Author Archives: Sarah Jones

Poppy to Take on Second Triathlon Challenge

Rob and Poppy

Rob and Poppy

Last year, eleven year old Poppy Jones realised her dream of competing in the Cardiff Triathlon. This was particularly challenging for Poppy as she has chronic lung disease and quadriplegic Cerebral Palsy. This means she can’t sit, stand, roll or support herself and life is a daily challenge for her, but having a life-limiting condition doesn’t stop her having fun.

Poppy’s Dad Rob helped make her dream come true by pushing/pulling her around the course using custom made equipment specially designed by our Innovation Centre (CIC).

The father and daughter team will be once again rising to the challenge, taking part in the Swansea Triathlon on 28th May.

Rob’s motivation for doing this is simply to help his daughter: “taking part in this triathlon is so exciting for her and psychologically it will really benefit her. She gets so frustrated at the limits her condition puts on her and this will really focus her mind on what she can do. Poppy doesn’t think ‘I can’t’ but rather ‘with a little help I can’. I’ve got my work cut out though as Poppy doesn’t want to just take part – she wants to win!”

The team at team at the Innovation Centre, who designed the equipment that allowed Poppy to take part in the Triathlon last year,  took this opportunity to re-design some of the equipment to allow Poppy to compete on an even larger scale.

“Last year, we designed a chair and boat in Poppy’s favourite colour – yellow,” says Dr Ross Head from the CIC.

“For this year’s challenge, we’ve modified both products to make them more efficient; to make them faster – and to change the look to match Poppy’s new favourite colour, orange!

“Poppy’s also grown a lot since last year’s triathlon and the boat we built last year was too small. So I redesigned the boat to be bigger, however this meant it would be heavier, so I started from scratch using everything I had learnt about hydrodynamics to ensure the boat would be fast, efficient and create the minimum resistance so that Rob could swim the course. This year’s boat uses a V-shaped tri- hull. This allows speed through the water but is given stability by the two smaller outrigger hulls.

“Poppy’s Triathlon Chair has also been upgraded to make it faster and more comfortable. The guys at V-Trak very kindly donated some high quality wheels to help them roll to the finish line. It has upgraded bespoke components which will ensure efficiency, a speedy transition from cycling to running and ensure Poppy’s safety.“

The CIC team recently tested the boat out on the water (see below for photos).

You can sponsor Rob and Poppy through their Just Giving page.

 

 

1000 Families Study – Age Range Extended

Are you the mother, father, or caregiver of a child aged between 4 and 15 years, 11 months who has a learning disability?

Our 1000 families study, carried out at the University of Warwick, is exploring the experiences of family members who live with a child with a learning disability.

The study has recently received permission from the NHS Research Ethics Committee to extend the age range. We can now include children in the study if they are between the age of 4 and 15 years and 11 months (previously 4 and 11 years and 11 months). We heard from a number of families who would have liked to take part, but were unable to because their child was between the ages of 12 and 16 years. If this is you, we’d  love to invite you to get involved.

We are really keen to survey at least one person in the family (especially, a mother and a father) to explore whether family members have similar or different experiences and capture the experience of the whole family. We want to make this the largest study ever of families of children with learning disability in the UK and help shape future information and support.

University of Warwick logoIf you are the parent/caregiver of a child with a learning disability between the age of 4 years and 15 years and 11 months and would like to take part in a large scale family research project, please follow this link to find out more and complete the online survey.

If you have any questions please don’t hesitate to contact the research team on familyresearch@warwick.ac.uk or call 02476 524139.

 

Angelicus Celtis Wow Britain’s Got Talent Judges

Angelicus Celtis during one of their shows

Angelicus Celtis during one of their shows

Our Ambassadors Angelicus Celtis wowed audiences on Saturday’s Britain’s Got Talent with their stunning rendition of Nessun Dorma.

Angelicus Celtis are avid supporters of Cerebra and are always eager to be involved with the local community. They recently held a successful “Sing and Play” event where they invited our families to come along for a morning of singing and fun.

They have also raised money for Cerebra through several of their concerts and supported us at several major events.

The choir is made up of a group of school girls from Llanelli and entered the competition determined to try and win for their hero teacher Mr Williams, who was recently in a car accident. Mr Williams and his wife came up with the idea of forming Angelicus from the ranks of the Hywel Girls’ Choir & Hywel Boy Singers.

They have done Mr Williams proud so far but now they need your help! They need your support to help them win Britain’s Got Talent! Every vote counts and will help them get to the final. It’s really easy to vote, all you have to do is download the Britain’s Got Talent app for your smartphone or tablet and follow the instructions when voting opens during the live shows.

 

 

 

 

 

 

Let’s get them to the final!

Watch their emotional first audition:

 

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Leah Makes Sense of Her World

The whole family!

The whole family!

“Leah turned 5 in February and she has a diagnosis of severe global development delay, vision impairment, hypermobile joints and autistic features. When Leah learned to walk just before she turned 4, it was a magical moment for us.

Leah lives with me (mum- Michelle), Dad (Mike) and brother Ashton. I’m not going to lie, life is hard and we live on a emotional roller coaster that has, at times, really tested us.  Leah is our world and she has changed our life and made us better people, but having a child with additional needs is challenging in so many ways. It makes every aspect of family life harder.

Leah has no sense of danger, you could say she’s on a level with a 9 month/1 year old’s understanding and is into exploring the world. But as she is 5 years old and growing fast, it can be very challenging.

Where do I start trying to describe our beautiful girl who is a mystery to so many? You really have to step into Leah’s world to work it out! Anything sensory, music, eating, water, light up balls and throwing things and exploring are the things Leah loves to do. Leah has no play skills other than playing catch with us but even then she will throw the ball away from us – normally into a narrow corner somewhere that we can’t get to! Leah is non verbal and as yet we haven’t been able to find anyway to communicate. She is good at taking your hand though and leading you to where she would like to go.

Leah attends a amazing school in Poole. They have really helped us, along with other professionals, to understand her world. We have become experts in learning through the senses!

Michelle and Leah

Michelle and Leah

Leah is our beautiful girl who has shown us how to parent in a different way. Our son Ashton is fantastic with his sister and we are so proud of him. Sadly lots of times we can’t always be the parents he deserves and that makes us sad.

Leah often gets frustrated with not being able to communicate but has learnt that if she pinches us she gets a reaction so unfortunately we get a lot of this at present. Screaming is another behaviour she has adopted.

I have had some fantastic support from friends and family but sometimes life can be isolating as taking Leah to peoples houses and going out can be so challenging. It’s hard not think ahead and how much harder life will be so we try so we just try and stay in the  present.

We are currently trying to get support from social care to see if we can get some respite. It’s not something I thought we would never do but we need to be strong to care for Leah and getting some days to recharge are what we sadly need. Unfortunately I think it’s going to be hard as so many cuts have been made.

We are in the process of adapting our house. Leah can’t get up and down stairs and all the lifting has given me a bad back. We are also putting gates in place to block off kitchen as Leah’s exploring just isn’t the safe in kitchen.

Overall we are happy, apart from some days (we all have them). Leah has taught us all to look at life very differently and become more understanding people. Leah has developed more than I ever thought she would and we pray she will continue to improve”.

Written by Michelle, Leah’s Mum.

Michelle recently attended one of our advice clinics run by Regional Officer Lilly Fahey. We hold lots of information and advice events throughout the year. Keep an eye on our What’s On page for the latest events in your area.

Sleep Walking to Success

The walkers before they set of

The walkers before they set off

On Saturday 6th May we held our second walk to the top of Pen-y-Fan in the Brecon Beacons to raise vital funds for our Sleep Service.

Following a safety briefing from the fabulous mountain rescue team, our brave walkers grabbed a glow stick each and, with an overwhelming sense of camaraderie, made their way to the summit!

This year, we were also joined by the Côr CF1 choir who not only braved the walk to the top of Pen-y-Fan but then entertained everyone with a few songs at the top. They were in fine voice, even after the trek up the mountain!

So far, this year’s Sleep Walk has raised well over £3000 and this will help fund our Sleep Service which aims to help families with children with brain conditions get a good night’s sleep.

We would like to say a big thank you to everyone who took part in the walk and for joining us on our journey to help families discover a better life together.

An End to Sleepless Nights

Our Sleep Service gives support to families when their child is having sleep difficulties. Sleep Practitioner Catherine Stone recently helped a family experiencing sleepless nights and mum told us  how Catherine’s support had helped them.

“Thanks for helping us to get our 5 year old son back into a good sleeping pattern.

M has Tuberous Sclerosis with Epilepsy and Autism. He was always a great sleeper until his epilepsy medication stopped him sleeping. He began waking several times at night and wouldn’t go to bed. Catherine gave us advice and support and kept in touch until we had him sleeping peacefully again. Then we moved house and M began having the same problems again!

Catherine came to see us again with more advice and support and M is now thankfully sleeping well again from 8pm to 7am. What was helpful along with the advice and support was Catherine’s belief that our child could sleep well, that we didn’t have to accept the sleepless nights. Many parents think it is hopeless and accept it. But I can handle the challenging behaviour so much better if I’ve slept well and M needs to sleep too, his behaviour is better if he is well rested”.

Catherine explains “M’s difficulty settling and night waking was having a big impact on mum and dad and on family life. M’s problems re-occurred when the family moved house so we looked at trying to get M’s bedroom similar to his old one. We also developed a routine to gradually remove mum and dad out of the bedroom.”

If you would like some help from our Sleep Service you can find out more here.

Help with night waking

Mum Tammy was struggling to cope with her daughter’s night waking. Our Sleep Practitioner Claire Varey describes how she gave them some practical advice and support and Tammy explains the impact this has had for her family.

 

“I first had contact with Tammy back in July 2016. Tammy had completed one of our sleep questionnaires and a sleep diary which gave some basic information about her daughter’s sleep habits. I arranged telephone support for Tammy and we discussed the issues that her daughter, Amelia, who was 4 at the time, had with sleep.

Amelia has Autism and likes the things she likes, but it can be very difficult to get her to engage in any activities or interests if she doesn’t want to. There had been some progress, but Tammy was finding it difficult with the late nights, spending a long time settling Amelia and the continued night waking episodes. Amelia was also having day time naps and was quite reliant on her tablet.

We discussed how these things may be impacting on her and agreed some changes to their routine that may help with settling at night – and hopefully over time improve Amelia’s night waking. We identified that having a bath as part of Amelia’s bed time routine may be stimulating her and so I suggested moving it to earlier in the evening. I felt it would also help to introduce some calming activities, supper and massage before bed.

For Amelia’s bedroom we spoke about using the relaxing scent of lavender to help Amelia associate her bed with being calm and sleep. Also the introduction of a red light would help her understand that it was time for sleep and, if she should wake at night, the red light and the scent of lavender, would help her understand that it was still time for sleep.

The other important factor to look at was the day time nap. We spoke about trying to reduce the length and time Amelia slept – this was especially important as Amelia would be starting full time school within the next 6 months.

We keep in touch via text and although progress has been up and down, there has been an overall positive improvement. Amelia is getting more sleep, she has dropped her day time nap, is settling well and has a better quality of sleep. This is also having a positive effect on her mood and concentration”.

Tammy told us the impact the support Claire has given her has had on her and Amelia:

“From my first telephone conversation with Claire I felt hugely positive about the task that lay ahead. The ultimate goal was to gain more sleep for Amelia and ourselves but for now any step no matter how small would make a huge difference.  Understanding the basics of how sleep works was a massive eye opener. It was really interesting and helped answer some questions I didn’t really know I had until Claire explained sleep patterns to me.

At the end of our first phone call I was yawning my head off so knew I was onto something good.

With Claire’s help we managed to identify that a bath actually stimulates Amelia’s body and so has the reverse effect. Claire advised me to do something with Amelia to get rid of excessive energy for 10 minutes; to use lavender in the bath with some in her room, delta wave music and a red light in Amelia’s bedroom. I felt that the light and the music didn’t do very much but the lavender helped a lot. Very quickly I noticed the time it took Amelia to switch off went from between one to two hours to between 5 and 35 minutes.

When we first started our journey Amelia was having naps after school so Claire explained about not letting it go past an hour, which we didn’t always do especially if Amelia wasn’t right in herself. Since actively encouraging less naps Amelia’s body has naturally adjusted and she now has no naps in the day.

Claire is amazing she listens and is genuinely interested. She regularly checks how we are doing and even though we have never met she has been a fairy godmother for us. Claire is happy to go with what worked for us, never stressing that we shouldn’t be in bed with Amelia which we still are and allowing us to set our own goals.

In the past few weeks Amelia has started going to school until the end of the day and is now in bed between 8pm and 10pm. She still stirs in the night but isn’t awake as often as she was before.

Amelia seems to be learning more and I am sure a lot of this is down to her brain not being as tired”.

If you’d like some help from our Sleep Service you can find our more here.

The Effect of Delay in Autism Diagnosis

We’ve been asking parents to share their experiences with obtaining an Autism diagnosis for their child and the effects that delay can have.
In this article one family tell us their experiences.
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“Our daughter never slept easily. Midwives, health visitors, GPs, all offered advice and we tried everything. Our health visitor finally advised me to have one night a week in a hotel to save myself. Our daughter was apparently thriving, despite the lack of sleep, and no one had any other suggestions or reasons why.

Going into toddlerhood, cuddles were hated, eye contact wasn’t comfortable and things had to be a set way, e.g. the right plate, fork and spoon, sandwiches cut neatly into squares and on the plate in a specific pattern. However, speech was well developed, she practically taught herself to read fluently by age 2 and a half, and she could identify and add numbers ridiculously early. The nursery school were astounded and heralded her as a genius – so what that she preferred adult company and had some quirks? By this time her younger brother had arrived and he did elicit a closer relationship, rough and tumble, eye contact, etc. We didn’t worry.

In the first year of primary we noticed an increase in tics and obsessive behaviour. We mentioned autism, but the class teacher asked “why label?” and we decided to watch and wait. The teacher was particularly good at explaining why rules existed, why, in an emergency; our daughter couldn’t do her buttons up in a set order and take her time in the way she liked. Our daughter apparently thrived, becoming sociable and less obsessive. It was a classroom environment and teaching style that suited her – had it been different, we might have seen problems earlier, who knows?

As primary progressed we saw increasing abdominal pains, later diagnosed as infant migraine. We now know it was likely due to the level of stress she was carrying. Academic progress was exceptional until the junior classes, when she seemed to stall. It was put down to focusing on social interaction, later to laziness – always the argument was that she was a high achiever, she’d catch up easily when needed, she was already so far ahead it wasn’t important. Writing became a problem and we (at home, via support lines, and Google) diagnosed dysgraphia. This seemed to explain a number of ‘symptoms’ we’d seen and we dropped all thoughts of autism. We requested intervention from the school SendCo – it was by this time her final year at primary and her class teacher firmly believed her attitude was the only problem. The SendCo never observed, never assessed.

Our daughter chose a secondary school where few of her friends were going – she wanted a new start. The first year was wonderful: top classes, after school clubs, positions of responsibility. In Year 8 a number of things happened. Puberty hit and her body began changing in ways she was uncomfortable with, GCSE options had to be made and teachers were constantly pushing for ‘future plans’ to be made, peers were starting to form relationships, to talk about who they wanted to go to the Year 11 prom with and who they wanted to marry. At the same time, her brother fell ill with ME/CFS and so she lost her closest playmate and, as we now realise, social support.

The lack of sleep began to catch up – she had only ever managed 6-7 hours a night, although now older she would rest quietly and not disturb us. We contacted the school regularly with niggles – she’s exhausted today, she has a migraine today, she doesn’t understand what the teacher said, another child has been teasing her, and so on. The GP advised us to stick to waking her at 7am – on no account to ‘give in’, as this stage is just normal teenage stuff. By Year 9, grades had plummeted and after school activities diminished. Following a viral infection that seemed to be the straw that broke her, she was attending school only in the afternoons and we were receiving letters threatening court action. We asked repeatedly for a referral to the ASD team locally – the GP argued it was the school’s responsibility, they argued it should be the GP. We spoke to organisation after organisation, trying to join the dots.

We concluded she has high functioning autism, she has learnt to cover this, but has become utterly exhausted and unable to function fully. The school made the referral. Weeks later we have received a letter advising us it doesn’t give enough information to earn an assessment and we have now submitted our own evidence. We are told the wait, if granted an assessment, will be over a year – by which time she will be over 16 and will have left school, and will have to be re-referred to an adult team. In the meantime, the school are trying – but staff still ask her ‘when do you think you’ll be better?’ and her Autism Champion mentor forgets to turn up for appointments. The belief is that she is coping well – staff don’t see the fall out, or appreciate that her ‘good’ behaviour is just trying to fit in, and carries huge cost.

Interestingly, I recently bumped into some staff members from her primary school. I told them we were waiting for an ASD assessment. No one was surprised and all nodded and said it had always been pretty obvious. The huge question then is, why, oh why didn’t anyone mention it? The answer I suspect is that she was achieving educationally and behaving well, neither she nor I were making a nuisance of ourselves.

The current system encourages our children to make themselves ill, to fall seriously behind at school, to lose friendships, to take themselves to the brink before anyone helps. We have supported and protected our daughter, but in doing so we have continued the charade – allowed her to pretend at school and fall apart, unseen, at home”.

If this has struck a chord with you, we’d love to hear your story. Please get in touch with sarahj@cerebra.org.uk.

Cameron Gets Around on His New Scooot Seat

Louise French recently got in touch with us after she saw a Scooot Seat in action and knew it would be beneficial for her son Cameron. She told us their story.

Cameron was my third baby. He was born a healthy little boy, brother to Harris and Alfie, he made my family complete.  At 5 weeks old he became ill and was admitted to hospital where unfortunately he suffered a cardiac arrest which resulted in lack of oxygen to his brain and this resulted in an acquired brain injury. He spent the next 6 months in hospital.

The brain injury has meant that Cameron can’t safely swallow so he has had numerous operations and is now fed through a peg in his tummy.  He cannot communicate and is unable to sit up unaided and cannot walk.  It has been a long and hard 3 years looking after Cameron and coming to terms with his disabilities.  Cameron has very challenging behaviours which we believe are mainly due to frustration.

Cameron gets very frustrated as any 3 year old. He wants to run about and play with his brothers and other children but due to his disabilities he cannot. We had no means of Cameron moving about the room to follow his brothers and to get from room to room.  When playing outside Cameron just had to sit in his wheelchair and watch the boys.

Christmas 2015 we went to our Portage Christmas party were we saw a little boy on a Scooot Seat and we thought that maybe that if we could maybe get one of these Cameron would be able to join in with others while building his posture and potentially helping him to sit independently. Our Portage worker went out of her way to get us one to borrow to see how Cameron went on. Unfortunately there was so much demand for the equipment we were only able to borrow for a couple of weeks which wasn’t long enough for Cameron to get used to it.  We therefore put an application to Cerebra for a grant to purchase a Scooot. We waited patiently and we eventually got a letter to say our grant was successful and the Scooot was on order!

The Scooot got delivered about a month ago and to say it has opened up so many opportunities for Cameron is an understatement!  He is now following us round the room and joining in with his brothers when playing.  He has even started to sit unaided since using the scoot which is a real achievement for Cameron.  Today we took the Scooot outside in the garden and we played football, Cameron was so excited it was absolutely brilliant.

All I can say to Cerebra is thank you because you have allowed Cameron the ability to join in with so many things and without your assistance we may never have got the Scooot.

Thank you Cerebra.

The Scooot Seat was originally designed by the team at the Cerebra Innovation Centre (CIC) and is now manufactured by Leckey.
Julie sent us this lovely video of Cameron enjoying his new Scooot Seat.

Holly’s Rocking Dinosaur!

Holly and her rocking dinosaur

Holly and her rocking dinosaur

Liz and Jim are parents to 15 month old Holly and they recently contacted the Cerebra Innovation Centre (CIC) with a challenge to complete in time for their daughter’s first birthday. They told us their story:

“We contacted the Cerebra Innovation Centre (CIC) after realising the first birthday present we had bought for our daughter, when she was just a month old, was completely inappropriate. Holly loves rocking and we really wanted to get her a rocking animal for her first birthday and we found a dinosaur. The problem was that it was unlikely Holly would ever be able to use it as it had no harness or support.

Holly has a rare chromosome disorder. She has duplications on 2q24.2 and 2q24.3. This manifests as Holly having hypotonia, global developmental delay, visual impairment, Sandifer Syndrome and food allergies. She is at a high risk of developing autism and epilepsy but we are lucky that she seems to be ok at the moment. As Holly has hypotonia her core is very weak and so she struggles to sit unsupported.

Holly is a really happy, wonderful little person and we wanted her to be able to enjoy her rocking dinosaur. We approached Ross and the team at the CIC to see if it would be possible to convert her toy so she can enjoy it safely, as it is one of the few toys she has that is just for her to have fun and enjoy being a little girl. They rose to the challenge beautifully and added pieces to it so that we could attach the Firefly GoTo seat, which would keep her safe.

Holly loves her dinosaur, she can make it rock by herself and she is independent.  We are so grateful to Cerebra for making this possible for Holly. It even arrived back in time for her first birthday!”

If you have an idea for a piece of equipment that you would like the CIC team to build, you can get in touch with them at cic@cerebra.org.uk or 01792 483688.