Author Archives: Sarah Jones

Singing to your baby

baby-listening
We take a look at lullabies and singing to infants. Is it an old-fashioned idea worth keeping?

Singing to babies and infants is something that comes naturally to many parents, grandparents and carers, and has carried on through many generations and cultures. Other parents might also want to adopt it as a deliberate routine for an infant who is different in their capacity to enjoy things or respond. A good start – babies can already hear their mother’s voice before they are born (Brezinka C., 1997).

Why not just talk?

Singing bestows added effects, such as:

  • Association and memory, for example a reinforcing effect from hearing familiar tunes, or learning to associate a lullaby with bed-time.
  • Another way of communicating with an infant, and a comforting way of hearing a parent’s or carer’s voice.
  • Engaging patterns of brain processing that are slightly different from processing speech (Ozdemir E., 2006).
  • Something that could extend into a form of communicative play, and into the infant actively making music. This could turn out to be a way they like to express themselves, add to other activities, and share with other children.
  • Entertainment that can stimulate or relax, as a background to other activities.

Why not just play a recording?

Again, singing as well adds elements, such as:

  • Obviously, the communication and relationship occurring between you.
  • Availability and ease of use of shorter, simpler and perhaps gentler bits of music.
  • Possibly, a quick way of lightening things up or providing a distraction.

Having said this, recordings and instrumental music have their uses as well, including for deaf infants who can pick up the rhythms / vibrations of the music. They may also sense you singing if you hold them close to you.

But I can’t sing!

mum-and-babyProbably you can, but some people have difficulty with singing the right note. Try pitching your voice by starting where you are, so if you want to sing a note but the pitch of your voice is not what you want, slide the note up or down to where you want it. With repetition, this should enable you to find the desired pitch more easily. There is a step-by-step ear-and pitch-training video at: http://your-personal-singing-guide.com/ear-training.html (Aaron Matthew Lim). Go on into a tune. If this is difficult, try songs that have the notes close together to start with, such as “Row, row, row your boat” or “Frère Jacques”.

Their singing voice is something that many people are rather sensitive about, so if a baby or infant does not seem to have a positive reaction, or any reaction at all, a parent may be easily put off. However the reason is more likely to be something different. For example, below a developmental age of about one year, it may not yet be possible to copy sounds, show a physical response to music, or use music as a “language” (cf. Center for Parent Information and Resources, Developmental Milestones, US Dept. of Education, 2010/2014). A lack of response may not be the same thing as a lack of impact. As time goes on you may see what calms or stimulates them (cf. UK National Children’s Bureau, Early Support, Information about behaviour).

Resources

For songs to sing, searching on “lullabies”, “nursery rhymes” or “nursery songs” will locate plenty of material, such ashttps://www.youtube.com/watch?v=MtYnT0786SQ, or http://www.babycentre.co.uk/lullaby-lyrics.

The Center on the Social and Emotional Foundations for Early Learning publishes suggestions for activities, including musical ones, to go with children’s books and other resources. The ideas could be used on their own or with different books (Vanderbilt University).

Technical informationlullabies

What are discussed in this article are really softer issues like enjoyment between parents / carers and infants. It has to be said that a number of research studies looking for specific technical benefits of music with infants have not found anything. Among those that have done so, though is Arnon S. et al. 2014, Maternal singing during kangaroo care etc.,  (Acta Pediatrica, doi:10.1111/apa.12744).

“Voices” is a journal containing other research articles about singing for and with children, from different parts of the world.

“Imagine” is an annual online magazine about early childhood music therapy. Therapists attempt to support motor development, breathing and skills such as communication for children with special needs.

Why Music Education? is an evidence-based discussion of ways in which music can contribute to children’s education and development, by the (US) National Association for Music Education (2007).

Further references:Brezinka C. et al. 1997, The foetus and noise. Gynakol Geburtschilfliche Rundsch 1997;37(3):119-29 [translated abstract, PMID 9483870].

Ozdemir E. et al. 2006, Shared and distinct neural correlates of singing and speaking. NeuroImage 33 (2006) 628–635.

PenCRU Family Fun Day

The Peninsula Cerebra Research Unit for Childhood Disability Research hold family fun day at Pennywell Farm in Devon.

The Peninsula Cerebra Research Unit for Childhood Disability Research (PenCRU) recently held their annual family fun day at Pennywell Farm in Devon.

The event was organised in order to thank the unit’s Family Faculty which is made up of all the families who have been involved in the research that the unit carries out. The day was a huge success and PenCRU wanted to thank everyone who took part, especially the unit’s very own Chris Morris.

Chris “volunteered” to take part in a cream pie challenge which saw many of the children who were in attendance queue up to make sure he was well and truly covered in pie! The staff at PenCRU even made sure there was video evidence of the challenge which can be seen below. It was all for a good cause however with Chris choosing to donate sponsorship raised through the challenge to Cerebra and our work.

The PenCRU unit aims to carry out research that is relevant to families with disabled children and is there to respond to questions from families about therapies and health services for all children and young people affected by disability.

Accessing Services: The View From a Parent

Alison Thompson

Alison Thompson

Alison Thompson is an author, speaker and mum to Daniel, who was diagnosed with ADHD when he was six. This is her heartfelt account of the troubles she has faced when trying to access services for Daniel.
My son Daniel was diagnosed with Attention Deficit Hyperactivity Disorder when he was six, but I’d known there was something wrong long before that. He was a fretful and anxious baby who rarely slept, and as a toddler he was constantly on the go. We went to a local parent and toddler group and he was the child you’ve all seen, running round the room knocking over the other children’s Lego towers, climbing the shelves to get what he wanted from the top, throwing paint on the floor causing chaos. At story time I had to wrestle him to the floor to get him to sit still, and even then he’d be calling things out and distracting the rest of the group.

Daniel was a caring, funny, quirky little boy, with a charming smile and a wicked sense of humour – though he had some strange obsessions. He had a purple teddy bear called Strum who went everywhere with him, and Daniel could not get to sleep if Strum wasn’t there. One day we left Strum behind at a motorway service station and I did a sixty mile round trip to retrieve him, because I knew what a nightmare bedtime would be without him! For a while Daniel was also obsessed with Only Fools and Horses. He could recite some of the episodes word for word – which was fine until the day he told a friend to “Shut up, you tart!” I was mortified.

Daniel Thompson

Daniel Thompson

But there was a darker side to Daniel too. He couldn’t concentrate on anything for very long and he seemed to drift off into his own little world at times. At meal times I’d have to remind him he was meant to be eating as his fork would stop halfway between the plate and his mouth, and in the mornings I’d leave him to get dressed and come back to find him in his room, one leg in and one leg out of his trousers because some toy or game had caught his attention. But the worst thing was the tantrums. Like Jekyll and Hyde, the smallest thing would set him off and he would turn into a mini Incredible Hulk, lashing out at anyone or anything that got in his way. He’d have several meltdowns a day and they could last for hours. Our home was full of holes in the walls and my daughter and I were constantly covered in bruises.

Daniel started at nursery but he didn’t seem to fit in with the other children, somehow he wasn’t in sync with them, and his domineering personality caused problems. At the end of the year, the teacher recommended I see my doctor because she felt there was more going on than normal toddler tantrums, and I agreed. The GP referred us to a paediatrician who said Daniel was “borderline ADHD” – which meant nothing, really.

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Edinburgh Woollen Mill Fashion Show

IMGP6723 mainEdinburgh Woollen Mill host a fashion show for the charity – with Cerebra staff as the models!

The people of Carmarthen were treated to a fashion show by the town’s Edinburgh Woollen Mill store on 7th October.

The evening was coordinated by the store’s manager Tracey Moore and Cerebra Community Fundraising Officer Allyson Silverthorne and treated eager observers to a preview of EWM’s autumn collection of clothing.

Several members of Cerebra staff took part in the event, strutting their stuff on the catwalk along with staff from EWM. Each budding model had three outfits to show off ranging from smart to casual and Allyson even got to wear clothes from the new Christmas range.

As well as having entertainment for the evening, guests were also treated to cakes and a raffle, prizes for which were generously donated.

Allyson said: “I would like to say a big thank you to everyone who attended on the day and to everyone who helped to organise the event. We raised £88 for Cerebra and also helped to raise awareness of our charity. A big thank you to Father Pious who allowed us to use St Mary’s Church Hall.”

Nursery Children Become Super Fundraisers

elliott bennett chequeChildren and staff at nursery in Dorset dress up to raise money for Cerebra.

We would like to say a big thank you to staff, parents and children at Scallywags Nursery in Dorset for raising a fantastic £270 for Cerebra.

The children at the nursery had a great time dressing as superheroes and princesses to raise the funds for us.

The cheque was collected by Cerebra Ambassador Chris Bennett whose son Elliott attends the nursery.

Chris is extremely proud of Elliott, who has cerebral palsy.

He said: “We don’t know how much cerebral palsy will affect Elliott’s life, I found it very hard to come to terms with Elliott’s diagnosis but he is working so hard and making his own special journey in life.”

Child of Courage

Josh113 year old Joshua Nurse has been nominated for a Child of Courage award.

We are thrilled that Josh has been nominated for the Child of Courage Award as part of the Carmarthen Journal’s annual Community Hero Awards. The winner will be announced at a ceremony on 26th September 2014.

Josh was born with a condition called Agenesis of the Corpus Callosum, a rare condition.  It means that Josh is missing all the connective tissue that links the right and left hemispheres of his brain, which has resulted in Josh having severe learning disabilities.  He has poor concentration and can be easily distracted, has problems with balance that can often make him sick and, as he’s gotten older, has developed more severe autistic tendencies.

It took a long time before it was recognised that Josh had a problem, but when Josh was finally diagnosed his parents didn’t know where to turn – “Eventually the doctor said ‘your child will be severely disabled.  We came out of the hospital in one hell of a state. But we learned very quickly that we had to cope somehow.”

Josh’s family got in touch with Cerebra and we’ve been there for the Nurse family throughout Josh’s life with advice, support and information. Our grants scheme helped to pay for special sensory toys for Josh to aid and improve his development as well as a touch screen computer; the family have also stayed at our holiday home, Vallecchia, in Pembrokeshire.

Josh has also been a great help to the charity when we’ve needed him – he has drawn the winning tickets in our summer and winter raffles, presented cheques to our lottery winners and posed for photos for charity publicity. Some of you may recognise Josh who helped us celebrate our 10th birthday a few years ago. He is such a pleasure to be with and he has touched the hearts of everyone who has met him.

Josh’s mum Julie and dad Darriel, as well as the rest of the family, have worked hard to give Josh a full and rewarding life and Josh is a credit to them. Josh needs to be kept active and to have a routine that he is familiar with and has a team of people who help do just that – through school, support groups and respite care.

Although he’s limited with what exercise he can do, he enjoys being in the water and is a keen member of the Salmon Club. Josh loves music – especially dance music – and sings and dances to Calvin Harris in his room. He also gets the chance to dance at a Zumba class through school.

Josh has a great fascination with technology and likes nothing better than spending time looking at equipment in Curry’s/PC World. The staff in the Carmarthen branch have got to know Josh and earlier this year took the casing off a washing machine and covered the workings with Perspex so that Josh could spend a happy few hours working out where all the wires and pipes went!

Life has been even more tough for Josh in recent times as his mum and dad have both battled with ill health. Darriel has endured 5 spinal operation, which have all failed, leaving him in continuous pain and his mum Julie has been receiving treatment for a brain tumour. On top of this Josh is making the difficult transition to teenage years and secondary school, where he has settled in well.

All of these circumstances and uncertainties would be difficult for any child but for Josh, who relies on routine and stability, it has been extra hard. He is a sensitive, loving boy who is coping really well and is determined to enjoy his life despite his difficulties.

The whole family are a pleasure to know and everyone at Cerebra is is so proud of Josh who shows such great courage in overcoming the problems that he faces. We are keeping our fingers crossed for Josh at  the ceremony on Friday – we’ll let you know how he gets on.

Minimising the effects of additional learning needs: Part 1

education1
The first in a four part series discussing parents’ common worries about education with special or additional needs.

Much is written about systems for identifying and meeting the educational needs of children with the most severe disabilities and learning difficulties, particularly at the moment with the new system in England.

However, many more children have additional / special educational needs without being at the greatest / most complex level calling for a Statement, Education Health and Care Plan (new, in England) or Co-ordinated Support plan (in Scotland).  This is the first in a series of articles about the support for this larger group of children. Each article will deal with a common worry parents have about their child’s education when they have special or additional needs.

Q.  “If they are not at the greatest level, will my child’s additional needs be met at school”

A.  It is true that in many ways, schools deal with special / additional needs informally.  However the legislation, guidance and codes of practice cover all children with additional learning needs and not only those needing the most concentrated levels of support.  Educational codes of practice are devolved, so that each area of the UK now follows a different code, but the principles followed in each one are similar.

England now has the SEND code of practice 2014, under which children not needing the most concentrated level are given “Settings-based SEN Support”. Under SEND, compared with the previous code in England, there is more of a continuum with the approach that is expected for all children, to identify and deal with anything that is reducing their potential benefit from education.  SEN Support also now applies to young people aged 16-25 and can begin, theoretically, at age 0.  The statutory guidance states the following, and this includes children who are currently on “Action” or “Action Plus” levels of support:  “The legal definition of SEN has not changed so that no child or young person should lose their support simply because the system is changing.  Special educational provision should continue for children and young people who need it because they need educational provision that is additional to or different from, that made generally for others of the same age in mainstream settings. It may change only if:

  • a child or young person’s learning needs have changed, or
  • the educational setting has changed its universal offer” (Dept for Education, 2014).

Parents of children needing Settings-based SEN Support should be involved in “regular review and discussion” of their child’s progress.  The class teacher is a key person in identifying and supporting children at this level, and the Special Educational Needs Coordinator (SENCO) remains another point of contact for parents.  Whereas, for some children, the changeover from Statements (under the previous code) to EHC Plans (under this code) may take until 2018, the changeover from Action and Action Plus to SEN Support is expected to be achieved by September 2015.  Sections 8.5 onwards of the statutory guidelines (Dept for Education, 2014) describe how a similar system now has to be introduced into post-16 institutions as well.  The complete timetable is in Annex A of the guidelines.

education2The approach to learning needs at every level is described in the new code as a graduated and continuous process of “assess, plan, do, review”.

Each local authority in England publishes a “local offer” describing what SEND-related services are available in the area and how to access them.  At the time of writing, these offers are in a state of transition to the new system.  Some currently mention assessment for EHC Plans without mentioning Settings-based SEN Support, however as above, both are part of the new system.  Each school also has a special educational needs policy / “school offer”.

The new code suggests to me that potentially, there could also be more integration with non-educational services for children receiving Settings-based SEN Support, though not in the same manner as for those with EHC Plans.

In Scotland, the Code of Practice is “Supporting Children’s Learning” (2010), which applies between ages 3 and 18 years.  In this there is a staged approach to additional needs, moving through the support types and levels that might be required in response to concerns expressed by parents, teachers or others, broadly considering first the least extra support that might be needed.  Only some pupils with additional needs will prove to be at the level where a formal Co-ordinated Support Plan (which was the successor to a “Record of Needs”) is required, but this methodology should also identify and seek to meet the needs of the others.  Local authorities go into more detail for parents, for example the Children In the Highlands Information Point, http://www.chipplus.org.uk/index.asp?pageid=331378.  Scotland also has the concept of the Universal Child’s Plan, which is triggered when a child’s learning needs demand more than ordinary classroom teaching techniques (which do encompass additional needs to some extent), so that other services and an Individualised Education Programme (IEP) become involved.

Northern Ireland has the Code of Practice on the Identification and Assessment of Special Educational Needs (which also includes instructions for provision.  Dept of Education, Northern Ireland, 1998-2005).  Northern Ireland and Wales still use the three-level system of Action, Action Plus and Statementing levels of support.

The equivalent code in Wales (Welsh Assembly Government, 2004) approaches assessment and provision along similar lines, described as a “graduated response”, also like the other codes, stressing that any difficulties the child has should be picked up early.  The codes describe when Action and Action Plus are applicable and how assessment, provision etc. should occur, and they apply between the age of 3 years (and the time leading up to that), and an age between 16 and 19+ years.  Anyone with concerns about what provision should be made for a child can find useful details in the sections of these two codes and their associated documents relating to the applicable age-range (early years, primary school age or secondary school age.  There are also sections on transition from school age).

In all parts of the UK, there are local authority / board SEN specialists who can be called upon by schools to assist in respect of identification and provision.

Where there has always been a grey area, is in defining what are “significant” learning needs.  To many parents any learning need, or barrier to learning is “significant”, whereas there are schools and/or individual teachers who consider there are “no problems” beyond a threshold that is not necessarily defined.  For children, consistent difficulties and fallings behind can lead to frustration, lowered self-esteem, further educational difficulties and relationship issues with peers, however educationalists expect children to learn at different speeds and to have different learning styles, strengths and weaknesses, so when does this become “significant”?  In principle, the statutory codes and guidelines would seem to agree that any learning need should be picked up and supported as early as possible, yet they still use the term “significant” in some places.  In Scotland, the code and guidance include a discussion of the term in the light of Tribunal and Court decisions, and gives some examples (Scottish Government, 2010).

References

Code of practice on the identification and assessment of special educational needs, and supplement (1998-2005), (Dept of Education, Northern Ireland).

Dept for Education (2014, England), Transition to the new 0 to 25 special educational needs and disability system. Statutory guidance for local authorities and organisations providing services to children and young people with SEN.

SEND code of practice: 0 to 25 years (2014), (Dept for Education and Dept of Health, England).

Special educational needs code of practice for Wales (2004), (Welsh Assembly Government).

Supporting children’s learning (2010, revised edition), Scottish Government.

Books in the library covering special needs in general

library-booksThese books don’t quite fit into any of the specific categories based on diagnoses, so they are listed in the section of the library list called ‘Learning Disabilities and Special Needs in general’.
There are some pretty good books amongst them, which you might not come across when you are looking in for books in the other sections

  • L6198  When the Bough Breaks: a mother’s story by Julia Hollander
  • L6213  Special Educational Needs Inclusion and Diversity by Norah Frederickson
  • L6245  Children with Complex and Continuing Health Needs: experiences of children families and care staff by Jacqui Hewitt-Taylor
  • L6249  Is That My Child? Exploding myths of dyspraxia, dysplexia, tourette syndrome of childhood, ADD, ADHD and OCD by Robin Pauc
  • L6257  Mothering Special Needs: a different maternal journey by Anna Karin Kingston
  • L6276  Understanding Your Special Needs Grandchild by Clare Jones
  • L6278  A Practical Guide to Equal Opportunities by Hyacinth Malik
  • L6314  Building a Joyful Life with your Child who has special needs by Nancy Whiteman
  • L6372  Disabled Children Living Away From Home in Foster Care and Residential Settings by Claire Burns
  • L6488  If Only I’d Known That a Year Ago by RADAR
  • L6493  Letters to the Home Front: positive thoughts and ideas for parents bringing up children with developmental disabilities by John Clements
  • L6500  Chicken Soup for the Soul: children with special needs by Jack Canfield
  • L6535  Special Educational Needs: a parents’ guide by Antonia Chitty
  • L6536  Personalisation in Practice: supporting young people with disabilities through the transition to adulthood
  • L6537  Identifying Special Needs: a checklist for profiling individual differences
  • L6555  Different Dads: father’s stories of parenting disabled children

For more information on our library and to download a full library list please see our library pages.

CIC reviews CAPR-Style clothes

bodyvestWe were recently made aware of a lovely company called CAPR-Style who make awesome fashionable clothes for kids and young adults.

Not only have their clothes been designed to fit appropriately, but they are really cool looking and functional too. Ross Lindsay very kindly sent us some trial outfits and the CIC team were really impressed with the build quality, the softness of the fabrics and how they had managed to get such functionality into such cool looking clothes.

Claudia Romero, the founder of CAPR-Style set up the company after finding it increasingly tough to find clothes for her own son. She says:

All our products are designed specifically for people with severe disabilities and also for wheelchair users and those with incontinence problems. The main users are those who have: limited range of motion and impaired dexterity, motor neuron disease, muscular dystrophy, spinal injury, cerebral palsy, multiple sclerosis, stroke, hemiplegia, rigidity, developmental disabilities, toileting/changing needs, G-tube feeding, catheters and colostomy bags and IV tubes. All the final adjustments to our products can be customize to personal needs (i.e. T-shirts with access to PEG tube or length of legs).”

As one small example from their extensive range, they supply the “Merrick Style Body Vest” with a super cool Little Monster Pattern. This is a one piece body vest with attached shorts which would be very versatile for playing or sleeping.

An opening at the crotch helps with dressing and helps secure any nappies or pads that are worn. To aid dressing the left shoulder or both shoulders of the body vest can be made to open and be secured with snap fasteners. The opening means the body vest can easily be placed over the head and then secured in place without having to thread arms into place. CAPR-Style even offer an additional service to include PEG-JEJ tube openings with covers.

Other clothing items offered are trousers with Velcro seams to aid dressing, long and short sleeve t-shirts and the range is constantly evolving. They cater for girls and boys from 3 years old into young adulthood. Excitingly they are planning to add skirts, jumpers and jacket to their range very soon. Keep in touch via CAPR-Style’s Facebook page for more information.

Based in Edinburgh, CAPR-Style are very proud that all of their clothing is produced in Scotland to a very high standard at very reasonable prices, with all their materials sourced from the UK.

For further information the contact details are: info@capr-style.com or 07804 512 186 and the website is: www.capr-style.com.

JLA childhood neurodisability research priorities – Top 10 published!

The James Lind Alliance

The James Lind Alliance

The James Lind Alliance (JLA) research priority setting partnership publishes its top 10 research questions that still need to be answered on the effectiveness of interventions for childhood neurodisability.

The aim of the James Lind Alliance Childhood Disability Research Priority Setting Partnership was to identify and prioritise unanswered questions about the effectiveness of interventions for children and young people with neurodisability from patient, carer and clinical perspectives.

Suggestions were gathered in an open survey, aggregated and framed as research questions, then checked against existing systematic reviews of research evidence to ensure they were unanswered. The topics were initially prioritised in a vote with stakeholders, and then discussed at a workshop by young people, parent carers and clinicians.

The final prioritisation workshop was held on 5 June 2014 at the Royal College of Paediatrics and Child Health in London. Participants in the workshop came from various regions of England.

There were three young adults with neurodisability, seven parent carers, three representatives from generic child disability charities (including Cerebra), a disability advisor in education, and eight health professionals (paediatrician, speech and language therapist, three physiotherapists, occupational therapist, nurse, orthopaedic surgeon). Three representatives from NIHR observed the meeting.

The group succeeded in prioritising the 25 uncertainties shortlisted from earlier stages, and a Top 10 was agreed. The Steering Group will meet again in September to review progress with our dissemination strategy.

To find out more about the work and all the topics considered and prioritised, please visit:

http://www.bacdis.org.uk/research/psp.htm