Face 2 Face service running? Find out more about the service and the parents it supports. 

If I can help even one parent through difficult times, it will be worth it

Guest post from Rahna (above right), a befriender at Scope’s new Face 2 Face service in Redbridge and Waltham Forest, London. Befrienders offer emotional support to parents of disabled children – and they all have disabled children of their own. 

Rahna’s daughter Husna, 15, has a rare progressive condition called Friedrich’s ataxia.

My daughter Husna was four years old when she began to display the symptoms of Friedrich’s ataxia and Asperger’s syndrome, and we finally received a diagnosis when she was eight.

Rahna and 15-year-old Husna, a wheelchair user, outside their house
Rahna and her daughter Husna

Friedrich’s ataxia is a rare inherited disorder that causes progressive damage to the nervous system. We were told that Husna would gradually lose the use of her legs and arms, become blind, deaf, lose the ability to eat, swallow and speak.

There was nothing we or anyone else could do. For a parent, there is nothing worse you can hear.

How I felt

My world had fallen apart. I was dealing with my own emotions and everyone else’s. Every day was a struggle, and normal life as I knew it no longer existed.

I remember desperately wanting to speak to another parent whose child was going through a similar experience. It wasn’t until years later, when Husna started at a special school, that I found out that any kind of support existed.

Four female audience members applauding
Rahna (second from left) at the service’s launch earlier this month

I always had a lot of support from family and friends, but I felt unable to share all my feelings with the people around me – I was seen as the strength holding everyone up.

And although everyone was being so kind and helpful, no one really understood what I was going through, because they hadn’t been there themselves.

Why I became a befriender

Parenting a child with such complex issues is mentally, physically and emotionally exhausting. The day never comes to an end – it just merges into the night which merges into the next day.

You have to cope with so much, and to be able to speak to someone who has been through similar experiences, and share your anxieties and fears with them, really helps you feel less alone.

I first heard about Face 2 Face when I was approached by Andrea, the coordinator, at my daughter’s parents evening. Immediately I knew it was definitely something I wanted to do.

The training has been almost like being at a support group – everyone felt relaxed and we were able to express ourselves and talk about our personal experiences, knowing we were all in the same boat.

Group of befrienders holding their certificates
The newly-trained befrienders

I would have benefitted tremendously from a service like Face 2 Face if it had been available when Husna was younger. There were times when I was feeling very low emotionally, and really needed to speak to someone who understood.

If befriending means I can help and support even one parent through such an emotionally difficult time, then it will be worth it.

We’re launching four new Face 2 Face services in London this summer, and there are more across the country. Find a service near you.

It’s been tough. But he’s our little boy and we love him. – #100days100stories

Maxine is a Scope sleep practitioner. She helps families figure out and practice sleep patterns that work for them. She talks about her experiences raising her disabled son George, who has congenital ataxia. She’s sharing her story as part of the 100 days, 100 stories campaign

George 2Thanks to Scope I’ve been able to get back to work and find the support I need to look after my disabled son George. It’s been difficult at times but I’m optimistic for the future.

We knew from when George was young that he wasn’t quite right. I’ve got six daughters and George was my first baby boy, so I thought he was just different to his sisters because he was a boy.

Once he got a little bit older things became a bit more apparent. We noticed that George couldn’t hold his own head, his head was wobbly and kept falling down to his chest and he didn’t open his left eye.

As a mum you know there’s something, you just don’t know what.

Once we went to the doctors things started happening quite quickly. We were referred to a pediatrician who told us at first that he had something called opsoclonus myoclonus which was curable. He told me that we had a chance of having a ‘normal’ little boy.

I came out with mixed feelings because I’d had George a year by this point. He couldn’t do much apart from lie down but he was my little boy. He was our George. I thought I could have this normal little boy but then I got upset because I thought I’d lose the little boy I’ve already got. It was really emotional. Like all mums I wanted a ‘normal’ boy but I didn’t want to lose this wonderful little personality that I’ve got already.

We later found out that they’d made a mistake with his diagnosis. A specialist we saw a bit later told us that his condition wasn’t curable and that they didn’t think he’d ever walk or talk.

Family reactions

We told George’s sisters who were all absolutely fine. They were so fine that I was worried they didn’t understand the situation! I had to sit one of his sisters down because she said that there’s nothing wrong with George. I asked her if she understood that her brother is disabled. She said: “Yes, why did you ask? I mean that there’s nothing wrong with him in my eyes”.

We celebrate

When we heard that he wouldn’t walk or talk our motto became – never say never. We weren’t in denial but we wanted to make his life as good as we can and push him as much as we can. And we do push him. We push him now and now he’s walking! We thank his school for that. We did a lot of work with him but there was one particular lady at the school who was determined he was going to walk. She walked him every day using a walking frame and after that the only way he would walk was holding on to you. He didn’t have the confidence to let go.

George 1Then one day at home, when he was in the lounge, he was clinging on to some furniture. I turned my back and then when I looked back he had walked across the lounge and stopped at the door. He then turned around, looked at me and went “haha!”. It was just a sound that came out but it was almost as if he knew what he’d done! At that point his dad pulled into the drive. His dad came in and he walked up to his dad. I don’t think I’ve cried so much in my whole life!

He was 7 years old. We celebrate things, but we celebrate them a lot later. Everything he does is a celebration.

It’s been hard

There was a time not too long ago when my husband was working away all week. That was hard at the time. George screams a lot and there have been times when this has pushed me to the end of my tether. I’ve been at breaking point before and phoned our social worker to beg for help. She just kept telling me that I was doing a great job and that everything was going to be fine. It just felt like nobody was listening to me.

I lost my temper once and told her that I can’t do this anymore. I need help. She turned around again to say I was doing a great job. I must admit at this point my language wasn’t the best and I said to her – you’re not living my life don’t tell me I’m doing a fantastic job when you’re not here. I’m not doing a fantastic job, I’m not coping, I need some help. At which point I hung up.

The thing that impacted us most was him not sleeping. He didn’t sleep. He got up at 3am every morning which was when my day would have to start.

Getting back to work

The reason I work is because of Scope. When I had George, I used to go to a group, a little singing group for other mums with disabled children.

There was a portage worker there, and one day she gave me a leaflet and said I should volunteer to become a Face to Face worker where you befriend other people in similar situations. She said you’d be really good at it because I’m supportive.

I got a lot out of being a befriender. It was really nice to go out and support other mums. I think I coped well with George’s diagnosis because I was a bit older. I thought how must it be for younger mums having a child with a disability. I’d already had 5 children.

Not long after this I trained to be a sleep practitioner. When I was doing the training George decided to start getting up at 3am in the morning. I didn’t know how bad sleep deprivation could be until George started getting up at 3am. Then I thought come on you can put this right, you’ve done the training, put it into practice. He was my first case! So I put a programme into place and within two and a half weeks he was sleeping. It really helped me have a really good understanding of a sleep problem.

In 2010 we got the funding to run the service as a proper paid for service and that’s when I went on to the payroll with Scope. It was nice to be working.

At the end of the day it’s really difficult being the parent of a child, any child, let alone a disabled child. It was really tough. But I’m now doing a job that I really love and I wouldn’t be doing it I hadn’t have had George, I thank him for that.

Find out more about 100 days, 100 stories, and read the rest of the stories so far.

I never want another parent to feel how I felt which was rock bottom – #100days100stories

Tracy’s son Reigan, 13, has a range of conditions including autism, ADHD and Tourette’s syndrome. Getting the right support for him has been difficult, leaving Tracy isolated and depressed. Here, she explains how Scope’s befriending service helped her turn their lives around.

Tracy shares her story as part of Scope’s 100 days, 100 stories campaign.

I always knew being a single parent was going to be hard, but when my son was born he was a much harder child than I had imagined.

Tracy and Reigan smiling at the camera

He would sleep just fours a night. He was hyperactive; you couldn’t reason with him, you couldn’t get through to him. He lived in his own little bubble.

A diagnosis – now what?

His first diagnosis was actually a relief: I wasn’t a bad mother, I didn’t have this naughty child – there was something wrong. But I had no support whatsoever. I was told ‘your child has ADHD; here’s a leaflet’ and that was it. I didn’t know where to go or what to do.

I was suffering from depression and I felt isolated from other parents in Reigan’s school because of his extreme behaviour and kick offs. On one occasion he threw a chair so they moved all the other children out of the classroom for their safety.

Feeling isolated

Then a parent started a petition to have my child removed from school; it said that children like my son shouldn’t be in class with ‘normal children’. It was heartbreaking because not only was I being isolated, but my son was being isolated too.

Another time, all the children in Reigan’s class were invited to a birthday party and my son was the only who didn’t get an invite. What can you say when your child asks ‘why haven’t I been invited when everyone else has?’ It is horrible, really horrible.

Support when I needed it most

I heard about Scope from another parent. I went to a meeting and, in the two hours I was there, I received more support than I had in the previous six months. I was also referred to Scope’s befriending service, Face to Face.

It was such a relief to talk to someone who knew what I was going through, another mum of a disabled child. My befriender put me in touch with loads of organisations that could help us. Having her there to listen to my concerns gave me a level of strength I hadn’t had before.

I decided to move Reigan to a new school. Through my befriender, I got in touch with the Autism Team, a local authority service. They came in and explained to his teachers what autism is and why Reigan sometimes behaves differently.

Support for Reigan

The school put strategies in place to help. For example, if they saw Reigan getting agitated they would let him go to the playground on his own to calm down. It made a difference to Reigan’s behaviour almost immediately.

I had a befriender for just three months but I can’t express what a massive change it made to my life. It was the kick start for me getting everything back on track: I had the power to shape what was happening in my child’s life.

Making friends

Another great thing is the social life! We had gone from being socially isolated to having lots of friends. Through Face to Face, I met lots of parents with disabled kids. They didn’t blink an eyelid if Reigan started kicking off in the street. Nobody judged us or blamed us. They accepted us and that felt amazing.

I never want another parent to feel how I felt which was rock bottom. That’s why I became a Scope befriender. It is lovely to go along on a journey with somebody and see them come out the other side.

I’m so proud of Reigan

When Reigan was at his first primary school, the head teacher said he had no future. Now he is 13 and thriving at a mainstream secondary school. He’s top of his class for science and maths. He’s got friends and he’s very independent.

I truly believe that without Face to Face and the support we received from other organisations as a result, we would be in a very different place right now. Reigan just needed the right support to unlock his potential. I’m so proud of him.

Find out more about our 100 days, 100 stories campaign, and read the rest of our stories so far

25 days of stories – #100days100stories

In the last 25 days we’ve shared disabled people and families’ stories about dating, fostering, finding work and how technology can make such a difference to people’s lives.

We’ve also heard about the extra costs that can quickly add up when you’re disabled, about fighting to get the right support to live independently and people’s attitudes towards hidden disabilities.

We’re publishing one of these stories every day in the 100 days leading up to the general election. And we’re asking parliamentary hopefuls to read just one story, so they better understand disability.

Having an impact

Alex holding her baby close
Alex with her one-year-old Benjamin

Alex’s story about being offered a termination of her unborn son has been one of our most read-blogs ever and has so far been shared more than 2,000 times on Facebook and Twitter.

Alex writes “No one said: ‘There’s a chance he might be happy. There’s a chance he might enrich your lives in ways you never imagined.'”

Craig’s story about turning his life around after a spell in prison to become a Paralympic cycling hopeful was selected as Guardian Society’s ‘pick of the blogs’ a few weeks ago.

“I’m not proud of my past”, says Craig, “but (prison has) certainly shaped me to be the person I am”.

Family ties

Our parent storytellers are fighters. Emily and Virginia are disabled mothers who also have disabled children. They have told us about the hundreds of pounds their families need to spend every week on extra costs.

And Sarah explained how she had to sleep separately to her husband for five years because her disabled daughter wouldn’t sleep alone.

Alice, the mother of two boys with autism, says writing about her experiences in a guide for other parents has given her strength. And disabled mum Marie has explained that being a small mum in a wheelchair has benefits most people wouldn’t think of.

Alice holding her son
Alice and one of her sons

The fight for independence

Disabled filmmaker Tom has told us what it’s been like to go from living at home to being at a transition service in the heart of the city he loves.

We’ve also shared Mandy’s incredible story about her 30-year battle to be heard. Staff caring for her thought she had no awareness of the outside world. When someone finally realised how much she understood, Mandy could start taking control of her life.

Barriers to finding work

Azar looking away from the camera
Azar struggled to find work after college

Our stories have highlighted the barriers disabled people can come up against when job-seeking. 20-year-old Azar struggled to get work after finishing college, but everything has now changed for him.

And Georgina writes about gaining the confidence to start volunteering and applying for jobs after 15 years out of the workforce.

Awkward moments

On Valentine’s Day Jennie Williams, the director of Enhance the UK told us how sex can be awkward when you’re hard of hearing. 22-year-old travel writer Emily revealed how her boyfriend googled ‘how to kiss a wheelchair user’ before asking her out.

“My personal favourite has to be ‘say you want to tell her a secret, then go for it’ with a winky face for added bonus points,” says Emily. “Luckily, he didn’t follow that advice.”

Jennie with her partner Jonno and a dog
Jennie and her partner Jonno

Get involved!

We still have 75 disabled peoples and families’ stories to share until the election on 7 May 2015. We are updating our 100 days, 100 stories page every day with our newest story, as well as sharing them on Twitter and Facebook.

You can also help us raise awareness by sharing a story on Facebook and re-tweeting with our hashtag #100days100stories.

If you would like to share your story as part of our campaign please email stories@scope.org.uk 

“It can be daunting having a child with additional needs but we love being parents”

Guest post from Louise, whose son Daniel is 10 years old and has focal epilepsy. This means that he has seizures, most of which happen at night. Louise is a Face 2 Face befriender in Coventry, here is their story.

Louise and DanielDaniel started showing signs of epilepsy when he was three years old. I remember reading him a bedtime story and I noticed that his mouth started twitching and he was dribbling. He became unresponsive and my husband and I didn’t know what to do. We had never seen anything like it before.

Luckily, it only lasted a few moments but it scared us. I took him to our GP who referred us to see a paediatrician, who didn’t think there was anything to be worried about.

Soon after Daniel had a major seizure so we rushed him to hospital and six hours later he was still fitting. I was terrified and it was one of the worst nights of my life. The seizures finally stopped and after more tests Daniel was diagnosed with epilepsy.

At first, it was difficult to explain to family and friends. Everyone reacted differently.

I felt we weren’t given enough medical advice and we were left to research Daniel’s condition on our own. As a mum you want to have all the answers and it’s hard when you don’t – it leaves you feeling guilty. All I needed was to speak to someone who wasn’t involved but knew what it was like.

Daniel’s seizures continued and were hard to control. When they start the first thing that happens is he loses the ability to talk. It’s scary because he can’t even tell you one is coming on. So we came up with a solution – we put cow bells around the house which he can ring if he feels something is wrong. Daniel knows that the bells are not toys and only uses them when he needs to.

Daniel also has dyspraxia and over flexible joints. Which helps explain why he has struggled with school over the years. Recently, an educational psychologist suggested that Daniel might be autistic too – which came as a big shock for us.

The school he is at now is supportive and most importantly Daniel is happy there. He has a good consultant and our family is learning to come to terms with all the different conditions he has.

It can be daunting having a child with additional needs but we love being parents.

Daniel is a kind, gentle boy who is well liked. He’s helpful to everyone and never ceases to amaze me. He sees the world in a beautiful and special way.

Louise supports parents as part of our new Face 2 Face service in Coventry, which launches today! Face 2 Face provides free emotional support for parents of disabled children, from other parents with similar experience. 

Another befriender in Coventry, Donna, has also written a blog for us about her story. Read Donna’s story

 

Toast – one word which holds so much meaning – Alice’s story

Alice wrote this blog in October 2014 after her first book TOAST: Autism in The Early Years was published. We are sharing it again as part of Learning Disability Week. 

When both of Alice’s sons were diagnosed with autism she had a lot of questions. Feeling alone and lost she set out to find answers. 

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. 

Scope Community Services turns one

Scope Community Services Birthday Cake

Recently I visited Scope’s Community Services in West Norfolk as they celebrated their first anniversary.

Sara Brown, who is the Community Organiser, matches volunteer befrienders to disabled people who would like to get more involved in their community. The service helps people to do things locally including accessing community activities, travelling independently, and making new friends.

Speaking to a number of people who had benefited from the service helped me to understand how they had gained in confidence from having a volunteer befriender. Tom, who attended the one year celebration event, having built his confidence, is now going out after school for the first time in ages.

The volunteers too said that they enjoyed making a difference to the lives of those they befriended. The age range of the volunteers was impressive with them ranging from those in their 20s to 60s.

Find out more about Scope Community Services for West Norfolk and our service in Nottingham.