Strictly Come… Tea Dancing!

Due to unforeseen circumstances, we have been forced to postpone this event. Thank you for your interest.

On Friday 18th March Cerebra will be holding its first ever Tea Dance at St Mary’s Church Hall in Carmarthen.

We have enlisted the help of Pam Hopkins from Ultimate Ballroom who will be offering one-to-one tuition in a variety of dancing styles including Ballroom and Latin.

If you have never danced before, don’t worry! Pam’s hands-on tuition means that it will be a fun event for anyone of any ability.

There will also be refreshments on hand for when you work up a sweat dancing!

The event will start at 2pm and go on until 4pm.

Tickets are £10 with all of the proceeds coming to Cerebra.

If you would like further information about this exciting event, please contact Jessica Thomas on 01267 244222 or jessicat@cerebra.org.uk or use the contact form below.

 

Cerebra gives Face-to-face Support and Practical Advice

Jaxon

Cerebra’s network of Regional Support Officers and Sleep Practitioners are there to give face-to face support and practical advice to families. Regional Officer Laura Murphy and Sleep Practitioner Claire Varey, who cover the Yorkshire area, were recently both able to help four year old Jaxon and his family.

Jaxon was born ten weeks prematurely and has a diagnosis of autistic spectrum disorder along with many other health problems stemming from his prematurity including asthma, grommets for hearing problems, eczema and allergies. He is also hypermobile and has microcephaly and dysmorphic facial features and is currently undergoing genetic testing. He also has seizures which are thought to be due to epilepsy.

Sleep was a particular problem for the family.  Jaxon’s mum Steph explains “We attended a Cerebra sleep clinic led by Claire Varey as Jaxon has always had problems with sleeping – both settling to sleep and sleeping through the night. He spent his nights in our room on a camp bed next to our bed! Attending the clinic gave myself and his dad the confidence to try and get him in a routine and gave us hope it could be achieved.  We started that very weekend.

We took on board the tips of how his bedroom should be and planned out a routine like we had done in the group exercise, and explained it to Jaxon. We also got our daughter Morgan on board so that they were both following the same routine. The bedtime box was our favourite idea – low stimulation activity before bed (Jaxon’s is colouring a picture). The first couple of nights were hard work, as we had imagined it could be, but we are now 3 weeks on and Jaxon is settled in his own room by 8pm and sleeping shortly after with only a couple of wake ups in the night. This has drastically improved Jaxon’s concentration levels for school and also we no longer wake up exhausted for work. We have also managed to halve Jaxon’s dose of melatonin down to just 2mg”.

At the Sleep Clinic the family also met Regional Officer Laura who was there to give an overview of Cerebra’s services. It was a great opportunity for Stephanie to find out about applying for a grant to help with the cost of a specialist car seat and heavy duty walking reigns. Laura was able to identify possible sources of funding as well help Stephanie complete the application forms.

Steph told us “Jaxon is an escapologist and gets out of his car seat and runs away from us in public places so we are trying to get some help to buy specialist equipment. If we manage to get this it will benefit us as a family as we can start going on long drives again and family holidays in the UK which we haven’t been able to do since Jaxon was a baby as the risk in the car is just too high. Laura has been so warm and friendly and put me at ease straight away as the grant forms are so complicated and I wouldn’t have had a clue where to start”.

Laura was also able to reassure Steph about Jaxon’s behaviour and gave her advice on how to handle people’s reactions to it when they’re out and about, suggesting some strategies that she could use.

Stephanie told us “the difference Clare and Laura’s advice has made to our family and to Jaxon too is incredible. I’d never heard of Cerebra before the sleep clinic and I can’t believe I hadn’t as it’s a fantastic charity. Thank you so much!”

You can find out more about help in your area here or call our freephone helpline on 0800 328 1159. Click here for more information on our Sleep Service.

Cerebra Help the Barnes Family

Cole and Elliott enjoy the soft play area at Vallecchia

Cole and Elliott enjoy the soft play area at Vallecchia

We love hearing from families about how Cerebra has helped with their daily family life. The Barnes family from Hull got in touch to tell us their story.

Mum Natalie Barnes first contacted Cerebra for help with her eldest son, eight year-old Elliott who has Autism and severe challenging behaviour. Through our grants scheme, the family received a weighted lap pad and a weighted blanket – products that the family still use everyday.

“The blanket initially was used to aid my youngest son Cole’s sleep but now also acts as a calming aid to help my eldest son, Elliott. We wrap him in the blanket, which decreases harm to ourselves and him and helps to sooth him. We also use the weighted lap pad for meal times or when we would like Elliott to sit still as he has trouble sitting for even short periods of time and lacks concentration. The lap pad massively increases the amount of time he will stay seated for and so we are able to help him with his food more easily and engage in activities for longer,” Natalie told us.

The family have also used our Postal Lending Library to borrow specialist equipment. Many families use this service in order to see if equipment such as fibre optic tubes would be beneficial for their child before investing in often expensive items.

“We discovered Cole loves UV toys and have ordered some for him to have at home along with a dark den which we hope will help stimulate play and keep him engaged in activities. Cole struggles very much with play and is focused on seeking adults constantly. He lacks imagination and can not “play” with toys without help. He was interested in the bright UV colours and the contrast of light and dark really engaged him. To try the items at home first makes a huge difference as these specialist sensory items are so expensive, parents and carers like myself want to make sure they are going to benefit the child before buying or looking for funding for products.”

Having children with additional needs and sensory issues can often make it difficult to get away and enjoy a holiday together which is why Cerebra offers our holiday home Vallecchia out to families such as the Barnes’. The whole family was able to stay at the specially adapted house in Pembrokehshire and benefit from some much needed relaxation time together.

Natalie said: “We had an amazing break at Cerebra’s holiday home, the house has lots of specialist sensory equipment and toys that my children loved to explore and have fun with. It is a really peaceful house, with lots of space and was just a short journey to lots of fun and interesting days out. Going on a holiday with a disabled child is very stressful and difficult to plan for but Cerebra have thought of lots of little touches that made the stay even more stress free, such as providing leaflets for local attractions and days out, a huge trampoline in the garden, a dvd collection, dishwasher, washing machine and tumble dryer. All of this made a huge difference to our stay and always meant there was something for the boys to do.”

Thinking about the future can be a daunting prospect for any parent but when you have a child with a disability, it becomes even more important. Natalie did this with the help of our Wills and Trust Voucher Scheme.

Natalie said: “I have received a Wills and Trust Voucher which I am using at the moment to help with the cost of making a Will to plan for the boys future. This is a frightening prospect but I am grateful to Cerebra for helping us to pay for this.

Thank-you to Cerebra for providing such wonderful and important resources for so many special families like ours.”

Microcephaly: A Mother’s Perspective

Kate Olley is mum to eleven year-old Madeleine who has Microcephaly, a condition that has been prominent in the media recently because of the outbreak of the Zika virus and its links to the condition. Kate tells us her story.

“An outbreak of Zika virus is being blamed for an epidemic of babies being born in Brazil with microcephaly”. I stared at the TV in shock. The 10 o’clock TV news was covering Microcephaly.  My daughter Madeleine was diagnosed as having Microcephaly ten years ago.

She was late sitting up and the creche she was attending had referred her to the hospital paediatrician to see if anything might be wrong with her muscle tone.  We had moved to France when Madeleine was eight months old.  The hospital was in Bayonne. “Vous comprenez, Madame.  Vous comprenez?” the French paediatrician asks. I understood. I just couldn’t say anything.

I drove home, along the coast and up into the mountains. The world was silent. I caught Madeleine’s face in the mirror. She smiled at me but my throat was tight. I couldn’t say anything.

As I drove I tried to find clues that something might have been wrong.  She had had an eight-month check up at our GP’s in London and although she scored very few points on the child development checklist, the GP had assured me that Madeleine was happy and healthy and that all babies develop differently.  I had asked the GP to measure Madeleine’s head  because it was one of the three measures – length, weight and head circumference – in the red book in front of me, but she had dismissed it, saying that they didn’t do that now, that head circumference was an unreliable measure. The GP and the Health Visitor had also dismissed my concerns about Madeleine’s weight.  Although she was putting on weight, she was not crying out to be fed – I always had to initiate it – and her weight had fallen from the 98th percentile at birth to the 9th percentile by 28 weeks. I think the clue was there in the GP’s words “happy and healthy”. When a child is happy and healthy no one goes looking for problems.

I thought back to her scan and to her birth. Her head was of average size, statistically, but because she was a very long baby (59cm) and a heavy baby (4.2 kg), a head of that size was disproportionately small.  None of the doctors had read anything into that at the time.

On the day she was born, my friend Catriona visited us and her first remark was “Oh, hasn’t she got a small head?  That must have made labour easier” she laughed with me.  Madeleine did have a small head, but it made her look so pretty, all nicely in proportion.  I had looked at the other babies with their gigantic heads. Now I know that babies heads are supposed to be disproportionately large to their bodies.

That evening at home the phone rang.  It had been the only noise all evening. “Kate, it’s mum here. I was just wondering how you got on at the hospital today”.   I told her that the doctor believes Madeleine is behind developmentally and that her head has not been growing properly. “But she hasn’t got a small head” mum says “she is lovely”. “No, well, yes, when you measure it she has.  It means her brain hasn’t been growing properly and we don’t know why. They call it “Microcephaly” – it is from the Greek for “small head”. It could be something genetic…”   “But there’s nothing wrong with you or John” she was quick to point out.   “No, I don’t think it has to mean that; it could be a genetic disorder that she’s got. They’re going to test for a genetic disorder called Retts Syndrome. It will take a long time. The doctor said not to look it up, I’ll only worry. The other thing that can cause Microcephaly is brain damage”. “But she was alright when she was born wasn’t she?” mum sounded worried.  “You would have known if something had gone wrong, wouldn’t you?”. Madeleine had scored 9 out of 9 on that test they do just after the baby was born. There wasn’t any suggestion that she had been deprived of oxygen at birth, but how would I really know? The labour had been very long, there had been the usual change over-of midwives on shifts.

“The other thing that can cause Microcephaly is an infection in pregnancy” I told mum. “But you weren’t ill at all, were you?”. No I wasn’t. I was the healthiest I had ever been “No, I wasn’t ill, but there are infections that can get passed on to the baby while it’s in the womb. Rubella, Toxoplasmosis and CMV.  All three can cause Microcephaly”.

“Rubella, that’s German Measles? You were immunised against that at school though.  And toxoplasmosis.  You get that from cat litter, don’t you? Your neighbours asked you to look after their cat while they were away.  Do you think that could be it?”.   “I knew about that – I wore gloves when I changed the litter tray”.   I didn’t really want to talk about this anymore. I tell mum that Madeleine needs feeding.  It is partly true, but mostly I am overwhelmed by her questions.  I want to be the one asking these questions not explaining why I didn’t notice anything was wrong with my baby.

I think about it all night.  Madeleine was my first child.  But my mum, aunts, other women with children…none of them knew anything was wrong. Not the midwife, not the GP.

At the next hospital appointment, I am asked about the Toxoplasmosis tests I had had when I was pregnant.  “What Toxoplasmosis tests?” I asked.   It seems that in France women are routinely tested, three times through the pregnancy, for Toxoplasmosis as it is a known cause of Microcephaly. “They don’t do that in England” I replied.

Reading the newspaper reports now about the Zika virus, I wonder how long Zika stays in the body to enable doctors to know if a Zika infection during pregnancy was the cause of the baby’s Microcephaly. Due to the fact that Madeleine’s Microcephaly was only picked up when she was one year old, they couldn’t test to see if I had passed an infection on to Madeleine. We had no way of knowing if an infection had been the cause of her Microcephaly but the doctors judged it unlikely as those infections normally result in vision or hearing difficulties as well as Microcephaly and Madeleine seemed to have no problems with either.

The year passed by with more genetic tests.  Since that first day in Bayonne, I had been living with the “high probability” that she had a genetic disorder called Retts syndrome. After six months and Madeleine happily making some, albeit small, progress, Retts, along with two other genetic conditions, Angelmans and Williams syndromes, were all ruled out.  We moved back to England for the other tests. A brain scan and an EEG showed her brain was formed normally but was just too small. There was no evidence of brain damage or the fontanelles closing prematurely restricting the brain’s growth. We drew a blank.

Madeleine is now eleven. She has severe learning difficulties and overall functions at the level of a one year-old, perhaps an 18-month-old in some areas. She is happy, noisy and full of life but she’s also quite a handful as she gets bigger and more willful. She learnt to walk when she was three and her speech grows day by day.  She has a talent for “singing”, picking up the melody of a song very easily and, although it’s her “words” that she belts out at the top of her voice, repetition of the songs has a way of bringing on her language so she gets closer and closer to saying the words over time.

I am still toilet-training her. What many families seem to achieve in the summer holidays has been on our programme for the last five years and it’s still on-going. I often feel stuck  in a sort of “groundhog day” for such long periods – whether that is teaching her how to use a fork to eat, put a penny in a piggy-bank, I almost can’t remember when I started trying to teach her something but I am still doing it years later. I find life very difficult at times and feel a real sense of loss for the baby I had. I felt that I had lost my Madeleine. I felt like a mother and then I had to start functioning like a special needs expert, a speech therapist, a carer.  I went from trusting my instincts to losing confidence in them.

I think back to the missed chances when doctors didn’t follow up on the smallness of her head in relation to her size, but I am glad they didn’t. I had a blissful pregnancy and a perfect first year with my baby, not knowing what was to come.

Microcephaly can affect children in many different ways.  A child can have a small head and it have no effect on their mental or physical abilities whatsoever. Those who are affected can have a range of learning disabilities, and (with the little I learned about infection-related Microcephaly) many will suffer from vision and hearing difficulties. As I read the news today, scientists are still to even prove there is a link between Zika and Microcephaly and many of the reported cases are turning out not to be Microcephaly after all. I know that I cannot speak for all families but having a child with a profound and life-long disability can place an enormous strain on a family.

Here in the UK, Microcephaly, that rare term that hardly anyone had heard of, is now front page news and is bringing attention to severely disabling conditions that, as in our case, doctors have not been able to explain.

The Microcephaly Support Group UK can offer information and advice on the condition.

 

Another Family enjoys a break our Holiday Home

Jamie and JT on the beach

Jamie and JT on the beach

Getting away as a family can be difficult when you have a child with additional needs but Cerebra’s holiday home, Vallecchia offers offers a safe environment for the whole family to relax in.

For children on the autistic spectrum the break from routine can be particularly distressing, but Vallecchia has plenty of room for extended family members to join in the break. This can offer support for mum and dad during the time away from home and means that everyone has the chance to relax and spend time together.

The Butt family recently stayed at the holiday home. Dad Jamie told us: “Holidays are difficult for people with Autism and for the families as it is a break from routine and both spontaneity and leisure time is a difficult concept.

Our party consisted of JT our 11 year old boy who has Autism, five year-old Dylan, myself and my wife and my Mum and Dad, who has just finished cancer treatment.

It was a long journey down for someone with ADHD and profound autism but JT and the whole family really benefited from the experience.

Vallechia was a much welcome break as the house is so well equipped and large with everything any family needed. The location is also spectacular, being so near beautiful countryside and world class beaches, which both of our boys particularly enjoyed and was a daily activity, no matter what the weather.”

If you would like to find out more information about Vallecchia, including how you can apply to stay for a week, please check our website.

Cerebra Needs You!

Have you ever considered holding your own event for Cerebra? There’s lots of exciting ways you can get your friends and family together to have fun and raise vital funds for Cerebra.

Here at Cerebra HQ, we held an Alice in Wonderland inspired Mad Hatter’s tea party to raise funds. We sold cakes that staff had baked themselves and all came in wearing Mad Hatter inspired hats.

Holding your own themed tea party couldn’t be easier and it’s a great excuse to get all your friends together to have some tea and cake!

Holding a tea party is just one of the ways that you can get involved with raising money for Cerebra. You can download our A – Z of fundraising below for more ideas, or get in touch with Jessica Thomas on jessicat@cerebra.org.uk or 01267 244222.

Fundraising A - Z

 

Bristol Sleep Event Answers Parent’s Sleep Issues

Catherine Stone gives a sleep presentation

Catherine Stone gives a sleep presentation

We recently held a sleep advice event for parent/ carers of disabled children in association with Contact a Family in Bristol.

As charities supporting families of children with additional needs we know that it can be much more difficult for children with learning and sensory differences to maintain a healthy sleep routine.  We work to support parents and carers who are often desperate for more information and guidance at what is a very challenging time in their lives.

A total of 28 parents were able to benefit from the workshop event. One of Cerebra’s Sleep Practitioners, Catherine Stone, gave a presentation on taking a step by step approach to understanding what we know about sleep and how to support a better nights sleep for children who have additional needs. A lunch was provided which allowed the group to share their own information and experiences as well as access advice and support from Sarah King from Contact A Family and Kath Fryer, Cerebra’s Regional Officer for Bristol.

Feedback from the event was positive. One parent said: ‘I’m not alone as I met someone with the same condition as my son.’

Another Mum said the day had helped her to feel ‘Nurtured – very welcoming presenters, a lovely lunch and time for me’.

As well as running workshops, Cerebra’s Sleep Advice Service can offer ongoing advice and support to local families experiencing challenges where their child either has a learning or developmental delay, or if they have a neurological disorder.  Catherine Stone works closely with the Specialist Children Centres in Bristol and runs regular advice clinics for parents as part of this valuable service.

Many thanks to SENSE Woodside Family Centre in Kingswood for hosting the day.

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

Families Join us for Hop Skip and Jump Play Day

Kath Fryer, Regional Officer for Bristol organised a successful Stay & Play Fun Day on Sunday 7th February for Cerebra members.

Thirty-five children and their families were able to come along, meet one another, share experiences and access advice and information at Hop Skip and Jump, a purpose built play centre for children who have additional needs.

Many families had not been before and their children had a great time exploring the music room, two sensory rooms, soft play area,  two ball pits,  and wide open spaces that the venue had to offer.  Children and their families were invited to stay and sample food and refreshments from the free cafe on the day and volunteers Melissa and Adam were on hand to offer amazing support.

Cerebra brought along Reflexology Therapist Sue Morgan who worked tirelessly to offer massage taster sessions to these well deserving Mums and Dads.

We were also able to fund Animal Assisted Therapy for the children who came along.  Therapists from ‘Sensory Heaven’ in Bristol brought along Arthur the rabbit and his guinea pig friends for cuddles on what turned out to be a particularly rainy Sunday! The children were guided to interact with the animals at their own pace according to their particular needs. Therapists at Sensory Heaven are Makaton trained and several children with communication needs enjoyed learning new signs for ‘rabbit’ and ‘guinea pig’.

Kath Fryer said: “The room where the Animal Assisted Therapy took place was so calm and magical. Children who find it harder to focus and concentrate because of their needs were completely relaxed and absorbed in the moment as they held the animals.”

Feedback from the event was positive. Comments included: ‘Thank you very much for a lovely family day! It made our Sunday very special. I enjoyed a foot massage and the children loved animal therapy!”

Another Mum described the day as: “safe, welcoming, understanding.”

Another said: “Thank you for giving us the opportunity to explore this place.  Knowing that there are places which I can take my child… to play with a range of things which he can learn from, be himself and not having other people judge him.”

We would like to thank the team at Hop Skip & Jump for enabling us to open this amazing venue on a Sunday when it is usually closed and Contact A Family who provided their local rep, Sarah King to offer additional information and resources that can help parent carers with the day to day challenges they come up against.

Cerebra’s Sleep Service Helps Scott and Natalie

Five year-old Scott who has a rare chromosome disorder and Autism, was having problems with sleeping by himself.  Natalie, Scott’s mum, got in touch with Cerebra’s Sleep Service for some help.

Natalie told us: “My son goes to sleep around 7.30pm. He falls asleep with me sat by his door. He wakes every night around 10.30/11pm. I then go in and get into his bed. Sometimes I can sneak out but usually he will then wake an hour later. He requests to be held and cuddled all night.”

After completing one of our sleep questionnaires to give us an idea of he nature of the problem, one of Cerebra’s Sleep Practitioners, Pattie Everitt visited the family at home. Pattie was able to discuss the issue fully with Natalie and also look at the practicalities of their home set-up such as location of bedrooms.

Pattie suggested the process of gradual withdrawal to Natalie.  This is a very gradual process of the parent moving away slowly from the child every few nights, or whatever pace suits the family.  Natalie has tried the process before but she didn’t have the confidence in the method to persevere. However, she was willing to try it again as she was in the right frame of mind and was more confident it would work.  She slept on the floor in Scott’s room to begin with, and gradually moved her mattress away.

Just a couple of months later Natalie had managed to achieve better sleep: “I am so pleased to be able to tell you that Scott is now in a new room and is currently sleeping through the night most nights and has been for the last month or so. I almost daren’t write it or say it because it is the first time in 10 years that I feel somewhat confident  that sleep will now be much better. Thank you for coming round and meeting me because it gave me the final push and incentive to do this and it will be life changing. Long may it continue, fingers crossed. I truly believe that if my child can be trained to sleep through there really is hope for other families.”

If your child is having problems sleeping please contact us on 01267 244210 or e-mail us at sleep@cerebra.org.uk. You can also complete a referral form on our website.