I can’t imagine our lives without my hearing dog Ivy – #100days100stories

Claire can’t imagine life without her hearing dog Ivy. Here she tells her story as part of our 100 days, 100 stories campaign

When my son Nathan was nine he was diagnosed with Crohn’s disease. He was very poorly and would often be in severe pain during the night. I can’t wear my hearing implant at night, so I had specialist equipment to wake me should he need me. But as I am a restless sleeper, the vibrating pad would often end up on the floor.

The guilt I felt when waking up in the morning to find that my son had been crying all night and in too much pain to get out of bed to get me, was indescribable. I tried various equipment but nothing seemed to work. I was so scared of not waking up to my son that soon I stopped being able to sleep.

This continued for quite some time and the sleep deprivation had such an impact that I started having panic attacks and was unable to go to work.

A late diagnosis

At seven years old I was diagnosed as being profoundly deaf in my right ear and severely deaf in my left. Such a late diagnosis is uncommon nowadays thanks to the newborn screening programme.

I was fitted with a hearing aid in my left ear (I had no hearing at all in my right) which I absolutely hated, and life continued. By the time I was in my teens I was profoundly deaf in both ears, but still able to make use of the residual hearing I had to aid lip-reading.

Losing my hearing overnight 

In my mid twenties I lost the little bit of hearing I had left. This happened quickly (literally overnight) and unexpectedly.

Claire and Ivy
Claire and Ivy

The cause of this hearing loss was put down to a virus that I had picked up. The impact this had on me was immense.

I found lipreading much harder without my hearing aid and couldn’t understand what Nathan, who was four at the time, was saying to me.

The frustration and upset this caused us both was terrible. Eventually my son became better at using British Sign Language (BSL) and my lip-reading improved.

My confidence took a battering and initially I hated going out and about by myself. Given time things slowly improved.

About two years later I took the big step of having a cochlear implant (a surgically implanted electronic device to help with hearing). The struggle I had to make the decision to go ahead with the operation is a whole other blog in itself!

Getting Ivy changed our lives

A small black dog with red jacket

It was around this time that I got my hearing dog Ivy. To say she changed our lives is an understatement. Not only does she alert me to everyday sounds like the doorbell – but Nathan is also able to use the ‘call mum’ command should he need to. Ivy then wakes me up and leads me to Nathan.

I trust Ivy implicitly which gives me the peace of mind to be able to sleep. I simply don’t know what I would have done over the last few years without her.

I now have a partner who is hearing and able to hear Nathan, but Ivy is still an essential part of my family. She gives me confidence and I can’t imagine not having her. I am forever grateful to Hearing Dogs who trained and gave Ivy to me.

Claire is the Head of Training at disability charity Enhance the UK, and is Vice Chair of Bedfordshire Deaf Children’s Society. She works with teenagers as a communication support worker in colleges and tutors deaf teenagers one on one. 

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

I was chomping at the bit to get back into work – #100days100stories

Sean, 28, was supported by Scope into a placement at a camping supplies shop in north Wales, which became a permanent job. He and his employer, Tracy, are sharing their story as part of Scope’s 100 days, 100 stories campaign.

Sean says:Sean, a man in his late 20s, working behind a shop counter

The worst thing about being unemployed is not having a direction – not having a plan, not having anything to do. You find yourself in a lot of despair just trying to do the simplest things, and it’s very difficult.

I’d had to stop work because of illness. I’ve had depression since I was about seven years old, but I’d had a good spell of probably about 10 years where I had no problems at all. But then I just dipped and I needed some help.

In time I got the help required from my GP, and I felt ready to start working again probably about six to eight months after I had to stop.

I definitely knew that I was ready to get back in there – chomping at the bit, to be honest with you.

Getting into the work market was tough. The Jobcentre was quite poor. I think they were more keen on pushing me into any job than the right one.

I really couldn’t say how many jobs I applied for. I still have a big lever arch file of all the applications I’ve done.

Starting at the shop

After having an interview with Scope, I started at the shop in February of 2014.

I love my job. The people I work with are great. There’s quite a lot involved – serving customers, getting stock ordered, a lot of ICT work, and we do a lot of internet sales.

I also did a lot of training through Scope during the first few months,  including an ICT course which I’d had no qualifications in before.Sean, filling in paper work

I think I integrated really well here. They’ve given me a lot of confidence, because they’ve given me a lot of trust; a lot of faith has been put into me.

We’ve just started stocking and selling air rifles – Tracy and Neil didn’t know much about it, but with me being somebody who does go shooting, they thought he could use my knowledge to expand the business.

It’s nice working for somebody who puts faith in their employees, and it gave me a big morale boost to be trusted so much.

I’m feeling like I’m a part of this business, more than just an employee – I’m actually an active part in driving it forward, which makes you feel good about yourself.

Tracy says:Tracey, in the shop

The help that we got from Scope initially was so helpful. I think he was matched well with this place – there was obviously a lot of thought about what Sean likes doing. His adviser was only a phone call away if he ever needed anything.

We knew that if things didn’t work out with Sean we could say so, which means you’re not under so much pressure as a small business.

But it was always going to be that he would come on board with us – and that’s mainly because of the support that he’d got through Scope.

We don’t see any kind of disability as a stumbling block. As long as you can do the job it doesn’t matter, and if you can’t do something, just tell us.

I think most people’s families have been touched by some kind of disability. We certainly have – so if someone is struggling to get a job, then let’s give them an opportunity to get a foot on the ladder here. What better way of getting somebody back in?

It’s been invaluable for us, it really has. And I’m confident that even if we hadn’t been able to take Sean on, he would have walked into another job – his confidence was boosted literally overnight.

Group photos with Sean, Tracy and another man

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

A driver wouldn’t let me on the bus. When I complained, they offered me a job – #100days100stories

Guest post by Jean from London. Jean has Ehlers-Danlos syndrome, a painful condition which means she is prone to muscle tears and dislocated joints. She uses a wheelchair most of the time. Jean is an active campaigner for disability rights. She is sharing her story as part of our 100 days, 100 stories campaign.

At the beginning of 2013, I had to put a complaint in to a London bus company because a driver refused to deploy the ramp and let me on.

Instead of dismissing my complaint, the company actually asked me to go in and speak to the management about how disabled passengers should be treated.

Then they asked me to go in again and speak to the bus drivers – and after a couple of months they said, “How would you feel about us paying you for it?”

Jean holding the catBefore that, I hadn’t been able to work for seven years. Part of the time this was because I was unwell, but for a lot of the time it was because employers weren’t prepared to support my needs or make adaptations.

A couple of places I applied even offered to give me an interview, but then withdrew the offer because their offices weren’t wheelchair accessible. It was ridiculous.

Getting support

My new bosses have been really supportive, even offering to contribute towards a new reclining wheelchair, which I will need at work.

However, when I applied for funding from Access to Work for a support worker and a better wheelchair, I was rejected.

One of their reasons was that I wouldn’t be working enough hours, and would still need to claim benefits. But how am I supposed to build up my hours, and start to come off benefits, without the right level of support and equipment?

At the moment, my fiancé has to take me to work and act as my carer. It is difficult – we find it hard to balance his being my partner and being my employee. When he doesn’t do things how I want them, it feels very hard to tell him so.

Add in his own health issues, and wanting to pursue his own interests which have to constantly be put on a back burner, and it causes conflict in our private time.

I felt this was unfair so I appealed, and with the help of my MP I was successful in getting funding. I’m now in the process of finding a support worker, and Access to Work also paid towards the cost of the wheelchair and a small travel allowance.

My work

I’ve looked at how the company views and treats disabled passengers, and made some recommendations for improvements.

I’ve also run disability awareness training for bus drivers. We simulate various impairments – such as being blind or mobility impaired – and ask staff to try to move around inside the bus while it is in motion. It demonstrates how difficult travelling can be for disabled passengers.

I go to conferences and events, and we do a lot of work with mental health and learning disability charities.

One thing I’ve noticed is that disabled people will come and speak to me because they see me in a wheelchair. The fact that I have an understanding of what their situation might be seems to make a big difference.

My work is challenging, fun and rewarding, and it brings confidence and self-worth. I feel like I’m contributing something and making an improvement. Even though the majority of my income is still benefit-based, I am hoping that I can slowly build up my hours.

My employers saw something in me and built a new role around my abilities, and are investing quite heavily in me to ensure I have everything I need to fulfil my potential. I love it.

Read the rest of the stories in our 100 days, 100 stories campaign.

It’s been tough. But he’s our little boy and we love him. – #100days100stories

Maxine is a Scope sleep practitioner. She helps families figure out and practice sleep patterns that work for them. She talks about her experiences raising her disabled son George, who has congenital ataxia. She’s sharing her story as part of the 100 days, 100 stories campaign

George 2Thanks to Scope I’ve been able to get back to work and find the support I need to look after my disabled son George. It’s been difficult at times but I’m optimistic for the future.

We knew from when George was young that he wasn’t quite right. I’ve got six daughters and George was my first baby boy, so I thought he was just different to his sisters because he was a boy.

Once he got a little bit older things became a bit more apparent. We noticed that George couldn’t hold his own head, his head was wobbly and kept falling down to his chest and he didn’t open his left eye.

As a mum you know there’s something, you just don’t know what.

Once we went to the doctors things started happening quite quickly. We were referred to a pediatrician who told us at first that he had something called opsoclonus myoclonus which was curable. He told me that we had a chance of having a ‘normal’ little boy.

I came out with mixed feelings because I’d had George a year by this point. He couldn’t do much apart from lie down but he was my little boy. He was our George. I thought I could have this normal little boy but then I got upset because I thought I’d lose the little boy I’ve already got. It was really emotional. Like all mums I wanted a ‘normal’ boy but I didn’t want to lose this wonderful little personality that I’ve got already.

We later found out that they’d made a mistake with his diagnosis. A specialist we saw a bit later told us that his condition wasn’t curable and that they didn’t think he’d ever walk or talk.

Family reactions

We told George’s sisters who were all absolutely fine. They were so fine that I was worried they didn’t understand the situation! I had to sit one of his sisters down because she said that there’s nothing wrong with George. I asked her if she understood that her brother is disabled. She said: “Yes, why did you ask? I mean that there’s nothing wrong with him in my eyes”.

We celebrate

When we heard that he wouldn’t walk or talk our motto became – never say never. We weren’t in denial but we wanted to make his life as good as we can and push him as much as we can. And we do push him. We push him now and now he’s walking! We thank his school for that. We did a lot of work with him but there was one particular lady at the school who was determined he was going to walk. She walked him every day using a walking frame and after that the only way he would walk was holding on to you. He didn’t have the confidence to let go.

George 1Then one day at home, when he was in the lounge, he was clinging on to some furniture. I turned my back and then when I looked back he had walked across the lounge and stopped at the door. He then turned around, looked at me and went “haha!”. It was just a sound that came out but it was almost as if he knew what he’d done! At that point his dad pulled into the drive. His dad came in and he walked up to his dad. I don’t think I’ve cried so much in my whole life!

He was 7 years old. We celebrate things, but we celebrate them a lot later. Everything he does is a celebration.

It’s been hard

There was a time not too long ago when my husband was working away all week. That was hard at the time. George screams a lot and there have been times when this has pushed me to the end of my tether. I’ve been at breaking point before and phoned our social worker to beg for help. She just kept telling me that I was doing a great job and that everything was going to be fine. It just felt like nobody was listening to me.

I lost my temper once and told her that I can’t do this anymore. I need help. She turned around again to say I was doing a great job. I must admit at this point my language wasn’t the best and I said to her – you’re not living my life don’t tell me I’m doing a fantastic job when you’re not here. I’m not doing a fantastic job, I’m not coping, I need some help. At which point I hung up.

The thing that impacted us most was him not sleeping. He didn’t sleep. He got up at 3am every morning which was when my day would have to start.

Getting back to work

The reason I work is because of Scope. When I had George, I used to go to a group, a little singing group for other mums with disabled children.

There was a portage worker there, and one day she gave me a leaflet and said I should volunteer to become a Face to Face worker where you befriend other people in similar situations. She said you’d be really good at it because I’m supportive.

I got a lot out of being a befriender. It was really nice to go out and support other mums. I think I coped well with George’s diagnosis because I was a bit older. I thought how must it be for younger mums having a child with a disability. I’d already had 5 children.

Not long after this I trained to be a sleep practitioner. When I was doing the training George decided to start getting up at 3am in the morning. I didn’t know how bad sleep deprivation could be until George started getting up at 3am. Then I thought come on you can put this right, you’ve done the training, put it into practice. He was my first case! So I put a programme into place and within two and a half weeks he was sleeping. It really helped me have a really good understanding of a sleep problem.

In 2010 we got the funding to run the service as a proper paid for service and that’s when I went on to the payroll with Scope. It was nice to be working.

At the end of the day it’s really difficult being the parent of a child, any child, let alone a disabled child. It was really tough. But I’m now doing a job that I really love and I wouldn’t be doing it I hadn’t have had George, I thank him for that.

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

There’s more to me than meets the eye – #100days100stories

Sam recently wrote an open letter to the lady who tutted at her for using a disabled loo, which went viral.

This blog has now moved to our online community.

Join Sam on our online community where she explains why she’s started raising awareness for people living with an invisible disability.

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.

There was no disabled loo so I had to use a disposable barbecue! #EndTheAwkward #ThrowbackThursday

Personal questions, portaloos, and the dreaded ‘platform’: Kelly, 26, and her husband Jarath discuss the trials and tribulations of music festivals when one of you is disabled.

This week Kelly showed us how awkward it is getting high five’s from drunk people as part of Scope’s End the Awkward campaign, so we’re doing a #ThrowbackThursday to her awkward festival moments!

Kelly: I’ve got spinal muscular atrophy type 3. It’s a muscle wastage disorder. I always get ‘why are you in a wheelchair?’ from strangers. It’s annoying because it’s the most basic question you can ask. A lot of people assume I’ve had an accident. Because I’m confident and outgoing, they can’t believe that this is a natural thing – that I’ve always used a wheelchair.

Jarath and Kelly drinking tea at a music festivalJarath: At festivals, people have had a drink so they think it’s OK to ask personal questions – and we get a lot of personal questions. I tend to get creative: I told one bloke that Kelly fell out of a plane and someone else that she was run over by a combine harvester!

Kelly: One of the most annoying things is when people come over and tell me how much respect they have for me… simply because I’m at a festival. It’s not like I’m doing a parachute jump. I’m just having a life!

Dancing

Jarath: At Global, we were backstage dancing and more people were watching us dance than were watching the actual gig. They kept tapping Kelly and giving her high fives.

Kelly: People often try to dance with me and push Jarath out of the way, pretty much hitting him in the face with fags and beer bottles, to try and get to me. I just think ‘what are you doing? Have you got no respect?’

A selfie of Jarath and Kelly at a music festival

Jarath: People gravitate towards Kelly and don’t realise I’m with her. They think I’m her mate or carer – never her fiancé. At one festival, I’d helped Kelly up and we were having a dance. People kept telling me to put her down. I was like ‘look this is my missus, leave us alone!’

Kelly: It’s not all bad though. At Reading, we had this big pink duffle bag on the back of my chair and filled it with beer, gin, crisps and sweets. Contraband basically! We sailed past the security guards while other people were getting their bags checked.

The disabled viewing platform

Kelly: The platform is a stage at the back of a gig for disabled people. The idea is that you can see over the crowd. It’s really far back from all the action and there’s never any atmosphere. It’s rubbish.

Jarath: It’s also heavily policed by security guards – you feel like you’re being constantly watched. One time, we got caught with a beer on the platform and got kicked off. Seriously, how many people are having a cheeky beer at a festival but because we’re the ones on the platform, we got spotted.

Kelly: We moan about disabled facilities but at least most festivals try. There was nothing at Global when we went – no charging points, no platform, nothing. I complained to the organisers and ended up blagging us a place in the VIP section.
We asked if we could put our tent next to the guy doing airbrush tattoos because we knew he would have power. I ended up charging my electric wheelchair there every day. When you’re disabled, you have to be creative and find ways to make festivals work for you.

Toilets – or lack of them

Jarath: Once, Kelly got banned from using the disabled toilets at a festival because she couldn’t ‘prove’ she was disabled – apparently she didn’t have the right wristband!

Kelly: I couldn’t use the normal portaloos because of the steps up to them. I ended up having to use a disposable barbecue! We joke about it now – we joke a lot – but it ruined the festival for me.

Jarath: At another festival, we paid to use the VIP area but there were no disabled toilets. They obviously thought you don’t get disabled VIPs! Kelly kicked up a fuss and the best they could offer us was one free drink for the inconvenience. So she told the bar staff we were entitled to free drinks all day. Result!

Kelly: I kicked up such a fuss they ended up using a crane to lift a disabled portaloo into the VIP area. Suddenly we heard the beep beep beep of the crane reversing and looked up to see a disabled portaloo dangling above us. I don’t think the festival organisers will make that mistake again!

Read more awkward stories. If you’ve had a similar experience we would love to know about it! Submit your awkward stories, and we’ll publish our favourites on our blog and social media

5 things we’ve done to improve accessibility on the Scope website

In honour of our accreditation with Shaw Trust (yay!) and our website’s first birthday, Jonathan Ballinger, Scope’s Digital Developer has written for us about some of the things we did to improve the accessibility on our website that may not be obvious.

1. Green focus box

Snapshot of the Scope menu structure, with the Support and Information tab highlighted with a green border

Tabbing through a website can be an arduous task if the focus highlight is non-existent or hard to see. We picked a colour that you’ll rarely see on our site, and ensured that, when tab-focusing through the site, it’ll be crystal clear what you’re focusing on right now.

2. Rational heading structure throughout the content

Snapshot of the cerebral palsy page, showing two types of heading

Our fantastic content authors have gone through all the content from our old site, improving and tweaking it here and there. One of the important tweaks for accessibility was to ensure that headings in our support and information pages, such as this page for cerebral palsy, follow a rational, expected order. We have a single H1 for the title, and then go on to use H2s, H3s, and H4s on that page. This allows screen readers (and web browsers) to process the content effortlessly.

3. Responsive site

Snapshot of the Scope site menu while zoomed out, showing how it is laid out horizontally

However you view our site, 100% zoom or 300% zoom, on the desktop, we’ve got you covered. Our responsive design allows you to view the site on any device you have.

Snapshot of the Scope site menu while zoomed in, showing how it stacks

We paid careful thought to how pages looked when viewed on devices with smaller screens, adjusting where it was necessary.

Snapshot of the cerebral palsy contents block while zoomed out, showing how it is ordered in a grid layout

On smaller screens, we turned this into a responsive stack.

Snapshot of the cerebral palsy contents block while zoomed in, showing how it is a drop down

4. Accessible address lookup field

Due to the nature of our site, the ability to enter your address while filling out a form was one of the features we required. We investigated various services out there in order to try and find a fully accessible address lookup component we could drop in. We weren’t able to find one.

Animation of the automatic search functionality in the address lookup, showing how it can be controlled using the keyboard alone

So we made our own using the address matching API provided by Postcode Anywhere.

5. Keyboard-controllable tabs using ARIA

Animation of the ARIA-enabled tabs functionality on the donations page

We use tabs on occasion. They’re a good way to distinguish between two exclusive groups of information. However, we made sure they are accessible by ensuring that you can tab-navigate to them, and then switch between them using the arrow keys.

So there we have it, five of the many things we’ve done to improve the accessibility of our website. We’re constantly looking at how we can improve people’s experience of our site. If you’d like to find out more or have any suggestions, you can email us at digital@scope.org.uk.

My children and I have a condition that makes words move on the page – #100days100stories

Sinéad and her children have Irlen syndrome, a condition that affects the way the brain processes visual information. It’s a common condition – many people don’t realise they have it.  Sinéad has shared her story as part of our 100 days, 100 stories campaign

My two children and I have a condition that makes words move on the page. When I sit in front of a computer the screen seems to shakSinead, with dark hair and glassese in front of me. My son says the whole world is like a plate of wobbly jelly.

The most common name for this condition is Irlen syndrome but it also goes by Meares-Irlen syndrome, visual stress and scotopic sensitivity. It can exist as a condition by itself or alongside dyslexia.

Common difficulties include problems with reading and writing, over-sensitivity to light, problems differentiating between background and foreground in the environment, and a range of different physical effects caused by dealing with this, such as headaches, nausea, exhaustion.

Our experience of Irlen syndrome

My two children and myself all have Irlen symptoms. They affect us to different extents and in different ways.

My 10-year-old daughter finds the contrast between text and page the most difficult to manage.When she started using a coloured plastic sheet over the pages of her books, she went up three reading levels at school within a term. She also has coloured workbooks provided by the school, which she uses for her schoolwork.

Things that help upload

My eight-year-old son reads very well but likes to use a coloured sheet when there are harsh lighting conditions. He also finds writing on coloured workbooks much more comfortable.

The children respond differently to environmental conditions as well. My son says he has no problems with the class smartboard (a large interactive ‘board’ projected onto the wall of the classroom). However, he howls with pain if the general lighting conditions are too bright.

My daughter doesn’t seem to be too bothered by light, but he needs the background of the board changed so it isn’t white. This is easily done, and most of the children prefer the jollier colour.

I have terrible handwriting; not many people know this. I experience environmental symptoms the most – sensitivity to light, and movement in my vision between the foreground and background.

This means that for me, my tinted Irlen glasses provide the best relief. However, the lenses are a dark turquoise colour and I don’t like to use them too much in the office as my colleagues cannot see my eyes.glasses

On most occasions I actually use a green computer filter over my screen. This reduces headaches and makes it much easier for me to concentrate.

What can be done to help?

There are lots of adaptations that can be made, and many of them are free or readily available. For example:

  • Changing the background colour of the interactive whiteboard in the classroom
  • Using the minimum amount of artificial light in the classroom or workplace
  • Using computers and social media  to communicate instead of handwriting
  • Coloured or tinted exercise books, overlays, reading rulers and tinted wipe-boards

None of these adaptations are that expensive – many could be implemented in every school in the UK tomorrow at no additional cost.

Changing the background of the interactive whiteboard is as simple as changing the colour of a Word document. If budget allowed, they could even have a stack of coloured paper for the children who chose to use it.

I would ask every teacher parent, school governor, MP and councillor reading this article to go into your local school tomorrow and ask them to do at least two of these three things.

It’s likely to improve academic performance – and it could just save the school life of many undiagnosed children sitting and suffering in silence.

Have you experienced any of these symptoms yourself? Are there any other ideas you would recommend? Talk about it on Scope’s online community.

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

What the teachers told me about Dominic reduced me to tears

Guest post from Caroline White, a writer and speaker. Caroline’s son Seb made headlines when he became the first model with Down’s syndrome to star in a major UK TV ad. For National Sibling Day she’s written for us about Seb’s relationship with his brother Dominic.

The week that Seb was born is a bit of a blur to me. I can remember snippets but it was so fraught with emotions that it is hard to recall it with much clarity.

One thing I do remember very clearly is saying to Simon, my husband, how I wanted us to have more children. One of the reasons, I am ashamed to admit, was because I was feeling sad about Seb’s diagnosis of Down’s syndrome and the thought of going on to have a “normal” experience helped soften the blow. I also felt that having more children around would benefit Seb and I had visions of a busy bustling house. It helped me see the future a little brighter.

Falling more and more in love with Seb

I went on to fall pregnant fairly quickly. It was for all the wrong reasons and I look back and feel so sad that I was so desperate to have another baby instead of enjoying the precious one I already had.

I lost the baby at 11 weeks. I am not negating how tough it is for the many women who miscarry their pregnancies, and at the time I was devastated, but it turned out to be a positive thing. My body was emotionally and physically wrecked, not only from becoming a new mother, but also from the emotional turmoil and shock that came with the diagnosis. A few months later I lost another at about the same number of weeks.

Over time, Seb’s diagnosis became a much smaller part of him and I became less fixated about having another baby. I began to realise that I would be every bit fulfilled and enriched as a mother if Seb was the only child I ever had, although I did still like the idea of Seb having siblings around him. And that’s when I fell pregnant with his baby brother.

Along came Dominic

The day we brought Dominic home from hospital I remember thinking how enormous Seb had suddenly become. Two and a half years older, Seb’s little face looked so vulnerable and confused. I also carried with me guilt that I had felt so euphoric at Dominic’s birth, something that was missing with Seb.

I had the usual maternal worries – would they get on? Would Seb be jealous? The worries were magnified too. Would Dominic grow up to resent Seb? Would he be embarrassed of him? Would Dominic be bullied? I worried about the “burden” of Seb on Dominic’s little shoulders. I would never want Dominic to feel his wings were clipped or that he was responsible for Seb but at the same time I hoped he would feel a certain amount of responsibility and care about what he is up to. I worried (and still do) about when Simon and I are no longer here and Dominic would have no immediate family to talk things through or make joint decisions with.

And so, it seemed, overnight…..along came Polly. Seb’s little sister.
And from the minute he set eyes on her, he was besotted. I will never forget the first night she had with us at home, he crept out of bed in his pyjamas and I found him sitting next to her bouncy chair, tenderly reading a Peppa Pig book to her (whilst she was asleep).

Becoming great friends

Dominic, Seb and PollyAll three children are very close, particularly Seb and Dom. Just the other day someone said to me “they’re such great friends aren’t they?” and yes, they really are.

Far from resenting Seb, Dominic has the utmost respect for him. He looks up to him, he sees him as his big brother. He wants to include him in everything he does and misses him when he is not with him. If he makes anything at pre-school his first thought is how he wants to share it with Seb. Often he will say he can’t wait to tell Seb something about his day and when Seb has been told off he will sneak off to keep him company – even if the telling off is because he has been mean to Dominic. On a recent shopping trip, Seb was refusing to come with us and we pretended to go off without him – Dominic shrieked and refused to move too. He was visibly upset and stayed put with Seb.

There have been so many occasions too when Dominic has had to be very mature for his age. Seb has a tendency to run or scoot off – he seems to live in the here and now with no thought of consequence. It happened several times when Polly was a newborn baby. Post c-section, I was faced with asking a 2 year old Dominic to stand in charge of his little baby sister whilst I raced after Seb. He has never complained about it and just got on with it. There was also a trip to Longleat when Seb vanished. It is a long story, but 45 minutes of hysterical mother, like a scene from Eastenders, all witnessed by Dom – thankfully with a happy ending. It is something Dominic remembers today and, as a result, he always has his eyes fixed on Seb and will tell me as soon as it looks like he might be wandering off.

The “biggest heart”

A Dominic and Sethfew months ago it was Dominic’s pre-school parents evening. I was exhausted and almost didn’t go. It is not easy to park, it was dark and cold, I didn’t think they would tell me anything groundbreaking and I had a million reasons why I couldn’t face it. I made the effort to go though, because Dominic IS always overlooked. What the teachers told me completely took me aback.

They told me that his empathy levels are incredibly mature for a four-year-old. They said he will always stop and help anyone who needs it, that he cares about his peers and that he has the “biggest heart” in a four-year-old that they have ever seen. He always thinks of others and wants to share his experiences and belongings with everyone. The feedback reduced me to tears.

Dominic has seen me care for Seb and as a result he now looks out and cares for others too. I have unintentionally set a good example and I couldn’t be more proud.

Will Seb’s siblings grow to resent the extra attention that Seb naturally commands?

Seth and DominicWe have never told Dominic that Seb has Down’s syndrome. Unless he asks me, I don’t see we have any reason to tell him. Down’s syndrome is a medical diagnosis and, whilst it is useful in preparing health care and educational plans, I want Seb’s siblings to just see him as Seb. No pre-conceived ideas or assumptions. Just Seb.

I am not naïve enough to think that the “differences” between them won’t always go unnoticed and Dominic did take me aback a few months ago in the kitchen when he said “Seb talks funny, doesn’t he?”. Stumped for a response, I said “well, we are all different aren’t we? Some of us are good at running, like Seb, and some of us are good at talking, like you” and he turned to me and said “Maybe he was talking in Spanish, he’s good at Spanish”.

I think it all boils down to inclusion AGAIN.

By being included in our typical family unit, Dominic gets to see that Seb is a person, not a condition. He sees the bright, witty, bundle of energy that Seb is. A hard working, older brother with a fantastic sense of humour and an obsession with football. A person of equal value, that brings as much to our family as any of us. An important and key component in all our lives, that is human and real and not a paragraph in a text book or a group of outdated stereotypes.

And so it seems, yet again, my unnecessary fears about the future that stemmed from a diagnosis of Down’s syndrome have not become a reality. Seb continues to teach us all about life and equality, humanity and priorities, and see the whole world differently. Not one of us in this family, least of all his siblings, would swap a single thing about him.

You can follow Caroline on Twitter.