Lily’s fight against pachygyria

Steph Hood with daughter Lily

Steph Hood with daughter Lily

Fifteen month-old Lily Ann Hood was diagnosed with pachygyria, a rare developmental disorder earlier this month and this has prompted mum Steph to do all she can to support her daughter as well as other children with the condition by fundraising and helping to raise awareness.

Pachygyria is the result of the abnormal migration of neutrons in the developing brain and nervous system. The condition can affect people differently but usually causes developmental and intellectual delays as well as epilepsy. The condition also causes poor muscle tone, poor muscle control, difficulties in feeding and swallowing and smaller head size.

Due to her condition, Lily also has cerebral palsy and respiratory problems along with all of the associated developmental delays. As of yet Steph and the rest of her family are not sure if Lily will ever walk, talk or be able to live a long life.

Lily has spent much of her young life in and out of Birmingham children’s hospital as well as being under many different specialists including neurologists, occupational therapists, physiotherapists, speech therapists and respiratory specialists.

Even though life can be a challenge and full of uncertainty for the Hoods, Steph is determined to help Lily live life to the fullest. She has set up Lily’s fund in order to directly help Lily and is holding a number of events to raise money. Everything raised will be split between Lily’s fund and Cerebra.

“We are raising money for Lily and other children with Pachygyria, Cerebral Palsy, respiratory problems and rare diseases. We wanted to help Cerebra to enable them to help us and other children with brain illnesses,” Steph said.

Steph has a number of events lined up over the summer, the first of which being the deceptively titled “Walk in the Park” and is encouraging everyone in her local area of Bedworth to come along and show their support.

You can keep up to date with Lily’s progress, as well as upcoming events that Steph will be organising through their Facebook group “Lily’s fight against Pachygyria”.

If you would like to donate to Lily’s fund and support their cause, you can do so through the Go Fund Me page.

Christine’s Skydive Challenge

Christine Bunting

Christine Bunting

There are lots of ways that our fundraisers help us to support children across the country but undoubtedly one of the bravest things that someone can do is skydive.

The latest person to be inducted into our very elite group of skydivers is Christine Bunting. Christine is Director of Deputyships at Hyphen Law, a firm who has a long standing relationship with Cerebra, having sponsored last year’s Cerebra annual research conference.

The firm has also helped to raise funds for Cerebra on many occasions, a tradition that Christine is proudly upholding.

“I am passionate about the work that Cerebra do and want to raise as much as I can to help purchase equipment for a special child in need,” Christine said.

Christine will be making the 15,000 ft jump on 13th June and is hoping to raise £4,000 for us through the challenge.

If you would like to support her, you can do so through her Just Giving page.

Cerebra supports action for brain injury week

Stop watchCerebra are supporting Headway’s Action for Brain Injury Week which is going on from 18th – 24th May 2015 and aims to raise awareness of acquired brain injuries.

As part of ABI week, Headway have compiled statistics of hospital admissions in the UK related to non-superficial head injuries, strokes, brain tumours, encephalitis, and a variety of additional conditions.

One of the most alarming findings that were uncovered by the study is that there were 348,934 UK admissions to hospital with acquired brain injury in 2013-14. This equates to 566 admissions per 100,000 of the population.

Further findings from the study including an infographic can be found here.

You can follow updates throughout the week on Twitter using the hashtag #ABIWeek.

Competition offers the chance of a new garden for Ellie Mae

Ellie Mae in her garden

Ellie Mae’s garden is in need of a makeover!

Website MyBuilder.com have launched a search to find Britain’s Worst Garden and will be rewarding one lucky winner with a £1,000 garden makeover.

The competition was launched just one week ago and has already attracted well over 100 entries from people across the country who could benefit from having a garden makeover.

Nicola Machin from Willenhall is one homeowner hoping to win the prize to transform her garden and make it much easier for the wheelchair of her young daughter Ellie Mae.

Ellie Mae is living with cerebral palsy, hydrocephalus and epilepsy and loves nothing more in life than gardening. Winning this competition would have a truly life changing impact on Ellie Mae and the whole family.

Having access to a garden that is fit for purpose can have huge benefits for children with neurological conditions. It gives them a place to play like any other child in a safe and stimulating environment.

Entries are currently available to vote for on MyBuilder.comNicola and Ellie Mae would really appreciate your vote. The twelve entries with the most votes will be shortlisted and with voting closing 27th May. MyBuilder will then select the winner from the 12 finalists.

2013’s winner, stroke victim Jon Mason describes his garden transformation as life changing. His recommendation for this year’s entrants? Just enter! “I’ve never won anything before, so if I can win, anyone can”. He advises everyone to “encourage friends to share and vote for them” and hopes it has a similar impact for this year’s winner.

If your garden is in need of a makeover, or if you would like to nominate someone to have their garden transformed, you can also still enter here. Entries close on 20th May.

Events – Summer 2015

Kidz South
4 June 2015, Kidz South, Reading.
Free exhibition and presentations.

The Autism Show 2015
London 12 to 13 June; Birmingham 19 to 20 June; and Manchester, 26 to 27 June.
Showcasing the latest information, products and services. Includes talks, and one-to-one advice sessions. Tickets are at a reduced rate if booked in advance. (National Autistic Society).

Towards a Positive Future
18 June, London EC4.
Conference with speakers from therapeutic, legal and educational fields, Parents, £30. (Janet O’Keefe).

ADHD: early interventions and outcomes
Two days, 22-23 June, Leyland, Lancs.
Parents’ tickets, £45 for one day, £72 for both days. (ADDISS).

Move Forward
Free youth club for 13 to 18 year olds with Aspergers syndrome or high-functioning autism. Last Thursday of every month, Edgbaston 7.30pm-9.00pm, (Family Support section of Autism West Midlands. Booking required). The same organisation is also providing summer holiday activities at Belle Vue Youth Club, Shrewsbury, 22nd July to 27th August (Wednesdays and Thursdays 11am-4pm, £7.50 per session). There is also autism-friendly football coaching at Aston Football club, £2 per session, booking not necessary, 6.00pm to 7.00pm every Monday.

Autism West Midlands Activities
Among other activities for spring and summer, Autism West Midlands list parents’ lunches, Wednesbury 20 May, 17 June and 15 July, 12noon to 2pm (booking required); coffee mornings at Shrewsbury, Bridgenorth, Birmingham and Acocks Green (no booking); and advice sessions at Northfield and Birmingham.

Afasic Cymru free advocates training
Training for parents, carers and any other advocates of children and young people with speech, language and communication needs.  One three-hour session.  Sessions start in May 2015.

The art of decision-making

Little boy choosing foodOne of the skills that parents discover a need for is that of making good decisions, sometimes about crucial matters in the life of a child.  Some people find this easier than others.  When the art of decision-making is broken down into elements, the process of reasoning is one of them.  On our helpline and in meetings, we are often given the privilege of taking part in a parent’s reasoning process through active and, ideally, informed listening that enables a person to think something through without attempting to make the decision for them.

So what is reasoning?

A point to start from is that reasoning is always based on facts that are known or assumed.  There is always a sense that more intelligence is probably out there.  It is safe to say that when a scientific finding is announced in the news, someone will add that “more research is needed”.  Where the brain is concerned, we definitely do not know everything yet about how it works.  Where children are concerned, parents often have to make decisions based on information that is not complete but is the best available at the time.  If information is “partial” that can mean I am in possession of some of the facts but not all of them, as in “We partially know”.  Or it can mean that I am biased in favour of someone or something (“I’m partial to a cup of coffee”).  Both meanings may apply to someone involved in a decision.

In an effort to make sure they know everything necessary to make a good decision, parents are likely to seek out skilful people (such as professionals in particular fields), trusting them to guide the decision-making, and/or as much information as can be found.  Sometimes a good decision will come clear after this.  At other times there is too little or too much advice and information, some of which conflicts.  In some cases there is pressure as well from other people who believe they already know best.

What if after carefully thinking out what decision to make, someone else involved comes to a different conclusion about the decision to be made?  Why could this be?  One answer could be that they are reasoning from a different starting-point.  Another possibility is that they have used a different reasoning process.  This is not always obvious at first.  In a recent example, a professional told a parent that local services would not be able to provide a piece of equipment for her child because they would not be able to fund it and the assessed need could be met with something much cheaper.  This led her to do some research to identify another possible source of funding.  However then the same professional discouraged her from applying for it because he thought the child should not have the equipment.  The missing link that she did not know about was probably that local funding decisions were based on equipment being deemed appropriate, as well as whether they could afford it.

Decision Theory

Because decision-making can have important consequences, there is a varied field of study with a number of academic journals about decision-making, particularly with partial information.  Decision Theory applies to any situation where a person or group is deciding with “goal directed behaviour in the presence of options” (Hansen S. 1994/2005).  It highlights some common pitfalls.

For example, it is possible to spend a lot of time gathering information about a question, and working out how to achieve a goal, without making much effort on identifying and making decisions related to it that may be important.  A related pitfall would be to jump into making a decision without having enough information or thinking out how to achieve the goal.

Decision Theory comes up with some inventive ways of making decisions that can be useful for standing back from an issue slightly and seeing it from a different angle.  Hansen (1994/2005) gives the example of choosing one of three soups in a supermarket.  He likes can A better than (“>”) can B; can B > can C; and can A > can C; so he chooses can A.  In doing so, though, he first has to decide what he likes best about them.  Is it the taste, or is it the price?  A further mathematical concept is “greater/less than or equal to”, or “≥/≤”, expressed in Decision Theory as “at least as good as / not at least as good as”.  It is also possible to not have a preference between two or more of the options available, and as might be expected, the Theory goes on to further layers of complexity.

Another way to aid decision-making is to assign points, say out of 20, so he gives soup can A 15 points, B 13 points and C 7 points. Most of us will make choices about soup without thinking much about it, and if we choose the wrong one it does not matter very much. However, it does when real choices for a child are substituted for “a can of soup” (“three nurseries”, “three transition options”, and so on).

Decisions also involve background information, such as circumstances that the decision-maker cannot alter, and/or are uncertain. This may lead to a decision to take different options depending on different scenarios, or how important those are.  An Example:

 Weather is bad Weather is good
Join coach trip to the beach With friends but cold and wet Enjoy day on beach with friends
 Do not join trip to the beach Stay dry but no day out No trip but do something else

Depending on how you rate these outcomes, you might assign scores out of 20, such as:

Weather is bad Weather is good Decision
Join coach trip to the beach With friends but cold and wet, 5 Enjoy day on the beach with friends, 18 18+5 = 23
 Do not join coach trip to the beach Stay dry but no day out, 7 No trip but something else, 15 7+15= 22

So if I were making this decision for myself, I would decide to join the coach trip despite the unknown weather.  However, if I was worried about the effect on a child of possibly getting cold and wet, I might give a lower score to that option, making the decision go the other way. If there are as few options and possibilities as this, it is easy to make such a decision without drawing a table and assigning scores to it. However, if there are many options and possibilities, such a table could help to clarify the decision considerably (or apply “defuzzification”, as it is called).

At the same time, the Theory has its limitations. Personnel in institutions using it (possibly without knowing it) will try to make decisions on achieving a goal that they are asked / expected to achieve. Families on the other hand, may wish to go outside of those limitations and include the option, “should we aim for this goal at all?”  People may also want to include different factors, for example a family arguing for a particular respite facility may see the suitability of various possible facilities for their child as the most important factor. If they go to see their MP about a resulting disagreement with services, the MP may see the collective effect on all the disabled children in the area as most important. How many relevant factors are taken into consideration is referred to in the Theory as “preference completeness”.

Logic

Another, much older field of study is of Logic. Again, there are more formal ways of setting out Logic in order to stand back slightly from a decision process if it is hard to focus on because it is, for instance, emotional. This is another complex field, but just to say that it brings to light other common pitfalls that can affect decision-making.

Some of these occur with media headlines and news summaries, which would not be good for making decisions without going further into them to find out what the facts really are. A recent headline, for example, was “Does education affect mental health?” (NetDoctor 2015), going on to ask “Does the standard of a person’s education influence their mental health?” and a quick look at the article below that would lead to the conclusion that surprisingly no, it does not. A slower look reveals that this finding does not directly relate to what goes on in the classroom but is more about the levels and types of education people receive, for example finishing after school, further / higher education, or beyond (Stewart-Brown S. 2015), and relates to one finding among others.

Another pitfall is to take information that is accurate in itself, but then to apply it too readily, in formal language something like “Children with condition A have symptoms X+Y, therefore all children with symptoms X+Y must have condition A”. I have seen not only individuals but also organisations make this logical error, which again relates to incomplete knowledge.

Tips for staying on top of it

It is easy to feel daunted by a lot of data and complications when trying to make a decision. These tips should help to focus on what is important and to make the process feel more manageable.

  • Keep referring back to the bottom line, meaning what you are aiming for and what the essentials are.
  • Have a good basis to start from, knowing that the facts, such as you can determine them, are sound. If claims are made in news sources, delve deeper into where the findings come from and how these relate to other findings.
  • Question others involved, to find out what the basis is for their conclusions, including the children themselves, if possible.
  • A good listener can be a great help.

References

Hansen S. 1994/2005, Decision Theory:  a brief introduction. Royal Institute of Technology, Stockholm.

NetDoctor health news 26 March 2015, Does Education Affect Mental Health?

Stewart-Brown S. et al. 19 March 2015, Socioeconomic gradients and mental health: implications for public health.  British Journal of Psychiatry DOI: 10.1192/bjp.bp.114.147280.

New Legislation – May 2015

All legislation can be found at: www.legislation.gov.uk/.

SI 2015/381, The Education Act 2002 (Commencement No. 15) (Wales) Order 2015.
From 27 February 2015, gives powers to facilitate innovative educational projects in Wales.

2015 No. 213, The Time Off to Attend Adoption Appointments (Prospective Adopters) Regulations (Northern Ireland) 2015.
From 5 April 2015, extends rights to time off for foster parents.

2015 No. 195, The Civil Legal Services (General) Regulations (Northern Ireland) 2015.
From 1 April 2015, amends the qualifications for receiving, or no longer receiving these services.

2015 No. 197, The Civil Legal Services (Appeal) Regulations (Northern Ireland) 2015.
From 1 April, provides for appeals to be made to a panel, e.g. about a decision not to fund civil legal services for an individual. (2015 No. 198, The Civil Legal Services (Costs) Regulations (Northern Ireland) 2015 and 2015 No. 199, The Civil Legal Services (Cost Protection) Regulations (Northern Ireland) 2015 set out how costing decisions are made.)

2015 No. 179 (C. 29), The Community Care and Health (Scotland) Act 2002 (Commencement No. 4) Order 2015.
Provides for all of section 5 of the Community Care and Health (Scotland) Act 2002 to come into effect, partly from 11 May and the rest from 24 June 2015. This affects placements of people from within Scotland who need residential care and/or nursing provision outside of Scotland.

2015 No. 225, The Police and Criminal Evidence (Northern Ireland) Order 1989 (Codes of Practice) Order 2015.
From 1 June 2015, new codes include management of situations encountered by young people, e.g. being taken into detention and questioned.

Dental care for very sensitive children

dentistMost children with additional needs can learn to look after their teeth or let someone do it for them, and can attend a regular dentist. How well that goes depends partly upon personalities and the atmosphere at the surgery. Other parents may be able to recommend a dentist who is successful with children who have additional needs and/or are particularly nervous, and who also gives helpful ongoing advice.

Brushing teeth at home, and teaching the child to do it, can be a particular challenge with the autistic spectrum. Helpful hints from another parent (also about cutting of hair and nails) can be found at Autism help for you. Related advice on teaching self-help skills is available from the National Autistic Society. The charity Scope publishes a factsheet with suggestions for helping children with additional dental issues at/from home. These include adapting toothbrushes to make them easier to use; help with the costs of dental treatment; how and where to find an accessible dental surgery; and what information the dentist will need to know. (Scope, Cerebral Palsy section 6: dental care).

Strategies for children who do not understand what is going on at the dentist and/or are hypersensitive to touch around their mouths, might include some preparation in advance for both child and dentist. For example, it might be useful to get dental records to take to any new dentist. Some children may benefit from play activities to rehearse aspects of the visit in advance, or to go through a book such as “Topsy and Tim go to the dentist” by Jean Adamson (available from Cerebra’s postal lending library, no.C0036).

If it is very difficult or impossible to take a child to the dentist, Community dental services may help, and/or special dentistry could be the answer.

Special dentistry

Special dentistry owes its existence in the UK to Dr Janice Fiske (Fiske, 2003) and others who have worked since the 1980s to raise awareness of particular dental care needs and to build services for people with them. They recognised that in addition to fears and difficulties with actually being at the dentist, children with cerebral palsy, seizures and other conditions encounter issues such as less control of the jaw and mouth, greater difficulty with cleaning their teeth, greater risk for tooth decay, extra gum growth, upper and lower teeth that do not meet (“malocclusion”), tooth protrusion, swallowing difficulties, reflux, strong gag reflexes and a shortage of enamel and dentin in their teeth (Stanford, 2000).

In view of this kind of issue, Special Care Dentistry is a further qualification that dentists can take. Their additional studies include:

  • the nature and effects of different disabilities, conditions and states of health;
  • behavioural issues and management, and dealing with extreme fear;
  • quality of life issues;
  • communication and treatment planning;
  • further study of pain elimination; and
  • medical emergencies.

As well as among individual dentists working in the community, there will be someone qualified in this way in a hospital where there is a dental service. Referrals can be from a doctor or another dentist, but are not always needed. More details: British Dental Health Foundation, tel: 0845 063 1188.

Getting to see a specialist dentist is not necessarily straightforward. This account by a parent illustrates the heartache and complications that can be caused by “gatekeeping” systems that do not work well:

“X. hated having his teeth brushed, and going to the dentist. He needed a specialist dentist. The social worker who did the assessment seemed not to understand this. The Early Bird centre (National Autistic Society) that he attended found a specialist dentist who said that a GP referral was needed, but the GP refused and said try the paediatrician. A lady at the dental service suggested a local hospital, where he got an appointment. He had 5 teeth removed and 3 crowns. His teeth are now good.”

The Healthcare Travel Costs Scheme (HTCS) covers some services that regular dentists, as well as doctors can refer patients on to for more specialist attention. More details: Healthcare Travel Costs Scheme: instructions and guidance for the NHS, (Dept of Health). Some dentists can make home visits.

If a child may need sedation in hospital to access dental care, PALS (Patient Advice and Liaison Service) will have more information if the hospital has one, or Action for Sick Children.

References and further resources

The British Dental Health Foundation provides independent advice on all aspects of dental health including information on fear management, treatment options and preventative care.

The British Society for Disability and Oral Health publishes information about finding a primary care / community dental service, including special care dentistry, and about accessing dental care where this is difficult.

Fiske J. et al. 2003. A Case of Need: proposal for a specialty in special care dentistry. Oxford. Joint Advisory Committee for Special Care Dentistry.

The National Autistic Society publishes factsheets about dental care and autism.

Stanford T.W. 2000. Cerebral palsy and dentistry: a brief review. Texas, Baylor College of Dentistry. (See Caring for cerebral palsy: dental care).

Resources – May 2015

ResourcesOur monthly roundup of useful resources for families of children with additional needs.

Holiday Grants
List of some of the sources of holiday grants for children with disabilities.

The Prince’s Foundation for Children and the Arts
Listing of shows for children. These include “Relaxed performances” geared to children with special needs. Others may be found by putting the term “relaxed performance” into a search engine.

Getting Diagnosed
A factsheet about the steps to take if you believe a child would benefit from having a diagnosis for their condition (in this case, Tourette syndrome), (Tourettes Action).

NICE evidence search
To find national guidelines, standards and other information on health and social care topics.

LiteracyActionNet
Includes guidance on aspects of supporting literacy and well-being at home, transition and other topics, (JJ Charitable Trust and others).

Premier Reading Stars
“Premier Reading Stars” is a collection of literacy resources based on Premier League football. (National Literacy Trust).

“What you need to know”
A webinar about the new SEN framework in England, (Douglas Silas solicitors).

Parent carer forum handbook
A how-to guide for people setting up a forum, (Contact a Family).

Disability Matters
Free e-learning materials designed for the UK workforce, to inform fears, ideas and attitudes towards disability and disabled children and young people, (by a consortium led by the Royal College of Paediatrics and Child Health).

What human rights do for disability
A number of examples from case law, where cases brought by or for people with disabilities have been upheld,  (RightsInfo).

Getting it right for every child
Getting it right for every child (GIRFEC) is a new approach to services for children in Scotland aged 0 to 18 years.  (Scottish Government).

Help and support for disabled young people to find and stay in work
New guide from the Dept for Work and Pensions.

PIP postcode map
Updated map showing postcode areas for PIP assessment providers and reassessment of existing DLA claimants (aged 16+. Dept for Work and Pensions).

Finley defies the odds

Finley Lamb

Finley Lamb

When five year old Finley Lamb was born, doctors feared he would never be able to walk or talk properly.

Finley was born with a rare condition of the brain called periventricular nodular heterotopia (PVNH) which means that some of his grey matter is in the wrong place.

Doctors warned Dad Dan and Mum Sara that as well as being unable to walk and talk, Finley would also have a 90 per cent chance of developing epilepsy.

Things initially looked difficult for Finley but he has gone from strength to strength since starting a program that was specially designed for him and is now attending a mainstream school in Liverpool.

Sara said: “We’re not quite there yet but I feel like we’re over the hump.

“He absolutely loves school and I think he thinks he owns it! Every time he sees the headmaster he tells him a joke. He does two full days and then the other three days he goes in for the last two hours.

“He’s doing absolutely great. He got 19 out of 20 on his last phonics test and he’s keeping up really well on all his work.

“He had such a quiet little voice and now he’s got a normal voice – he can shout, so I don’t know how pleased I should be about that!”

Money was raised by generous members of the public to send Finley to a specialist centre in Philadelphia which helped his progress. He was given a series of special exercises which were intended to stimulate his brain, taking him painstakingly through the stages of development from crawling right up to walking. Finley now walks to school with mum every day, a round trip of two miles!

Sara is extremely pleased with his progress and notes that Finley is now fearless in all aspects if his life. She said: “I call him Daring Dexter now and he’ll tell me he’s not scared of things.

“At Christmas he went on a merry-go-round – he said “Mummy, I’m not scared of rides any more. We went to Chester Zoo and he was shouting “yahoo!” as he went down the slide.

“The school yard was too busy for him when he started but in the last fortnight he’s been playing in the yard with the other kids.”

“He said he wanted to play football, which he never did before. It’s a whole new world for him.”

Cerebra wishes Finley and his family all the best for the future. If your child has a similar condition, Cerebra may be able to help. You can find out the ways we are able to give support here.