Tag Archives: families

Why I’m determined to make the world a better place for my daughter

The start of 2017 was a dark time for Christie. Her daughter Elise had just been diagnosed with cerebral palsy and without any support or information, Christie felt really alone. A year later, with a new positive outlook, she is a force for change. In 2018 she’s determined to keep making the world a better place for her daughter. In this blog, she shares their journey.

My daughter Elise was born prematurely and it was the worst time of my life. The doctors didn’t think she was going to make it but she did. I remember the first time she opened her eyes. After a month of being in hospital, we got to take her home and I was so happy.

The doctors said there hadn’t been any brain injury but she wasn’t developing as expected. So, after lots of meetings and nine months of waiting, we finally got a diagnosis of cerebral palsy, just before Christmas 2016.

I felt really alone

It was really overwhelming. I didn’t have any experience of disability and I thought it meant her life was over before it had even begun. I thought she’d have no future. I tried to be cheerful for her but my heart was breaking.

I didn’t want people to come over because I didn’t want questions. The first time I took her out in her wheelchair, I cried. I felt like everybody was staring at her. I had days where I just wanted to give up and lock us both away from the world.

That’s when I found out about Scope.

Christie holding up Elise in front of their Christmas tree

I’d been missing all the positives

I wanted to do everything I could for Elise so I called Scope’s helpline because I didn’t know where to start. They gave me so much information. I found out about what was available to us and the different equipment we could use. All these things have helped make life easier. But most importantly, Scope gave me so much hope.

They completely changed my perception of disability. It’s been a whole new life to get used to and I was just focusing on the negatives. Scope helped me to focus on the positives. I’d been missing them all.

You’ve just got to change the goal posts. Elise waving was a massive thing for us and, with her physio, she’s really building her strength up. She’s just got her Peppa Pig wheelchair which she loves and it’s given her so much independence – maybe too much as I recently found out in Asda when she kept wheeling off!

Christie on the sofa with Elise on her lap

I’m determined to change the world for Elise

I still worry every day about Elise’s future. I worry about people’s attitudes, I worry that she’ll want to join in with things but she won’t be able to. The world puts up so many barriers and you don’t realise it until you’re in that world. And it is a different world.

I’ve been sharing our story this past year and I want to keep going.  I feel less alone knowing that there is a community out there and people who care, people who’ve been in this situation.

We’re in a much better place this Christmas but life is still much harder than it needs to be. There should be more support but there’s not and accessibility is a big problem. Just because you have this diagnosis, doesn’t mean you don’t deserve a chance.

This year I want to keep changing attitudes about disability, I want to make things more accessible, I want to give Elise everything she needs – I’m determined that nothing’s going to stop her!

I started a Facebook page called Elise Smashed It. I want everyone to see what an amazing little girl Elise is. I hope it raises awareness and changes perceptions about disability. I want to help other parents too and show them that there is hope. It might not be the life you were expecting, but it’s not the end – it’s just the start of a different life and you’re not alone.

These are my goals and that’s what I’m going to focus on this year. I hope you’ll join me.

Too often, disabled people and their families struggle to access the support and information they need. Attitudes towards disability can be a problem too.

Christie shares her story because she wants to change that. Please help by getting involved with our What I Need To Say campaign and following Christie and Elise’s journey on their page Elise Smashed It. 

Author with Down’s Syndrome talks about his first book

Marcus Sikora, who is 25, has just published his first book for children: Black Day: The Monster Rock Band. We caught up with Marcus and his mother, Mardra who collaborated with him on the project, to find out more.

Brad is a paper boy who wants to be a rock star, so when he discovers the band Black Day playing in old Professor Hammer’s garage, he really wants to join. But the band’s monsters have a different idea and send him away, “No humans!” Brad sets out to change their minds…

That’s the story line behind Black Day, an illustrated children’s book brought to life by 25-year-old Marcus and his mother, Mardra, after Marcus started imagining himself as the lead singer of a monster band.book cover with website

“It started with the band,” Marcus explains.

“Years ago Marcus had a band in mind for himself called Gold Day,” says Mardra. “When he started talking about a band of monsters, who all lived in a house together, I asked him – ‘What’s the name of that band?’ and he said, ‘Black Day.’ I thought that was a perfect name!

Marcus and Mardra have been writing together for some time, setting Sundays aside to come up with new ideas for stories. But there was something about Black Day that kept bringing them back to it. “I knew there were some really great gems in this idea,” Mardra explains. “And more kept showing up as it developed.”

Working closely with the book’s illustrator, Noah Witchell, Marcus and Mardra spent over a year developing Black Day.  “Me and Mardra wrote the story,” says Marcus. “We all worked together. Noah and my drawings, then he animated himself.”

Mardra points out that everyone involved in the project followed Marcus’ lead. “It started with his great imaginative story, and Noah made sure to keep Marcus’ vision of the story and characters as a top priority,” she says.

Many of the characters in Black Day are based on people in Marcus’ own life. “I got Frankenstein based on Quinn (my dad), the drummer,” he says. “Brad also, Quinn’s best friend. And I’m the singer.

Peeking“Skeleton Pumpkin Head is my favourite. And my favorite part is, ‘This kid has a one track mind’.”

Skeleton Pumpkin Head is Marcus’ alter-ego, Mardra explains. “As with any story-teller, I can see Marcus in every character, but Skeleton Pumpkin Head is the one he identifies with the most.

Asked how he found the writing process, Marcus says, “Fast. Not hard.” Publishing is not for the faint of heart, but Marcus says it was worth all the hard work. “I love it when the people love the book so much. A lot!” he exclaims. He already has plans for a sequal. “Black Day Two through Five,” he says.

To celebrate Down’s Syndrome Awareness Week (20-26 March) we will be giving away a free copy of Black Day: The Monster Rock Band on our Twitter and Facebook. To enter, simply look out for the post and comment! 

(The prize draw closes on 26 March at 10am. The winners will be chosen at random after this date and notified via social media. Books can only be posted to addresses in the UK and no cash equivalent or alternative prizes will be offered. This prize draw is not associated with Facebook or Twitter).

 

Four things we’ve learned about hospital stays – #100days100stories

Guest post by Anna from Oxford. Anna works for Scope coordinating our Face 2 Face befriending service in Oxfordshire. She has a disabled daughter, Scarlett. Anna is sharing her story as part of our 100 days, 100 stories campaign.

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I’m not sure how many times we have been in hospital over the years.

My eight-year-old daughter Scarlett has a genetic condition which means she can’t produce hormones the body needs to deal with stress, illness or injury. This means a sickness bug is life-threatening for her. She also has autism and sensory issues, which means she doesn’t always realise when she’s unwell, or let us know about it.

Scarlett is going into hospital again for surgery in two weeks’ time, and it’s led me to reflect on some of the things we’ve learned about hospital stays…

Every child has unique challenges

Scarlett’s sensory issues mean she sometimes has extreme reactions to things that might seem harmless. For example, she has always hated having anaesthetic gel (‘magic cream’, in children’s hospital-speak) put on her arm before she has a blood test or an IV tube put in.

When she was a baby I thought it was because she was anticipating the pain, but now I know it’s because the feel of it makes her sick. She actually vomits looking at some creams just at the thought of it on her skin.

Scarlett and her two-year-old sister both looking through cameras, standing at the top of a hill
Scarlett with her little sister, Heidi

Explaining this at hospital can be hard – she has been told many times “Don’t worry, it doesn’t hurt”, but to Scarlett, it really does!

It’s hard work for us, too

I am up almost 24 hours a day when Scarlett is in hospital. During the night I’m often up every hour to comfort her, or help get her to cooperate. It’s difficult to even leave the ward for a cup of tea.

A lot of care is expected to come from us rather than the hospital staff. The nurses do an amazing job, but they are often very stretched, and I can’t imagine what would happen if every parent handed over all their care duties to them.

It is also really expensive! My husband Andrew, Scarlett’s stepdad, often has to take time off work, and there are things like parking and food to pay for. Parents and carers lose their DLA if the person they care for is in hospital for more than a week, and I think this is shocking.

Explaining things can be difficult

It can be hard to explain to Scarlett what’s happening, and particularly why she has to endure so much that her younger sister Heidi doesn’t.

I’m always on the look-out for children’s books about going to hospital that don’t involve ‘getting better’ at the end. I have seen lots about having tonsils out, or a broken leg, but Scarlett’s condition will never go away, which can be hard to explain.

Scarlett and Heidi on a toy tractor

I find the best approach is to be fairly honest and say that the medications, procedures, operations and masses of appointments are there so to give her the best chance of staying well.

…But it gets easier

Taking Scarlett to hospital, and seeing her looking awful, has become less of a big deal over the years, but it is always a reminder of how fragile she is.

Scarlett lying back on a sofa, stroking a cat
Scarlett with Dolly, one of our cats

When she was born, I remember being scared about taking her home because there was so much to remember. I was so anxious that I even bought a breathing monitor after a scary incident when I couldn’t wake Scarlett up.

Even now, I find myself looking at the doctors’ faces to see if they seem worried, and starting to panic – what if this is the time things don’t turn out okay?

But generally it has been far easier than I thought it would be in those early days. You adapt as a family, and Scarlett is very happy, lively and brave in dealing with the things life has thrown at her.

We’re into the final weeks of our 100 days, 100 stories campaign. Read the rest of the stories so far.

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.

Caring for my two sons as a disabled mum – #100days100stories

Emma has two children and works for a publishing company. She also has cerebral palsy, and she shared her experiences of pregnancy, childbirth and bringing up her children with us in September 2014. We’re republishing it here as part of our 100 days, 100 stories campaign.

I work full-time for a publishing company in London and am mum to two perfect little boys – Oscar, aged five, and Henry, one.

Emma and her sons smiling

I was diagnosed with cerebral palsy at the age of six months. It affects only my left side but I can walk quite easily unaided (better if I wear my splint).

It affects my gait, balance and the fine motor skills in my hand. I tell people it means I can only carry one cuppa at a time!

Having children

It didn’t even occur to me that I would have any difficulty having children. I had been brought up to believe – quite rightly – that I could achieve anything, so it was just the logical next step after I married my wonderful husband, Matthew.

My first pregnancy was fine until six months, when I developed symphysis pubis dysfunction (SPD). Suddenly walking was incredibly painful. Whether my condition played a part in developing SPD I’ll never know, but it didn’t make it any easier to cope with.

Emma's husband and son in the parkMy CP means I have a curved spine and because of this an epidural was ruled out. On top of this, Oscar was in the breech position so I had to have a caesarean section, but I recovered quickly and with no side effects.

During my second pregnancy, my CP affected me quite badly. I noticed that my balance was affected from quite early on, and I tripped a lot. I had four falls in my last eight weeks, and it was terrifying. But again, I had another healthy boy by c-section.

Looking after my boys

Caring for two active little boys is hard work for any mum. I don’t think about my CP every day – I just get on with things – but it does make life a little tougher.

Breast and bottle feeding was always my biggest challenge. When we were at home I could always find some way to get comfortable, but out and about I would need help.Emma with her sons

With Henry I breastfed exclusively until four months, but he then got too heavy and I found I began to favour one side over the other due to my physical limitations.

As they got bigger, I found it hard to carry them for long periods of time. I found this very hard emotionally, but I gradually realised that we could be close in other ways. I also think it helped them to be a little more independent.

“Mum’s cranky leg”

As my eldest, Oscar, got older, he started to notice and understand Mummy’s condition. He refers to it as my ‘cranky’ hand or leg!

He knows there are some things I find hard or will take longer to do, but he just accepts it as the norm, which is wonderful. There are few disabled children in his school and the teachers often comment on how considerate he is.

The age gap between my children, although not intentional, is a godsend – my elder son is such a help. I make sure I don’t ask too much of him, but he is more than happy to fetch and carry for me, and gets a real satisfaction from helping.

I’ve had cerebral palsy since birth so of course I have no other frame of reference, but I’m pretty sure any parent feels a little out of their depth sometimes. All I can say is that I feel very blessed to be mum to two healthy and happy children.

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