Tag Archives: Face 2 Face

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’ve already got four referrals!” New befriending services open

Susan Shingler works as a Service Development Manager for Scope. Part of her work has included opening two new Face 2 Face befriending services in Wales. Today she writes about these two new services and what they hope to offer.

Over the last week, I have helped launch two new Face 2 Face services in Conwy & Denbighshire and Anglesey, Wales.

I would say the launches were incredibly successful. Loads of local organisations and service providers came along. I’ve heard from many organisations that these new Face 2 Face services in North Wales will really benefit them.

At the launches, we got the chance to present the new befrienders/parents their training certificates. They also received their new official befriender name badges. They were all really happy to complete their training and were looking forward to helping out other parents.

Here’s some of the great feedback from parents and befrienders alike:

Beckie Mann: “After diagnosis, you try to find out what ‘help’ is available. No one really helps you, but we want to help support [parents] as much as we can.”

Lucy Williams: “I wanted somebody like a befriender after my son was born. Since he was a few months old, I’ve wanted to help other parents so I jumped at the chance to be part of Face2Face.”

Goretti Chilton: “I felt bombarded with all of it at once and I didn’t remember any information given afterwards. I could have really done with a befriender then.”

Gina Stevenson: “What we want to do is make a difference to parents who are going through what we’ve been through. It’s a lonely and emotional period in your life that we can relate to and empathise with.”

Kathryn Elsmore: “Sometimes you feel that no one could possibly understand but there are some of us, with all different experiences, who do understand.”

Now that they’ve opened, let’s hope they keep growing!

As for myself, I’ve been overwhelmed by the response over the past few days and I couldn’t have done with without Sharon Bateman and the Createasmile charity for seeing the potential of Face 2 Face and working with us to make it happen.

And of course, we’re eternally grateful to our parent befrienders, who make the service what it is.

Now that befrienders have given their valuable time to help someone who’s been in the same shoes, our aim is to grow the service in North Wales.

We’ve already received four referrals! So hopefully we will continue to grow.

We’re always looking for befrienders across England and Wales to meet with other parents of children with disabilities for emotional and practical support. Become a befriender today.

“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.

My daughter cannot speak, but we communicate in so many ways – #100days100stories

Guest post by Amanda, who is coordinator of Scope’s Face 2 Face befriending service in Brighton. Amanda’s daughter Livvy (below) has very complex impairments and does not communicate verbally. Amanda has shared her story as part of our 100 days, 100 stories campaign.

Head and shoulders shot of Livvy, looking down

One of the first questions people ask me when they meet my amazing 14-year-old daughter Livvy is, “Does she talk?”

Well, Livvy has no spoken language – she is ‘preverbal’. But, as we have learnt, there’s more to communication than the words we say.

I remember in the early days being so desperate to hear her voice. She babbled on cue at six months, but after an ear infection at eight months, she became eerily silent.

At first, we suspected her lack of communication was down to glue ear and that she couldn’t hear us, but after two grommet operations the words still didn’t come.

Livvy wasn’t playing social communication games such as peekaboo. She didn’t wave or clap. We spent hours with an inspirational speech therapist – she virtually stood on her head to get Livvy to engage, but it was very difficult.

Livvy with her brother Harry
Livvy with her brother Harry

Livvy then went through a stage of saying the word ‘more’ in a low, drawn-out way. You could sense the effort it took to push the word out. She would over-generalise this word, using it for everything.

And then, one day, she stopped, and we haven’t heard any words since.

Body language

But so much of our communication is non-verbal. Livvy’s body language is key to us understanding her mood, and she uses it to express choices or even an opinion.

This can be very subtle – a sideways glance, or a brief movement of her arm. She lets us know that she would like to get out of her wheelchair by moving her legs and arms and pushing on the sides.

Livvy can express pleasure by laughing, or annoyance with a low, irritated growl. She lets us know she is upset or doesn’t want to do something by raising the intensity of her vocalisation, or using a deeper tone of voice.

Livvy smiling at the camera

She most definitely recognises voices, and will turn to familiar people. I remember a few years ago rushing up to school as Livvy was not well after a very severe seizure.

Staff had struggled to calm her down and Livvy was pacing round the room, very agitated. I walked in and she immediately calmed down. It was a really memorable moment for me.

Livvy also used PECS (Picture Exchange Communication System) for several years before her epilepsy became so severe that it was too demanding.

We felt the power of this was that she realised she was sending a message to somebody else – she was having a two-way exchange, the very core of a conversation. We’re now looking at eye gaze technology as a way for Livvy to make choices.

Livvy knows she is heard

We chat away to Livvy constantly. We have no sense of how much she understands, so it is important to tell her as much as possible out of respect.

Family photo of Livvy, her brother Harry and dad Neil, smiling at the camera
Livvy with her dad Neil and brother Harry

We use intonation to give her a sense of what we are saying. We get close to her, we sit with her, I put my face very close to hers and tell her I love her. She cannot say it back but, very subtly, she will often smile.

Livvy knows that she is loved, that she is valued, that she is heard.

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

Read tips from our online community on non-verbal communication.

Coventry welcomes our new Face 2 Face service

(Pictures by (c) Jon Mullis/Bullivant Media 2015)

Last week we launched a new Face 2 Face service in Coventry. We shared the stories of two befrienders – Donna and Louise. During the event we asked attendees to share their hopes for the service. Here are some of our favourites:

“May the parents get the help they need and deserve. Go Face 2 Face Coventry!”

“All the best for the new Face 2 Face project in Coventry. It’s very exciting to see it taking off in the area – a very needed and worthwhile service.”

“A friend when in need is a friend indeed! Good luck for a successful future.”

“Through the launch of this service that no parent or carer of a disabled child feels isolated or overwhelmed by emotions but can receive the help they need to move forward.”

“Welcome to Face 2 Face and your befrienders. The support that they offer will be invaluable to parents in the area. As a parent of adults with hidden disabilities, I recognise the isolation and confusion – your volunteer will give much valuable support. Thank you!”

“Welcome to Coventry you are a necessary and important organisation doing a wonderful job. As the Children’s Champion for Coventry I would like you to know my door is always open to you, should my support be needed.”

face2face1

Local groups and the council also came out in support:

“A much needed service for Coventry Parents… a big welcome” – The Special Educational Needs and Disability Information, Advice and Support Service (SENDIASS)

“Hope the future helps parents feel that they are not isolated and have nothing to feel ashamed or embarrassed about and that they should be very proud and feel special that they have been put into an unknown situation but have a beautiful child. This is a brilliant service. Good luck” – Young Carers Service.

“Good luck with the new Face 2 Face service” – Shine Charity

“Looking forward to working with you all in the future!” – RNIB Three Spires Academy

“I think your service will be so valuable in Coventry. So many parents need support, and ask what support is out there for them. Good Luck” – CEREBRA

Find out more about Face 2 Face in Coventry.

“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

 

Innovation and co–creation at Scope

In Scope’s Innovation department, running projects involves testing early and often, and having the flexibility to change or even abandon ideas. In a guest post from Lindsey Caplan, she talks about how they’re testing a new innovation process:

At the start of October, my colleague Suzi and I had the opportunity to pilot the first stage of Co.Creator, a model for innovation. Zevae Zaheer developed the model and acts as a co-founder on many projects.

We were asked us to explore ways that we could enhance our Face 2 Face parent befriending service to expand its reach to people who don’t live near an existing service. She wanted us to see if we could develop our existing Face 2 Face online service to make use of social media and appeal to more people. The idea was that by combining our existing service with a digital offer, we could reach more parents and reduce costs.

Zevae‘s role as a co-founder was to guide us through various processes, test our hypotheses (guesses!) and help us identify possible solutions. We had an hour-long session with him each week. We all work in different parts of the country, so met online via tools like Skype, Google Hangouts and GoToMeeting, which meant that we could all see and hear each other. We both felt a bit apprehensive about meeting in this way but were surprised at how quickly we got used to it. It is possible to build great rapport during virtual meetings and we only all met in person at the end of the eight weeks!

The next challenge we both faced was getting our heads around the bamboozling language of innovation. Here’s a quick run down of some jargon:

Innovation Canvas – business information about a solution, including resources, funding sources and expected change.

Customer Script – customer responses to our hypothesis – is what we think what they think?

Value Proposition – the value that a customer could gain from our solution.

Pretotype – a quick, cheap test to check whether a breakthrough innovation appeals to its market.

Once we had mastered that, we were flying…literally, the pace was fast! Learning consisted of lots of reading, researching, watching various lectures online and ‘getting out of the building’. This means exactly what it says – not just sitting at a desk forming our own conclusions but actually going out and talking to the people who would be using our service.

We used Innovation Canvases to organise our thoughts and tell us who our customers were and then we created Customer Scripts. The scripts were useful in tailoring and framing our questions to ensure we were asking the right questions of the right people about the right things. The Value Propositions evolved from these conversations and helped us to come up with Pretotypes in the form of mocked up web pages that we then tested with customers.

At every stage, Zevae offered us support, guidance, encouragement and most of all, allowed us the freedom to think creatively and to not be afraid to pitch ideas, no matter how outlandish they seemed. We learned not to fall in love with our ideas and that it was OK to kill them off, if our research proved that we were on the wrong track.

This way of learning was a welcome and unique experience. Whilst there were challenging times – juggling this extra work with our day jobs and asking last minute favours of colleagues – the exciting moments we experienced when we stumbled across some fantastic and possible solutions made up for it! It’s great to now look at what we achieved, share learning and think about changes that could smooth the experience within Scope. We are looking forward to the next eight week ‘Solution and Scale’ stage of Co.Creator, where we expand the project team, develop and test one of the ideas we have come up with for real. Watch this space!

Scope’s 2014 highlights

2014 has been a really exciting year for Scope – full of awkward, nostalgic, sexy and some just Breaking Bad moments. We’ve rounded up a selection of just a few of the most memorable. Let’s hope 2015 is just as eventful!

Name change

We celebrated 20 years since we changed our name
from The Spastics Society to Scope, with a Parliamentary reception. We also looked at how life has changed for disabled people in that time.

The extra costs of disability

The Price is Wrong game show bannerCan an adapted BMX for a disabled child really cost four times the amount of the average child’s bike? Well yes, it can – and that kind of shocking fact is why you all got so involved with our Price is Wrong campaign and 550 challenge, to raise awareness of the extra costs that disabled people and their families face for everyday items.

Top films

Man bending over to talk to a wheelchair userOur End the Awkward adverts featuring Alex Brooker got almost 10 million views! They helped us to raise awareness of the fact that 2/3 people feel awkward when talking to a disabled person, mostly because they don’t want to offend or are scared of coming across as patronising. But we can all get over it!

Disabled model taking off his clothes in Scope charity shopThis year, our Strip for Scope film shocked everyone with a cheeky play on the sexy Levi’s Launderette advert, featuring disabled model, Jack Eyers. It was our most successful stock campaign –  we received over 1.2 million donated items to our shops.

We also created a film featuring disabled people talking about what the social model of disability means to them, the confidence and liberation it gives them – and how it can encourage everyone to think differently about what an inclusive society really looks like.

Face 2 Face befrienders

Two parents talking in a kitchen over a cup of teaWe were delighted to open new Face 2 Face befriending services in Oxford, Coventry, Lewisham, and three London locations – Islington, Waltham Forest and Redbridge, and Newham and Tower Hamlets. It means loads more parents with disabled children can get the vital emotional support they need, so they don’t feel like they have to cope alone.

Support and information

Our helpline staff have expanded on their lead roles in specialist areas, so they can give more thorough advice to people who need it, and share their knowledge within the team. The areas cover cerebral palsy, social care, welfare benefits, finance and housing, disability equipment and provision, early years, employment, and special educational needs. We also launched a new online community to reach even more people.

Get on your bike

Not only did over 4,000 people take up an events challenge for Scope this year, but we were thrilled to find out that we’ll be the official charity partner of the Prudential RideLondon–Surrey 100 for 2015. It’s worth a whopping £315,000 to Scope and means we have over 600 places for Scope participants.

New friendsRJ Mitte posing for a photo with a young disabled girl in wheelchair

And last but not least, we were very chuffed to welcome RJ Mitte, aka Walt Junior from the hit US drama Breaking Bad to Scope. He has cerebral palsy, but he’s never let it hold him back. He spoke to some young disabled people who are currently on our employment course, First Impressions, First Experiences, to tell them how he started his career.

What have we missed? If you’re part of Scope – what have been the highlights of your year?

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.