Joshua’s Transition: Part 2

Emma tells us about the challenges of transitioning from child to adult services. You can read part one here.

It is now the month before Joshua’s 18th birthday, so we really are on the countdown to adulthood now. We have recently had a weekend with a hospital admission for seizures, which brought home some of the reality of what is to come.

In the ambulance on our way to hospital there was a debate between the paramedics over whether my 17 year old son would be treated by children’s A&E or Adults. The paramedic was under the impression that, as he was still in full time education, he would still be treated by paediatrics but there was some hesitation over whether or not they would accept him, once we arrived. Apparently for our local trust, adulthood begins at 16 and, after some debate, with Joshua on the trolley, they compromised and accepted him into Children’s A&E, but they warned me, if he was admitted onto a ward, that it would need to be an adult ward. I just wanted my son to receive urgent treatment and so I accepted their contradictory and confusing distinction.

In fact, when he was settled and we talked more, once they found out that he was still under a paediatric neurologist, as we had not yet been transferred to Adults, they relented and we were accepted by the Children’s ward. This confusion gave me an insight of what may lay ahead in our future, with just a month to go until this critical birthday. It seems that Joshua currently exists in an odd limbo-land.

I took the opportunity once on the ward, to ask the nurses something that had been bothering me for a long time. I had been told on one of our hospital stays, that there would be no facility for me to stay with Joshua once he was an adult, if he requires any overnight hospital stays. I was reassured to hear that this was scaremongering and that this was not the case. Nursing staff would need me there to reassure adult Joshua and to act as his interpreter too.

I did have a glimpse at the future though, that Children’s A&E would be preferable as, as the A&E consultant explained that there would be “fewer drunks and druggies in there!”, the prospect of which sent shivers down my spine. I was much more comfortable surrounded by murals of jungle animals and smiling children’s nurses, even though he was clearly too long for their trolleys then hospital beds on the ward.

After this hospital admission, I chased both his paediatric neurologist and his children’s epilepsy nurse, to remind them that Joshua’s birthday was fast approaching. Both have now come back to me with dates when we will be introduced to the new adult specialist in March. I have also had a telephone review with the Continence Service to discuss a handover to the adult service, when a home visit will be required and no doubt, they will try to talk us out of the current continence products that we are happy with and that we fought for, for a year.

We have recently had the review meeting for Joshua’s Education Health Care Plan, where both his current and adult social workers were present. There was a great deal of discussion about Joshua’s future respite and daycare, once he leaves education. At the end of the meeting, the Children’s social worker bid me goodbye and wished me luck, as she will never see me or Joshua again, which was a strange feeling. In the run up to adulthood, I keep getting these little nudges or reminders, so that I am forced not to ignore it.

Thankfully Joshua’s current respite provision has some flexibility to extend his stays, to assist with his transition to an adult respite provision. I think that I have finally found somewhere that I could picture Joshua enjoying, that is just 35 minutes from home and so we have time to plan his future there and to prepare him – and me – for the changeover. I will be emotional when he finally says goodbye to his current provider and even in the EHCP meeting, my only tears came  when I tried to express what their service and care has meant to us as a family.

But then once that is resolved, we will have to turn our attention to the even thornier issue of how he will be occupied during the day once he leaves school at 19! Joshua does not have the capacity to go on to further studies or some form of manual employment, so it will only be about keeping him occupied and happy for the rest of his life. We will be looking to replace the role that school plays in his life currently: some reason to get up and out in the morning and somewhere where he meets and enjoys the company of his peers and caring staff, while they do fun activities. I cannot address that yet, but I know that it is on the horizon and I must not leave it until the last minute but tackle it.

School will organise “taster sessions” of some alternative providers. These are big choices that we will be making together for his future and it feels a heavy responsibility to get it right for him. I am hoping that once again, I will recognise the right provision when I see it, that it will give me that sense of ‘home’ when we look around. For me, when Joshua has found the right school and respite setting, then they have both felt like home and so sadly, this birthday he will be evicted from his respite home and next year, he will be evicted from school too. Thank goodness that there is a year gap between them as to lose both on his 18th birthday, would be so unsettling and would leave us in inevitable crisis.

So that is a blessing, as is the fact that we will be supported throughout the change. I was recently asked by a parent if I would advise them to get a social worker in place, now that her son was 16, in readiness for transition. Of course it would depend on how good the social worker was, but I would not want to navigate this change without somebody who knows the system at our side, fighting our corner. Because it will be a battle, no doubt, and so we need a coach shouting out advice from the sidelines and picking us up when we fall down.

You can read Emma’s past posts here and on her blog Ups and Downs Mum. If there are any topics you would like her to write about let us know in the comments.

Meet our new Sleep Practitioners

We’re thrilled to introduce you to the two newest members of our sleep team, Carwyn Tywyn and Claire Cox.

Carwyn

Hi, my name is Carwyn and I was delighted to begin 2019 in my new role as Sleep Practitioner at Cerebra.

My early career background was in current affairs, both as an academic and a journalist. I was awarded a PhD in Welsh Politics at Cardiff University. After a brief period as a research assistant and academic tutor, I became Political Correspondent for GOLWG, the Welsh language weekly current affairs magazine. In this role, I was based full-time at the National Assembly for Wales during 2006-07.

It was while working at the National Assembly that I became more informed about and interested in the work of the voluntary sector in Wales. Since 2008 I have worked in research and senior development roles for a number of organisations, including the Disability Law Service, Home Start UK and Mencap Cymru.

My role prior to joining Cerebra was as a Regional Caseworker for the Mencap Cymru “WISE” project, which, in partnership with Cardiff Law School, provided advice and support in relation to learning disabilities. In 2018 the project was awarded the LawWorks award for “Most Effective Pro Bono Partnership”. Whilst at Mencap, I also received training in specialist approaches such as Mental Health First Aid, which has had a major influence on my outlook.

I have two children, Heledd (11) and Gwyn (6). I think it is the combination of being both a parent and frontline disability caseworker, which has attracted me to the role of Sleep Practitioner. I feel very lucky to have the chance to apply and give back some of my knowledge and experience to children and parents who may be struggling in all kinds of life circumstances.

In another life, I am a professional harpist, and was winner of the folk harp competition at the National Eisteddfod in 2013. Along with my daughter, I am a keen supporter of AFC Wimbledon. We saw them win at Wembley in 2016!

I look forward with anticipation to my new career at Cerebra. Diolch yn fawr.

Claire

Hello!

I’m Claire. I am super excited to be part of the sleep team. I can’t wait to start helping families with their children’s sleep issues and empowering them to make the changes they need.

After volunteering with many charities over the years I am so happy to be working for such a wonderful one!

I come to Cerebra from working privately in London as a Prenatal/postnatal/Newborn care specialist, trouble shooter, Nanny and sleep practitioner.

Prior to this I used to be a professional dancer which took me all over the place doing many different things!

I also had my own ballet school.

My partner and I have our own theatrical production company of which we are very proud of!

We are about to leave London to live our dream life in Clovelly, North Devon! 

It’s a big year of change for me and I couldn’t be happier to be working with all of you for such a worthwhile and needed charity!

Find out more about our Sleep Service.

Has your child been refused a continence assessment at home?

Has your local continence team told you that they can only assess your child at a school/hospital, rather than at home? Our new template letter could help you to make a complaint.

Our Legal Entitlements and Problem-Solving (LEaP) Project helps families who are struggling to get the support they need from health or social care services. A parent recently contacted the Project for advice about her son’s continence assessment. She had been told that the assessment had to take place at her son’s school and that home assessments weren’t possible. She was also told that the supply of nappies would stop if they weren’t able to attend the assessment at the school. The family wanted the continence team to be more flexible and consider giving them the option of an assessment at home, because of their son’s complex medical needs.

We wrote a template letter to help the family make a complaint to the local health authority. Our letter explains that public bodies must act reasonably and where they have the power to do something, they must be prepared to act flexibly, instead of adopting rigid policies.

We wanted to share this template letter with other families who might find themselves in a similar situation. We have separate versions for England and Wales.

Designing a better future for children with brain conditions with help from South Wales Freemasons

L - R: Marc Lewis (Assistant Provincial Grand Master), Robert Payne (Charity Officer), Terry Osborn (Head of Income Generation at Cerebra) and Ross Head (Innovation Centre Designer and Developer)
L – R: Marc Lewis (Assistant Provincial Grand Master), Robert Payne (Charity Officer), Terry Osborn (Head of Income Generation at Cerebra) and Ross Head (Innovation Centre Designer and Developer)

Our Innovation Centre and the work they do to help children take part in and enjoy life alongside their friends has been given a boost, thanks to a generous donation of £38,749 by South Wales Freemasons.

One of the many ways we support children with brain conditions and their families is through our (CIC). At the CIC, a small team of innovators design and build bespoke products to help children overcome the challenges they inevitably face when taking part in activities that non-disabled children may take for granted.

The generous grant will contribute significantly to the salary costs for the Centre’s talented design team for one year, ensuring that the Centre can continue to make a difference to the lives of children across south Wales, and beyond.

Representatives from the South Wales Province visited the Cerebra Innovation Centre on Monday 28th January 2019 to learn more about the Centre’s innovative work and some of the children who will directly benefit from their support.

One of the children they met was two year old Amelie from Swansea who has quadriplegic cerebral palsy. Before Christmas the team made a Bouncer for Amelie which has made a huge difference to her daily life.  The Bouncer allows Amelie to move independently, something that she would otherwise be unable to do. She loves the swinging sensation and can enjoy this while the seating gives her all the postural support she needs. Mum Lucy explained that Amelie loves her Bouncer as it allows her to move on her own and have fun. The Bouncer also strengthens Amelie’s legs and core muscles so it’s great exercise for her too.

Amelie
Amelie

Ten year old Bailey is also from Swansea and has been enjoying the Spinning Pod that the Innovation Centre designed and made for him. Bailey has a life threatening brain condition, is blind and autistic. Bailey has a great love of music and really enjoys bouncing and spinning – so the new chair is perfect for him. In the chair Bailey feels safe and cocooned and can spin it himself which is great for his independence and also for him to self-soothe when he feels frustrated. His mum Charlie explained that that the chair is his new safe place and he spends a lot of time in it playing the piano and with his toys. She added that it’s ‘Bailey proof’ – very sturdy and unbreakable!

Staff and pupils from Ysgol Crug Las, a special needs school in Swansea taking pupils from ages 3 – 19, also attended the event.  Head teacher Clare Hobson explained that the school has a close and long standing relationship with the Innovation Centre.

Terry Osborn, Cerebra’s Head of Income Generation, said “We’re very grateful to South Wales Freemasons for their generous grant, which will allow us to help hundreds of young people with cerebral palsy, autism and similar conditions to enjoy everyday life in the same way as everyone else.”

Rob Payne from South Wales Freemasons, said:

“I’m delighted we’re able to support Cerebra, who do outstanding work helping some of the most vulnerable people in our community to have access to the same opportunities and lifestyle as the rest of us.”

You can find out more about the Cerebra Innovation Centre and view their whole product portfolio here.

CIC is a partnership project with the University of Wales Trinity Saint David and is based within its Swansea College of Art.

Samuel discovers freedom with his Oxy-gem

Samuel and his oxy-gem
Samuel and his oxy-gem

Samuel’s mum Joceline recently contacted our Innovation Centre. As a member of a parent group on Facebook, she had seen how another child had benefited from our Oxy-gem. She knew that it would be perfect to help Samuel.

Three year-old Samuel has Down’s Syndrome and small airways disease. This means that he is on oxygen 24/7 and whilst he can walk, he could not carry the weight of his oxygen cylinder so his mobility was extremely restricted.

Joceline knew that the Oxy-gem could greatly improve Samuel’s independence and the Innovation Centre team were happy to help!

We sent Samuel one of our Oxy-gems in time for him to take it for a test drive around Blenheim Palace!

Joceline told us: ‘It was the first time he’d been able to participate on foot, rather than in his buggy.  You can see the excitement on his face.  The trolley went for a good 20 mins, on the path, on the grass, through the leaves….it was a life liberating day for him. He also uses it at school twice a week and it’s brilliant.  

Thank you so much for your help with this. I cannot begin to tell you how valuable the Oxygem is to us.  It has freed our son from the shackles of a buggy and helped him develop his independence and core strength and physical stamina.’

If you would like to find out how the Cerebra Innovation can help you, whether that’s with the Oxy-gem or if you have another challenge for the team, please get in touch! Email [email protected].

Can you guess our most popular post from 2018?

We’ve crunched the numbers, we’ve checked them twice and now we can reveal our most popular posts from 2018.

5. Is your child getting unsuitable continence products?

If you’ve been told that your child can’t have the continence products they need, you can use our template letter to make a complaint.

4. What can I do if my child needs me to be there in order to sleep?

This snippet taken from our sleep guide can help you if your child can’t sleep alone.

3. Jonas enjoys sensory toys from our library

Jonas’ parents contacted our postal lending library to borrow some sensory lights. Mum Jolanta and dad Andrej told us their story.

2. Travel insurers covering children with disabilities

If you’ve had trouble getting travel insurance companies our list of companies who cover preexisting conditions can give you a place to start.

1. Sleep tips and techniques

Our sleep tips and techniques booklet took the top spot. It’s packed full of helpful advice to help your child get a good night’s sleep.

Cerebra to benefit from Co-op Community Fund

Vanessa with Dylan, Ryan and Taran
Vanessa with Dylan, Ryan and Taran

This year we have been chosen to benefit from the Co-op Local Community Fund.

At a time when funds for charitable organisations are becoming more difficult to access, we are incredibly grateful for this opportunity to make real difference.

We are raising funds so that we can continue our work to help families who have a child with a brain condition to discover a better life together. Families who have a child with a brain condition such as autism, cerebral palsy or Down’s Syndrome face challenges every day. Just to learn, play, make friends, enjoy and experience the world can feel difficult, even impossible. But we don’t believe there’s any challenge that can’t be overcome.

Support from the Co-op Community Fund will help us to carry on supporting families like the Hoopers from Kidwelly. For seven-year-old Ryan Hooper and his family, getting a good night’s sleep was a constant struggle until they discovered Cerebra.

Ryan has Down’s syndrome and the condition often causes poor or disturbed sleep, something that affected him and had a knock-on effect on the whole family. When his mum, Vanessa, heard a representative from Cerebra speak four years ago at a local Down’s syndrome support group, she was keen to find out more about how the charity could help her son. Helping him to get a better night’s sleep was at the top of her wish-list.

Vanessa says “Cerebra’s sleep service was invaluable to us. Whenever I called they’d answer my questions and reassure me I could cope. The sleep practitioners helped us countless times and were able to get us into a routine, which gave some normality to our daily life”.

To help raise the vital funds, we’ll be relying on Co-op shoppers. Every time they buy Co-op own brand products they get a 5% reward for themselves, and a further 1% goes to local causes like ours. Co-op members can decide which local group they would like to back by going on-line at www.coop.co.uk/membership. We really hope that people will visit the website and choose to support us.

If you’re not a member and would like to support us, you can join at your local store or online at www.coop.co.uk.

When a community comes together we’re able to achieve great things, so we hope you can help promote our project.

Watch Vanessa explain what it’s like to have a child with a brain condition who doesn’t sleep well:

Cerebra and Cardiff University collaborate to advance support available to families

Hello, I’m Lowri and I’m really happy to be joining Cerebra to work on an exciting and new Welsh Government funded project, as part of a Knowledge Transfer Partnership between us and Cardiff University. Before joining the team, I worked for the National Centre for Mental Health (NCMH). The NCMH is a team based at Cardiff University, and they research the causes of mental health conditions in adults and children. Speaking with parents of children taking part in the study, it was clear that families often feel the level of support is lacking after they receive a diagnosis. This project aims to address this important issue.

We will be working with the Cardiff University Division of Psychological Medicine and Clinical Neurosciences in order to improve the helpfulness of information and the services which families and children living with rare genetic disorders struggle to access. We will be focusing on improving mental health related information available to families.

Rare genetic disorders are caused by changes in a person’s DNA (their chromosomes). These changes vary in size. That means they can either affect a very small part of someone’s DNA, or the changes can be bigger and affect a larger area. Some rare changes to our DNA can lead to serious impacts on our physical health, brain development and affect our mental health too.

These disorders are rare because individually, they are not seen very frequently in the general population. However, if we looked at the whole population altogether, 1 in 17 people in the UK will be affected by at least one of these conditions, that’s 3.5 million people! One of the most common disorders is called 22q11 Deletion Syndrome (also known as DiGeorge Syndrome), with 1 in 2000 new born children being diagnosed. Another, much rarer syndrome is called Kleefstra syndrome, and occurs in less than 300 in the UK.  Cardiff University are currently researching these conditions in order to answer the question often asked by parents: “What does this diagnosis mean for my child, and where can I get help and advice?

Research has shown that people diagnosed with these rare genetic disorders often experience difficulties with their mental health, yet families have trouble finding helpful information and struggle to access mental health and other services for their child. We believe it’s important that everyone can access useful, high quality information about mental health conditions, based on the very best evidence from research.

We aim to work with medical services, other charities, as well as families with lived experiences to get a well-rounded idea of what services currently offer that is really helpful, what is unhelpful, and what people think could be improved. We will also ask what they think about the availability and quality of information about developmental and mental health conditions in children and young people. We hope that doing this will lead to important changes in services in order to equip people with key information and empower families and children to make informed choices that are best for them.

Myself and the rest of the team involved feel very passionate and committed to this project, and hope that it will make positive changes for families in the future.

Joshua’s Transition Part 1

Emma tells us about the period of transition that her son, 17 year-old Joshua is about to face and the services that are available to help the transition. 

Joshua

I have always feared Joshua becoming older as it felt like a step into the unknown. Every birthday sounded so much older than the year just gone, the jump from 9 to 10 years old for instance seemed enormous, but of course it wasn’t at all, it is just a number. Now the jump from 17 to 18 , where we are approaching now, that is a significant change. In the eyes of the law, Joshua will become an adult next March, when he turns 18. I cannot keep my head buried in the sand about this one, this change is approaching rapidly and so I need to face it head on.

“I don’t need to think about that yet surely!”

Even as young as 15/16, health and education professionals referred to ‘Transition’ and I tried hard to ignore them and joke that I did not know what would happen next week, never mind that far ahead. But the references to transition did not go away, they gathered pace and they cropped up when we saw his neurologist who would be handing him onto an adult neurologist, our children’s epilepsy nurse who has taken care of his seizures since he was 4 years old would be passing him on and in his Education Health Care Plan meetings, when they would ask what we wanted Joshua to do when he left school at 19? I wanted to shout out loud “Stop it, he’s only 16… I don’t need to think about that yet surely!!” We had finally got to a comfortable place – he was in the best school for him, we had found respite provision that suited us all and we had established doctors who knew and understood him – and now, because of an anniversary, everyone wanted to throw all that we had carefully built up into a big bag and shake it up. I resisted it with all my might.

Opportunity

Then something changed this May and I began to relax and embrace the change, to see it as an opportunity rather than a threat. This change was due largely to one person: a social worker who was allocated to us from ‘Futures Plus’, who would represent Joshua once he was an adult. She paid us several visits, getting to know both us as his parents and Joshua in his home, school and respite session. She always delivered what she promised to do and most importantly, she listened, giving us the time to explain how we felt or how things are, she even saw my husband and I separately, which  nobody has done before, to explore our very different perspectives.

Respite for young people

In my mind I had envisaged adult daycare and respite services as being grim places, where my 18 year old son might be mixing with 80+ year old dementia sufferers, with the staff trying to juggle their very different needs. Our social worker immediately explained that there were facilities specifically for young people  and so I relaxed and decided that Joshua might actually enjoy the next step of his life, rather than it being a necessary evil. She visited all of the local adult respite places and even rated them from her own perspective, but encouraged us to visit each one to make up our own minds. I am confident that she too is determined to find somewhere suitable for Joshua’s needs. We have prioritised Respite as his current facility cannot have him beyond 18, whereas he can stay at school , in 6th form, until he is 19 so we have an extra year to find daycare solutions. So far we have looked at 2 of the 4 in our local authority area and I plan to get round the others this month. Joshua had to go out of area for his current short breaks and we have been reassured that if there is nothing suitable locally, we can argue that Joshua’s needs can only be met by a provision out of area. So far I have to say that I have found nothing that comes close to his current provision. I will not compromise, he will not be going somewhere mediocre just because it is local. I now know what I am looking for, as we have experienced the best, and I will keep searching until I find it.

Change

I have never been good at change, it always seems to be forced upon us just when things are settled. I can recall begging Joshua’s nursery school head teacher if he could stay with her until he was 16 please. She replied kindly, “No Emma, he can’t, he will get to be too big for the furniture here”. We made the move to mainstream primary, then to a special school and then to his current special school so, given that I hate change, we have done a fair amount of it in Joshua’s 17 years and of course, we survived. The difference is that this time we have a social worker by our sides who will help us to negotiate our way through this mysterious maze and help to pull us through – I am sure.

As we approach March 5th, I will update you on how we are handling transition and will outline the highs and lows that we are bound to face. I sincerely hope that our experience may help some of you who might also have a son or daughter who is approaching this critical age. I do not want to scare those readers who have ten year-olds now, but this Transition will come much faster than you think, so it is worth thinking about it sooner, rather than later. If I had read that in 2011, I know I would have ignored that advice, thinking that it was not relevant to me, but I would urge you not to be an ostrich like I was. Perhaps you can learn from my mistakes, so that you can hear the ‘transition’ word without a shudder.

You can read more from Emma in her article ‘Introduction to us‘ and on her blog Ups and Downs Mum. If there are any topics you would like her to write about let us know in the comments.

Imogen draws our Christmas raffle winners

Imogen with (L-R) our Head of Income Generation Terry Osborn, Neil form Specsavers and CEO Chris Jones
Imogen with (L-R) our Head of Income Generation Terry Osborn, Neil form Specsavers and CEO Chris Jones

We held our Christmas raffle draw on Wednesday 19th December and had a very special guest do the honours.

Seven year-old Imogen has had an impressive year having climbed Pen y Fan with a little help from our Innovation Centre and it only seemed right that she should help us with this very important job!

We were also joined by Neil Robinson from Specsavers, who named us as their charity of the year in south and mid Wales and have done amazing for us over the course of the year.  

We had our giant tombola filled with over 100,000 Christmas raffle tickets that our generous supporters had purchased and Imogen dived right in, choosing the three top prize winners and ten runners up.

The top three winning tickets are below and the rest will be available here soon. Check your tickets!

PrizeWinning Ticket Number
£5,0000801486
£1,5000406934
£5000668630