Category Archives: Information and Advice

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.

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.

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.

Is your child getting unsuitable continence products?

Have you been told that your child can’t have the type of continence product that she needs? Are you concerned about the quality of the products you use? Read on to find out what you can do to make sure your child gets suitable products.

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. We helped Louise get continence products for her daughter, Rhiannon and asked the Welsh Government to make sure that its guidance did not set a daily ‘maximum’ on the number of products available to families.

We also know from our work with families that the type and/or quality of products can cause problems too. We recently heard from a parent who wanted ‘pull-ups’ for her daughter instead of nappies. She was told that her local health authority didn’t supply them and she contacted the LEaP Project for help.

We wrote a template letter to help the parent make a complaint to her local health authority. Our letter quotes from the relevant guidance, which makes it clear that children should be assessed and provided with products which meet their individual needs. We wanted to share this template letter with other families who might find themselves in a similar situation.

So, if you’ve been told that your child can’t have the products s/he needs, you can use our template letter to make a complaint. We have separate versions for England and Wales.

That dog has got a beard!

We’ve got a great new children’s book in our library that explores the consequences of being different. ‘That dog has got a beard!’ is all about Buster who feels sad and worried because every time he goes out for a walk people stop and stare at him. He doesn’t know why this is happening but with a little help from his family, he begins to realise that being different isn’t such a bad thing after all.

Author Natalie Ann Beattie told us a little bit about herself and the reasons why she wrote the story:

“First and foremost, I am a mother of two young children, Ethan and Isobelle. Ethan is 13 years old and Isobelle is 6. My son Ethan has Autism and ADHD, which are both very challenging and complex conditions. Before becoming a full-time mum and carer for Ethan, I was a Primary teacher for almost 10 years. I taught children from the age of 3 up to 11.

When my son was a little over 18 months things began to change, he stopped speaking and eating, and his behaviour became challenging and repetitive. I left my teaching to focus on his care, and at the tender age of 4 he was diagnosed with ASD and, two years later, ADHD. I have spent the last 10 years plus gathering all the appropriate help and support required to manage his condition and thus enable him to develop socially, as well as mentally and physically. As you can imagine, it has been an incredibly difficult and challenging journey for all of us. However, the time has come to use all those years of experience in a positive and fulfilling way.

“That dog has got a beard!” is essentially a story about a dog who, because of the way he looks attracts a lot of unwanted attention from other people. When the owners of the other dogs start talking about Buster’s beard and laugh at him, he becomes sad and worried and struggles to work out why he is different to everyone else. Fortunately, with the help and love of his family he learns to embrace his difference and become a happy dog once again.

The story is loosely based on some of the negative responses we have received as a family when we have gone out together with Ethan and something has triggered a ‘meltdown’. The frequent stares, snide remarks and hurtful comments have been devastating and a cruel reminder of the need for people to accept and become more aware of children and adults with autism. We have learned to embrace our son’s condition and to see him as a very special and wonderfully unique young person. I felt that now was the time for the rest of society to appreciate his autism and learn to celebrate, not mock, other people’s differences, whether they be physical, mental or behavioural. In essence, for society to accept him, not the other way around.

The second reason for my story is a simple one. Every time we go out for a walk with our Labradoodle, Buster, people stop and make a comment about his beard. The phrase ‘that dog has got a beard’ was one that I heard so many times that it sparked off the idea for the book. How often do you see a dog with a beard? Especially one that is 7 inches long! Buster is a wonderful dog and has an amazing temperament. He is loved wherever he goes and we are regularly invited to schools, mother and toddler groups, sports clubs and residential homes to do book readings. Buster is a hit with all ages.

Thank you Cerebra for including my book in your library.”

You can borrow ‘That dog has a beard!’ free of charge from our postal lending library.
You can also find out more on Natalie’s website and follow Buster’s adventures on his very own Facebook page .

Accessing Public Services Workshops

accessing public services workshops

Are you interested in hosting a workshop to help families access services for their disabled children? We are taking bookings for our popular Accessing Public Services Workshops for 2019.

The workshops are based on our comprehensive problem solving Accessing Public Services Toolkit which you can download for free from our website. We also have a version for Scotland.

The Workshops are run by our trained facilitators and will help parents and carers to access health, social care and other services for their children. They include case studies and template letters on direct payments, respite care, Disabled Facilities Grants (Disabled Home Adaptations in Scotland), residential placement and school transport. By the end of the workshop, parent/carers will be able to:

  • Identify commonly occurring problems facing families accessing services and recognise different types of dispute
  • Come up with problem-solving approaches to these problems
  • Use a number of template letters when corresponding with public bodies

The workshops have also been accredited by the CPD Certification Service.

The workshops are free of charge and open to any organisation or parent/carer forum that supports children with a brain condition. They usually run from 10am to 2pm to fit in with the school run. All we ask is that the organiser provides a venue (with a projector), the attendees (a minimum of 10 and maximum of 25) and that there is a 30 minute lunch break. It’s up to the organisers whether they provide refreshments or ask those attending to bring their own.

The workshops have had great reviews and some of the feedback includes:

“The training was very useful and highlighted to me how much I roll over when asked. I now feel empowered to be able to get those things which my son needs”.

“I found the information really helpful also and feel sure it will help me support our families better in tackling some of the issues we discussed”.

“Thank you again for your support through our journey, we do not regret making the complaint, nor where we are now. Too many people here do not get the support they are entitled to but we were the ones that stood up”.

“Knowledge is power! We need as many of these sessions as possible to enable us to take action”.

If you are interested in hosting a workshop then please get in touch with [email protected]

Book reviews

two little boys reading

Our librarian Jan reviews two new books you can borrow from our postal lending library.

there are things I know book cover

‘There are Things I Know’ by Karen B Golightly

What happens when a man you’re sure you’ve never met before picks you up from your school trip and says you mum has gone to heaven and you have to go to a new school? Well if your mum has taught you The Survival Game, you are good at maths and love computer games surely things will work out OK. Told by 8 year old Pepper who has his own way of looking at the world. Can he work out how to find his mum and older brother and sister? He may love helping out with the chickens and the teachers at his new school but does he really believe his mum is in heaven? There are things he knows and he knows that his mum is not dead. An intense read that keeps you in suspense right up to the end.


eye can write book coverEye Can Write by Jonathan Bryan

This is a very special book written by a 12 year old boy who is unable to talk or write, he has spelt out letter by letter using a spelling board. You can watch him doing it on his blog.

In the book you really get a sense of Jonathon’s love for life. He tells us about the inner world he inhabited before he was able to communicate and how it felt to finally be able to interact with his family and the world around him. He writes with joy about his sisters and his friend at the special school, Will. Jonathon tells us about the long process of learning to use the spelling board and how frustrating he finds eye-gaze technology.

He has won several awards including a ‘Diana Legacy Ward’ presented to him by Princes William and Harry and tells us about his experience of that night. And he writes about ‘Teach Us Too’, the charity he fronts that aims to promote the teaching of literacy to all children, regardless of their disability. We are sure to hear more from this remarkable young man in the years to come.


To borrow both either these books from our library contact Jan on [email protected] or 01267 244203.

An introduction to us

My name is Emma and I am married to Michael – it is our 23rd wedding anniversary today – and together we take care of Joshua, our 17 year old son.

joshua and emma

Joshua was born on 5 march 2001, after being induced as he was two weeks overdue. It was a very speedy delivery, which I do not remember too much about, but he began fitting as soon as he was delivered and so he was taken away to an incubator immediately. Later that same day, when he continued to fit and required oxygen to breathe, we were both transferred in separate ambulances to the Special Care baby unit across the city. We stayed up all night watching him and jiggling him as we had been shown, when he forgot to breathe.

On our 4th day in SCBU, Joshua had a MRI Scan and we were told that he had ‘devastating brain damage’ due to a stroke, and that he may not see, hear, walk or talk. This was unbelievable news to absorb and it took another week in SCBU to adjust and to get to know how to care for him properly.

When he was 11 days old we brought him home and we tried to do what we had been told, to treat him like a normal baby. We had no other children so that was all that we could do and Joshua thrived. He grew from being a very thin, newborn to a chubby, smiling one year old. We had regular health visitor attention and Joshua received Portage input too. With the help of splints, Joshua walked and he talked, he would say “hiya” to everyone when out shopping. So I was able to fool myself into believing that, he may be a bit slower than his peers, but that he would achieve all of his milestones.

It was only when Joshua started at Nursery school, when he was at aged 3 or 4, that I suddenly saw that my bouncing boy was not the same as his friends, and it came as quite a shock. At 4 years old, epilepsy became a real issue and we had to start on anti-epileptic drugs. Joshua progressed with his peers to mainstream primary school and thanks to his brilliant Nursery head teacher, he had a statement which meant that he had a full time teaching assistant to support him there. He loved the first couple of years in reception classes, when he would sing at himself in a mirror – he did a great rendition of ‘Magic Moments’ and ‘Close to you’.

But as everyone got older, he was spending more and more time alone with his TA in a small room playing with toys while his peers were learning maths and history. So we made the difficult decision to apply for a Special School place for him. When he was 7 years old, Joshua left his ‘friends’ behind and changed to a special school. His first was not a great success as it coincided with his epilepsy getting much worse and the school was simply not equipped to deal with the aftermath of seizures, so he was forever being sent home or sent to A&E in an ambulance.

In 2011, when Joshua was ten years old, we went to a tribunal to move him to another Special school, which had school nurses on site. Joshua is still at that school now, in their 6th form, and it suits him very well. When you find the right placement for your child, it is a very comforting feeling, as though he has gone ‘home’. I like the school so much that I have become a school governor and volunteer there a lot. I have a mission to support other parents and to encourage them to socialise more, so I run a monthly coffee morning for parents when we enjoy cake and chat. I have also just begun to organise termly mental health sessions for parents and carers, as it is still a taboo subject and yet a very real problem among our community of parents.

However the end is well in sight. Joshua will have to leave this school when he is 19 years old, in July 2020 and so we will soon begin the ‘transition’ process. I detest transition as in my experience, it involves changing from a comfortable, familiar environment to one that is unknown and frightening. I begged Joshua’s nursery head teacher to keep him there until he was 16. She refused, on the grounds that he would be too big for the furniture! I have stopped begging now. I realise that time moves on and that Joshua will have to too, but it does not mean that I have to like it. I have made great progress in the last year as I am no longer an ostrich about it and that is largely due to our Adult social worker who has given me more confidence and keeps us on track.

We are currently in the process of looking around alternative respite provisions, as where he currently goes once a month for a weekend’s short break, will no longer be able to keep him once he turns 18 next March. Once that is resolved, we can turn our attention to his day care provision. We are going to lose the epilepsy nurse who has supported us for the last 13 years, as we are transferred into adult healthcare. It is all change, so turning 18 for Joshua is not like the momentous milestone that it is for his peers: it will not be about legally drinking alcohol and going to university for Joshua, it will be about transition to adult services and starting again, just as we were on an even keel with his health and social care.

You can read more from Emma on her blog Ups and Downs Mum. Emma will be writing some articles for us so if there are any topics you’d like her to write about let us know in the comments.

Special Educational Needs reform in Wales

The special educational needs (SEN) reforms in Wales are now a little under a year away from their introduction. The Additional Learning Needs (ALN) and Educational Tribunal Act was passed in January of this year and will begin to be rolled out from the start of the new school year in September 2019.

What are the reforms?

There will be some significant changes. For instance, as the name of the act suggests, the term ‘special educational needs (SEN)’ will be replaced by ‘additional learning needs (ALN)’. This in turn means the SENCOs will be known as ALeNCOs. School/Early Years Action, School/Early Years Action Plus and statements will disappear and every child with recognised ALN will eventually be issued with a new statutory document called an Individual Development Plan (IDP). This is not to be confused with individual education plans (IEP) which will also be phased out. Unlike statements, which stop when a young person leaves school, IDPs will continue up to 25 years of age if the young person goes onto further education.

The Welsh Government has produced an overview of the new system and has compiled answers to some frequently asked questions: together they will give you a good idea of how the Welsh Government expect things to work.

What happens next?

As the transition to the new system will involve major changes for local authorities, schools and further education colleges it will be introduced gradually and the Welsh Government has produced guidance explaining the timescales involved.

The Welsh Government is also drafting a new code of practice which will be issued for consultation before the end of the year. This is likely to be a rather long document and apparently there won’t be an easy-read version. However, it is very important as it sets out in detail how the ALN system will work in practice and the Welsh Government would like feedback from parents and carers as well as professionals so we will let you know when it is issued.

In the meantime, SNAP Cymru are running some ALN reform awareness sessions for parents and carers in Mid and South-West Wales in November and December.