Author Archives: Leigh Mulvihill

Summer reading from our library

Summer reading

Why not take a fresh look at what we have to offer in the library.  We have heart-warming true life stories, best sellers or if you want something a bit more lighthearted we have that too.

Here are a few suggestions

book cover - The Spark

L6480 – The Spark
by Kristine Barnett
A mother’s story of nurturing genius of her son with autism

L6654 Toast: autism in the early years
by Alice Boardman
This is not a textbook, this is real life

L6728 Toby and Sox:
the heart-warming tale of a little boy with autism and a dog in a million
by Vikky Turner

L6816 – The Reason I Jump
by Naoki Higashida
A Bestseller – One boy’s voice from the silence of autism

L6519 – Mindfulness: a practical guide to finding peace in a frantic world
by Mark Williams
A life-changing bestseller including a CD of guided meditations

L6579 – A Different Kettle of Fish
by Michael Bartob
A day in the life of a physics student with autism

C0296 – Inside Aspergers Looking Out
by Kathy Hoopman

For enquires about the library please go to the library page or email Jan the librarian on [email protected]

New books in the library

Check out the new books we have in our library.

If you are not already a member you can borrow books from us to help you support your child. It is all free of charge. To join, fill in the application form on the library page.

Autism

Why Does Chris Do That? By Tony Attwood 2003 edition (L6768)

book cover - ten things every child with autism wishes you knew

Ten Things Every Child with Autism Wishes You Knew 2012 edition (L6813)

Aspergers’

book cover - The girl with the curly hair puberty

The Girl with the Curly Hair Asperger’s Syndrome and Puberty by Alis Rowe (L6791)

book cover - The girl with the curly hair siblings

The Girl with the Curly Hair Asperger’s Syndrome: Helping Siblings by Alis Rowe (L6792)

Communication

book cover - eye can write

Eye Can Write: a memoir of a child’s silent soul emerging by Jonathan Bryan (L6772)

book cover - Integrated intensive interaction

Integrating Intensive Interaction: developing communication practice in services for children and adults with severe learning difficulties, PMLD and autism by Amandine Mouriere (L6794)

Education for Special Needs

book cover - very special maths

Very Special Maths: developing thinking and maths skills for pupils with severe or complex learning difficulties by Les Stoves (L6795)

book cover - don't send him in tomorrow

Don’t Send Him in Tomorrow: shining a light on the marginalised disenfranchised and forgotten children of today’s schools by Jarlath O’Brien (L6800)

Mental Health

book cover CBT toolbox

CBT Toolbox for Children & Adolescents by Lisa Weed Phifer (L6802)

book cover - Child and Adolescent Mental health

Child and Adolescent Mental Health for Front-line Professionals by Nisha Dogra 2018 edition (6801)

Children’s Books

book cover - dude I'm an aspie

Dude, I’m an Aspie Kid’s Edition by Matt Friedman – the kids edition explaining Aspergers in cartoons from the blogger Matt Friedman

book cover - Siblings AS through our eyes

Siblings: the autism spectrum through our eyes by Jane Johnson – children and adults talk about what its like to grow up with a brother or sister with autism

book cover - Songames sensory processing

Songames for Sensory Processing by Aubrey Lande – games to play along with music, CDs included

For a full list of our library books please take a look at our library catalogues.

Jan Pugh
Librarian
[email protected]

A helmet for Imogen

The team at our Innovation Centre are hard at work making a new riding hat for Imogen.

Imogen loves horse riding and is taking part in the qualifying round of the RDA dressage event. There’s only one problem: her helmet. In order to get it to fit the depth of her head (so it doesn’t fall over her eyes), it is really tight around her head. This leads to discomfort and pain when riding for long times.

The new helmet being developed by CIC and UWTSD has been made to measure by using high tech equipment to scan her head shape and then design the helmet around her. They’ve already made a prototype and have been to visit Imogen to try it out to see if it fits.

The final production unit is being manufactured this week, so we hope that Imogen will be riding safely and in maximum comfort very soon!

Have you got a problem our Innovation Centre can help with? Get in touch using our contact form.

School, bullying and mental health

School. Some of us fondly remember our days in school as ‘some of the best days of our lives’.

School is an important step in all children’s lives and is where most of us spend a significant amount of time throughout our childhood and adolescence. It is a place where we are taught academic skills which can help us achieve and pursue the careers we choose for ourselves later in life. It is also a place where we are encouraged to step outside of our social comfort zone and to socialise with other children and adults outside of our immediate family.

Whilst some people would agree their memories of school are positive, others will remember school as a daily challenge to conquer. The demands put on children when they go to school, whether that be academically or socially are significant. The pressures on students to achieve the highest grades seem to be evermore increasing and throughout life in school, children must continually negotiate their social environment to ‘fit in’ with their peers to make and sustain friendships.

Academic attainment and peer acceptance are both challenges that all children face during their time at school, however school can be a particularly demanding place for children with genomic disorders.

Genomic disorders, such as 22q11.2 deletion syndrome, are caused by changes in a person’s chromosome (their DNA). Genomic disorders are commonly associated with complex physical, developmental and psychiatric problems. Therefore, many children with these conditions present differently to their peers in physical appearance, social skills and their educational and mental health needs.

As such, children with these conditions may be perceived as different from the rest of their peers and may often become ‘easy targets’ of bullying. Additionally, some parents report that their child’s schools do not have the resources or expertise in their child’s condition to accommodate their child’s needs. An unsuitable school environment and bullying are both factors which can contribute to a child’s adverse experience of school.

Adverse experiences in childhood, including bullying, are significantly associated with poor mental health outcomes. Research has also shown that certain genomic disorders increases the risk of developing mental health problems, such as anxiety, Autism Spectrum Disorder, attention-deficit/hyperactivity disorder and psychosis.

However, because not all children diagnosed with these genomic conditions develop mental health conditions, it is believed that both environmental and genetic factors contribute to the increased risk of poor mental health in these children. Therefore, much about the environmental risk factors, including school experiences, that children with genomic conditions encounter remain to be explored in order to understand how mental health conditions develop in this group.

I have just started my PhD project at Cardiff University, in which I will be exploring school experiences of children diagnosed with certain rare genomic disorders to answer the question ‘do adverse school and bullying experiences of children with genomic disorders contribute to their increased risk of developing mental health problems?’

To answer this question, I will be exploring school and bullying experiences that children with genomic disorders encounter and then I will investigate if and how these experiences differ from the experiences of their peers. I will then look at the effect of these experiences on the mental health outcomes of children with genomic disorders.

To explore these areas, I would like to speak to children diagnosed with certain genomic conditions, as well as their parents and teachers to gather an understanding about their experiences of school. For this project to successfully address the areas of interest and concern of parents, I would like these conversations to explore topics and issues that children and parents feel it important to investigate.

Therefore, if you or your child has received a diagnosis of a rare genetic condition, and you have any thoughts about this research, comments for specific topics you think it would be important to investigate, or if you would simply like to share your child’s experiences of school, I would love to hear from you with your suggestions. Additionally, if you would like to get in contact to ask questions about the project, please do.

By understanding the risk factors associated with poor mental health outcomes in children with genomic disorders, we can inform intervention strategies to reduce these risks and ultimately improve children’s outcomes and quality of life.

Thank you for reading and I hope to hear from you!

Lowri

If you would like to get in contact with Lowri to hear about your experiences, please email [email protected].

(Some of the rare genetic conditions Lowri will be exploring for her PhD include: 1q21.1 deletion/duplication, 2p16.3 deletion (NRXN1), 3q29 deletion, 9q34.3 deletion (Kleefstra), 10q23 duplication, 15q11.2 deletion/duplication, 15q13.3 deletion/duplication, 16p11.2 deletion/duplication, 17q12 duplication, 22q11.2 deletion/duplication syndromes).

The Embracing Complexity Coalition launches

We have joined leading UK Neurodevelopmental and Mental Health Charities to Launch The ‘Embracing Complexity Coalition’

The Embracing Complexity Coalition launched on the 21st May at an event at the Houses of Parliament hosted by Dame Cheryl Gillan, MP, Chair of the APPG on Autism, Rt. Hon. Matt Hancock, Secretary of State for Health & Social Care and the Chair of the Embracing Complexity Coalition, Mr Jon Spiers, Chief Executive of Autistica.

The coalition is formed of leading neurodevelopmental condition and mental health UK charities including: ADHD Foundation, Afasic, Brain & Spine Foundation, British Dyslexia Association, Cerebra, Down Syndrome Research Foundation UK, Epilepsy Action, Epilepsy Research UK, Fragile X Society, I CAN, Mencap, McPin Foundation, MQ, The Neurological Alliance and Tourettes Action – chaired by Autistica.  

Why do we need a coalition?

The charities have joined up because of a finding in their survey that people living with a neurodevelopmental condition often have more than one condition and need more integrated support and the charities have taken the first step by creating a coalition.  

The Coalition is spearheading a movement to ‘work together’ to create a new approach for the future to better meet the complex needs of people with neurodevelopmental conditions (NDCs) and mental health conditions, who often have more than one condition.

Neurodevelopmental conditions affect up to 10% of the population and include a wide range of conditions, from autism and attention deficit hyperactivity disorder through to epilepsy, OCD, dyspraxia, dyslexia, and many others.

We are calling for action to be taken to better meet the needs of people with NDCs and mental health conditions and prevent the poor outcomes and preventable deaths of the 6.6 million people living with NDCs as identified in the NHS Long Term Plan, helping them to live longer, healthier, and happier lives.

Secretary of State for Health and Social Care, Rt Hon. Matt Hancock opened the speeches by championing the huge value and diversity of thinking people with NDCs bring to society, the importance of tackling inequalities, and the critical importance of spearheading a new approach to supporting people with NDCs and mental health, as outlined in the NHS Long Term Plan.

“Dyslexia is a distinction, not a drawback. I know first-hand the challenges it brings, but I know that with the right support dyslexia brings benefits too.

 “I strongly believe that everyone has a valuable contribution to make to society, and I am absolutely determined to improve services for neurodiverse people to help each and everyone reach their full potential.

“Through our Long Term Plan, backed by an extra £33.9 billion a year by 2024, we are transforming NHS services to tackle inequalities and provide high quality, safe and compassionate care.”

Health Secretary Matt Hancock

Embracing Complexity: Towards New Approaches for Supporting People with Neurodevelopmental Condition

Embracing Complexity Report

A report by the newly formed coalition, ‘Embracing Complexity: Towards New Approaches for Supporting People with Neurodevelopmental Conditions’ was also launched, including results from a survey distributed through 25 charities that specialise in neurodevelopmental and mental health conditions. The survey showed seven out of ten people (67%) with neurodevelopmental conditions either had or believed they had more than one such condition. Furthermore, nine out of ten people living with NDCs asked for joint research into overlapping neurodevelopmental conditions, joint campaigning for better screening & diagnosis and joint campaigning for ‘joined-up services’. The survey also highlighted that over half of the people surveyed said they do not feel accepted by society’and ‘do not know where to go for help’.

A joined up approach

Jon Spiers, Chair of the Embracing Complexity Coalition and Chief Executive of Autistica, emphasised the need for a joined-up approach to work together more effectively and seek opportunities to accelerate impact:

“There is growing recognition that neurodevelopmental conditions, which have historically been approached through a single lens, often share symptoms. This finding was reinforced in the new Embracing Complexity Survey with over 500 people living with neurodevelopmental and mental health conditions. Most people affected have more than one neurodevelopmental condition and often many. Even when symptoms differ, there is a shared experience of challenges accessing services and the need for better support. There is no doubt joining up services is complex and will require new approaches,but people living with these challenges have to face complexity throughout their lives. We need to ensure diagnostic pathways take into account that people often have multiple conditions, ensure diagnosis waiting times are time limited and that services in every aspect of life take greater account of people with NDCs through better training, reasonable adjustments and proactive support. Greater investment in research to understand more about the lived experience of people with NDCs and how to deliver services that better meet their needs is critically needed.”

Key findings from the Embracing Complexity survey

The Embracing Complexity Survey also highlighted the current substantial gaps and focus needed across the health, social care, and education services to tackle inequalities and enable people to reach their full potential.

  • The majority of people (58%) diagnosed said it was not easy to get a first diagnosis
  • Difficulties Reported in Diagnosis (in both diagnosed and undiagnosed), included: long waiting times to see a specialist, being told children were too young to be considered, constant referrals to different healthcare or educational providers.
  • Difficulties Reported in Diagnosis (in undiagnosed): 58% of people surveyed had tried to get a diagnosis but experienced many of the same issues as above, as well as experiencing dismissive attitudes, not knowing where to go for help, and feeling lost in the system. Nearly 8 out of 10 (77%) were not made aware of other possible diagnoses which might affect them, despite the evidence that shows strong associations between some NDCs.
  • Nearly half (46%) of individuals were not offered information or support to help them understand how the condition could affect their life on diagnosis.
  • 43% felt they could not access health services and 40% felt their additional support needs were not met to help them access health services.
  • Nearly half (46%) of the 38% of survey participants that reported they were in contact with the social care system said their needs are generally not well supported by the social care system, with 58% feeling they were not well understood.
  • Nearly half (46%) of the 25% of survey participants that reported they were in contact with the welfare system said their needs are generally not well supported by the welfare system, with 63% feeling they were not well understood.
  • Almost a third (27%) of respondents in education said the education system is not supporting them well.

“It is of paramount importance that we identify new ways of working and best practice and scale it up to drive improvement across the country to better support people with neurodevelopmental conditions, their families and carers. We want to make sure people get the support, care and treatment that is right for them. This means they must be involved in saying how to get this right. It means being person-centred in all work.”

Dr Tony Lloyd, CEO, ADHD Foundation.

Better Outcomes

In keeping with the ethos of the report recommendations to drive a much-needed person-centred joined-up approach, the meeting highlighted the real need to deliver better outcomes for people with neurodevelopmental conditions and share work they are doing to achieve this. This is wholly in line with the NHS Long Term Plan, which commits to a wide range of actions to address the unmet needs of people living with NDCs and mental health conditions, and are supported by the Coalition, such as:

  • Action will be taken to tackle the causes of morbidity and preventable deaths in people with a learning disability and autistic people
  • The whole NHS will improve its understanding of the needs of people with learning disabilities and autism, and work together to improve their health and wellbeing
  • Over the next three years, autism diagnosis will be included alongside work with children and young people’s mental health services to test and implement the most effective ways to reduce waiting times for specialist services
  • Local providers will be able to take control of budgets to reduce avoidable admissions, enable shorter lengths of stay and end out of area placements. Where possible, people with a learning disability, autism or both will be enabled to have a personal health budget (PHBs)
  • Increased investment in intensive, crisis and forensic community support will also enable more people to receive personalised care in the community, closer to home, and reduce preventable admissions to inpatient services
  • Focus on improving the quality of inpatient care across the NHS and independent sector
  • A commitment that funding for children and young people’s mental health services will grow faster than both overall NHS funding and total mental health spending, and a commitment to grow investment in adult mental health services faster than the NHS budget overall for each of the next five years
  • Mental health support for children and young people will be embedded in schools and colleges

Show your support

The event closed echoing the report’s ‘Call to Action’ – “It is critical we – government, civil servants, charities, research funders, public services and society – work together effectively and seek opportunities to accelerate a future where people with neurodevelopmental conditions and their families enjoy the same opportunities and experiences as the rest of society”.

Pledge support for the call to ‘Embrace Complexity’ and drive change for people living with NDCs by visiting www.embracingcomplexity.org.uk and posting your own commitment online.

Joshua’s Transition: Part 3

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

Well Joshua is now 18 years and 1 month old and so we survived his coming of age and it was a well celebrated birthday. He went to the theatre twice, he went to Donald’s for his actual birthday tea, he enjoyed afternoon tea with friends and he relished a family Sunday lunch with 20 members of his family. It is finally time to take his many birthday cards down and his giant helium 18 has only just collapsed.

So what has changed since he became an adult a month ago?

– The greatest change is that we have now nominated, and had approved, our adult respite provision. We heard last week that Panel had given the go ahead and so we are going to use the Easter school holidays for daytime introductions, before he works up to an overnight stay in May. We have a leaving party to look forward to at his current respite provision next month, during his final weekend, and I will certainly be needing my tissues then. So that is a huge hurdle reached and jumped.

– Joshua has always taken his anti-epileptic medication whole but in yogurt or mousse, so that it is easier to swallow and that practice has never been questioned. Now that he is an adult, we have to get an expensive Doctor’s letter to state that this is acceptable and that we, or the respite carers, are not trying to secretly administer medication against his will. Why should that suddenly become necessary now that he is over 18?

– I have to get used to calling Joshua ‘my young man’ rather than ‘my boy’ and I remind myself to talk about the ‘young people’ at school rather than the children, that is taking some doing but I will get there eventually.

– I am much more focused on the end of Joshua’s school days than I was before. I know that he will be there until July 2020, but that suddenly just seems around the corner to me. I know how quickly the terms fly by so after Easter we will be starting the summer term, so before we know it, it will be the long summer break then he will be back for his final year of school. I was in a Governor’s meeting last week and the head was talking about the 17 leavers next year and I didn’t hear anything after that, as I was so focused on Joshua being one of those leavers. That will impact not just on him but on me too, as I have developed several parent events while at school. I have already warned the coffee morning group that they need to recruit another baker for a year’s time, if the monthly event is to be sustained.

– The Continence Service changed Joshua’s ID code, without informing me, so that I could no longer order his repeat order of continence products as I was using his original ID number that apparently only applied when he was a child! His NHS number, passport number and National Insurance number are with him for life, but in their wisdom, he needed a new adult version for their system, which caused untold confusion and delays. They called up the other day to ask for an assessment at home, with Joshua and ‘his nurse’. I asked who his nurse was, as he has never had any nursing care other than the school nurse or nurses when he was in hospital. She did not know either who his nurse was and went away to find out, but that was several weeks ago and nothing has happened since.

– We have gained an additional social worker, as Continuing Health are funding Joshua’s adult respite and daycare, so we have a social worker from Health as well as Social Services now. We have met once so far, during a meeting at school but she will want an assessment of Joshua too in due course. I am not sure how long they will run in parallel but so long as they are joined up in their thinking and organised in home visits, then two heads should be better than one surely.

– Joshua is now a tall adult in an adult’s body, with facial hair – that he has had since he was 10 to be honest . But behaviour that was sweet and tolerated when he was younger, could be construed as being more threatening or inappropriate now. Joshua is very tactile, he loves to hug and he adores long straight hair, which he likes to stroke and flick. While a toddler stroking your hair might be regarded as being cute, it could be seen as more predatory in an 18 year old. But of course, in his mind, Joshua is still that toddler, just that it is now enclosed in a grown up body! I now think twice about where I take him to change him IF there is no disabled toilet facility, I have always bundled him into the Ladies with me if I am out alone with him, but now that does not always seem to be the best choice, but I am not sure how well Gents are set up as changing facilities.

There are also a few things that have not changed since Joshua turned 18

We have not yet been handed over to the adult neurology consultant or epilepsy nurse, that is due to happen at the end of April. So both will need to get to know Joshua’s history and how he reacts in appointments and we will need to build up confidence in them. Joshua still attends sixth form at the Special School that he has attended for the last 8 years, thankfully he can stay there until he is 19.

Joshua’s needs are completely unchanged: just because he is now considered legally as an adult, he is still virtually non-verbal, still needs personal care and he still has epilepsy. We still love him just as much as when he was a child and we will continue to make decisions on his behalf, in his very best interests. I detest the implication that after 18 years of care, we will suddenly become corrupt and try to spend all his benefits on ourselves and that our best efforts to keep him safe, could be construed as deprivation of his liberty. The onus seems now to be upon us to prove that we have his best interests at heart, where that was presumed to be the case when he was 17 and younger. Joshua is the same individual and we are the same parents, just trying to do our best to give our son the best life that we can.

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.

Have you been told that your child is too young to have a continence assessment?

Has your local continence team told you that your child isn’t old enough to have a continence assessment? 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. We recently heard from a parent who had been told that her 4 year old son, who has autism and complex epilepsy, wouldn’t be able to get a continence assessment until he turned 5.  

We wrote a template letter to help the family make a complaint to the local health authority. We quoted some of the relevant guidance, which makes it clear that health authorities shouldn’t make children wait until they reach a certain age before they get a continence assessment.

We’ve uploaded the template letter so that other families who might find themselves in a similar situation can use it to make a complaint. We have separate versions of the letter for England and Wales.

Amelie gets transport to school, with help from our LEaP Project

Karen, who lives in Surrey, contacted our LEaP Project in January for help with a school transport problem. Her daughter, Amelie, is 11 years old and has Phelan McDermid syndrome. The local council had been providing transport for Amelie to go to a special school for children with severe and profound learning difficulties. When Karen told the council that they were moving to a new address, within 3 miles of the school, the council said that she needed to re-apply for transport.

Karen explained in her application that Amelie wasn’t able to walk to school because of her complex needs. But the council decided not to provide transport, because Karen had help from carers and access to a car, so she was expected to drive Amelie to school or accompany her on public transport.

We wrote a letter to help Karen appeal the council’s decision. The letter explained that the council had a legal duty to make transport arrangements for Amelie, who couldn’t be expected to walk to school or travel by public transport, even if Karen accompanied her, because of her disability. The letter also pointed out that parents can only be expected to accompany their child along a walking route, not by car.

At first, the council refused Karen’s appeal and insisted that she had ‘means and resources available’ to get Amelie to school. With our support, Karen contacted a manager at the council to demand a fuller response, which specifically addressed all the health and safety issues she had raised. A few days later, the council phoned Karen and agreed that Amelie was entitled to transport because of her special educational needs and disability.

Karen was very pleased with the council’s decision: “It was extremely stressful having to deal with the loss of transport at the same time as moving and to receive the default responses from the council, which really felt like we hadn’t been listened to. I was very lucky to be supported by our school, social worker and GP and the LEaP Project and I think with the combined effort we got the right result. I am so happy that Amelie will be able to get to school in a way that is best for her.”

Karen had to challenge the council twice before getting transport for Amelie, because the council didn’t consider her appeal information properly. We know from our experience on the LEaP Project that some councils have refused transport twice or three times before putting things right.

If you’re in a similar situation, you can read our Parent Guide on School Transport in England and use our updated school transport template letter to challenge a decision. We also have a parent guide and template letter for parents in Wales.

If you’re still unhappy after using the council’s appeals process, you also have the right to complain to the Local Government & Social Care Ombudsman or the Public Services Ombudsman for Wales.

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.