Author Archives: Sarah Jones

New Book on Autism in Our Postal Lending Library

We have a new book available from our Postal Lending Library.Through the eyes of me

‘Through the Eyes of Me’ by Jon Roberts

ISBN 9781912213009  £6.99

Through the eyes of a young child with autism.  This lovely picture book is perfect for describing autism to a very young child.  If you have a young child or grandchild with autism this would be a special book to read with them or their siblings.  The little girl in the book is Kya, she tells us all about the things she loves to do, the things that interest her and the things she doesn’t like.  Like any child with autism she has definite preferences.  It is a beautifully illustrated book with pictures that weave in and out of the text.  It is written by Kya’s dad, who says “we are all unique and precious and should embrace and love those differences with all our heart and being”.

For more information about our library please email janetp@cerebra.org.uk.

We Launch #FamilyFriday!

The Cerebra Innovation Centre has helped lots of families with their designs over the years.

From items which have everyday applications such as the Oxy-gem and the GoTo Seat, to their larger projects such as the Surfboard and Triathlon equipment which have helped children such as Poppy achieve their dreams.

We want to celebrate all of our fabulous families with our new social media campaign – #FamilyFriday! Every Friday we’re going to dedicate our newsfeeds across our Facebook, Twitter and Instagram to all our families – whether you’ve been helped by the CIC or not.

We need your help! Share your positive pictures on any of our social media channels using the hashtags #FamilyFriday #CIC #CerebraInnovationCentre and we will post as many as as we can!

As well as celebrating the positivity of our community, we also want to highlight the great work that the team at the Innovation Centre does. Also they are always looking for new challenges so if you have an idea for a piece of equipment that would benefit your child, or have a problem that you think they may be able to come up with a solution for, please get in touch at cic@cerebra.org.uk.

Samuel and his family visit Cerebra HQ

Samuel, Angel, Jacky and Barry in our Fundraising Office

Samuel, Angel, Jacky and Barry in our Fundraising Office

We recently had some very special visitors at Cerebra HQ. Samuel Turner, his family and friend Angel are loyal supporters of Cerebra and have done lots if things to raise money for us including a bake sale at their local fete.

The whole family made the trip from their home in Essex to Cerebra’s Head Office in Carmarthen and spent the day in our fundraising department. They got to know some of our fundraisers and Samuel even took a donation from a supporter!

Samuel now volunteers for Cerebra by distributing our collection boxes in his local area and has even appeared on his local radio station to talk about Cerebra and the work we do.

It was lovely to meet you Samuel.

Impact of Headbanging and Sensory Issues on Sleep

One of our Sleep Practitioners explains  how she helped a family struggling with head banging problems:

“Mary came to one of our sleep clinics looking for advice on her  eight year old son George who has epilepsy.

George was head banging every night, throughout the night. Mary was concerned, as he would head bang so vigorously that it would wake him up and therefore he has a very disturbed night, as did the rest of the family.

Some research suggests that head banging can be reduced by introducing a different sensory input. I suggested introducing a fan at bedtime especially as we were having quite warm weather. A fan creates white noise (a steady, unvarying unobstructive sound).

I followed up with Mary after a couple of weeks and was amazed to hear that the head banging had significantly reduced, to the point where the sores on his head had improved dramatically. I didn’t want to count my chickens, and wondered if it was just a short term fix so agreed to follow up with Mary again in another few weeks. When I spoke to Mary again I was delighted to hear that the head banging had remained reduced and George was getting significantly more sleep.

Mary said: “We have tried so many things in the past, weighted blankets, music, lights on and off and even tried white noise through a machine but the fan we use is much loader than you would think would be conducive to good sleep. Since using the fan he only wakes a couple of times a night, can usually be resettled easily and even says in bed until around 6 am. For some reason the load noise really calms him. We would never have risked it, had it not been suggested. Thank you.”

You can find out more about our Sleep Service here.

Sleep Practitioner Sarah Tells of her Own Experience of Sleep Training

Sarah and Theo

Sarah and Theo

Our Sleep Practitioner Sarah Coldrey is used to helping families with their sleep difficulties but, as she explains, that doesn’t mean she doesn’t experience the same difficulties with her child Theo. Theo was born prematurely and Sarah updated us on his progress as well as how she settled Theo into a better bedtime routine.

When Theo reached one we found that we were in a fairly good routine. He would wake around 6.30am, have 2 short naps a day and then bedtime was around 7pm. He was generally asleep within 10 minutes.

We followed the same bedtime routine every day. At 6.15pm he would have a bottle of warm milk downstairs, we would then go upstairs and Theo would have a bath for about 15 minutes. We would then go straight to the bedroom and get into pyjamas. Once ready for bed we would sit and read a few stories in dim lighting. I would then carry him to his cot and sing twinkle twinkle little star, I would leave the room and Theo would self-settle to sleep in a dark room with black out blinds, sometimes he cried but it was only for a minute or two.

Between ages one and two Theo slept generally very well and we felt lucky. Sometimes he would wake in the early hours but we found that this was probably because his room was getting quite cold and so we put a heater in his room over the winter that came on around 4am. This seemed to improve the situation and Theo would sleep until at least 6am.

Around the age of two, Theo started to wake in the night. I found this confusing as he was able to self settle to sleep and so I didn’t feel there was an obvious reason why he wouldn’t be able to re settle himself during the night. I did however feel that Theo was going through some developmental changes. His language was coming on and he was starting to potty train. He was also very clingy when I dropped him to nursery (normally he couldn’t have cared less when I left him)

For the first few night wakes, it was such a shock to the system that we just bought Theo into our bed as most people do (even though I’m a sleep practitioner, I’m still human and the need for sleep took precedent).

For some people co sleeping works well, but for us it did not as Theo tended to fidget all night and somehow take up nearly an entire double bed and so we needed a new plan.

Initially I used a chair bed (a fold out foam bed) and would lay on the floor next to his cot and sometimes hold his hand.

After doing this for a few days, I decided I was being too soft and wanted to move things along, so I moved onto a single bed that was in his room but was much further away from his cot. I felt pleased about this because he wasn’t coming into our bed and I was able to create a bit of distance between him whilst still being in his room.

Fast-forward a couple of months, Theo seems more settled in himself and goes to nursery happily again. Some nights he wakes in the night and we will leave him to self-settle back to sleep and some nights we know that he probably needs the comfort of having us nearby and so we still go into his room and sleep on the single bed. This is not ideal but it works for us in our real life. Theo continues to self-settle at bedtime and so I’m confident his good sleep habits will return.

However – I know we have a whole new battle ahead of us when we transfer Theo from a cot to a bed!

You can find out more about our Sleep Service here, or call our freephone helpline on 0800 328 1159.

 

Support for Potocki-Lupski Syndrome

Mum Lisa, who’s son Kyle has Potocki-Lupski Syndrome, tells us their story.

“Kyle was born by natural birth on June 13th 2013 weighing 71b 5oz. He had distinctive facial features like elf and his arms and legs were very thin with brittle bones.

At around 3 months old I got him weighed by the midwife at the clinic and explained that Kyle wasn’t really interacting with anything. At that age he should be able to sit up and do a bit more than what he’s doing now – I explained what his sister did at the same age.

They replied that ‘boys can be lazy and to monitor it’. I was quite firm and stuck to my guns as my mother instinct kicked in and I told them something isn’t right with Kyle so they eventually referred me to hospital for Kyle to have some tests.

It was a long process – he got sedated (put to sleep). It was heart wrenching to watch my little bubba being pushed on this trolley down the corridor by nurses with his little body in the middle of it. He had a CT scan of his brain. One of the best consultants saw him and the test came back that he had a shadow at the back of his brain. It was an abnormality but nothing too alarming/to worry about it.

Kyle had test after test done and finally after a long wait we got the answer that Kyle was born with a missing chromosome in the body. He was diagnosed with chromosome 17 (Potocki-Lupski Syndrome). It makes the facial expressions look elf-like – a big forehead, quite a broad nose, thin arms and legs, brittle bones and developmental delay with walking and talking.

So all that explains what I thought and knew all along – that Kyle was born differently.

He is now 4 years old a happy, smiling little boy who lives with me his mum and his 7 year old sister Layla. Kyle and his sister have a very special bond together  – they’re close  and she looks after him.

Kyle is mentally at the stage of a 2 year old and in September he will be starting school. He is starting to put sentences together but mainly says one word like mummy, daddy, grandma, what’s that, hi, no, yes etc. I’ve learnt to sign language with Kyle so he can communicate with me I also have picture cards at home to use with him.

He’s had on going support from his paediatrician, pre-school, portage, speech and language and the eye clinic as he was born with a lazy eye. At the beginning he had a physiotherapist to help with his joints but got discharged a while ago now. It’s been a hard, challenging journey but I’ve had a lot of support from friends, family and the professionals.

He is my special little boy. He is unique and I wouldn’t have him any other way. I say to him he has his own little super power because of his missing chromosome. I have a good feeling and faith that Kyle will catch up in life, it will just be a time thing.

Thank you for reading my story”.

Support for Global Developmental Delay

Our Regional Officer Lilly Fahey recently helped Emma, mum to 12 year old Rory who has Global Developmental Delay. Emma told us their story.

“I am a mum; my son Rory will be 12 years old this month.

Ever since he started primary school he has been ‘Statemented’. Before Rory started Primary school we had ‘Portage’ come round to my home to see Rory and help encourage him to speak. When he was at pre-school they were concerned that he wasn’t talking and he wasn’t able to keep up with his peers.

He was born 4 days late and was delivered by emergency Caeserian. He had trouble breathing he was in the Neonatal unit for just over 2 weeks in a incubator. He had trouble feeding and was bottle fed.

He struggled throughout mainstream school, most of Primary and the start of Middle. He could not cope there at all. I used to get phone calls every day to say I had to go and collect him because he was struggling. He was under the Senco, he had one-to-one support and also had one-to-one at Primary. He had one-to-one every day at Middle school.

I had a meeting with the Senco in the end because Rory refused to go to school and she actually said, and I was thinking along the same wavelength as her, that ‘Rory will not cope in year 6 or when he gets older’. By that time I was so relieved that the Senco could see that he was struggling. About a year and a half ago Rory was Diagnosed with Global Developmental Delay (GDD). The Paediatrician said that even though he’s 11, Rory has the mental age of 5 years old.

In year 5 at Middle school we pushed for a specialist Provision for him. He is now attending a specialist school. He started last September and he now loves going to school. He does have his moments every now again. He goes to school by Transport every day, which he loves. He’s a different boy now.

Also not long ago he was diagnosed with a few heart problems including ‘narrowing of the arteries’ and ‘hole in the heart’. One of his valves isn’t working as it should be. He has sensory issues, anxiety issues and is also on the autistic spectrum.

Rory’s father and I divorced back in 2010 but I am now remarried. I got married again in 2013. Rory Loves my hubby Neale, he gets on really well with him. My hubby gets on well with Rory.

Also I’ve not long ago been diagnosed with (GDD) Global developmental delay myself”.

The Arctic Rider Takes on New Alaska Challenge

Gordon Stuart

Gordon Stuart

When Cerebra Ambassador Gordon Stuart first started his Arctic Rider project, he couldn’t have imagined the distances he would cover and the huge amount of money he would go on to raise for Cerebra and other charities close to his heart.

He first started The Arctic Rider project as a way of using his passion for motorbikes to help raise money and awareness for Cerebra, Tiny Lives Trust and One Young World – all of which Gordon is an Ambassador and an avid fundraiser for.

He was soon setting himself motorbike related challenges as a way of raising funds and also keeping his growing army of loyal followers up to date with his exploits through Facebook, Twitter and YouTube .

In 2014, Gordon rode 6,000 miles solo to Nordkapp in the Arctic Circle and back, raising over £5,000 for Cerebra. This first challenge was known as ‘Arctic Ride 2014’.

In 2016, he continued by completing the UK ‘Iron Butt Challenge’, riding the length of the UK from Lands End to John O’Groats in under 24 hours. Gordon completed the ride in 18 hours raising over £1,600 for Tiny Lives Trust.

Gordon’s next challenge has been dubbed ‘Arctic Ride Alaska’ – an attempt to ride the length of Alaska from Anchorage in the South to Prudhoe Bay in far North Alaska, deep inside the Arctic Circle. This will require Gordon to conquer the notorious ‘James W. Dalton Highway’, which is often cited as one of the world’s most dangerous roads due to its remoteness, road quality and demanding weather.

The Dalton is a 414 mile stretch of mostly gravel road which was designed as a supply road to support the Trans-Alaskan Pipeline, which runs parallel to it. It is one of the world’s most remote roads with only 3 towns and 3 fuel sops along the entire stretch.

Gordon is hoping that through this challenge, he can prove that an ‘average road rider’ can conquer the Dalton.

Gordon will be taking on the Arctic Ride Alaska challenge in summer 2018 and will be raising money for both Cerebra and The Tiny Lives Trust. You can donate through his Virgin Money Giving page.

You can keep up to date with Gordon’s progress as he prepares for the challenge through his blog.

 

Team Cerebra at the Superhero Series!

Rob and Poppy with Anthony, Rhys and Kevin

On Saturday 19th August two very special Superheroes joined team Cerebra for the first ever Superhero Triathlon at Dorney Lake, Windsor.

The Superhero Tri is the UK’s one and only disability sports series for the everyday Superhero and their family and friends. It was also particularly exciting because it was the first ever Superhero Tri so our team didn’t know quite what to expect!

Returning to team Cerebra was triathlon veterans Rob and Poppy who have previously taken part in the Cardiff and Swansea Triathlons using equipment designed especially for Poppy by the Cerebra Innovation Centre.

Joining the team was Anthony, his son Rhys and family friend Kevin. Kevin has previously taken part in a number of “Tough Mudder” events but this was the first event of this kind that Anthony has participated in.

Anthony said: “Me and Kevin wanted to do something with Rhys not for him and that’s why we entered the Superhero Triathlon. We wanted to give Rhys an experience he has never had and will certainly remember.

Words cant describe how much gratitude we have for the support and generosity given to us by Cerebra. The team worked with us to give our son the biggest day of his life. Every step of the way Cerebra have shown nothing but enthusiasm and commitment to making it happen! An amazing charity with such amazing people. Massive thank you!”

They all did us proud and crossed the finish line with a mixture of excitement and relief!

So far, Rhys, Anthony and Kevin have raised over £1,000 for Cerebra which is incredible! The whole team has raised over £2,000 so thank you to everyone who has donated so far. You can donate to the group campaign here.

Your Average Jo

In the latest of our series of articles from young people talking about growing up with a disability, Jo tells us her experiences:

“I was asked to write an article for Cerebra about what it’s like for me as a young disabled person. This, as I’m sure many of you are aware is a massive topic, and not one that can be covered in one fell swoop. The experience of disability is different for everybody, regardless of whether they are disabled or not. And within every personal journey there is so many things to talk about, such as attitudes and relationships, services, obstacles, the list goes on.

So, on this basis, and considering I haven’t written an article for Cerebra before, I thought I’d simply introduce myself to you all and try to give you an insight as to what it’s like being me. Granted, I don’t think my life is all that interesting, but if you’re anything like me you love to hear other people’s stories…So here’s hoping this is up your street.

I guess the mantra for my life arose when I was little. I impulsively announced to my Physiotherapist that I was going to be a ballerina when I grew up. When I tell you that I have Quadriplegic Cerebral Palsy and I’m a fulltime wheelchair user, I’m sure you can picture the look on the Physios face as she attempted to come up with a response that would neither put me down nor get my hopes up. After a few seconds, she tactfully suggested that perhaps I could be a choreographer instead.

It’s safe to say I didn’t become a ballerina, or a choreographer for that matter. Not because I felt as though my CP prevented me, but because with or without a wheelchair I have two left feet and very little artistic flare. The point is, from an early age I was never told I categorically couldn’t do something. If I had grown to be passionate about ballet, then there would have been a way for me to have been involved. At the same time, no one in their right mind would’ve led me to believe I could’ve become the next Darcy Bussell. I’ve always known my potential as well as my limitations. I’ve embraced them and worked with them.

With this notion firmly rooted in my mind, when I reached school age the prospect of being the only kid who used wheels as opposed to legs didn’t faze me. Sure, my fellow five year olds stared at me as they were asked to push me round the playground and thus were effectively told to ‘be nice to the disabled girl’, but I knew that I had much more to offer than a chair that they could take turns to push. My mission, even at this young age was to make them see beyond the chair.

I had learnt two lessons that day; in order to make people see you and not your disability, do nothing other than be yourself. And laugh…Laugh hard at everything, including yourself.

I’d love to tell you that I had a grand plan as to exactly how I was going to accomplish this, but I really didn’t. In fact, the icebreaker was entirely accidental and somewhat physically painful. A boy in the year below me unintentionally tipped the chair, and by association, me, into a patch of nettles. As I lay there laughing at my misfortune, I caught a glimpse of the poor boy’s face and realised that whilst I had found the situation hilarious, he had burst into uncontrollable tears at the thought that he had hurt another pupil. I had learnt two lessons that day; in order to make people see you and not your disability, do nothing other than be yourself. And laugh…Laugh hard at everything, including yourself.

Are you bored of me rambling yet? Oh good…I’ll carry on then.

One of the things that perplexes me most, is the assumption that disabled people are an inspiration. A case in point for this baffling concept came from an English assignment I was given which had to be based upon my first year of secondary school. I can’t remember what I specifically wrote, but I have a recollection of the poem detailing the countless risk assessments that had to be done for my needs to be met, as well as stating that I was always late for lessons because the routes that didn’t involve stairs took longer. I gave my work in with the passing thought that it was honest and humorous and didn’t think any more about it.

However, when my teacher handed the poem back to me she said that it was beautiful and that it had made her cry. In my mind, I thought her reaction was an over exaggeration as I had only done what she had instructed me to do. I remember thinking that perhaps this was simply within her character as she seemed to be the type of emotional person who would get through a box of tissues whilst watching The Notebook.

I like to think I’m grounded and I don’t for a second feel that the world owes me any favours just because I happen to have CP. I’m your average Joe (quite literally…My name is Jo).

At the point when I received two awards in one day for this ‘inspirational’ poem, things got weird. I was informed by the Headteacher that I offered an outstanding contribution to the community. To this day I don’t understand what the hype was about. I’m not saying I wasn’t grateful for the recognition and I wholeheartedly believe that many people disabled or able are inspirations. This said, it’s not like I had just climbed to the summit of Mount Kilimanjaro. If I had, I could understand what all the fuss was about, considering I can barely walk two steps before the air seamlessly runs out of oxygen. Instead, I was given praise for just being me, which I find totally bizarre. Shouldn’t everyone be acknowledged for being themselves?

So, there you go folks. Just a small snippet of my experiences as a young disabled person and some of the things I’ve discovered along the way. I like to think I’m grounded and I don’t for a second feel that the world owes me any favours just because I happen to have CP. I’m your average Joe (quite literally…My name is Jo). I’m a young woman, living on my own and I’ve just graduated from University. I hang out with my friends and adore animals. My disability does not make me abnormal or extraordinary. Everybody has challenges in life and my life is no different. The only difference is that many of my challenges include breaking down disability related barriers and mowing down all the obstacles in my path. But that’s a story for another day. If you’ll have me back of course!”

We are looking for young people to write about their experience of growing up with and living with a disability (parents can help if needed). The article can be about anything they like as we want this to be a chance for young people to write about what is important to them as an individual.  The articles will be published as individual blogs in our newsletter and on our website. If your child would like to write something for us please contact Emma Thomas on emmat@cerebra.org.uk.