“I wanted to know that the future was going to be okay.”

Menna, mother of Cerys who was born with Down’s Syndrome, talks about the lack of support, emotional and financial from birth onwards.  

I’m Menna, I am a single parent. When I found out I was pregnant, the relationship was over. I had no support and direct family support is minimal as my family live far away.

I didn’t know that Cerys was born with Down’s Syndrome until she was ten days old. The hospital just gave me a leaflet. No-one really discussed it with me. I was in a room by myself. The midwives were fine, but they didn’t know enough about Down’s Syndrome themselves to be able to discuss it with me. There was no one able to sit down with me.

We got referred to specialists to check her hearing and heart and everything else. I felt alone, there was nothing. I was just handed this baby and left alone. Obviously, being a new parent is scary in itself, without finding out that you have a disabled child. I was just left to get on with it.

The consultant we saw said that Cerys will possibly always have the mental age of 13. That was all she said really. There was no advice about her having Down’s Syndrome. There was nothing they could really tell me.

I couldn’t see a future for her

There is no disability in our family. I didn’t know anybody with a disability. I just remember thinking, I couldn’t see a future for her.

A young girl on a bed with her head resting in her hands and smiling at the camera
A young happy Cerys

They actually gave me a DVD to watch, which was no help whatsoever. It didn’t reassure me at all. In fact, it made me feel worse. The DVD was all about young children and toddlers, nothing about the future. I wanted to see older children and adults rather than babies. I had my baby and I wanted to know that the future was going to be okay. I needed a bit of reassurance really, which I didn’t get.

I just kept plodding on

There were no local support groups. I don’t drive. It made things hard. There are no support groups at all in my area.

I just kept plodding on. I did have a close friend who had a little boy, without a disability, who were quite close. Obviously, her experiences were different to mine.

You feel a bit vulnerable. Cerys was slower with everything. Things like eating solids, I couldn’t just give her solids because she would have choked. It was quite difficult. She was probably 18 months old before she started experimenting with food. I worked that out myself.

It’s been a case of trial and error. Obviously, I had friends who had children so I learnt from them, rather than specialist advice.

There is nothing when they are babies

When Cerys was a toddler, I started to have specialist support coming out to meet her for things like physiotherapy. Probably from about nine months old. In the early years, there is nobody.

Once you get the Disability Living Allowance [this is now Personal Independence Payment] you get other support like carer support. Financially there is nothing. If you have a disabled baby, there is nothing when they are babies.

A mum holding her baby and smiling and looking at the camera
Menna holding a new born Cerys

I applied for Disability Living Allowance for her when she was a baby but got refused. They said she was no different to any other baby. Although the hospital appointments begged to differ. There was no financial support until she was three.

I was advised not to go on the internet and not google because of the wrong advice I would be given. If I needed any advice, I would go through the Down’s Syndrome Association. If I had a specific problem, they were good.

Any support you can get, grab it

In the early years you should look for help if it’s out there. That’s what I lacked. Not getting the help and support from anybody. And if there are support groups, try them.

Any support you can get, grab it with both hands. I have noticed that as my daughter has gotten older, that the support has gotten better, but I still think that they do fail parents.

Cerys is beautiful inside and out

As a teenager, Cerys is no problem whatsoever. She has her moments, like any other teenager, but she is better than any other teenager.

She is amazing. She is funny. She is beautiful inside and out. She’s caring. She’s just the most beautiful teenager you could ever meet. You get the stroppy teenager, there is none of that. She is a lovely child. She always has been.

Cerys loves dancing. She loves posing. She had a couple of photoshoots. She is beautiful. I know you are biased as a parent, but so many people have said what a beautiful girl she is. She would love to go into something like that. I am looking into her going into modelling at the moment, but I don’t want to put her on the road to being rejected. Apart from that, she would love to be a model. She is amazing.

41 percent of families aren’t offered emotional support during their child’s diagnosis and become increasingly isolated. Donate today to help us provide vital services and support for families that need it most.

Half of disabled people feel excluded from society. Join our campaign to end this inequality and become a #DisabilityGamechanger

George’s Marvellous Bike Ride is a community event

Lesley, a family friend of George who had quadriplegic cerebral palsy, cycles in his memory every year.  Last year George’s Marvellous Bike Ride partnered with Scope to fundraise to help other families and raise awareness.

In this blog, Lesley talks about George who inspired this tremendous event and how much it means to get everyone’s support.

A boy and lady looking at the camera and smiling
George and his mum, Anna

George inspired those around him to enjoy life

Since 2012, Georges Marvellous Bike Ride has gone from strength to strength. All in memory of one incredible boy. George Hutchings had quadriplegic cerebral palsy and needed 24-hour care. He was unable to move around independently or speak. George was always happy and inspired those around him to enjoy life. We want to continue to help others like him to enhance their lives and relieve the pressure on their families.

This year, we chose Scope to partner with. We felt like Scope had the right ethos because it supports people like George. It was an easy choice. I saw the challenges and hardship George and his family faced.

It is a community event

We all decided to do a ride as Anna (George’s mum) used to do a lot of cycling with George. It has been a very big part of their lives.  It isn’t just a ride. It is a community event. We want to incorporate as many people and make it as accessible as possible.

George’s Marvellous Bike Ride consists of a mix of rides and routes aimed at families.  A lot of children take part.  One boy raised £700 and he had a broken arm. There are options for all riders of all abilities cycling distances from 11 miles to over 60 miles.

An event banner with cycles at the top and George's Marvellous Bike Ride text in the middle and georgesmarvellousbikeride.org.uk
George’s Marvellous Bike Ride banner

We’ve had the most riders since we started in 2012

Our small team consists of me, my husband (Rob), Anna, George’s uncle Nick and a few more friends. We want to keep the ride small and informal as we don’t want it to be a huge ride that will lose all its meaning.

It’s a very emotional day, as it’s about George. It’s an amazing way to remember George and celebrate his memory. It’s so nice to see everyone happy, especially this year as it was a bright sunny day.

Georges Marvellous bike ride people cycling
Cyclists getting ready to set off.

It really came home this year how much of a community event it is.  It was lovely to see everyone in their bright yellow t-shirts. We had 92 altogether, which is the most riders we’ve ever had since it started in 2012.

We’ve had one little supporter from the start called Amy, who gets everyone sorted on the day. She was 7 at the first ride and is 13 now and has helped us every year since.

We will continue to raise money for George.

We will carry on organising the bike ride and spread Georges story. When it’s frantic the morning of the event I always say I’m never going to do this again, but then when it’s over I’m always the first to ask what date we are doing it next year.

Scope is incredibly grateful to everyone involved in Georges Marvellous Bike Ride and to George himself for inspiring so many people to make a difference.

If you would like to raise money and organise your own bike ride or fundraising event for Scope to provide services for families like George’s find out how you can get involved on our website.

When Leo was born deaf, it was the start of big changes in our lives

Leo was born deaf. In this blog his mother, Keighley, shares how the right support is so important to parents of disabled children to ensure their children get the best start in life.

From the moment Leo’s test came back with no response, support started that day.

It took two to four weeks before Leo was officially diagnosed as being deaf.

Considering I am profoundly deaf, you would think I would have had at least thought about the possibility of my children being born deaf. I had grown up believing my deafness was caused by childhood illness.

Leo was born deaf. From the moment the lady told us that Leo’s new born screening hearing test had come back with no response, support started that day. We were given phone numbers for support lines, direct numbers to them and leaflets explaining the next steps. Along with the reassurance that a Teacher of the Deaf (TOD) would be in touch soon to arrange a home visit. I remember thinking how stupid! He is only four weeks old, why does he need a TOD? How wrong was I?

Three ladies have supported us and helped make Leo the person he is

As well as the TOD support we have a family support worker who’s been with us since Leo was six months old.  The third person is Leo’s speech and language lady therapist who again has been involved since Leo was six months old.

Our TOD is the person we turn to when we have question’s no matter how silly they may seem. She has been there to give recommendations on simple things.  Like toys to help support Leo’s listening skills.  To celebrate all Leo’s achievements which might seem silly to other people, but she knows how important they are to us.

Our family support worker has become part of the family.  In the early days she was at our house weekly.  Supporting Leo with his listening and waiting skills he needed to complete a hearing test.  Without these skills Leo would have had to undergo testing while sedated which carries its own risk. Leo will quite happily sit and undertake testing using all the skills he has learnt.

When Leo was about two years old, his speech and language therapist observed him from a distance, getting ready to step in when she felt was needed.  Working with Leo to get him ready for when he needed his implants.

These three ladies have supported us and helped make Leo the person he is. Without them Leo wouldn’t be the confident chatty little boy he is today.  Of course, there are many more people involved in his care.

Attending that first group was a turning point for me and has changed our life.

This journey has changed me, its broken me at times emotionally and physically.  Without the support of the people mentioned I don’t think I would be where I am today which would have affected Leo and his progress.

As well as teaching Leo important skills, my concerns and worries plus my hopes and dreams for my children are listened to.

When I was nervous to attend a playgroup for deaf children for the first time, I was offered support by someone coming along with me without me having to ask. I know if I didn’t have her there that day I would have not gone.

That first group was a turning point for me and has changed our life. We have met new friends, started learning British Sign Language, and got involved in other support groups.

I have now come to terms with my new identity.  I am Keighley. I’m deaf and proud. My son will grow up never questioning his identity.

If we didn’t have the support, Leo would have started falling behind without a doubt

Writing this, I have been trying to think how we would have coped if we didn’t have the support. I truly believe we wouldn’t be informed and confident to attend meetings and say what needs to be said rather than allow people who don’t know Leo tell us what is best for him.

Support workers have listened and answered the same questions 101 times about Leo’s schooling. Stuff that we have understood at appointments is explained in simpler terms. Different people involved in Leo’s care have been brought together to make sure everyone was on the same page.

I have been given the confidence to remove Leo from the nursery he was attending after I was having doubts about Leo’s needs not being meet.  I’ve had support in attending nursery meetings and help finding a new nursery.

These examples don’t even scratch the surface of the times support has been there to help.  Leo wouldn’t be getting any of the support he gets from both of his nurseries and he would have started falling behind without a doubt.

Leo surprisingly hasn’t fallen behind in any other areas of developments

Today Leo is coming up to a year of having implants.  He wears his processors all day long and can tell us when they are not working.  His speech is developing so fast thanks to his Speech and Language Therapy and all the support he had leading up to and after his implants.

Two smiling young boys and a man playing the snow

He attends two different nurseries, one local to us. He has the best support from his Key Worker, the TOD and Family Support Worker.  They all work together to allow Leo to assess sound. He will start attending school in September which has a hearing-impaired unit. His Education Health Care Plan is being prepared and, thanks to everyone’s hard work, we have plenty of evidence for the support Leo will need in school.

Leo surprisingly hasn’t fallen behind in any other areas of developments which sadly does happen when there is no support.  To think what would happen if we were without our support workers fills me with fear.

I was shocked and horrified when I found out that we are in a minority.  Most families don’t get this support because of cuts to funding!  I can truly say the support we have received has been fantastic.

41 percent of families aren’t offered emotional support during their child’s diagnosis and become increasingly isolated. Donate today to help us provide vital services and support for families that need it most.

Half of disabled people feel excluded from society. Join our campaign to end this inequality and become a #DisabilityGamechanger