Tag Archives: Children and families

“Your child is not the diagnosis they’ve been given” – Chloe, the CP student blogger

30 under 30 logo

This story is part of 30 Under 30.

 

Chloe Tear an 18 year-old blogger who has mild cerebral palsy. She’s the creator of Life as a Cerebral Palsy student and also an Ambassador for CP Teens. 

As part of 30 Under 30 campaign, she has shared an open letter to parents of children with Cerebral Palsy.

I cannot begin to imagine what it is like to hear the words “your child has Cerebral Palsy”.

Initially, it’s probably expected that you will have thousands upon thousands of questions about expected progress, attainment, abilities / disabilities, meeting milestones and so much more. Now, if you have been in this situation, I expect you know that these questions cannot be answered in any great detail – with the vast majority left to play the ‘waiting game’ with approximations.

Like any ordinary parent, you may research Cerebral Palsy (CP) in the hope of finding these answers or at least a bit of support in this new unknown world for you and your child. Everything I can tell you is purely based on my experience over the last 18 years (as CP is unique to everyone and part of quite a large spectrum), but I hope it can at least give you a possible glimpse into the future: the highs, the lows and everything in between.

1. They will surprise you

Doctors have a way of airing on the side of caution and making predictions based on little information right from the start. However, people with CP are often determined to challenge these predictions which they have been given. I may not have received my CP diagnosis until the age of 7 but being 8 weeks premature made even surviving a matter of fighting the odds. At that moment in time, it would have been impossible to write the next 18 years and all the challenges which have come my way, but also all of the victories- because there has been plenty of them!

It may have taken longer to walk, run, ride a bike, tell the time but woe betide anyone who says I cannot do anything. Even if it may take them longer, I guess that can make it even more special when they get there. Your child will have their own unique milestones and their own victories, no matter how small they may seem.

Chloe in her wheelchair smiling and taking a selfie with a Minnie Mouse character

2. There will be frustration

I would be lying if I said it was all plain sailing – but isn’t that the case with everyone? The hospital appointments, the physiotherapy, the urge to fit in with peers. At times, it can be incredibly difficult and I can assure you that many tears were shed.

When I was younger I was such a girly girl, everything had to be pink and pretty- trainers and a splint didn’t really fit the look I was going for. All I wanted was nice pretty shoes. We spent hours in shoe shops (and even a few shoes were thrown in sheer anger as the ‘perfect’ pair of shoes wouldn’t fit over my newly cast AFO splint).

Or maybe the frustration will come from coming last at a sports day running event when all you wanted to do was win for once. People with CP are resilient, we have to be, but that doesn’t mean it’s all progress.

3. Family and friends are all the support they will need

The support that you get from friends and family can be fundamental. At the end of the day, we all need a little helping hand – some people just need a little more.  I have found that having friendships with other young people who have CP can be incredibly valuable. The opportunity to share similar experiences and to know you are not alone can certainly help when you are having a rough day. And by having other people with past experiences (who may even be older than you) can be a glimpse of how things might be. For example, I am currently planning university and speaking to other young people who are at university at has been really reassuring.

A black and white photo of two people walking away from the camera with Chloe in the middle in her wheelchair

4. They will be amazing at adapting

Who says that you have to do everything just like everybody else? From personal experience, I know that sometimes it is actually easier to do things in your own way – in order to get the same result as everyone else. This could be mastering tasks with one hand, like tying shoe laces or eating a meal.

Adapting is often part of each day and at times can be difficult to come up with solutions, but you do get there. For some people adapting can include the use of certain equipment in order to gain independence. From experience I know this can sometimes result in a love – hate relationship. However, it can allow loads more freedom and give you the ability to achieve much more – it might just take time to adjust.

5. Humour will get you through

Sometimes you just have to laugh, even if that is just so you don’t cry. Laugh at the fact that you have ended up on the floor – again! Or laugh at the fact you did something and might have looked a bit silly. Yes, at times this can be hard, and laughing isn’t always the answer, but it will certainly help.

“When you find humour in a difficult situation, you win” – I believe this is so true and certainly a quote to live by!

Chloe with lots of friends wearing Christmassy outfits and laughing

6. The diagnosis is a very small part of your child

Your child is not the diagnosis they’ve been given, they are not solely the label put on them. First and foremost, they are your child, who just happens to have Cerebral Palsy, just like they happen to have blue eyes or brown hair!

A diagnosis may seem like it is taking over at times but really it is only one piece of the thousand piece puzzle that makes up a child. Having Cerebral Palsy can open so many doors and opportunities, it can make your child unique in the best possible way. The diagnosis is what you make  of it, and if I was to pass on one piece of advice. It would be to turn those obstacles into opportunities, don’t look back and never ever put a limit on what you can achieve.

Chloe is sharing her story as part of our 30 Under 30 campaign. We are releasing one story a day throughout June from disabled people under 30 who are doing extraordinary things. Keep up to date with all of our new stories on our 30 under 30 page.

To read more from Chloe, visit her blog.

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

“Christmas can be one of the most difficult times for families”

Jackie O’Kelly has been a Scope Information and Support worker in the midlands for the last 20 years, supporting thousands of disabled people and families with advice and information. 

Christmas can be an especially hard time for disabled children and their families. Here, Jackie tells us how her invaluable advice made a life-changing difference to Jenny and her son Harry, who was diagnosed with cerebral palsy just weeks before Christmas. 

Thousands of families are expected to turn to Scope for support this Christmas. You can help make sure every family who contacts us receives the support they need by donating the Light up Christmas Appeal.

Two years ago a mum called Jenny got in touch with our Scope helpline as her young son Harry had just been diagnosed with cerebral palsy.

Obviously this was a worrying time for Jenny and her family. They had not been given any information to help them understand cerebral palsy, which is hugely complex, or how Harry might be affected in the future.

Jenny had a lot of questions and no idea what help the family might need to support Harry at home and at school, or how to go about getting this.

Jenny was finding it quite hard to explain Harry’s difficulties to other people and make them aware of the help that he needed.

How I worked with the family

I explained to Jenny about Harry’s cerebral palsy in the simplest of terms. I also sent her some information so she could keep re-reading it until she got a better understanding of his difficulties.

I also thought she could show this information to other people if they too were struggling to understand his cerebral palsy, such as teachers at his school and other family members.

We ended up talking about all sorts of other things that might be helpful to Harry, for example information on useful events that were coming up local to her.

Jackie, smiling for the cameraThe difficulties parents face

It is so difficult for parents of children like Harry to get this type of information, especially if their child goes to a mainstream school.

As a result many parents like Jenny end up feeling isolated and unsupported. Often they miss out on vital sources of help and support that could have made their lives and their child’s life so much easier.

If ever I now see something that might be of help to Harry or his family I always try to send it Jenny’s way. As with most other parents their journey is ongoing and different needs and issues will undoubtedly crop up along the way.

My work continues

Because of all of the recent changes to social care that have affected disabled people, I am receiving more and more requests from people who are often quite desperate about their situations.

They simply do not know where to go for help, as many local advice agencies who have been badly hit by the cuts have been closed.

I am currently supporting around 30 disabled people and families, with the numbers increasing all the time.

Christmas for disabled families

Christmas can be one of the most difficult times of year for disabled people and their families.

There is the sheer expense of it all as bills are at their highest. Also a lot of services quite simply shut down over this period, or run services that are so thin on the ground that all but the most urgent of cases can be dealt with.

I have seen this happen year on year and the stress it can create in families is enormous.

Thousands of families are expected to turn to Scope for support this Christmas, which is why we’re asking you to donate to our Light up Christmas appeal. With your help we can be there for every family who contacts us.

“I’m caring because the alternative was unthinkable”

Ann is one of an estimated 25,000 carers over the age of 65 who are bringing up grandchildren or other family members, because their own parents are unable to look after them. Here, she describes the impact this has had on her life.

My story began over 22 years ago when my eldest daughter was in her first year of Art College and had a psychotic episode. She never recovered and, after 22 years of being in hospitals and various hostels, she still suffers from mental ill health. This was a devastating experience for all the family.

17 years ago my daughter had a child – my granddaughter – and I became a double carer. My husband and I were still supporting our daughter and, as she was taken into hospital six days after the birth, we took on the responsibility of the new baby. My granddaughter was put on the ‘at risk register’ at birth as a consequence of my daughter’s mental health condition. She was assigned two social workers, one before the birth and another after the birth.

We were advised by the second social worker to take out a residence order to safeguard the welfare of our grandchild. We were not told it meant there would be no support whatsoever after this, as the child would then be our responsibility. The legal procedure cost us about a £1000 and a lot of emotional heartache, knowing we were taking on a role that should have been our daughter’s. We also felt a lot of pressure from the social worker as the alternative was to take our grandchild into care.

Meanwhile my husband and I were juggling caring for our granddaughter, working, caring for our younger daughter, visiting our eldest daughter in hospital daily and supporting her relationship with her own daughter with as many visits as we could. When my granddaughter was two, my husband of 33 years, left us. He said he wanted a new life which is hardly surprising given the life we had.

The last 22 years have had a huge impact on my life, physically, emotionally and financially. However despite the hardships my granddaughter has just finished secondary school and achieved 10 GSE’s plus a distinction in a BTEC music course. She plays football and was selected to be part of a centre of excellence. She has survived her difficult beginnings and is now thriving with an exciting future ahead of her.

The role of kinship carer

Kinship Care, Family and Friends Care or Connected Carers are all terms used by the social services to describe what I and many thousands of grandparent, siblings, aunts and uncles or even very close family friends are doing on a daily basis. We look after the children because we love them and know that the alternative of putting them into care is unthinkable.

It has been estimated there are about 300,000 children being cared for by other family members because the parents are unable to look after their children for a variety of reasons. The majority of those carers are, like myself, retired and living on pensions.

Once a residence order or a special guardianship order has been awarded, which are issued through the courts, we then take on the parental responsibility and more. Some grandparents are caring for four grandchildren, some have children who are disabled or who have been traumatised by their earlier experiences, and we even have great grandparents caring in their 80’s. It is estimated that around 25,000 family and friends carers are over 65 but this figure is probably greater than the estimation.

We meet the daily needs of the child, we keep them safe, we nurture them, we provide stability and love and give them a sense of still belonging to the family. We coordinate contact between parent and child where appropriate, and this can be a very difficult role especially when we are suffering the pain of knowing our own child has such overwhelming problems.

Statistically, children who are cared for within the family do much better than those in care. They may have experienced the same multiple adversities as children in care, but the benefits of remaining with their family help them overcome those traumas.

Sadly the role of kinship carers is often hidden and unrecognised. It has been estimated that kinship carers save the taxpayer £12 billion a year in care costs (if the children we look after were put into foster care). We campaign constantly for better support and recognition and some of our pleas are heard but there is still a long way to go to secure a better future for our children.

However despite all the problems and difficulties I would not change a thing. It has been a joy and a privilege to bring up my granddaughter and I would do it again a hundred times over.

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

Tips for a stress-free Halloween and bonfire night

The nights are drawing in, which means Halloween and Bonfire night are almost upon us. For some disabled children, it can be quite a stressful time of year, so we’ve put together some top tips from our online community.  

Be prepared

Have a calendar, and count down the days to Halloween with your child. If they like knowing as much as possible about everything, it can be really helpful for them to learn lots of facts about Halloween such as where it originated from, and why it is still celebrated today.

Any day can be Halloween!

My daughter gets scared of the costumes at Halloween, so I encourage her to dress up at any time of the year to help her understand about costumes and that dressing up doesn’t change the person underneath the outfit.

Gauge your child’s reactions

Always keep an eye on how your child is handling the situation, whether it’s Halloween or fireworks. Even if you have prepared for every possible scenario, they may still have a difficult time engaging in activities. Pay attention to their cues and if it’s all too much, it may be best to remove them from the situation and go home.

Distract with snacks and games

Familiar toys, games and snacks can provide comfort and distraction from over-stimulating sights, sounds and smells. These favourites can also come in handy if your child gets anxious while waiting for the fireworks to start.

Wheelchair friendly pumpkin

Daisy can’t go out but she loves to answer the door in costume and hand out sweets. Last year we carved a wheelchair symbol into her pumpkin.

Knowing what to expect

Whatever you’re planning this bonfire night, make sure your child knows what to expect. If your child responds to visual cues, try showing them a video of fireworks (with the volume turned down at first). Although it’s important they know what to expect, try not to go overboard. Sometimes too much anticipation can be just as overwhelming.

Lead by example

If you’re calm, your child is more likely to stay calm. If you start getting anxious, they are more likely to pick up on your cues.

Keep your clothes on

Some children with sensory issues may not like the feel of costumes – a lot of them can be quite synthetic and scratchy. Try letting them leave their own clothes on – or pyjamas – underneath.

Wheels of pumpkins

I have seen some great designs on Google. Sadly, I am somewhat lacking in the artistic skills department so I will be keeping it simple by turning the wheels on my daughter’s chair into giant pumpkins!

Keep your distance

View firework displays from a distance. There’s no reason you have to be right up close. Most displays are better viewed from a distance. Stand away from the crowds. If you are having fireworks at home, let your child watch from indoors where it is warm and they can enjoy the display without the loud noises.

Use headphones

A set of headphones can help block out loud noise and reduce the anxiety that people with sensory issues experience around fireworks. You could even play soothing music through them.

Let your child take the lead

Don’t force your child into participating in Halloween. Let them engage with it however they want to and at their own pace. They may never want to take part, and planning a different activity to do on that day and evening could be a much happier and calmer experience for all involved

Alternative mask

If your child doesn’t want to wear a masks try giving them one on a stick that they can hold in front of their face as and when they want to.

Adapt your child’s own clothes

If your child doesn’t like wearing an unfamiliar costume, make one using their own clothes, so they feel more comfortable. For example, take old leggings and a T-shirt and tear them to make a zombie costume.

These tips were all contributed by parents of disabled children. Find more great tips like these, and share your own on Scope’s online community.

5 facts everyone should know about cerebral palsy

Today is World Cerebral Palsy Awareness Day and Scope’s Helpline Manager Veronica Lynch is on our online community now answering your questions. Here are 5 facts about cerebral palsy she has put together, which you may or may not know.

1. Cerebral palsy is not an illness

Cerebral palsy is a condition caused by injury to the immature brain. The injury could be caused by an infection, an accident, lack of oxygen, problems at birth, or, in some cases, it may have a genetic link. However, there may be no obvious cause.

Smiling girl

2. Cerebral palsy can not be cured

Cerebral palsy is permanent. What can change is the effects this brain damage has on individuals. Treatments and therapies can improve muscle tone and practical ability.

Football

3.Cerebral palsy describes the condition

Terms such as ‘spasticity’, ‘diplegia’ and ‘hemiplegia’ refer to how the person’s body is affected. Spasticity means that muscles are very tight and can be painful and spasm. Diplegia means that two limbs (normally the legs) are affected. Hemiplegia means one side of the body is affected.

Children playing Kerplunk

4.Cerebral palsy is primarily physical

Depending on the location and severity of the damage to the brain, some people with cerebral palsy will have learning, cognitive or sensory impairments, but there are also lots of people who have above average intelligence, go to university and are employed in a variety of roles.

Girl in wheelchair

5. People do not die of cerebral palsy

The effects of cerebral palsy on someone’s body may cause further medical issues. For example, if they are profoundly affected and unable to maintain an upright sitting and standing posture, therefore using a wheelchair, they may be putting increased pressure on their heart and lungs. In general, and with the right support, people with cerebral palsy have the same life expectancy as anyone else.

Man in wheelchair at a barIf you would like further information and advice about cerebral palsy, Scope’s Helpline Manager Veronica Lynch is answering your questions on our online community now. Why not drop her a line!

6 steps to encourage healthy eating habits in disabled children

Deborah French is a cookery teacher and activity coordinator for disabled children and their families. She has a son on the autistic spectrum, a daughter with Down’s syndrome and young twins, and is the author of a new cookery book for disabled children.

This blog has now moved to our online community.

Join Deborah on our online community.

“My husband and I had to sleep separately”

We are currently running a sleep appeal. Has your child ever had problems sleeping? Here’s Sarah’s story.

Florence has autism and sensory processing disorder. For five years Florence wouldn’t sleep alone, meaning Sarah and her husband slept in separate beds so one of them could be with her. 

Florence always had sleep problems but they became worse as she grew older. My husband Nick and I had to sleep separately to guarantee some sleep for at least one of us. We had to stay in separate rooms because Nick was getting up at 6am to go to work and didn’t get back home until 8.30pm.

It was important from a family perspective that he at least got sleep on some nights so he could function at work. I could sleep when Florence was in pre-school, then Nick would take over at the weekends or nights when his next day was not so busy. We lived very strange lives.

We tried Florence sleeping in with her sister Isabella, because we thought she was scared to be on her own, but she still wanted us to stay with her until she went to sleep. She’d get off to sleep at 10.30pm and then be up again at 11.30pm. When she woke, she would be wide awake immediately and say she was bored.

Sarah with her husband and two daughters, sitting in a field
Sarah and her family

The toll of no sleep

It was difficult being in separate rooms because Nick is my true love. But part of Flo’s autism is her desire for routine and giving her that routine, at least, helped in some ways. However, because you’re under par having not slept, you have irrational thoughts all the time.

Because Nick and I were not sharing the same bed, I started to feel insecure about our relationship. If we weren’t the couple that we were it could have split us up. Fortunately our relationship is, and always has been, rock solid and it remains so.

Sarah, her husband and two daughters holding hands in a forest
Things started to change for Sarah and her family once she came across Sleep Solutions.

Discovering Sleep Solutions

I heard about Scope’s Sleep Solutions from a friend. I went to a workshop. It was ground-breaking for me, absolutely ground-breaking. Nick and I hadn’t had a night out in four years because we couldn’t get a babysitter that Flo would accept. We thought there was no end to it.

I came away from the Sleep Solutions workshop excited and empowered, and it wasn’t just me. I came home and shared everything I’d learned with Nick and we put it straight to work. The results were incredible.

Family life now

All of our lives have changed completely since this happened in June 2014. Florence sleeps well regularly and we still can’t believe it. I think I have just about caught up on my sleep after five years.

I don’t have bags under my eyes anymore. I have energy again and I feel like I’ve got fun in my life. I can spend time with my kids without being tired all the time. Family life is much better; Isabella can spend time on her own and Florence is much nicer to Isabella because she isn’t so tired all the time.

On last year’s summer holiday Nick and I spent every night of the two weeks in our own bed, with the girls in their room – that had never happened before!

Sarah is the face of our sleep appeal this summer.

Please donate to our sleep appeal so that more families of disabled children can get the support they need. 

Scope’s online community is a year old today!

“Happy Birthday to us … Happy Birthday to us …” We are celebrating the first anniversary of Scope’s online community, and what a year it’s been!

We launched our new community on 3 July 2014, as a place for people connected by disability to find support, share experiences and swap ideas. We wanted it to be a safe, friendly environment, where disabled people, families and professionals could talk. We also hoped it would become a lively forum for discussing topical issues and subjects that were important to disabled people.

We are pleased to say – one year on – it is all that and more! So, let’s take a look at some of our best bits:

From bed-wetting to sex

Emma holding a sign which says - Desperate for a good night's sleep? Ask me anythingWe’ve had several guest experts dropping into the community to answer your questions over the past year. In September, we invited two senior sleep advisors from Scope, who were literally inundated with posts. You can see some of the fantastic tips and advice they had to offer here.

This was closely followed by a Q&A from two bed-wetting advisors from ERIC (Education & Resources for Improving Childhood Continence), which was also very popular.Then we had two “non-expert sexperts” – journalist and broadcaster Mik Scarlet and Emily Yates from Enhance the UK’s Love Lounge, who joined us for a lively Q&A about sex and relationships.

Other popular discussions were hosted by Robert Pearce from Active Nation, who came in to talk about keeping fit, and Kat Dunn from Mind, who answered questions about mental health.People in wheelchairs doing a keep fit class Plus, we had a wonderful team of youth and community workers from Carers Trust hosting a chat about young carers, and a really useful Q&A about employment support for disabled people, led by Tracy Abbott from the Business Disability Forum and our very own pre-employment advisor, Michelle Parkes.

A warm welcome

In addition to our visiting experts, we are fortunate to have a number of regular community advisors, answering your questions in their specific area of expertise. They cover a range of specialisms, from speech and language therapy to assistive technology.

Woman with blonde hair sitting at a desk, looking at her smartphoneOver the past year, we have recruited several new advisors, including Debbie from Scope Helpline, who answers questions on housing and independent living, Richard Lamplough, who is our new employment advisor and  Michelle a Scope pre-employment advisor.

Plus, of course our wonderful community champions, who welcome new members and make them feel at home. Our community champions come from all walks of life – some are parents, some are professionals and some are disabled people. They have all volunteered their time to make sure the community is a safe, supportive place to be.

Let’s have a heated debate!

The community has also played host to some lively discussions in its first year, most notably after Lucy Britton’s blog about hidden disability. Sam CleasbyIt’s a topic that’s clearly dear to a lot of people’s hearts because when Sam Cleasby followed it up with a blog about her #MoreThanMeetsTheEye campaign it got people talking all over again. And when our very own community champion, Hannah Postgate blogged about being a working mother, it went straight to the top of our most-read blogs.

Here’s a tip

One of the most popular features on the online community is our dedicated tips section. Here you can search for tips on just about everything, from travel to technology. All the tips have been contributed by disabled people, parents and professionals, and new tips come in regularly.Lightbulb illustration

Our tips have featured far and wide, appearing in everything from The Guardian and Money Saving Expert to NHS Choices, and The School Run.

Over the past year, we’ve added several new tips sections, including Pregnancy and Parenthood, Dating and Sex, Employment, Employing a PA or Carer and Health and Fitness. We’d love to hear your’s too, so please do pass them on!

We love our new online community so much, we’ve even made a film about it! You can see our community film below. 

Why not join us for a slice of virtual birthday cake on the online community today! 

“Shopping with my son and wheelchair in tow is a challenge.”

Claire is a mum to Daniel who is six. Daniel has profound and multiple learning difficulties. Claire has discovered a great solution for taking her son on their weekly food shop and wants everyone to campaign for better trolley access.

As a mum, taking my son to the weekly shop is a really common thing. But, shopping with my son and wheelchair in tow is a challenge.

I really struggle with both the standard and disability trolleys that are available in most supermarkets. Neither provides my son Daniel with the trunk support that he needs. It is also impossible for me to lift him in to a standard trolley. He’s just too heavy and tall now.

This leaves me with very few options. I could do my weekly shopping online, leave Daniel at home while I go shopping, or settle for buying what I can carry as I push his wheelchair.

I am sure that this is a familiar story to many parents of disabled children up and down the country. All of this changed for me when Sainsbury’s rolled out the GoTo Shop trolley to 650 of its larger stores.

The GoTo Shop is an adapted trolley for disabled children that provides extra postural and head support and a secure five-point harness. The GoTo Shop Trolley keeps Daniel safe and secure on our weekly shop.

The GoTo Shop Trolley has been a revelation for us, it makes life so much easier and Daniel actually really enjoys our shopping trips.

I think every family with this a disabled child should have the opportunity to use a GoTo Shop Trolley, this is the reason why I became a GoTo Shop Trolley Champion.

I am very lucky I have two Sainsbury’s stores near to me, but I like having choice. I love collecting my Tesco Clubcard Points, you can’t beat the Asda Mother and Baby Events, Marks and Spencer for little treats and Lidl fruit and veg every time. So you see, I’d like every supermarket in the UK and Ireland to have a GoTo Shop Trolley.

If you’re looking for a supermarket with GoTo Shop Trolleys, you can use the Firefly Finder App.

How to get involved

If like me you’re a parent of a disabled child, who would love to have the option of shopping where and when you want to, then we need to work together to tell every supermarket about the difference a GoTo Shop Trolley can make to our lives.

All you have to do is print out and add your name to this leaflet (PDF) and hand it in to your local supermarket managers.

Let’s raise awareness of the challenges we face in our daily lives as parents of disabled children. By showing how simple solutions can make a huge difference to families like ours we can encourage all our supermarkets to provide GoTo Shop Trolleys.

If you’re not a parent or carer of a disabled child, don’t worry! You can still get involved. Support the #GoToShop Trolley in #EverySupermarket by using our ‘Friends of’ leaflet (PDF).

You can read more about the Firefly Garden GoTo Shop Campaign on their website.