Category Archives: Information and Advice

Impact of Headbanging and Sensory Issues on Sleep

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

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

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

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

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

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

You can find out more about our Sleep Service here.

Support for Potocki-Lupski Syndrome

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

“Kyle was born by natural birth on June 13th 2013 weighing 7lb 5oz. He had distinctive facial features like elf and his arms and legs were very thin with brittle bones.

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

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

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

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

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

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

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

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

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

Thank you for reading my story”.

School Transport Report

The school of law team at the University of Leeds

The school of law team at the University of Leeds

Our student researchers at the School of Law, University of Leeds have published a report about the accuracy and accessibility of school transport information on local authority websites in England.

The students looked at 71 websites and identified serious failings in the information provided to families.  Almost 40% of the websites failed to clearly explain the legal rights of children with special educational needs or disabilities to school transport. The report also highlights how some school transport policies are more restrictive than they should be (see the examples on page 12/13).

You can read the full report here.

If you have a school transport problem, our Parent Guide explains what you can do to solve it.

Your Average Jo

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Our Sleep Team

Find out more about our brilliant team of Sleep Practitioners.

Pattie Everitt

Sleep Practitioner for Cerebra since 2005. Pattie originally trained at University of West England as a nurse and has had training in autism, anxiety and behaviour and relaxation for children. Pattie did her Sleep Training with Sleep Scotland.

Claire Varey

Sleep Practitioner for Cerebra since 2015. Claire worked in health visiting, school nursing and breastfeeding support as a Lactation Consultant in the NHS. Claire also supported parents to understand the common sleep issues that babies and infants experienced as part of their development as a Baby Calm and Toddler Calm teacher. Claire did her Sleep Training with Sleep Scotland.

Laura MacDonald

Sleep Practitioner since April 2017. Laura started with Cerebra in 2015 as a Regional Officer. Laura has a degree in Psychology. She has worked with adults and children with autism and challenging behaviour for several years. Laura did her Sleep Training with Sleep Scotland.

Kaileigh Wilson

Sleep Administrator – Based in our Head Office in Carmarthen
Kaileigh has worked for Cerebra for 8 years and as a sleep administrator for 6 years. This year she has undertaken sleep training and will be offering front line support and advice to our families.

Ineke Woods

Regional Network Manager- Based Centrally
Ineke has worked for Cerebra for over 12 years giving direct line support to our Parent/carers for eight of those. Ineke has had training in Autism, Anxiety, Behaviour and Sleep.  For the past four years Ineke has supervised a team of Regional officers and Sleep practitioners .This year she has been involved in developing the sleep team, providing front line support to parent/ carers and the every day support and supervision of the Sleep Team.

Disabled Facilities Grants

The school of law team at the University of Leeds

The school of law team at the University of Leeds

Our student researchers at the School of Law, University of Leeds, have published a report on Disabled Facilities Grants and home adaptations.

Disabled children and their families are legally entitled to a grant to pay for necessary adaptations to their home to improve accessibility and independent enjoyment of their surroundings. These are known as Disabled Facilities Grants (DFGs) and are usually for sums up to £30,000. The main aim of our DFG Project is to assess the cost effectiveness of DFGs and the wider impact adaptations have on the disabled child and their families.

The latest report from the team considers the benefits of investing in home adaptations for disabled children, including cost savings and improvements in well-being.

You can read the full report here.

How behaviour problems can affect family life

Jane Raca, whose son James has learning disabilities, autism and challenging behaviour shares her story and explains how you can get involved in research that will help other families.

“When James was little he used to pinch me if he was cross. He couldn’t walk or talk, so his means of communication were limited. The pinching didn’t hurt too much and he developed a graduated system of pinches which even made me rather proud! If he wanted my attention and I was preoccupied, he would pinch lightly. If he was getting agitated and wanted to leave a noisy place, the pressure would increase until I got the message.

As he grew older and stronger, the squeezing inevitably inflicted more damage. I once got him stuck in a doorway in his electric wheelchair and ended up with a black bruise the size of a saucer under my arm. Despite this, I was surprised when one of his social workers confessed to me that she was afraid of him. It had not occurred to me to be frightened. He was my son and I loved him; I knew he wasn’t being malicious. If you can’t walk or talk and you get overwhelmed by crowds, or the tiniest change in routine, there are only so many ways you can say so.

The social worker’s comments made me think though and I realised that although I wasn’t scared, I was on a constant state of high alert, trying to avoid an outburst. I was also worried about James’s brother and sister and felt I had to protect them from him. It wasn’t much fun for them getting into the car with someone who might attack them, or going to the cinema with someone who might bite them if he got anxious. They started refusing to go anywhere with James and becoming quiet and withdrawn.

I wasn’t getting much sleep and the psychological strain of managing James’s moods on a minute by minute basis contributed to my emotional exhaustion. Eventually I had a nervous breakdown. As I was the main carer of James and his two siblings, this had a profound impact on the family. My husband was alarmed at the fact that I seemed to need to sleep for 20 hours out of every 24, and he had to hold the fort at home as well as work. Our marriage was under severe strain. My mother travelled miles to support us every weekend.

What I didn’t know at that time was that what was happening to my family was not unusual. There is now a much greater awareness of the potential challenges of having an autistic child. However, the resources available to help are still woefully inadequate. Now there is an opportunity to improve that. The National Institute for Health and Care Excellence ‘NICE’ has identified that behaviour that challenges is common in children with a learning disability and can have a considerable impact on them and their family members or carers.

For example it is a common reason for residential placements with associated high costs. NICE has recommended that research be carried out into preventing behaviour that challenges from developing in young children with a learning disability. This is important because NICE is an independent body set up to advise the NHS among others. Its role includes providing strong, research based evidence which has the power to persuade governments to formulate or change policy.

Now, The Cerebra Family Research Group based at CEDAR, a research centre headed by Professor Richard Hastings at The University of Warwick, is calling for 1000 families of children with a learning disability to volunteer to take part in a study over time. The study will look at the well-being of family members where a child has a learning disability, not just mothers, but fathers and siblings as well. The study will further the understanding of what it is like to raise a child with a learning disability in the UK and may ultimately lead to greater resources being available for families like ours.

Professor Hastings, who is also Chair of Family Research for the charity Cerebra, says that many studies show that mothers of children with learning disabilities and autism experience more stress from their children’s behaviour problems compared to other children. He says that fathers and siblings also report more psychological problems when a child with learning disabilities or autism has significant behaviour problems. This doesn’t surprise me at all.

If your child is between 4 and 15 years, 11 months old and has learning disabilities (including children with autism or any one of a number of genetic syndromes as well) please consider taking part. It could make a real difference.

To find out more about the study and to complete the online survey please visit the website. If you have any questions please contact the research team by email: familyresearch@warwick.ac.uk or telephone: 02476 524 139.”

©Jane Raca 2016, writing as a parent contributor for the Family Research Ambassadors Project run by the Centre for Education, Development and Research (CEDAR), at the University of Warwick and Cerebra.

Social Care Guides – England and Wales

social care guidesOne of the results of devolution is that in a number of areas of the law England and Wales are developing different approaches – these are sometimes very different.

The law dealing with social care is no exception and both England and Wales have seen changes in this area in the recent past. The changes in Wales in particular are significant and social services teams are still getting to grips with implementing them.

We have therefore developed two guides on social care, one for England and one for Wales which explain the different systems.

We would particularly recommend them to anyone moving between the two countries.

SEN Reforms in England and Wales

sen reformsIn England, the special educational needs (SEN) reforms introduced in September 2014 continue to be rolled out.

Although all SEN statements should be converted into Education, Health and Care (EHC) plans by April 2018 recent government figures show that 45% of the statements are still in place with only 19 out of the 152 English local authorities currently on track to meet the deadline.

Clearly, many families are still waiting for statements to be converted to an EHC plan and they can get more information about the process from our guide on Education in England: Statements of Special Educational Needs: A Guide for Parents.

However, those families undergoing assessment for an EHC plan, and those who already have one, will find the information they need in the recently revised guide Education Health and Care (EHC) Plans. (Education in England: A Guide for Parents).

Meanwhile in Wales, the Welsh Government’s proposed SEN reforms, which it hopes will pass into law at the end of the year, continue with the Additional Learning Needs and Education Tribunal (Wales) Bill being scrutinised by the Welsh Assembly.

At the same time a consultation is being carried out on how the reforms should be introduced. For now, however, nothing has changed and the current system remains in place meaning that parents can continue to request an assessment for a SEN statement. Information on the Welsh system can be found in Education in Wales: A Guide for Parents.

Massage Helps Improve Bedtime Routine

Our Sleep Practitioner Pattie Everitt was recently able to help Freddie and his mum Abbie build a better bed time routine, improving the quality of family life for everyone.

Freddie had problems with night waking from around 9 months old.  He was not crying or upset but tended to talk to himself, shout and make loud noises. His mum, Abbie, got in contact with us when Freddie was 4 years old. He went to sleep fine each night, but was often awake for long periods during the night, sometimes up to 4-5 hours. Abbie would try to calm him down and get him back to sleep, but nothing seemed to work.

Pattie Everitt, one of our Sleep Practitioners, went to visit Abbie to discuss some new ideas she could try.  Although he was settling quite well, they talked about how making Freddie more relaxed before bed might help him sleep better at night.  This included introducing a wind down routine that was relaxing for him, and Abbie decided to try a back massage to help calm him down before bed.  They also discussed using weighted objects, such as heavy cuddly toys/ wheat sacks that might help Freddie feel more secure. Pattie also suggest a slightly later bedtime as he was going to bed quite early.

After some ongoing email support, Abbie managed to improve Freddie’s sleep quite a bit. The waking in the night reduced enough so that is was more manageable, with him not waking until around 4am (then going back off to sleep), so sleeping for a much longer block. He also enjoyed the back massage!

You can find out more about our Sleep Service on our website.