Childhood Changes: A Way of Thinking

communication
We suggest practical ways to help ease children through the transitions in their lives.

Cerebra is among the organisations providing information that helps to ease children through the transitions in their lives – to different kinds of education, lifestyle, levels and types of independence, and services that come and go at different ages.  We describe the processes involved, contacts, legal aspects and so on.

There is another aspect to this, though; what about the things that go through a child’s mind in the run-up to and during a transition, and how long does it take them to settle out of one situation and into another, especially with the element of a neurological disorder to contend with?  Some children with these disorders experience particular difficulties with any kind of change which ideally needs careful handling, as parents and carers soon learn.

What can be done?  Here are a few ideas, not by any means exhaustive.

New environments, expectations, life states and routines are some of the things that involve adjustments of thinking.  So do expected changes that are delayed or do not happen after all.  This might be hidden, because it is not easy to know all of what a child is thinking and feeling.  Parents might also go through progressive thoughts and feelings as they begin to envisage the future themselves.

Preparing for changes

Change is partly about acquiring new habits. Could any of these, or elements of them be acquired in advance, and could the processes of acquiring them, and of dreaming and imagining the next phase, be made enjoyable?  Are there aspects to look forward to, and role models who have succeeded in making such a change? Prior experience, skills and understanding could help when the new situation arrives.

A major London-based research project about the transition from primary to secondary school lists factors that children thought would help other children, also factors that parents thought primary and secondary schools could do (Evangelou M., 2008).  There were a number of factors but the top ones were:  to be confident, not worry/be scared; to make more visits to the new school, go to induction/taster days etc; to be prepared/organized, and have right equipment; and to make and keep friends (children).  Also, that primary schools could prepare better for school work at Y7 and increase homework; and that secondary schools could arrange more induction, open or taster days and other visits (parents).

Another study conducted by the Foundation for Learning Disabilities resulted in three sets of tips to reduce the stresses specifically on children with special needs, with ideas that could help them feel confident and get a good start; one for children, one for parents and one for teachers, which can be downloaded from: http://www.learningdisabilities.org.uk/our-work/employment-education/moving-on-to-secondary-school.

The charity Young Minds publishes advice for schools to give support in situations of change, listing 27 common types of transition that children and young people go through.  Encouraging children to support other children is one of their suggestions as well. (Young Minds, 2014).

The website Mumsnet contains tips gleaned from parents, about preparing infants in general to start school for the first time (Mumsnet, 2014).  These include sharing the process with the child, addressing any concerns; familiarising them with places, activities and people; thinking about things they will be able to carry on with and new things they might enjoy; and reminding them of changes they have successfully made in the past.  Then, over the first few weeks, to be prepared for them to take time to adjust; to keep in with familiar routines and reassurances at home; for parents to get involved with the child’s new environment as well.

Other people can be good sources of ideas about assisting children in these areas, if asked, but if not asked they may only talk about the practical and strategic aspects of a change, such as going to see a new school beforehand, or equipment a child might need.  Nursery staff and teachers, particularly, draw on a lot of professional theory about how to prepare and equip children for changes in the educational context, and many nurseries and schools do prepare for changes /transitions.  Nurses and counsellors are among those who study how to help children through aspects of change that might be difficult for them.  Another advantage of questioning involved professionals on this could be that parents and professionals complement each other in their efforts.

One transition that our helpline is coming across, because some children are finding it difficult, is the move from nursery to primary school.  The referenced article from At Home Magazine (23 August 2011), gives some ideas on this, also on moving “between rooms” in a nursery.  Moving to nursery or a pre-school (and sometimes other changes as well) are also situations where it is valuable to understand the issue of separation from parents from a child’s point of view.  This is another subject that has a considerable literature connected with it, but one place to start would be an article by Dr Peter Cook about attachment and separation (Cook P., 1996-2014).

Building resilience

There are times when it is unavoidable for a child to have to transition quickly.  Of course, a sense of trust, comfort and security, with some continuity of the familiar should help.  For children who can manage it, also building skills and resilience in advance could come into its own.  What new skills, or currently underdeveloped skills, will they need?  What about parts of the new routine could they start to get used to or understand in advance?  Study skills and independence skills are among those that are useful in most situations.  Good interaction is often a key to adapting in new situations, and is something that many children with special needs have to work on.  If the child has a speech and language therapist, or another professional who helps children to interact, they may have suggestions.

There is much more material available now on study skills than there used to be.  They include:  how to take and finish breaks, self-care, eating, exercise and rest as well as ways of learning, memorising etc.

Independence skills and the nurturing of self-motivation are also among the resilience-builders that are taught to professional educators, but they are helpful at home as well.  Learning to set reasonable goals, moving towards them step-by-step, and receiving encouragement are  key factors.  It does not matter if progress is slow.  Children might need help to express and reset goals if there is any residue from negative experiences, for example, having been expelled from a school and preparing to go to another one.

Training materials for educators of young children include techniques for teaching them to be self-reliant in a group setting.  The “3-before-me” rule is one of the techniques, so an internet search for “3-before-me” will help to home in on these materials.  Some specialised methods, such as Montessori, pay particular attention to this subject.

The references below include resources on these subjects.

For situations that need more ideas

It is well-known that children with autistic features and severe learning disabilities have particular difficulties with change. Ideas from that field could help some other children also.   The National Autistic Society makes many suggestions, such as:  having a familiar environment with routine and structure; preparing early for the change; letting others know who are involved about the anxieties and difficulties; use visuals, social stories, comic strip conversations etc. to explain to the child; visit new places several times; make a book of photos and information; let them express themselves and work out what to do if they become anxious; keep helping after the change takes place; and other practical suggestions (National Autistic Society, 2013).

To feel comfortable with a change, a person needs to be able to believe in it.  This requires translation of information into meaning and purpose, easier for some than others.  If, for example, the child believes that the change is really to benefit someone else and not them, they may not feel like cooperating with it.  The “psychological contract” is a concept used to work with processes like this in the business world, where two parties mutually accept and expect responsibilities and promises (more details:  Chartered Institute of Personnel and Development 2014).

The fairly recent concept of “nudge theory” comes from the socio-political world.  This is a way of indirectly encouraging an attitude, decision or behaviour by gently persuading, such that the subject possibly part-knows that they are being persuaded but finds that easier to accept.  It might assist parents and others to ease transitions for children, as well as providing an understanding about how we and they are ourselves being “nudged” by various societal forces and advertising.  Many of its concepts are just a codification of things that parents would naturally do, but it could provide tools for those who see that their children need ways of making a transition easier.   An example of a “nudge” might be, instead of giving an instruction to a child to tidy up, playing a tidying game that the child takes part in (Chapman A., 2013-14).  Among the long list of nudging concepts that could be applied to situations of change is that of “loss aversion”, referring to things a child does not want to lose about a current situation, e.g. they may not want to go to another school because some of their friends will be going to a different one.  Possible approaches to “loss aversion” include focusing on what they will gain from the new situation, and clarifying the realities of the change rather than the perhaps exaggerated worries associated with it.  Another concept is “priming”, which would mean helping the child to visualise positive actions and outcomes, including any steps they can themselves take towards the change.  One note of caution about “nudging”, though, is that it could easily trespass across a line into unethical manipulation.  The article referenced (Chapman A., 2013-14) contains a lot more detail.

References

CIC is back up and running!

CIC full 2 main

As you may be aware we have moved offices – in fact, we moved building, workshop, office and all of our kit. It took forever! We had enjoyed a top floor office in University of Wales TSD Swansea for the last 9 years, with a panoramic sea view and lots of space. But in line with the plans to re-house the School of Industrial Design in a newly renovated building in the city centre, we upped sticks and joined them.

Our new home is in part of the Old Swansea Central Library which has been renovated and sports a fantastic new glass atrium on the west elevation. You may have seen the building in one Dr Who episode where they filmed in the round reading room. The building looks fantastic now, and we have brand new state of the art machines in the workshops and a lovely new office (no sea view unfortunately).

CIC full main

That said, it took a while to move in! As with all building projects there were many unforeseen obstacles which led to delays. We packed up our things into boxes and crates, according to the schedule, in June but we were not able to move in until August in the end and the workshop was not commissioned until early November! So after a few homeless months and with no workshop we did get delayed in some of our work, and we have been fighting hard to pull back some of our deadlines. Thank you all so much for being patient with us!

The good news is that our phone works again!! Yes- you heard it, 3 months off thegrid, but we are connected again! Please call us on 01792 483688 if you have any requests for products or help that we might be able to offer.

We have many new products getting close to finishing; including fish tank enclosures to make fish tanks accessible to children, “Oxygem” our oxygen cylinder trolleys and the 20 writing slopes are close to completion- we had to order the parts from China to get these finished!

Christmas Drawing Competition

Get involved with our fabulous festive drawing competition and your child could win some of our fantastic toys.

Do you know any budding young artists? Then our exciting new competition could be right up your street!

We are asking to see your child’s best Christmas picture to get us ready for the festive season! The picture can be of anything you want so long as it is Christmas related so get your creative hats on and help us to get into the Christmas spirit!

The owners of the best pictures will win something from a fabulous selection of boy’s and girl’s toys that have very kindly been donated to us by The Fence Club.

Children of all ages are welcome to enter and there are prizes to suit all ages.

To enter, please provide us with your child’s name, age and your address along with their artwork which can either be emailed with the subject “Christmas Drawing Competition” to info@cerebra.org.uk or posted to:

Christmas Drawing Competition
c/o Parent Support
Cerebra
Second Floor Offices
The Lyric Building
King Street
Carmarthen
SA31 1BD

Get your entries in quick! The closing date is 10th December so that we can send prizes out in time for Christmas!

We’ll include a selection of them in a future News e-mail.

Good luck!

Sleep seminar

father and sleeping baby
On 13th November Cerebra held a seminar at the Thistle Hotel in Birmingham on ‘Sleep in children with developmental difficulties’. The event was held in conjunction with the Cerebra Centre for Neurodevelopment Disorders at the University of Birmingham.

The purpose of the seminar was to disseminate the findings of recent sleep research including the use of both behavioural and medical interventions and to describe the practical implications for parents and professionals.

Key speakers included:

  • Dr Andy Badshaw (University of Birmingham)- An introduction to sleep
  • Prof Paul Gingras (Guys and St Thomas) – Sleep in children with neurodevelopmental disorders
  • Lisa Fishwick (Parent) – The impact of having a child with sleep disturbances
  • Moira Draper (Cerebra) – Cerebra sleep services
  • Dr Luci Wiggs, (Oxford Brookes University)- Non-pharmacological approaches to sleep problems in children with neurodevelopmental disorders
  • Sleep research at the Cerebra Centre for Neurodevelopmental Disorders.

We had a very good turnout, with 74 delegates attending on the day. The presentations were excellent and stimulated much dynamic discussion amongst the group. Delegates said the day provided ‘good variation of topics and good signposting to relevant services; definitely felt more empowered to deal with sleep issues’ and stressed how important it was to have a parents view of sleep problems and their approach to a solution.

Next time delegates would like a dedicated seminar addressing sensory processing, challenging behaviour and mental health in children with developmental disabilities and more parent stories, talking about what worked for them.

Cerebra Thank the West Wales Motorcycle Trust

Allyson Silverthorne picking up the cheque.

Allyson Silverthorne picking up the cheque.

We thank the West Wales Motorcycle Trust for their donation at a recent presentation.

Cerebra are exceptionally grateful to the West Wales Motorcycling Trust who donated £2,000 at a recent presentation.

Every year, members from the Trust organise the West Wales Motorcycle Show which brings together motorcycle enthusiasts from across South Wales.

Profits from the show are then distributed between the Trust’s elected charities for that year.

Cerebra’s Community Fundraising Officer Allyson Silverthorne attended the presentation to receive the cheque from show organisers including those pictured: Ian Close, Allan Davies and Maureen Rapley, and expressed her gratitude for the huge donation.

“I was delighted when I realised how much Cerebra would be receiving this year. We have had donations from the West Wales Motorcycling Trust before, for which we are very grateful but this exceeded all of our expectations!”

Allyson helped to run the “Kid’s Corner” at this year’s Motorcycle Show as well as selling raffle tickets for the organisers, who expressed their gratitude for her help.

Win Big in Our New Year Bonanza Draw!

Start 2015 with a bang by winning £10,000 in our very special New Year Bonanza draw!

Our ‘Count Me In’ lottery is a great way to support Cerebra. For just £1.20 a week you could have the chance of winning £1,000 every Thursday.

In our New Year Bonanza Draw, instead of claiming the usual £1500, one very lucky winner will be bagging themselves a very nice £10,000 which is sure to put a smile on your face!

Both existing and new lottery supporters will be eligible to win this exciting prize and there is no limit to the number of tickets you can have- you can increase your chances of winning even more by having more than one ticket a week!

Of course, as well as standing the chance of winning yourself, you also help Cerebra to continue with its work and provide on-going, practical support to children and their families.

Without our loyal, regular supporters, we simply wouldn’t be able to reach out to the many thousands of children and families that need our help each year so do something great this year and join Cerebra’s “Count Me In” Lottery!

Joining our “Count Me In” Lottery couldn’t be easier! You can join on our website or call our Lottery Manager Sharon Bowen on 01267 244218.

Can we count you in?

New books in the library published in 2014

This month’s booklist is the new books we have that were published this year.

General

  • L6522 – Mindful Therapeutic Care for Children by Joanna North  ISBN 9781849054461
  • L6595 – Navigating the Medical Maze with a Child with ASD: a practical guide for parents by Sue Ming  ISBN 9781849059718
  • L6529 – A Practical Guide to Mental Health Problems in Children with Autism by Khalid Karim  ISBN 9781849053235
  • L6537 – Identifying Special Needs: checklists for profiling individual differences by Glynis Hannell  ISBN 9780415820233
  • L6588 – Understanding Fetal Alcohol Spectrum Disorder: a guide to FASD for parents carers and professionals by Maria Catterick  ISBN 9781849053945
  •  L6605 & L6606 – Sleep Better: a guide to improving sleep for children with special needs by Mark Durand ISBN 9781598572940

Sensory processing

  • L6526 – The Anger Box: sensory turmoil and pain in autism by Phoebe Caldwell  ISBN 9781909810440
  • L6534 – Sensory Processing Challenges: effective clinical work with kids and teens by Lindsey Biel  ISBN 9780393708349
  • L6600 – Sensory Stories for Children and Teens with Special Educational Needs by Joanne Grace  ISBN 9781849054843

Communication

  • L6533 – Augmentative and Alternative Communication: models and applications for educators speech language pathologists psychologists caregivers and users by Filip Loncke  ISBN 9781597564984
  • L6579 – A Different Kettle Of Fish: a day in the life of a physics students with autism by Michael Barton  ISBN 9781849055321
  • L6583 – Colour Coding for Learners with Autism: a resource book for creating meaning through colour at home and school by Adele Devine  ISBN 9781849054416
  • L6586 – Talk To Me: conversation strategies for parents of children on the autism spectrum or with speech and language impairments by Heather Jones  ISBN 9781849054287
  • L6587 – Targeting Language Delays: IEP goals and activities for students with developmental delay by Caroline Lee  ISBN 9781606131985
  • L6594 – The Green Zone Conversation Book: finding common ground in conversation for children on the autism spectrum by Joel Shaul  ISBN 9781849057592

Personal Skills

  • L6536 – Personalisation in Practice: supporting young people with disabilities through transition to adulthood by Suzie Franklin  ISBN 9781849054430
  • L6601 – Tom Needs to Go: a book about how to use public toilets for boys and men with autism related conditions by Kate Reynolds  ISBN 9781849055215
  • L6602 – Exploring Friendship Puberty and Relationships: a programme to help children and young people on the autism spectrum to cope with the challenges of adolescence by Kate Ripley  ISBN 9781849054393

Children’s books

  • C0207 – Babies are Noisy: a book for big brothers and sisters including those on the autism spectrum by Anne Marie Harrison  ISBN 9781849054591
  • C0210 – My Autism Book: a childs guide to ASD by Gloria Dura-Vila  ISBN 9781849054386
  • C0211 – The Disappointment Dragon: learning to cope with disappointment for all children and dragon tamers, including those with Aspergers by K I Al-Ghani  ISBN 9781849054324
  • L6598 – Can I Tell You About Cerebral Palsy? by Marion Stanton  ISBN 9781849054645
  • C0214 – Can I Tell You About Tourette Syndrome? by Mal Leicester  ISBN 9781849054072
  • C0215 – Can I Tell You About Dyspraxia? By Maureen Boon  ISBN 9781849054478
  • C0229 – I’ll Tell You Why I Can’t Wear Those Clothes by Noreen O’Sullivan  ISBN 9781849055109

Motorsport Mum Returns to Racing

Maria Brown and her mini

Maria Brown and her mini

Maria Brown raised £1,570 for Cerebra by racing her Mighty Mini after taking a break to look after her son who has cerebral palsy.

Many parents who have a child with a disability will have experienced having to give something up in order to look after their child and cater for their additional needs.

Maria Brown was forced to give up her motorsport career eight years ago when she became pregnant with her son Piran. This sabbatical was only meant to be for a few years, however Piran was born prematurely and was diagnosed with Cerebral Palsy. This changed everything and she put her career on hold to dedicate her time to care for Piran. Despite the everyday challenges that Piran’s condition brings, Maria always intended to return to motorsport and is now in a position to do just that.

Before she was forced to put her career on hiatus, Maria very successfully competed in the Mighty Minis national race championship, becoming the first lady to ever win a Mighty Minis race. She later progressed to the more powerful Super Mighty Minis.

Since returning to the sport, Maria has become a qualified ARDS instructor and has worked with Formula Woman assisting female drivers to develop their racing skills. She also writes for Mini World magazine and now that she is once again a prominent voice in the world of motorsport, Maria is very keen to use her skills in order to raise awareness of Cerebral Palsy and the charities that support those affected by it, including Cerebra.

Maria Brown and her son with Community Fundraiser Sarah Hattersley

Maria Brown and her son with Community Fundraiser Sarah Hattersley

As well as helping to raise awareness of Cerebra and the work we do, Maria has recently raised a fantastic £1,570 through a racing event that she held, something that she is incredibly proud of and is hoping to build upon in the coming years.

In 2015 Maria will be competing with her own Mighty Mini with a view of contesting the championship, and will at the same time be hoping to raise as much awareness of Cerebral Palsy as possible.

The Mighty Minis championship enjoys an abundance of media interest through radio, national TV, local and national newspapers, Youtube, and other web based channels. Mighty Minis has its own program on Freeview television which will air every race in 2015. The championship organisers have also offered to have the press spot light on Maria and her project during the season.

More information about Mighty Minis Racing can be found at www.mightyminis.co.uk.

Minimising the effects of additional learning needs: Part 3

education3
The third 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 information about 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 third part in a series of four articles about the support for this larger group of children. Each article deals with a common worry parents have about their child’s education when they have special or additional needs.

You can read the other parts here: Part 1 and Part 2.

“My child has special / additional needs but the school does not say whether or how they are being addressed.”

In all parts of the UK, statutory codes and guidelines expect the education system to work with parents and keep them informed when a child is involved in assessment for or inclusion in SEN / AN provision.  Notwithstanding this, there are parents whose children do have these needs, yet are unaware of what is happening about them at school.
In some cases this could relate to a concern, brought out in particular by the new SEND Code in England, about disadvantage brought on by the “labelling” of children as needing SEN / AN provision.

If a teacher and school are putting in techniques and measures to give a child extra support, they may describe what they are doing without mentioning SEN / AN.  On the other hand, the official approach in all parts of the UK is not only of overt identification of needs, collaboration and sharing of ideas between education providers and families, but also there is an emphasis, particularly in the newer systems, on collaboration and sharing with the children themselves.

An analytical approach to the needs can be split into broad areas, e.g. cognition and learning; behaviour, social and emotional development; communication and interaction; and sensory and/or physical needs (Oxfordshire County Council, 2010).  Or, a starting point might be observing what tasks the child finds difficult, and what works to tackle these.  For example, it should be possible to identify a problem with working memory and to put strategies in place for this, as inhttp://www.learning-works.org.uk/susan-gathercole-workshop-1-pdf.  Exactly when to bring in specialist analysis of any of these areas (“triggers”) would often depend on judgement.

It may be useful to know about two methods that teachers and trainers use:  the lesson plan and personalised learning.  The lesson plan analyses what the teacher would like pupils to have learned by the end of a lesson or series of lessons, what points they will put over to the pupils, varied ways of putting over the material taking account of pupils’ individual differences, and how the teacher will ensure that the pupils have learned the material.

If a pupil has additional needs / a disability, the teacher may prepare a handout or something in a different format for that pupil, in addition to any materials that are prepared for other pupils.  Other elements of preparation may include where to position various children in the room, how they will organise any group work, how they will assist all the pupils to participate, and what the dynamics might be between different pupils.  Teachers should get to know your child, how they can best learn, how to approach them and what extra help they might need.

The approach is obviously different at different levels of education – nursery, primary, secondary etc.  One question to think about when preparing for transitions between different levels is, how will the child be able to deal with the different approaches and expectations of the new level of education they are moving into – for example, the more varied, demanding and academic secondary setting can be hard for children with additional needs to adapt to, which can bring out difficulties that were not apparent, or not important at primary level.

In other ways they may find the new environment exciting and challenging, and begin to enjoy making more of their own choices about things.  Parents might be able to predict some of these elements in their child, and help them and their school to prepare for them.

Without a Statement / EHC / CSP there is no annual review to discuss these things, but there are still other opportunities to discuss and plan with schools and to respond to reports.  A teacher who is aware of ways in which learning can be assisted for a pupil can incorporate those into lesson plans, remembering that there are likely to be several children with disparate additional needs in a class, as well as different characteristics and learning styles among all the other pupils; and of course subject-based teachers will deal with a number of groups of children in a day / week.

Personalised learning is a way of assessing the needs of a student with SEND, forming a relationship with them, finding out how they learn, planning ways of teaching them personally, and assessing progress as the teaching progresses (University of Exeter, 2010).

References

Luke S.D. and Schwartz A., Assessment and Accommodations (Evidence for Education, Volume 2, Issue 1, 2007, Resources updated October 2010, currently http://nichcy.org/wp-content/uploads/docs/eeaccommodations.pdf, moving at the end of September to http://www.parentcenterhub.org).

See also; Ideas that work: toolkit on teaching and assessing students with disabilities,  (US Office of Special Education Programs).  Some of the recommendations on teaching techniques for children with dyslexia, in Rose, J. 2009, Identifying and teaching children and young people with dyslexia and literacy difficulties, (DCSF Publications) could be useful for other SEN / AN issues as well.  One more out of the many resources containing practical ideas iswww.teachingideas.co.uk/more/specialneeds/contents.htm.

Oxfordshire County Council 2010, Guidance for identifying and supporting young children with special educational needs for early years settings, schools and support services.

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

University of Exeter (2010), Framework for personalised learning.

Daniel Shows off Weighted Cap

???????????????????????????????Daniel O’Connor has received a weighted cap specially made by Cerebra’s own Innovation Centre.

Weighted items can be very useful for children with sensory issues and conditions such as Autism as they can help them to feel grounded. This can help to increase a child’s concentration span which has clear benefits in a school setting.

The problem that many parents encounter is that weighted items are not always readily available or are unsuitable for their child’s specific needs.

That’s where the Cerebra Innovation Centre (CIC) comes in! The team recently created a weighted hat for nine year-old Daniel O’Connor who was diagnosed with Asperger’s Syndrome in February 2014.

Daniel found it difficult to concentrate in class often becoming quite fidgety. He started using a weighted blanket which was given to him by one of his teaching assistants and would often put it on his head, saying that it “helped him concentrate”.

His mum Julie contacted Dr Ross Head at the CIC and explained the situation. It seemed that creating a weighted cap for Daniel was the best solution!

The team took one of Daniel’s own caps and stitched in a specially developed a rubber-like sheet material that is tough and flexible, yet dense enough for even the thinnest of layers to offer enough weight for the cap.

The cap has had a huge positive impact on Daniel’s life and he says that when he is wearing it, the hat helps him to concentrate, and he can think for longer.

Julie said: “I can’t thank Cerebra and Dr Ross Head enough, and as for Daniel, the cap looks a lot better on him than wearing a blanket on his head!”