Tag Archives: Parent

I wish my dad had been able to see changing attitudes towards disability

Recent words from RJ Mitte and Alex Brooker have had a huge impact on Andy Bundock, whose late father was disabled.

In this guest blog he praises them for how they’ve been speaking about disability, creating acceptance and understanding that he wishes had been there in his dad’s lifetime.

During the Channel 4 coverage of the Paralympics in Rio, Claire Balding had a number of guest presenters with her. One of her co-hosts managed to explain exactly what Cerebral Palsy was in about three sentences. He managed to sum it up in such an eloquent and easy to understand manner. It was only afterwards that I found out that his name was RJ Mitte (apologies, I never got in to Breaking Bad).

I noticed his slight speech slur, this man clearly had Cerebral Palsy. It was very similar to my late father’s. It completely took me by surprise and I burst in to tears. Quite an extreme reaction you might be thinking. Here’s why.

It saddens me that my dad never got to see this

My initial reaction was “Yes, finally. Someone explaining it! And, on the telly.” Perhaps people will start to understand. I wanted turn to my dad and say “Look dad” but he wasn’t there, it didn’t happen in his lifetime. This saddened me so much, to the point of tears.

Not only was someone taking the time to explain a disability, there were disabled people presenting prime time TV and being accepted for who they are. My dad never got to see this. There was also the added emotion of missing my father. Hearing RJ speak in a similar manner just tipped me over the edge.

I contacted Channel Four and asked them if that clip was available so that I could share it on social media. I really wanted to share it and have more people understand. Unfortunately it wasn’t. But then Alex Brooker’s emotional outburst on The Last Leg happened.

On an episode of The Last Leg, Alex Brooker’s emotional outburst to the audience and to us at home had so much impact. He totally smashed it out of the park. When he drew that emotional breath at the end of it and got a hug from Josh Widdicome my heart went out to him.

Thankfully, this clip was available and when I went to share it on social media, I was so glad to see that so many of my friends had already shared it.

Alex did so much to make people understand what it is to be a disabled person that night. Only with more understanding can we move on together and gain more acceptance of people’s abilities as well as their disabilities.

My parents faced discrimination and ridicule

I grew up in a time where there was little or no mainstream understanding of cerebral palsy – what it was, how it affected people. Both of my parents have / had mild forms of the condition and were on the receiving end of discrimination and ridicule.

They were ‘advised’ not to have children, and it was nothing to do with their ability to conceive. Those bits and pieces were all working just fine. Their ability to raise a child was brought in to question. They also were asked to leave restaurants as they ‘were upsetting other diners’.

But my father was a real fighter. He stuck two fingers up at the world and said ‘I’ll show you’ every single day of this life. He said, I can make one of those and mine will be better.

The lack of understanding affected me too

A lack of understanding breeds fear, particularly in kids of school age so I was a target. I got in to fights and subsequently detention simply for protecting myself and my parents from nasty name calling and ridicule.

This upset me even more, the injustice of it all. I didn’t know how to handle it; I was a teenager struggling to deal with hormones, puberty and spots. But where was the protection from the school? I would very much like to think that this kind of behaviour is not tolerated in schools any more.

Andy's dad holding him as a toddler

My father was a brilliant dad

My father told me he was proud of me every day. He was a brilliant dad and I am so proud of his achievements as a father and as a person. He was an amazing photographer and inspired me to go into graphic design as a career. I got pretty good at it too, all down to his influence.

Alex Brooker mentioned his concern about how he would hold his baby should he and he wife be blessed with a child. This photo of my dad holding me was taken in about 1970. It is the only photo I have of the two of us – he was always the other side of the camera. You can’t keep a good man down, even when they are told that parenting probably wasn’t for them.

If you have a story you would like to share, get in touch with the Stories team.

I had falls with my baby daughter in my arms. It was very scary – #100days100stories

Imagine being trapped in your home, alone, knowing you can’t safely care for your two small children. This was Soña’s experience last year, when her funding for a support worker was cut overnight. She has shared her story in an interview as part of our 100 Days, 100 Stories campaign.

Soña, who has cerebral palsy, was struggling to care for her small daughters, three-year-old Natalie and Mary, aged one.

Proud mum smiling at her three-year-old daughter
Soña with her three-year-old daughter Natalie

A support worker visited two hours each day to help her get out of the house, lift Mary, and take Natalie to nursery. It made a big difference, but it just wasn’t enough. Soña’s condition was getting worse and she was worried for the safety of her children.

“I cannot use my left hand at all, and my left leg is a few inches shorter than my right which makes walking difficult,” says Soña. “I’d get so tired just trying to walk from place to place, and I would lose my balance.

“I couldn’t go out with the children alone – I’d end up overturning their pushchair, and it would be dangerous.”

Devastating news

When Soña asked for extra support from her local authority, she was given shocking news. An official explained there had been a mistake with her case – she wasn’t entitled to any funding any more.

Couple in their thirties talking at a table
Soña and her husband, Adam

The family’s support was cut overnight. Soña’s husband Adam works 14-hour shifts as a delivery driver, so she was left at home alone with the children every day.

“I knew that this was not right,” says Soña. “Mary was only about nine months old, and I was starting to have major back problems and spasms.

“I was having constant accidents – I would fall several times a day and get slammed against the door or the wall. I dropped Mary a number of times, which was very scary.”

Struggling on alone

Soña tried again and again to explain why she needed support, but was repeatedly ignored. One professional suggested that if Soña couldn’t cope, Adam should give up work and become her unpaid carer.

“There was no compassion whatsoever. You’re made to feel like you’re making something up. Why would you make it up?

“I felt very vulnerable, here by myself. I was really upset and stressed. All I wanted was to be able to take my children outside, but I was basically trapped in my own house.”

After months of frustration, Soña called Scope’s helpline and spoke to one of our advisors. Realising it was a complex case, the advisor referred her to Karin, a regional response worker.

“I was quite desperate by then,” Soña says. “My situation was getting worse, and I felt like no one wanted to help me.”

Taking control

Karin came to visit Soña at her home and they talked through what had happened. She drafted letters, contacted experts to ask for legal advice, and accompanied Soña to meetings with the authority.

Two women having a conversation on a sofa
Karin, a regional response worker from Scope, with Soña

“We worked together very closely. Karin was always there to help, or to find someone to help me. She constantly reassured me I was doing okay.

“It kept me going, basically. Everyone kept shutting me down, and I was feeling like: maybe I don’t deserve this. To know there is someone out there who actually does support you made a big difference.”

When Soña finally decided to take legal action, Karin helped her apply for legal aid. Soña found a solicitor to argue her case.

“It took six months, but the outcome was absolutely mind-boggling,” she says. “I ended up getting 30 hours’ worth of support a week, far more than before. I couldn’t believe it. I’d been told for so long that I didn’t need anything.

Sona and Mary with Dor, their support worker
Sona and Mary with Dor, their support worker

“Now my carer comes for six hours a day to help me get the girls ready for nursery. We can go out and do the shopping, or take Mary to an appointment. I don’t feel like I’m a prisoner in my own home.

“Without Karin, I would still be stuck at home by myself, struggling. You need support when you’re in this situation, you can’t do it alone.

“I was made to feel like getting social care was a privilege, but it’s not. I need it just so I can have a life.”

If you’ve had a similar experience with social care, you can make a difference by sharing your story as part of our 100 Days, 100 Stories campaign. Please contact us on  stories@scope.org.uk if you’d like to get involved.

“I want my son to know there’s nothing he can’t do” – #100days100stories

Guest post by Kelly from Harrogate. Kelly’s story made headlines when her 12-year-old son Joe, who has cerebral palsy, couldn’t go and see a film at his local cinema because there was no wheelchair access. Ironically, it was National Disability Access Day – and the film was The Theory of Everything, the biopic of Professor Stephen Hawking. Here she shares what happened next.Kelly with Joe sitting in his wheelchair in school uniform

Our local cinema is a listed building and they cannot adapt it to allow wheelchair access to all its screens – fair enough. But when I phoned them to ask if they could perhaps show the film on an accessible screen over the weekend, they said no.

I was so shocked and sad. I am a single mum and I have four other children, so it takes a lot of organising and planning to do anything at the best of times.

So I had a rant on Twitter, like you do these days, and the BBC picked it up. Suddenly my mobile phone was ringing all the time – the BBC Look North team wanted to speak with us, then the local radio stations and then Sky News! I couldn’t believe that all these people wanted to hear about what happened.

The journey I’ve been on

I think I have gone through every emotion possible since Joe was diagnosed at nine months old. I felt denial, anger and guilt. I didn’t want to face the fact that he was disabled.

But then when Joe was three, he started attending the nursery attached to a special school.

One day we were called to a meeting. We were put in a room, but Joe wasn’t there. Then the teacher came in and said, “Joe wanted to show you something”.

Then in came my little boy, wheeling himself along for the first time ever. I had always carried him before. Gosh, he was so proud, so pleased with himself!

I just started crying. The physiotherapist put her arms round me and said: “He needs to be in a chair. He needs to know that this is what he needs, and you have to help him.”

That day, for the first time ever, I used the word ‘disabled’. I saw that my boy would always have to face things I would never fully understand. But as his mother, I was going to make sure that he had access to everything that my other children had.

That’s the reason I decided to stand up and fight about the cinema. I felt I had to give my son a voice, and show him it’s okay to say: ‘I want what everyone else has, please’.

I want him to know that there’s nothing in this world you cannot do – you might just have to do it a bit differently.

Kelly and Joe at Paralympic stadium with the flame in the background
Visiting the Paralympics in 2012

Tackling the issue head-on

As a result of all this, I’m now in the process of setting up a website about accessibility in my area. It’s a review site for days out and attractions, and at the moment we’re concentrating on Leeds, Harrogate and York.

There’s nothing worse than getting in the car for a day out and then having issues with access, so we collect details about disabled access. It will also have a page of all the disabled-friendly clubs in the area.

Families also leave us reviews of places they have visited, so that people know how accessible it really is. Let’s face it – just because it has a ramp at the front door doesn’t mean it’s wheelchair-friendly!

We finally saw The Theory of Everything, and as we left the cinema Joe said:  “I can do whatever I want mum – look at Professor Hawking.” I was so proud.

Kelly shared her story as part of our 100 Days, 100 Stories project. If you’re a disabled person or a parent of a disabled child, email us at stories@scope.org.uk to share your story.

“It’s simple solutions that make all the difference”: Marie’s story

At three foot six and with brittle bone disease, Marie is constantly adapting to looking after her growing baby Mark. And Marie and her husband Dan are finding often it’s the simplest adaptations that make the biggest difference to family life.

Mark is nine months old now and we simply do not know where the time is going. Every day is magical and he brings us so much happiness. Mark has recently started feeding himself finger food and is really enjoying meal and snack times. He will walk over to me when he is in his walker to high five me, a new trick! It won’t be long before he is walking independently and we have already started moving things up, which is where the seat riser in my wheelchair comes in handy.

We recently had some building work done to improve our bungalow. When we bought our place four years ago we were refused any help with adaptations and alterations from the Disabled Facilities Grant.

Marie in a wheelchair, holding Mark, on their outside decking
Marie and Mark on their new outdoor decking

So we have had to save up for this work – and now the back end of our home is completely wheelchair friendly. I can now drive my chair out from our lounge straight onto the decking and then down into the garden, as we now have full level access. To keep costs down we used standard building materials, standard French windows and lots of inventiveness to make it all work. This now means Dan, Mark and I can make the most of the rest of the summer and start planning garden toys and sandpits and things for Mark next year as a toddler!

Also our local Remap charity (who are awesome) made me some ‘steps’ from plywood covered with soft foam and fabric, suitably sized to push up against our sofa. This very simple contraption now means I can climb from my wheelchair onto the sofa and then from the sofa independently get onto the floor to play with Mark. The ‘steps’ are then moved out of the way so Mark can’t climb up and down them, the cheeky little monkey that he is! Being able to get on and off the floor has been really good and Mark enjoys having mummy play on the floor too. Such a simple and elegant solution to one of life’s problems when you’re 3 foot 6 and can’t stand!

Marie sitting on a soft step next to a lounge
Marie on her new soft lounge steps

We’ve always found that it’s simple solutions like this that make all the difference. It just takes a bit of determination and lateral thinking and you can overcome most of life’s obstacles – that’s something having Mark is making me realise more and more.

Marie is blogging about being a disabled mum for Scope, and has been raising awareness by talking to Sunday People, That’s Life! magazine and Disability Horizons.

For simple tips on adapting your home, check out the new tips feature on our online community.

Working mother of a disabled child – a lifestyle choice? – #100days100stories

The Extra Costs Commission has been investigating the extra costs of disability and as they publish their interim report we want to share Hannah Postgates’s story which we first shared with you in September 2014.

For some parents and carers of disabled children, returning to work is a necessity. Hannah is a writer, speaker, campaigner and mother of two;  one with autism and complex learning disabilities. Here she talks about attitudes towards working mums as part of our 100 stories in 100 days campaign.

The emotions of returning to work for any mother are tough, but putting that aside just for a moment, for many disabled families, returning to work is a necessity, economically. In fact it is even more vital as the financial burden is so much greater; bringing up a child with a disability is forcing families to go without essentials and get into debt.

• 52 per cent of families with a disabled child are at risk of poverty.
• It costs three times more to raise a disabled child.
• One in seven families with a disabled child are going without food.
• Almost a quarter of families are going without heating.
• 41 per cent have fallen behind with bills, council tax, rent or mortgage.

(Contact a Family Counting the Costs 2012)

So where does this attitude, pervasive in so many circles, that working as the mother of a disabled child is somehow an indulgence, an advantage, a lifestyle choice, come from?

Well, from Local Authority (LA) staff for a start. From people on the frontline, working closely with families, all over the country; in Cambridge, London, Cornwall mothers are reporting attitudes like:

“Today, I was told by our LA that working, ‘is a lifestyle choice’ and I ‘choose to make my life difficult’.”

“My LA asked me, ‘Can’t you give up work because we can’t find your son a school?’”

“According to my LA apparently working is ‘my choice’ and I could ‘make my life easier by not working’.”

“I was told that returning to work was a lifestyle choice.”

“When I asked for respite, I have twice been told work is ‘respite’ and I choose to do it.”

How dare they? How dare they make sweeping assumptions about why we work? What makes work NOT a necessity? The main barrier to work for most mothers of children with disabilities is affordable appropriate, quality childcare. The battle for childcare is mammoth, exhausting, and perpetual.

Combining work and home is wrought with guilt, anxiety, shame for mothers like me – we want to work for our families and ourselves but are we letting our children down, perhaps we are being spoilt if we think we can have a job and be mother to a child with a disability? But yet why should we be left behind the equality movement? Setting up my own business has empowered me to say, “I do have a right to work!”

Work is a necessity for many of us, not only financially, but also emotionally, mentally and for the benefit of society. Yes, for society!
Society needs to wake up – without work, many families like ours are at risk of loosing their homes, suffering mental illness, family breakdown. What are the costs of that to society? Housing, sickness benefits, children’s services and more.

Instead, if we are able to work we contribute in financial ways; in tax to the Country’s coffers, but also as valuable, trained, qualified, experienced, skilled workers in many areas of industry, business, teaching, medicine and more.

We are a growing group of mothers and we are no longer staying invisible – share your story below or  tweet us.

You can read more about the lives of disabled people and their families in our  100 stories in 100 days campaign. You  can also chat to Hannah on Scope’s online community about any of the issues raised here.

 

Hope for heroes; disability and the befriending service with the Scope to help everyone

Jo Graham has written a blog about her interviews with parents from our Face 2 Face befriending service:

One by one, these women opened my eyes to the reality of life with, and for, a child with ADHD or ASD. A picture was painted of unrelenting vigilance and a mother’s relentless drive to keep her child safe from harm and to protect the family unit. There was self-consciousness of being stared at in public, the ready response of shame, or anticipation of a situation which would draw unwanted attention. One mother called it ‘the silent disease’ – there are no visual cues, just to outsiders a child who looks like they should know how to behave better, or a parent who should know how to parent better.

Read the full blog on nfpSynergy

Scope Face 2 Face Befrienders Scheme

In a new blog post from “Life With An Autistic Son”, a Dad shares the experience of receiving his son’s diagnosis.

Life with an Autistic Son

Scope-logoI can still vividly remember the feeling, three years ago, when I stepped out of the paediatrician’s room and back into a world that had changed forever. When I stepped inside, there was still the (remote) chance that our son was not autistic, that a diagnosis would not be made and that, given time, everything would work out the way we had planned it.

When the diagnosis came, and we stepped out into our new world, we were unprepared. Of course, I had thought at length about how things might be, how we would respond and how we would feel, as well as what it meant for my son. What I hadn’t counted on is how utterly isolated I would feel.

Perhaps if we had left with an information pack, a reading list or a leaflet I would have at least had something to (literally) cling onto. A starting point…

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Brighton welcomes our new support network for parents of disabled children

Guest post from Amanda Mortensen, Scope Face 2 Face Coordinator in Brighton & Hove.

On Wednesday we launched a new Face 2 Face parent support network for parents of disabled children in Brighton and Hove.

Group photo of befriends with a cake

Over 40 people attended the launch including many local parents who welcomed the service as a new source of support for families. The day celebrated the achievement of the 12-strong team of befrienders who have really bonded over the past two month’s intensive and innovative Face 2 Face training programme. Russell Evans, Area Manager, Scope South East, presented training certificates to the new team of befrienders.

Many professionals also attended including local authority leads for children’s disability services and Sue Shanks, lead councillor for children and young people in the city. Susan Brown, from the funders The People’s Health Trust also came along and said that the launch really brought the idea of Face 2 Face “to life”.

Diana Boyd, one of the new befrienders and mum to two sons with speech and language difficulties and epilepsy, said that she had really gained a lot from the intensive training programme and felt excited about being part of a team of befrienders offering such a special service to parents new to the process.

Fellow befriender Reza Ataie, dad of severely autistic twin girls added, “What a nice day! Such a big turn out and what a fantastic reunion.”  And befriender Sara Wilson, mum to a little girl with cerebral palsy added: “Fantastic launch, so proud to be a part of it.”

The launch was preceded by a free legal workshop from solicitors firm Pennington and barristers 7 Bedford Row. The legal team gave presentations on medical negligence and education.

The service is now open for referrals and the team will also be working on setting up bespoke parent-led groups over the coming months.

If you’d like more information please contact me by emailing amanda.mortensen@scope.org.uk or calling on 07436810608.