Tag Archives: Autism

My role on Holby City helps change attitudes about autism – Jules

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This story is part of 30 Under 30.

 

Jules is an actor and a regular on Holby City. He also happens to have Asperger syndrome, which is a form of autism.

As part of 30 Under 30, we chatted to him about acting, attitudes and how Access All Areas helped him break into the industry.

My love of acting came from watching a lot of Steve Martin movies which made me feel really good. I also loved going to the theatre and the cinema. I watched lots of films and always thought I’d like to do something like that. Acting made me feel good about myself. I think that really inspired me.

I did a course through Access All Areas, who also now act as my agent. I made some good friends during that time and it was a really good experience because it helped my acting. I improved so much. It meant I could get to the next level.

Landing a role on Holby City

I got an audition thanks to Access All Areas who also now act as my agent. I was fabulous (as always!) and I passed the audition with flying colours. It was very challenging at the beginning because I was walking into something completely new. As the months went on I became comfortable and settled in well and I actually really like it now. I think I’ve come a long way in the last year. I always jump out of bed with enthusiasm, even though I’m leaving at half 6 in the morning.

I play Jason Haynes. He has a different type of Asperger’s to myself. I think he’s a lot geekier than I am. He’s a very nice man but he lacks confidence. I feel like I’m playing a completely different person. That’s why it’s interesting. It’s really fun on set with the cast and crew. It’s a long day but it’s good. I always feel very proud of myself at the end of the day. I feel like I’ve tried my best and done a good job. I like that lots of parents with autistic children have enjoyed it. It’s a great thing that I’ve been able to do.

Jules, a young disabled man, plays a character smiling and lying in a hospital bed on Holby City

I hope attitudes in the industry get better

There was a point where I was very frustrated with the industry because I was seeing all these films that had a character with autism and it was so often played by a neuro-typical person. In Rain Man and Black Balloon, for example, the actors in those two films don’t have the condition. It’s frustrating that directors and producers don’t do enough research because there are people out there with the conditions that can play these parts.

It’s important for disabled actors to play disabled characters, and I think they can play characters who don’t have a condition too. I want the industry to be a little bit more understanding and to not ignore autistic talent like it has done for far too long. I would say it’s improving now but it could get a lot better.

I think it’s really good that shows like Holby City are starting to look into diversity more. When I first started I saw one negative comment on Facebook, someone who followed the show who didn’t understand Asperger’s. But everyone else has been really supportive.

It’s great to have role models

Steve Martin, John Travolta and Morgan Freeman are some of my favourite actors, and Kevin Spacey, Tim Robbins, Jeff Bridges – I’ve got lots. Jim Carrey as well. All these people make me so excited to be an actor and it’s really great to have these role models because I happen to think that actors and comedians are the best people in the world.

I hope that I’m seen as a role model. I hope that I’m encouraging people with other conditions or people who are on the spectrum and have autism or mild learning difficulties. If they watch me on Holby City I hope I’m showing them that it can happen for them and they shouldn’t lose faith and hope. I’m sure they can do it if they put their mind to it.

I think that I’ve done a good job at making people more aware of autism and making it relevant in the acting world. I’m showing that if people with autism want to do this kind of work they can, and it’s not impossible.

My advice for other young disabled actors

Keep a positive frame of mind and try your best. Of course there will be hard times but you’ll get through it. Try your very best to get where you want to go. Sometimes it doesn’t work out the way you want but maybe it just takes time.

Holby City has been the highlight of my career. It’s a very rewarding job and I’m hoping that it will lead to other work in the future. It’s been my first big break really. I’d love to do movies here and in America, more TV and theatre. I’d like to do a whole variety of things.

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

“Some people don’t think autistic people can be creative” Callum, the performance poet

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This story is part of 30 Under 30.

 

Callum Brazzo is a 24 year old autistic performance poet and social entrepreneur from Lincolnshire. Performing his poetry at live events and on YouTube, he is getting a strong following.

As part of 30 Under 30, Callum talks about using poetry as an outlet and his new social venture, Spergy, which he has just set up.

My love for poetry was organic. It evolved out of my personal struggle. It was an escape for me because I was being bullied at the time. I was bullied for various things including my shyness, my lack of eye contact and my ticks. As they were physical ticks, people used to make fun of me because of those. I tended to push people away.

I became very depressed, I was on antidepressants and was juggled between psychologists. My emotions were very raw and I needed a platform to release that anger. My poetry was a way for me to communicate all of that in a positive way.

Giving something back

Poetry was and still is a positive outlet for me. I think everyone should try and find their own positive outlet.

‘Spergy’ is my social venture. It’s an arts based platform for people on or interested in the autistic spectrum.

It’s expressive, fun and free. I wanted to go give back to the community and offer an arts based outlet to them. Like I had whilst growing up. My personal journey has become a collective journey. That’s my way of giving back. 

There was no defined starting point, it just happened. We’ve really had to operate on a shoestring but I’m really proud of what we’ve achieved so far. It was so organic and it’s continuing in that fashion. The website is being built by the community. For example, there are certain groups already like poetry and food but people can add their own if they want. They can post whatever they like, it could be a painting or some photography.

Callum, a young disabled man, speaks into a microphone whilst wearing a tshirt that says Spergy

It’s in its infancy at the moment but I’d like to make it compatible with EyeGaze technology and make it possible for people to use the site in different ways.

I want people to make what they want to make and to feel appreciated and valued for their work. I’d really like people to benefit in meaningful ways.

Some people don’t think autistic people can be creative. They think we have a rigid mindset. ‘Spergy’ and I can help to dispel that myth.

Callum is sharing his story as part of our 30 Under 30 campaign. This is where we will be releasing one story a day throughout June from disabled people under 30 who are doing extraordinary things. Catch up on all the stories so far on our 30 under 30 page.

Visit the Spergy website to find out more about Callum’s social venture. You can also like Spergy on Facebook and follow Spergy on Twitter.

“Be a bit brave, take part and go for it.” Jack, the volunteering star

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This story is part of 30 Under 30.

 

This Volunteers’ Week, we spoke to one of our volunteering and Scope for Change stars, Jack Welch, who gives much of his time to a number of different charities.

As part of 30 Under 30, he talks about how volunteering has benefited him. Several of the organisations he has volunteered for have also sent in some glowing testimonials.

Volunteering is a way to explore new opportunities and different ways of working. You can also meet new people and develop your networks. It’s the variety that’s always the most exciting!

I think there is a lot out there for people to get stuck into. Volunteering for charities doesn’t just mean volunteering in a charity shop – there are loads of different things you can do.

For me, volunteering has helped me to build on social skills, communicate with others and be a bit more independent. You really develop that over time. Although it’s volunteering, there’s an expectation of having a skillset that you need to commit yourself to.

Jack, a young disabled man, smiles and talks to a room

It gave me the opportunity to move away from some of the troubles I had at secondary school. I’m not as anxious as I used to be. It’s been great to have a bit more independence away from home and the family. I’ve really expanded and broadened my networks beyond the safety of my closest relatives.

It’s really changed me. Five or six years ago, the thought of using public transport would have terrified me but now it’s just second nature. I travel quite a lot for my volunteering.

For someone thinking about volunteering, I would say go for it. If you spot something that might develop your skill set, help you move into employment or meet new people, get involved!

Be a bit brave, take part and go for it.

Testimonials for Jack

Jack has left a lasting impression at all of the charities and organisations he has worked for.  Below are just a handful of the glowing testimonials given to us by some of these organisations.

Jessica Benham, Outreach Officer for Holocaust Memorial Day Trust

“Jack has been working with the Holocaust Memorial Day Trust for four years. He has attended workshops, engaged with Holocaust survivors and raised awareness about the Holocaust and subsequent genocides amongst his peers. Jack has been an exceptional member of the Youth Champion Board, contributing to the development of the Youth Champion programme to ensure that people aged 14-24 are empowered to hold their own activities for Holocaust Memorial Day.”

Find out more about Holocaust Memorial Day Trust.

Dave Thompson, the Director of Dorset Youth Association

“We first met Jack many years ago as a quiet and shy young man.

Through the years we have seen him develop and grow as he has become involved in more and more community projects. Jack was heavily involved in our Young Remembers project which looked at the History of Dorset Youth Association (DYA) over 70 years. Jack and his peers were so passionate about their heritage and wished to continue to meet as a group to volunteer. Therefore staff at DYA attracted new monies to support the group in a major fundraising initiative. This investment attracted almost £40,000 and led to a new youth led project Walking in their Shoes.

Jack is always polite and pleased to volunteer his time to help others.”

Find out more about Dorset Youth Association.

Amber DeRosa, Participation Officer at the National Children’s Bureau

“Jack has been an active member of Young National Children’s Bureau (YNCB) since 2015. During this time, he has been actively engaged in a range of activities and events including speaking at conferences, debates and meetings, campaigning work and taking part in various discussion groups and consultations.

Jack is a delightful young person to work with. He continually makes valued and thoughtful contributions to NCB’s various programmes of work and through this he genuinely makes a big difference to the lives of other children and young people. He is hugely reliable and very dedicated to the activities which he volunteers to be a part of and is extremely popular across all of NCB!”

Find out more about National Children’s Bureau.

Harris Lorie, Programme Manager for Spirit of 2012

“Jack has been a highly committed and valued member of Spirit of 2012’s Youth Advisory Panel (YAP). His contributions in our meetings are measured and thoughtful, drawing on a wide range of experience. He has assessed grant applications sensitively, impressing both other YAP members and the Spirit staff team. Jack volunteers enthusiastically for opportunities that come up, be that visits to our projects or attending a national gathering of youth panels. He always represents Spirit professionally, and creates great communications material for us as well. Thank you Jack!”

Find out more about Spirit of 2012.

Jack, a young disabled man, stands next to a banner which says "Volunteering matters to young people. 96% of volunteers feel better prepared for employment"

Jack is sharing his story as part of our 30 Under 30 campaign. We are releasing one story a day throughout June from disabled people under 30 who are doing extraordinary things. Catch up on all the stories so far on our 30 Under 30 page.

If you’ve been inspired by Jack, take a look at our volunteering opportunities.

“Autism doesn’t stop me from enjoying life” – National Siblings Day

It’s National Siblings Day on Sunday so we chatted to Joe, who has autism, and his sisters Charlie and Lauren. In this blog they talk about growing up together, their achievements and how their lives have been shaped by autism.

Joe

I live in Much Hadham with my parents and my sister Lauren. My hobbies are computers and reading. I also like hiking and indoor climbing. At the moment I’m working for East Herts District Council as a BSU Officer for Environmental Health. It’s basically filing, scanning, taking messages. I like that I get on with everybody, it boosts my confidence and I like keeping busy. People don’t treat me differently. My colleagues just treat me like anyone else, as a friend.

Autism doesn’t stop me from enjoying life

I found out about my autism diagnosis from my doctor and my mum when we arranged for me to have a personal tutor at college. Until then I just thought that’s how being a teenager was. But it doesn’t stop me from enjoying life at all.

Autism might affect me at first when it comes to social situations but I’ve found that it helps me too. I’ll admit, when I started taking phone calls at work it was daunting but I thought I should overcome that problem just by practicing using the phone. Holding back from situations like this wouldn’t do me any good.

My family

My family have supported me and made me feel positive about my life. Like most families we have our ups and downs but most of the time we get on great. We go on trips to the cinema or somewhere to eat, to the theatre or just shopping. Mind you, when it comes to clothes shopping, I do like my sisters but I find the way they shop a bit boring. But I suppose other guys who have sisters are the same.

Joe’s advice for other people

I’m settled at the moment and grateful for everything that has happened to me so far. Where I’m working is the best employment as far as I know. I love living here and I’m not planning to move anywhere else, not for a long time anyway.

From my experience, my advice is to be positive about autism; don’t think of it as a negative thing. If I feel positive about autism and I’m not letting it affect my life too much, other people can do the same too.

Lauren and Joe young
Joe and his sister Lauren when they were young

Lauren and Charlie

Joe is just Joe

Charlie: Joe can be a very sweet, thoughtful, nice guy. He loves computer games and pop music, and he has quite a silly sense of humour.

Lauren: One of the things I like is that he gets my sense of humour. I’m quite sarcastic and they say you’re never meant to be sarcastic to someone with autism because they will take you literally, but he gets me.

Charlie: He once told someone to ‘eat his shorts’ when she told him off, because we used to all watch The Simpsons together when we were little. That always tickles me.

Lauren: Everybody loves him, from his colleagues to his tutors at college. I remember at his student of the year event, people turning round to us and saying ‘Oh you’re Joe’s family! You’re so lucky; he’s such a lovely boy.’

Charlie: He’s painfully honest though. He’d say things like ‘no offense Charlie but shouldn’t you have moved out by now?’

Lauren: One my favourite stories was when he went for his DLA assessment. He’s never really been a drinker, but we’ll have a glass of champagne at New Year’s. At his DLA interview they asked him ‘What do you drink?’ and he said ‘Coke, but occasionally champagne.’ And obviously DLA is a benefit so we had to back track and be like ‘very very very very rarely!’

The flip side

Lauren: You can get jealous of the amount of attention that is paid to them and when they’re allowed to do certain things. When you’re younger you don’t understand why, it’s just “why is he allowed to do that if I’m not?” but as you get older you realise it’s ‘anything for an easy life’ – they’re just simple things that will make him happy.

Charlie: We sometimes felt protective, like any sister would. If anyone said anything about Joe I wanted to rip their head off. Kids can be horrible but they don’t mean anything by it. They just see someone doing something that’s not ‘the norm’ and they comment on it. Lauren has always been better at dealing with it than I have.

Understanding autism

Lauren: When I found out that he had autism I think I was about 7. I remember mum explaining it to me and being like ‘oh yeah, of course’. It just all made sense. I used to spend a lot of time researching autism. I didn’t really know how to talk about it, I didn’t want to talk about it and there wasn’t like a school guidance counsellor or anything. So I just used to read about it a lot.

At school I found out there was a boy who had an autistic sister and I remember being excited to talk to him. But then he told me that she has really high support needs and I was a bit taken aback, because that’s not something I could relate to.

Charlie: I’m the only person I know who’s got an autistic brother, other than Lauren obviously. Some people act like they know about autism in a very patronising way. They don’t mean to be.

Lauren: It’s that innocent ignorance that Scope talks about in End the Awkward.

Lauren and Joe older
Joe and his sister Lauren last year

Sharing success

Charlie: When Joe was in college he won ‘Student of the Year’ two years running. I was head girl at my sixth form and so was Lauren. I love that we’ve all shared the same sort of accolades. That was really nice.

Lauren: I credit a lot of who I am to Joe. I think I’m a nice person and I have empathy for people. For my dissertation at university I did a political research report for an MP. Joe was looking for jobs and I was getting incredibly frustrated because he had all these skills, he was diligent and hard-working – so why wasn’t he getting a job? That’s what I chose to look into. It’s always shaped what I’ve done, including my job today.

Tips for a stress-free Halloween and bonfire night

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

Be prepared

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

Any day can be Halloween!

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

Gauge your child’s reactions

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

Distract with snacks and games

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

Wheelchair friendly pumpkin

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

Knowing what to expect

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

Lead by example

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

Keep your clothes on

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

Wheels of pumpkins

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

Keep your distance

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

Use headphones

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

Let your child take the lead

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

Alternative mask

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

Adapt your child’s own clothes

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

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

My life as performer with a learning difficulty

Guest post from Cian Binchy, a 25-year-old writer and performer from London who has autism. His one-man show, The Misfit Analysis, premiered at the Edinburgh Fringe festival last month.

If somebody asked me, ‘Can you describe autism?’ I would say that question doesn’t make sense. Everyone experiences autism in a different way, and at the end of the day, I can only really describe my own autism.

Cian, a young man wearing a Beatles T-shirt, on a London street
Cian in Dalston, London, last month

When you have Asperger’s syndrome, you are on the very, very able end of autism and in many ways you’re almost like everyone else. But there’s just something little in you that is stopping you, and singles you out from other people. It’s very frustrating.

People think if you’ve got ‘high functioning’ autism you can cope in any situation, and that’s not true at all. I’m always struggling.

I became a performer because I want to educate people about the struggles that people in my position go through.

I want to entertain people, but I also want to make them think. I want people to really experience some of my art and some of the stuff that goes through my mind – and for people to be a bit more understanding of the kind of issues that people with autism have.

My show at the Edinburgh Fringe

The Misfit Analysis is basically about the struggles that I’ve had with autism, particularly as a young adult between 16 and 20 – not having much luck with going to colleges or getting work; failing to have a relationship.

It’s not really a straightforward play; it’s more of a performance, if that makes sense. There is audience participation, there are some videos, but predominantly it is a one-man show.

It’s humorous. It’s dark. It’s a bit twisted. It’s unorthodox. It’s funny. It’s a bit sad. It’s a bit scary. It’s educational. It’s thought-provoking. And it’s all based on my own experiences.

You’re either going to be laughing your head off or be freaked out!

I hope it’ll help people learn that autism is quite unpredictable and complicated, and that you can never be an expert on autism. I would like them to do a bit of research on autism and maybe get more involved in it – and take autism out of the ghetto, bring it into the mainstream.

Because a performer with a learning difficulty, I am in a minority within a minority. There are many disabled performers, but hardly any that actually have a learning difficulty.

Disabled people in the arts

Unfortunately, the performance art world is a very tough place for anyone, especially people with learning difficulties.

Cian sitting on the floor next to a wheelchair, holding a toy windmill and a tragedy mask
Cian in a promotional shot for The Misfit Analysis

I was a consultant on The Curious Incident of the Dog in the Night Time at the National Theatre, basically teaching the lead actor, Luke Treadaway, how to behave like someone who is autistic.

He was really good, but the sad thing is that often people who actually have got autism don’t really get a chance to perform. They don’t get a chance to go to a decent drama school; they don’t get the right education for that kind of performance. I actually wasn’t even getting paid for doing this work.

Whereas when you see me perform, it’s real. In my show I am actually performing my own disability – so when you see me, and when you see the kind of stuff I do, like spinning a tin opener, it’s real. It’s not just an act.

Cian is working with Access All Areas, a theatre company which produces work by disabled artists. Read a review of his show in the Guardian here.

Are you desperate for some zzzzZZs?

We are currently running a sleep appeal. Has your child ever had problems sleeping? Read more about keeping a sleep diary.

Parents of any newborns will know that sleep is a rare commodity. But did you know that 80% of disabled children experience sleep issues? And these can last for many years.

Sarah is one mum who was experiencing extreme sleep deprivation. For five years her daughter Florence, who has autism, would regularly wake up to seven times during the night. It meant Sarah was often surviving on just two hours sleep.Woman sitting on the floor looking stressed outside a child's bedroom door

“She is overtired – I am tired, stressed, angry….”

Sarah was referred to Scope’s Sleep Solutions service. Thankfully, our sleep practitioners work with disabled children and their families to find practical solutions to sleepless nights.

She was encouraged to create a new sleep routine, after learning lots of practical dos and don’ts. These included a later bed time, dimmed lights, a warm bath, pyjamas upstairs only, and some massage. It ended with the last word being said to the child:  “sleep”. Amazingly, after only three weeks, things started to drastically improve.

“The new routine needs to start later – Flo doesn’t need as much sleep as I thought!”

Sarah kept a diary during the sleep programme, and here’s how she got on…

Week 1

Handritten sleep diary that shows how many times  the child was getting up during the night for the first week of the sleep programme, seven in some cases“I am so tired….I called Maxine, and she kept me going.”

Week 2

Handwritten sleep diary for week two of the sleep programme, says "Feel a lot better already, is this actually working?!"

“Straight back to bed, no engaging in conversation, give her a kiss, tuck her in, and last word is ‘sleep!'”

Week 3

Sleep diary that has much improved sleeping patterns from the child, and says "I feel like I have my energy back!"

“I feel like I have my energy back!”

You can watch our film featuring Sarah to hear more about how she got on.

Did you find this information useful? Please donate to our sleep appeal so that more families of disabled children can get the support they need. 

If you need any sleep tips, or have any tips you’d like to share with other parents, visit our online community.  

“My husband and I had to sleep separately”

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

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

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

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

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

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

The toll of no sleep

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

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

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

Discovering Sleep Solutions

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

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

Family life now

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

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

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

Sarah is the face of our sleep appeal this summer.

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

Other ways than hugging to show intimacy

Not everyone is keen on hugging. Whether it’s not something you can physically do or it’s just not particularly appealing there’s lots of other ways to show your affection.

1. Hand holding

A couple holding hands in their gardenScoff if you will, but hand holding goes back years. In 2014, a team of archaeologists discovered two skeletons holding hands that were 700 years old. Another set of skeletons were found in Italy dating back between the 5th and 6th century A.D. It’s simple, but effective.

2. Massages

This is another great choice, and potentially more simple for people with sensory processing to work with. Although you could learn this skill professionally, if you can’t find the time, there are simple instructions for giving massages online . Even if you’re not an expert, it doesn’t matter! Just be sure to check in frequently with your massag-ee and ask them what they are and aren’t comfortable with. And use blankets where your massag-ee doesn’t want air hitting their skin.

3. Hairstyling

It’s hard to see hair styling as a form of intimacy, especially when it’s very commonplace. We had at least over 35k hair salons in 2012 in the UK according to statistics on hair salons by the Hair and Beauty Industry Authority. But it’s all about context. Without the stress of paying for an expensive style that might not come out right, you might find it more relaxing.

4. Notes

An older woman writing a letterIntimacy doesn’t always have to involve physical contact. If that’s something you or a partner can struggle with, there’s always the option of leaving notes. They don’t have to be long or complex, just something simple. To make them fun, hide them in places your partner might reach or go to. For ideas on what to write, think of your senses or some of the things they do that you’re grateful for. Or just write something simple like, “I love you.”

5. Signs

Another great way to send a message is with a sign that can mean something special. You can use the BSL sign for “I Love You”, or you can create your own sign that means something special between the two of you. Think about something fun that you both like or an experience that you both had together that you enjoyed.

You might find after some time together that you develop your own ways of showing intimacy – and those ways count too! It might be unconventional, but if it works for you and your partner, then that’s what matters.

There are loads of other ways to show intimacy other than touch. What are the ways you show intimacy with someone you love? Share your tips on our community.

“We searched the world for a miracle, but we found the answer at home”

Guest post from Reza Ataie, a volunteer befriender who runs our Face 2 Face dads’ group in Brighton. He’s sharing his story for Fathers’ Day in support of our Brighton fundraising appeal – we need to raise £120,000 to keep the service running for another three years.

My twins Nikki and Sara, who turned 18 recently, have severe autism and learning difficulties, they also have sleep problems and seizures.

Our children are a handful and a joy. Our life revolves around them, and we can’t imagine not having them for a minute. For our family the glass is always half full, and we’re always happy for the small things.

But when Nikki and Sara were very young, we went through a difficult time.  Even a lot of professionals didn’t know much about autism, and we felt very isolated.

We had a different style of living when the twins were born. I was chief executive of an international company; I travelled a lot and I had a teaching post. I now work in a different role, and I’m very lucky because I can work reduced hours and from home, but my earnings have reduced considerably as a result.

Searching the world for answers

We have videos of Nikki and Sara from their first birthday and they were talking, communicating. But then suddenly, almost overnight, their development turned back.

With the realisation of what was happening to the twins, my wife had to give up her job and eventually I had to stop too. It came to the point where I realised I couldn’t carry on – the sleep deprivation was tremendous.

When they were diagnosed, my wife and I started looking for a miracle. We started doing a lot of research into autism ‘treatment’, and this took hold of our lives.

As a parent, the most difficult thing is to accept and come to terms with your child’s condition. You hope it’s temporary. Autism is a lifelong condition, but we were fighting with every ounce of energy not to accept that.

We travelled a lot – from Russia to America, we went anywhere research was being done.

Finally, when the twins were nearly seven, our fantastic GP called us – he was the only person who knew everything we had been doing. He asked, “Are you tired out? Have you done enough?”

We looked at each other and said “Yes. We’re ready to accept it.”

Getting our lives back together

The first step was to start getting a routine back. We found the right school for the girls, and that was a major turning point. They started settling down and learning in their own ways.

We’ve always done charity work, and I got introduced to a local support group for parents of disabled children. When I started working with them, I realised what a difficult time we’d gone through and what it must still be like for younger parents.

I met Amanda Mortensen, whose daughter Livvy has autism and severe learning difficulties, and she told me about Scope’s Face 2 Face befriending service in Brighton, which she manages.

I did the befriender training course with Scope, and it was fantastic. There were 12 of us, but I was the only dad!

Starting a dads’ group

After the training, Amanda had difficulty finding a dad for me to work with. They tended to be a bit more reserved, and found it difficult to open up.

So I suggested we start a group just for dads. My reasoning was that if it’s difficult to get fathers talking one to one, maybe going to the pub as a group and having a drink would help.

Eight dads showed up for our first meeting in January 2014, and then word spread – we have 32 dads on our contact list now, and we’ve had up to 22 people come to each meeting. A running group has started on Saturdays, and people meet up socially with their families. I’m still amazed about how easy we have found it to talk to each other.

Fathers can feel very isolated – often they feel they can’t talk as freely about their problems. The group gives us a sense of belonging.

Can you support our appeal to keep Brighton’s vital Face 2 Face service running? Find out more about the service and the parents it supports.