Autism: Airway abnormality

A researcher has found an abnormality in the airways of children with autism that she says may be the first anatomical marker for the neurodevelopmental disorder.

While examining children with autism who came in for a persistent cough, Dr. Barbara Stewart used a bronchoscope -- which can see down into the windpipe and the airways that branch into the lungs -- and noticed something different about those branches.

In a typical lung, the windpipe, or trachea, branches into two main stems. From there, airways branch off the stems much like tree branches in a random, asymmetrical pattern, said Stewart, a pediatric pulmonologist at Nemours Children's Clinic in Pensacola, Fla.

But in the autistic children, those branches were instead doubled up and symmetrical. And the branches were smaller -- whereas in a normal lung you might have one large branch jutting off, in the autistic child, she'd see two, smaller branches instead.

Stewart went back and looked at the bronchoscopy results of 49 children with autism spectrum disorder and more than 300 kids without the condition. She found that all of the kids with autism had what she calls symmetrical "doublets" in their airways, while none of the normally developing kids did.

"I don't know what the significance of that is … But it looks like they have more of everything," Stewart said, adding that all of the autistic children had normal lung function and the anatomical difference may or may not explain the cough.

The research is scheduled to be presented Monday at CHEST 2011, the annual meeting of the American College of Chest Physicians, in Honolulu. Because this study was presented at a medical meeting, the data and conclusions should be viewed as preliminary until published in a peer-reviewed journal.

Dr. Daniel Coury, medical director for the Autism Treatment Network of Autism Speaks, said he wasn't sure what to make of the findings, since there aren't reports of children with autism having any particular issues with their lungs.

And yet, he said the findings warrant more research, particularly whether there might be some gene or region of a chromosome that plays a role in both brain and lung development and is associated with autism.

"I've never heard of anything like this before and certainly, your first thought is, 'If autism is a neurodevelopmental disorder, why would we be finding problems in the lungs?'" Coury said. "The fact is we are thinking more and more that autism is a whole-body disorder.

We are seeing some people with autism that have lower gastrointestinal problems and immune problems. So, once you toss aside the idea that this is strictly a brain problem and think of it as a whole-body problem, this becomes possible."

Airway structures begin to develop in utero during the first trimester and continue until about 20 weeks, Stewart noted. The difference in lung structure among children with autism spectrum disorder was difficult to spot at first, she added.

Dyslexia: Multisensory spelling ideas - YouTube

This video focuses on words with the i-e sound: like, inside, tie, white, night, right, eyes, fly, why, find.

How to help you dyslexic or struggling child with multisensory spelling at home. It's great fun and they will remeber more too.

Visit the Let Me Learn website for more information.

Children with diabetes -Healthy halloween advice

While there are challenges, Halloween can still be fun for children with diabetes, an expert says

"They can enjoy Halloween and enjoy some of the sweets the holiday offers -- within reason," Dr. Kenneth McCormick, a pediatric endocrinologist and senior scientist at the University of Alabama at Birmingham Comprehensive Diabetes Center, said in a university news release.

"We give parents and kids three options and let them decide how they want to handle Halloween and the sweets that come with it," he explained.

The first option: Count the carbohydrates. 
A child tracks how many carbohydrates he or she consumes and takes, for example, one unit of insulin for every 15 to 20 grams of carbs.

"This is an easy option for kids on an insulin pump because they can just dial in an extra dose of insulin to compensate for what they are about to eat, but for kids that take shots, this could prove to be more difficult or inconvenient, especially if they have to go to the school nurse for an extra dose," McCormick said.

The second option: Exchange candy for other goodies.
"Parents can trade the child a gift, money or low-carb snack for their candy. Parents also can provide a substitute snack for their child if a Halloween party at school is an issue," McCormick said.

"We have been advising parents to do this for many, many years, and it is a solution that continues to work."

The third option: Save Halloween treats for an after-dinner dessert.
"By incorporating a sugary treat into mealtime, when a child would normally get a dose of insulin, it eliminates the need for adding doses to their regimen," McCormick said.

We wish you and your children a very merry, safe and enjoyable festival!

Learning Difficulties - Video

School Children: Less Sleep Leads to lower grades

Research from the Autonomous University of Barcelona has revealed that children aged six to seven who stay up late and sleep less than nine hours a night suffer academically.
Psychologist Ramon Cladellas, who helped carry out the survey into the sleeping patterns of 142 schoolchildren, said:

“Most children sleep less than is recommended, which hinders their intellectual development because lack of sleep cannot be recovered.

"More than nine hours sleep and a nightly routine favours academic performance with pupils that sleep eight or nine hours performing worse than those who sleep nine or eleven hours."

Parents of the 65 boys and 77 girls from different schools were all asked to fill out a questionnaire, concerning their children's habits and number of hours slept per night.

The AUB team found that children who lost out on sleep had reduced communication and grammar skills, while those with irregular sleep patterns suffered poor memory and motivation.

The researchers suggested that parents attend prevention programmes to become more aware of the risks of developing poor sleeping patterns at a young age.

Dyspraxia: What is it? - Dyspraxia Foundation

Click on the image to go to the Dyspraxia Foundation website

Multiple Anaesthesia linked to learning disabilities (LD)

Children who undergo multiple operations under general anaesthetic before the age of two have a greater chance of developing learning disabilities (LD), a US study has claimed.

Researchers at the Mayo Clinic in Rochester, Minnesota, found that children who were exposed more than once to anaesthesia before their second birthday were about three times more likely to develop speech and language problems in later life.

The study, published in the November issue of the US journal Pediatrics examined the medical and educational records of 1,050 children born between 1976 and 1982 in a single school district in Rochester.

Of the children in the cohort, 350 underwent surgeries with general anaesthesia before their second birthday and were matched with 700 children who did not. Of those who did have surgery, 286 had only one surgery and 64 had more than one. Among those children who had multiple surgeries, 36.6 per cent developed a learning disability later in life. Of those with just one surgery, 23.6 per cent developed a learning disability, compared to 21.2% of the children who never had surgery or anaesthesia before age two.

However, researchers saw no increase in behaviour disorders among children with multiple surgeries.

Lead author, Mayo Clinic paediatric anaesthesiologist Randall Flick MD, advised caution, saying that it should not put parents off having surgery for their children. “Our advice to parents considering surgery for a child under age two is to speak with your child's physician.

“In general, this study should not alter decision-making related to surgery in young children. We do not yet have sufficient information to prompt a change in practice and want to avoid problems that may occur as a result of delaying needed procedures. For example, delaying ear surgery for children with repeated ear infections might cause hearing problems that could create learning difficulties later in school.”

Asthma: Children admitted to A&E on the rise?

Nearly 5,000 children in the UK were admitted to intensive care with respiratory problems last year, a 67 per cent rise since 2005.

More worrying is the fact that the mortality rate of these patients more than double that of America and Australia.

Dr Roger Parslow, who conducted the survey on behalf of PICANet (Pediatric Intensive Care Audit Network) said:"Our work on asthma shows it is important for clinical audits, to work with doctors and nurses to help them provide the best quality of care to children in paediatric intensive care units though it is still extremely rare for children to die in this type of specialist care."

The report which looked at over 50,000 admissions across Britain showed that despite overall mortality rates in intensive care falling from 4.5 to 3.8 per cent in the last two years, the number of children who do not survive having required help with their breathing has now risen to 4.7 per cent.

"It is concerning that the death rate in England and Wales for asthma admissions to paediatric intensive care units is relatively high compared to other developed countries," said Dr Andrew Durward of Evelina's Children's Hospital in London, whose team will now look into the reasons why it so much higher than the two per cent average of other major nations.

One of the potential causes may have also been identified by the report which showed that two-thirds of paediatric intensive care units have less than the recommended number of nurses.

Another of the researchers, Professor Elizabeth Draper, said: "Following the revision of these [qualified nursing staff] standards in line with the Royal College of Nursing, fewer than 40 per cent of units achieve the required levels."

Only 13 out of 34 units surveyed had at least one qualified nurse for every two patients, a situation which the Royal College of Nursing's executive director, Janet Davies, believes is "deeply worrying" and something that "urgently needs adressing."

A National Review of Asthma Deaths has now been commissioned by the Health Quality Improvement Partnership (HQIP).

The full PICANet report is available here.

Dyslexia: Are there Bad Treatments? - A Speech Language Video

Dyslexia : Bad Treatments for Dyslexia - Speech Language Videos

When will we understand Autism Spectrum Disorders? | UK Royal Society

It is agonising for a parent, troubling for a clinician, and puzzling for a researcher when a young child seems oblivious to people, is fixated on spinning objects, and shows no sign of communicating.

An adult who finds their own inner states opaque, consistently misjudges social situations, and is helpless in the face of any change from preferred routine, is no less of a mystery. When will we understand autism spectrum disorders?

This talk presents a cognitive neuroscience perspective on what might be some of the obstacles standing in the way of major scientific breakthroughs in the science of autism.

What we do know, and what we need to know, about individuals with autism spectrum disorders will be discussed.

Francesca Happé is Professor of Cognitive Neuroscience at the MRC SGDP Centre at the Institute of Psychiatry, King’s College London. Her research centres on autism spectrum conditions.

As well as cognitive methods, her research involves functional imaging studies, exploration of acquired brain lesions and, most recently, behaviour genetic methods.

She is the author of numerous research papers, and a book on autism for general readers. She won the Telegraph’s Young Science Writer award, and has taken part in many documentaries, as well as being the subject of a Channel 4 programme for schools. S

he was a Royal Institution 'Scientists for the New Century’ Lecturer, and has received the British Psychological Society Spearman Medal, King’s College London Supervisory Excellence Award, and the Experimental Psychology Society Prize.

Admission free – no ticket or advance booking required. Doors open at 5.45pm and seats will be allocated on a first-come-first-served basis.

This event will be broadcast live on the web at royalsociety.org/live and available to view on demand within 48 hours of delivery.

Visit our video archive at royalsociety.tv

This Royal Society Rosalind Franklin Award and Lecture is awarded annually to support the promotion of women in science, technology, engineering and mathematics to an individual who has made an outstanding contribution to any area of science, technology, engineering or mathematics (STEM).

The recipient of the award is expected to spend a proportion of the grant on implementing a project to raise the profile of women in STEM in their host institution and/or field of expertise in the UK. The award is supported by the Department of Business, Innovation and Skills.

Homework: The Do's and Don'ts cont'd

In September we posted a piece on helping your children with their Homework. Here is more useful information on that task.

Toddlers Learn Better When Having Fun, Joking and Imagining

Parents who joke and pretend with their children are giving them a head start in life, researchers at Stirling University have found.

The study suggested that both activities are important in building social and life skills children need.

It also showed that pretending and joking are two very different things and that children as young as two can tell them apart.

The research will be presented at an event in Stirling on Saturday.

The work was funded by the Economic and Social Research Council (ESRC) and will form part of its annual Festival of Social Science.

Dr Elena Hoicka, of the university's Baby and Toddler Lab, said that children as young as 14 months can tell the difference between joking and pretending.

"Young children can pretend to learn how to do things later on"


Dr Elena Hoicka Baby and Toddler Lab

Dr Hoicka said that by reading facial and verbal cues they develops skills they will use into adulthood.

She said: "In later life with joking it's important for instance for attracting a mate, so women find funny men more attractive.

"It's important for making friends, so people who share the same sense of humour, they're going to have social bonds with each other.

"It's also important for coping with stress, so certain types of humour, seeing the funny things in life, that leads to people who can cope better, they are less depressed and so on.

"Pretending's a bit different, so early on it's suggested that young children can pretend to learn how to do things later on.

"So maybe they can pretend to cook then they learn how to cook, they can pretend to drive a car, that gives them skills to learn how to drive later."

Speechless: Arcola Theatre London

An extraordinary story of two girls struggle to be heard

Shared Experience (Bronte, After Mrs Rochester, Jane Eyre) presents the astonishing story of identical twins June and Jennifer Gibbons.

Refusing to speak to adults, the twins communicate in their own private language, their only relationship being an intense and turbulent bond with each other. 

Speechless is a powerful portrayal of the twins secret world and their struggle to find a voice against all odds.

The winner of a Fringe First Award 2010, Speechless is directed and co-written by Artistic Director of Shared Experience, Polly Teale. 

Celebrated for her potent visual and imaginative style, Polly won the Evening Standard Award for Best Director for her own play After Mrs Rochester, which also won the Time Out Award for Best West End Production.

Arcola Theatre London

BBC Radio 4: Woman's Hour Podcast; dyslexia - can it be an advatage

Can dyslexia sometimes be an advantage? Presented by Jane Garvey.

Click on the link to hear the Radio 4 podcast
.

Mother’s antibody attack linked to autism

"Now we not only have a marker, but we are starting to understand the actual mechanisms of what causes autism. 

These findings can greatly enhance our understanding of the origins of some cases of autism and may directly lead to screening tests and treatments to prevent it," says Daniel B. Campbell, one of the study's principal investigators.

The research is the first to demonstrate a genetic mechanism at play in the development of autism, raising the possibility of a genetic test for women at risk, according to the study published online in the journal Translational Psychiatry.

“Our study gives strong support for the idea that, in at least some cases, autism results from maternal immunity gone overboard,” says Judy Van de Water, professor of internal medicine at the University of California, Davis, who is affiliated with the MIND Institute.

“This is the first time that a genetic factor known to be important in autism and its effects have been demonstrated.”

For the study, Van de Water and colleagues examined the action of the MET gene, which has a known association with autism, among 200 mothers of children with autism and 150 mothers of typically developing children enrolled in the Northern California-based Childhood Autism Risks from Genetics and the Environment (CHARGE) Study.

All of the study participants were between 2 and 5 years of age at the time of study enrollment, lived with one biological parent, and spoke either English or Spanish.

The researchers found that the C-allele of the MET gene is more common in mothers with several immunologic abnormalities that might contribute to the development of autism.  Analysis of the MET C-allele is a method of determining susceptibility for immune dysregulation in the mothers.

One abnormality they attributed to the MET C-allele is the presence of antibodies against fetal brain proteins in the blood of the mothers.

These brain-attacking antibodies occur in some mothers with an autistic child, but are not found in mothers of typically developing children.

It is believed that these antibodies somehow injure the developing brain of the fetus, and in some instances may cause autism.

Researchers do not yet know when or how the antibodies are formed, or precisely what happens to the brain tissue exposed to them, but based on a collaborative paper with Loren Martin at Azuza Pacific University, they appear to have pathologic significance, or a functional effect on brain development, changing the way the brain develops.

Van de Water and her group are still working on the precise effect of these maternal antibodies on the developing brain.

MET protein levels were also found to be reduced in cells from mothers with one C-allele and one normal allele, and were even lower in those with two C-alleles. Lower MET protein on the cell surface may increase susceptibility to a more intense and prolonged immune response when the cells are activated, like exposure to a bacteria or virus.

This, in turn, could make these individuals more prone to forming antibodies against “self” proteins, such as those found in the fetal brain.

ADHD: Training and Support for Clinicians

Aims
The ADHD website aims to give information to clinicians including general practitioners, GPWsi's, community paediatricians and CAMHS staff on:
.
a) ADHD and related neurodevelopmental disorders;
b) Identifying the signs and symptoms of ADHD including consideration of the differential diagnoses, co-morbid disorders and associated functional difficulties;
c) Management options for children with ADHD and their families including behavioural strategies and prescribing options;
d) How to manage ongoing care and support for children with ADHD and their families including medication monitoring.
.
The information provided on the website could be used as :

1. an introductory training package for GP's with a special interest (GPWsi's) in children's mental health, in particular in ADHD, who wish to take a lead on this topic within their practice area;
2. an introductory training package for non consultant clinical staff who work in ADHD clinics run by either by Child and Adolescent Mental Health Services (CAMHS) or paediatric departments e.g. GP clinical assistants, senior nurse practitioners and junior/ middle grade medical staff. It is advised that this information is complemented by on site clinical supervision from a consultant with special expertise in ADHD.
3. training materials about ADHD for all GP's who have children and young people on their lists with this disorder and to act as a pointer to websites which may be useful to clinicians and parents. The site may be of particular interest to GP's providing ADHD monitoring enhanced services.
4. an aid for a seamless transfer of specific aspects of patient treatment from the secondary sector to general practice. Information is provided on the nature of the condition treated, the medications in question, the monitoring required and the responsibilities of the parties involved.

This website can also be utilised as a part of a PG Cert Course (30 credits at Masters Level, ‘subject to validation’) with the University of Wales, Newport. Please contact amanda.kirby@newport.ac.uk for further information.
.
The course aims are as follows:
The module will provide student knowledge in the following areas

• An understanding of the signs and symptoms of ADHD in children, adolescents and adults
• An understanding of the assessment and diagnosis of ADHD in children and adolescents
• The principles of a multi-modal treatment package for ADHD.
• The knowledge of non pharmacological interventions for ADHD
• An understanding of the pharmacological interventions for ADHD
• The understanding of issues of medication including
• Starting medication
• Switching medication and polypharmacy
• Medication monitoring
• The issues of the management of the ADHD- follow up clinics
• Consideration of ADHD in relationship to other co-morbid disorders

The Learning Outcomes are as follows:

On completion of the PG Cert module the student would:

1. Have an understanding of current knowledge and theory relating to the aetiology underpinning ADHD and related co-morbid disorders.
2. Be able to critically reflect upon the management and intervention options for supporting an individual with ADHD.
3. Demonstrate knowledge of current practices in the management of the individual with ADHD in the context of common health and educational practices and through a consideration of research undertaken in this area.
4. Demonstrate an understanding of the choices for treatment both pharmacological and non pharmacological.
5. Critically reflect upon the different factors that may impact on the individual’s difficulties at home and at school and in further education.
6. The student will gain knowledge of the management principles of running a follow up ADHD clinic.

These aims are informed by the following philosophy:

Improving access to knowledge on ADHD for the groups of clinicians above will help to combine the best of primary and secondary care for the benefit of these patients and their families.

Shared care arrangements between primary and secondary care are thought to be essential for safe, effective and efficient treatment with complex drugs such as those used in the medical treatment of ADHD.

Entry into a shared care arrangement is voluntary for all parties involved. It should be noted that clinical responsibility lies with the prescribing doctor.

GPs and other clinicians should therefore familiarise themselves with the drug treatments they are prescribing, ensure an acceptable monitoring arrangement is in place and feel confident that they can obtain appropriate specialist support when required.

Glossary of Abbreviations

• ADHD = Attention Deficit HyperactivityDisorder
• ASD = Autistic Spectrum Disorder
• CBT = Cognitive Behaviour Therapy
• CD = Conduct Disorder
• DCD = Developmental Co-ordination Disorder
• DSM-1V= Diagnostic and Statistical Manual of Mental Disorders (4th Edition)
• HKD = Hyperkinetic Disorder
• ICD-10 = International Classification of Diseases (10th version)
• IEP = Individual Education Plan
• LSA = Learning Support Assistant
• LEA = Local Education Authority
• ODD = Oppositional Defiant Disorder
• SDQ = Strengths and Difficulties Questionnaire
• SEN = Special Educational Need
• SENCO= Special Educational Needs Co-ordinator
• TCA = Tricylic antidepressant
• WISC = Wechsler Intelligence Scale for Children 

ADHD: UK NHS Guidelines (2008)

Attention deficit hyperactivity disorder: Diagnosis and management of ADHD in children, young people and adults

Description
The advice in the NICE guideline covers:

• the care, treatment and support that children, young people and adults with ADHD should be offered
• how families and carers can support people with ADHD.

It does not specifically look at:

• the treatment of children younger than 3 years
• the treatment of conditions other than ADHD.

Guidance documents

• Full guideline documents
• NICE guideline PDF format | MS Word format
• Quick reference guide PDF format
• NICE guidance written for patients and carers PDF format | MS Word format | Fformat MS Word
• CG72 Attention deficit hyperactivity disorder (ADHD): NICE guideline (web format)

Move 627: Transition - Supporting Children and Parents through life's changes

What is transition?
One definition of transition is a passage from one form, state, style, or place to another.

In the context of the young person moving from primary to secondary school he or she is not only moving place, going from primary to secondary school, but is also moving from a stage of childhood to adolescence.

He or she is passing through puberty and is undergoing major emotional and physical changes.
Read more…

The four phases of transition
The four phases of transition are

• Preparation, 
• Induction, 
• Transfer and 
• Consolidation 

Read more…

Key changes in the child
Key changes in the young person's life include pubertal changes such as physical growth and emotional upheaval.

In addition to this, changes in the brain itself have more recently been noted, specifically in one area known as the prefrontal cortex, which sits just behind the forehead.

It has been called the “CEO of the brain”, and has a major role in controlling planning, working memory, organisation, and modulating mood and impulsivity.

As the prefrontal cortex matures, adolescents are able to make more reasoned decisions and start to gain more control over their impulses. They are able to plan and determine their actions.
Read more…

This site - what it can do for you
Move 627 contains a wealth of information which may help parents, schools and health professionals to better support young people during the transition from primary to secondary school.

The site may be particularly useful to young people with ADHD and other developmental disorders. Move627 contains downloadable information, adaptable downloads and fun, interactive games. These may all help:
Read more…

To learn more about supporting parents and children with Dyslexia, Dyspraxia, DCD, ADHD, etc., be sure to visit the website of Move627 and their sister sites: Box of Ideas and www.dyscovery.info

The websites are supported by Prof. Amanda Kirby: A registered Medical Practitioner who specialises in Community Paediatrics and Psychiatry. Prof Kirby has particular interest in Dyslexia, Dyspraxia and DCD and is currently the patron of the Dyspraxia Association in New Zealand and medical advisor to the Dyspraxia Foundation in the UK and Ireland.

She is also a medical advisor to a developmental disorders clinic in Singapore, the UK Neurofibromatosis Association and is on the Royal College of General Practitioners Learning Disability Working Party.

A Box of Many Ideas: Parents' Support Website for Dyslexia, Dyspraxia and DCD

The one stop shop for 1000s of ideas, guidance and information for parents of children who suffer from Dyslexia, Dyspraxia and /or DCD. 

The website boast that it provides guidance on everything from early years to employment. Click on the pictures to visit the website or follow the links below.

Practical skills and information for parents concerning Education, schools and employment

Practical skills that parents and carers can use at home or outside school time. 

Move 627 is a website that examines the transitional stages that children go through in their lives, offering information and support.

To learn more about supporting parents and children with Dyslexia, Dyspraxia, DCD, ADHD, etc., be sure to visit the website of Move627 and their sister site: www.dyscovery.co.uk

The websites are supported by Prof. Amanda Kirby: A registered Medical Practitioner who specialises in Community Paediatrics and Psychiatry. Prof Kirby has particular interest in Dyslexia, Dyspraxia and DCD and is currently the patron of the Dyspraxia Association in New Zealand and medical advisor to the Dyspraxia Foundation in the UK and Ireland.

She is also a medical advisor to a developmental disorders clinic in Singapore, the UK Neurofibromatosis Association and is on the Royal College of General Practitioners Learning Disability Working Party.

Playing Outdoors Helps Children see further

A new analysis of recent eye health studies shows that more time spent outdoors is related to reduced rates of nearsightedness, also known as myopia, in children and adolescents.

Myopia is much more common today in the United States and many other countries than it was in the 1970s. In parts of Asia, more than 80 percent of the population is nearsighted.

The analysis suggests that more exposure to natural light and/or time spent looking at distant objects may be key factors.

The analysis was led by Dr. Justin Sherwin of the University of Cambridge.

The data included in the analysis was drawn from eight carefully selected studies on outdoor time and myopia in children and adolescents, representing 10,400 participants in total.

Dr. Sherwin’s team concluded that for each additional hour spent outdoors per week, the chance of myopia dropped by approximately two percent.

Nearsighted children spent on average 3.7 fewer hours per week outdoors than those who either had normal vision or were farsighted.

Though the reasons aren’t yet clear, the protective effect appears to result from simply being outdoors rather than performing a specific activity.

Two of the eight studies examined whether children who spent more time outdoors were also those who spent less time performing near work, such as playing computer games or studying, but no such relationship was found in either study.

The amount of time spent on near work is of interest to researchers as another potential cause for the recent uptick in nearsightedness.

“Increasing children’s outdoor time could be a simple and cost-effective measure with important benefits for their vision and general health” said Dr. Khawaja.

“If we want to make clear recommendations, however, we’ll need more precise data. Future, prospective studies will help us understand which factors, such as increased use of distance vision, reduced use of near vision, natural ultra violet light exposure or physical activity, are most important.”

The DysCovery Centre: Prof Amanda Kirby

The Dyscovery Centre  was set up over 13 years ago in response to a lack of co-ordination between health and education providing services for children and adults with developmental disorders.

During this time it has developed into a specialist and high quality service providing clinical services, undertaking research,providing consultancy services and training at all levels from awareness raising  courses to Masters degree level.

The inter-disciplinary team helps individuals with living and learning difficulties, such as Developmental Co-ordination Disorder, Dyspraxia, Dyslexia, Attention Deficit Hyperactivity Disorder and Asperger's Syndrome.

The team is led by Professor Amanda Kirby.All members of the clinical team are State Registered, qualified, experienced in learning difficulties, and adhere to professional standards and Codes of Practice.

The clinical team helps people of all ages, and takes referrals from statutory and voluntary bodies as well as directly from individuals.

The benefits of using the Dyscovery Centre include:

• Assessment by appropriate team members after consultation and information gathering, tailored to the individual.
• One-stop shop: Providing a co-ordinated approach in one place and time.
• Active research centre- up to date with latest research in the field of developmental disorders.
• Professionals who have experience working with schools, parents and adults.
• Ability to look at whole child/person. 
• Access to specialised resources and supporting information. 

The Dyscovery Centre has now moved to its permanent home on the Caerleon Campus. 

Their new address is, The Dyscovery Centre, Felthorpe House, Caerleon Campus, Lodge Road, Caerleon, Newport, NP18 3QR. 

Their telephone number has remained the same: 01633 432330
Their email address is: Amanda.kirby@newport.ac.uk
Website: www.dyscovery.org

 

Learning Difficulties: The Essay Map - Read, Write, Think

Expository writing is an increasingly important skill for elementary, middle, and high school students to master.

This interactive graphic organiser helps students develop an outline that includes an introductory statement, main ideas they want to discuss or describe, supporting details, and a conclusion that summarises the main ideas.

The tool offers multiple ways to navigate information including a graphic in the upper right-hand corner that allows students to move around the map without having to work in a linear fashion. The finished map can be saved, e-mailed, or printed.

Read more about this Essay Writing Tool here at ReadWriteThink

ADHD and Teenagers: How to Talk to Anyone! - Leil Lowndes

This book was primarily written for business users and sales staff to help them network but it is equally relevant to teenagers with ADHD, Asperger's and younger people who have difficulties understanding social skills and therefore, in forming relationships.

It can also help young people who are trying to get into more social circles and the job market.

Introducing: Amanda Kirby - Understand the difference

Professor Amanda Kirby MBBS MRCGP PhD

Professor Kirby founded The Dyscovery Centre in Cardiff in 1997.

Since that time The Centre has become internationally recognised for its work in Developmental Co-ordination Disorder (DCD) and related specific learning difficulties.

In 2006, the Dyscovery Centre became part of the School of Education at the University of Wales, Newport. In April 2007 Amanda gained a Chair in Developmental Disorders in Education at the University.

Amanda previously worked as a General Practitioner and has worked in Community Paediatrics and Psychiatry.

She has many books published in the field of specific learning difficulties, and has published Mapping SEN – a CD-based programme for schools - and '100 Ideas for Supporting Pupils with Dyspraxia and DCD' as well as academic texts.

She is very interested in the ability to transfer evidence-based research into everyday practice and has recently developed several different websites including www.adhdtraining.co.uk, www.boxofideas.org and www.spldtransitions.co.uk.

Amanda is currently the patron of the Dyspraxia Association in New Zealand and medical advisor to the Dyspraxia Foundation in the UK and Ireland.

She is also a medical advisor to a developmental disorders clinic in Singapore, the UK Neurofibromatosis Association and is on the Royal College of General Practitioners Learning Disability Working Party.

She also works with the Welsh Assembly on specific projects including a benchmarking exercise on Dyslexia and specific learning difficulties provision.

She has provided consultancy to the RAF and Football Association.

Amanda has both a professional and personal interest in DCD (Dyspraxia) and related specific learning difficulties as her middle child, her 25-year old son, has co-ordination and some attentional difficulties, and trying to address his difficulties and finding answers to problems first sparked her interest in the area.

Her research interests include the effects of nutrition on learning and behaviour, outcomes for students in further and higher education with Dyspraxia and DCD, and executive functioning in school and college students.

Recent work has continued to look at the effect of specific learning difficulties in gaining employment.

Check her for a comprehensive presentation on Supporting Learning Difficulties in Adulthood by Prof. Kirby: this presentation was given at the Understand the Difference conf. 2011

Contact Details: Amanda.kirby@newport.ac.uk - www.dyscovery.org 

Free Vision and Learning Guide - Download

Dr. Kellye Knueppel noted that what a client's daughter was experiencing was not uncommon. Letter and /or word reversal.

“From approximately age 5 to age 11, directionality concepts are developing, so reversals are normal at younger ages,” she said. 

Dr. Knueppel also shared that educators are usually taught that reversals are normal until age 8, and typically, no action is taken even if the child at ages 6 or 7 reverses things more frequently than his or her peers.

“We have tests to determine if the amount of reversals the child is doing is actually age appropriate or not,” Dr. Knueppel said. 

“If it is, we would just monitor the situation. If the reversals are more frequent than they should be, we would work on laterality and directionality concepts.”

If you notice frequent reversals, as she did with her client's daughter, consider a Functional Vision Test. 

You may find out that, as Dr. Knueppel noted, your child’s word reversals are normal.  However, if you find there is a problem, you can pursue the treatment that will allow for healthy visual development.

The Vision and Learning Guide is filled with information that can help parents and teachers determine if a child has a vision problem.

It provides an overview of how vision can impact learning, and includes:

• The Vision Quiz to help you quickly assess a child's symptoms.
• Samples of what schoolwork looks like from a person with vision problems.
• Classroom stress points and modifications to help students.
• Links to studies on the efficacy of vision therapy.

The Vision and Learning Guide provides the critical first step to determining if a child has a vision problem.

Download Your Free Vision and Learning Guide

Dyslexia: Type settings that are Bad for Dyslexia

Web accessibility doesn’t only extend to color blind users, but dyslexic users too. Dyslexia is a learning disability that impairs a person’s fluency or accuracy in being able to read, write, and spell.

We can help dyslexic users read text more fluently and accurately by understanding and avoiding the bad design practices that hurt dyslexic users.

Seeing things from their eyes can give us a better perspective on why accessible design is so important.

When dyslexic users read text, sometimes they can experience visual distortion effects.

These effects vary in degree from person to person, but they can make reading text that much harder.

Below are six bad practices that are likely to cause these visual distortion effects for dyslexic users.

These bad practices can also make reading difficult for non-dyslexic users but the effect they have on dyslexic users is much worse.

River effect

Dyslexic users may sometimes see the river effect in the text they’re reading.

This is when large gaps occur within consecutive lines of text. It can often look like a river of whitespace flowing down the page, which can make reading fluently and accurately difficult.

There are a couple bad practices that make the river effect happen.

1. Justified text

When you use justified text, you’re not only making text difficult to read for non-dyslexic users, but even more so for dyslexic users. Justified text creates large uneven spaces between letters and words.

When these spaces line up above one another, a distracting river of whitespace prominently appears.

This can cause dyslexic readers to lose their place repeatedly. You can avoid creating the river effect by using left aligned text, instead of justified text for your paragraphs.

2. Double spacing after periods

Most of us were taught to double space after periods at the end of a sentence.

This practice originates from the typewriting days of the past. Because typewriters used monospaced fonts, people thought that double spacing after periods would make the end of sentences more distinct.

However, on the web, single spacing after periods are enough because most websites use proportionally spaced fonts.

Double spacing after a period can create “rivers” within text that make it difficult for users to find the end of sentences. On the web, single spacing wins.

Blur effect

Another kind of visual distortion effect that can occur among dyslexic users is the blur effect.

This is when dyslexic readers see their text blurring or swirling or together.

This can significantly affect a dyslexic user’s reading ability, and make reading very tiring for them.

You can lessen this effect by avoiding a couple of bad practices.

3. Pure black text on a pure white background

There’s a reason the text you’re reading now is not pure black (#000000), and the background that it’s on is not pure white (#FFFFFF).

It’s because many dyslexic users are sensitive to the brightness of pure black text on a pure white background due to its high contrast.

This can cause the words to swirl or blur together. To avoid this, use a slightly off-white colour for your background, like a light gray.

You can also use a dark gray for your text instead of a pure black to cut the glare even more.

4. Long blocks of unbroken paragraphs

Long blocks of unbroken paragraphs are hard for non-dyslexic users to read, but even harder for dyslexic readers. It’s easy for dyslexic readers to lose their place with long paragraphs.

That’s why it’s better to use short paragraphs that express one idea. This is because dyslexic users need more breaks between ideas than non-dyslexic users.

Breaking up your text to one idea per paragraph makes reading a lot easier for both dyslexic and non-dyslexic users.

Washout effect

Sometimes dyslexic users can experience the washout effect. When this happens, the text looks faint and indistinct.

This can make reading slower and cause dyslexic users to guess what a word is because of the difficulty seeing it. To lessen this effect, there are two bad practices you should avoid with your text.

5. Serif fonts

Serif fonts have hooks at the ends of the letter strokes. They may look decorative, but they can cause reading problems for dyslexic users.

Serifs tend to obscure the shapes of letters, making the letters run together.

A sans-serif font would allow dyslexic users to see the shapes of letters more clearly because they don’t have hooks at the ends of the letter strokes.

This also increases the spacing between letters, making words more distinguishable. If you want your users to read your text easily, go with a san-serif font.

6. Italicised text

Italics are sometimes used to highlight text. However, the reason you shouldn’t use italicized text is because they are hard to read.

The letters have a slightly jagged line compared to non-italic fonts. The letters also lean over slightly making it hard for dyslexic users to read words accurately.

When the text size is small, the text is practically illegible. A better way to highlight is to use bold text because the letters are clearer and give better contrast.

There are many dyslexic users that suffer from badly designed websites. All of these bad practices are quick and easy to fix. It’s a matter of knowledge and understanding that will get people to change.

Hopefully, this article has shed some light on how dyslexic users experience the web, and what designers can do to make their reading experience better.

Additional References and Information Sources
1. http://www.angelfire.com/tn3/writing/DesignUsersReadDis.pdf
2. http://clearhelper.wordpress.com/2009/12/14/web-site-design-suggestions-for-people-with-dyslexsia
3. http://www.dyslexia-parent.com/mag35.html
4. http://www.pws-ltd.com/sections/articles/2009/justified_text.html
5. http://irlen.com.sg/irlen.html
6. http://accessites.org/site/2006/11/designing-for-dyslexics-part-3-of-3
7. http://www.bdadyslexia.org.uk/about-dyslexia/further-information/eyes-and-dyslexia.html
8. http://en.wikipedia.org/wiki/Justification_(typesetting)
9. http://en.wikipedia.org/wiki/Double_spacing_at_the_end_of_sentences
10. http://en.wikipedia.org/wiki/Dyslexia]

Does BPA make girls anxious, hyperactive, etc

Girls exposed before birth to high levels of the estrogen-like chemical BPA are more likely to be anxious, depressed and hyperactive at age 3, according to a study in today's Pediatrics.

Boys' behaviour was unaffected by BPA, the study says.

Scientists in recent years have linked BPA, or bisphenol A, to a wide variety of health problems, from breast cancer to diabetes. 

BPA is found in countless consumer products, from plastic bottles to dental sealants, medical equipment, receipt paper and the linings of metal food and drink cans.

Virtually everyone is exposed to BPA. Authors of the new study found BPA in the urine of more than 97% of the 240 pregnant women studied, as well as 97% of their children. 

Being exposed to high BPA levels after birth didn't appear to affect behavior, says study author, Joe Braun, a research fellow at the Harvard School of Public Health.

That could be because BPA, like lead and other toxins, causes the greatest harm before birth, when the fetal brain is developing, says pediatrician Philip Landrigan, a professor at New York's Mount Sinai School of Medicine, who was not involved in the new study. "Parents should be concerned about these findings," Landrigan says.

About 12% of boys and 6% of girls have been diagnosed with ADHD, or attention deficit hyperactivity disorder, according to the U.S. Census Bureau.

Girls are about twice as likely as boys to be depressed or anxious, Braun says. Few kids in the study were depressed or anxious enough to meet the requirements for a clinical diagnosis, says Braun, noting that only 2% to 3% of children this age are diagnosed with these problems. 

But Braun says the differences in behaviour between children in his study are comparable to the effects seen with high exposure to toxins such as lead, mercury and pesticides.

Steven Hentges, a spokesman for the American Chemistry Council, says the study's "conclusions are of unknown relevance to public health." He notes that regulators in Europe, Japan and the USA "have … reviewed hundreds of studies on BPA and repeatedly supported the continued safe use of BPA."

Yet Landrigan says studies like this are precisely why the FDA needs to act to protect people from BPA. In the meantime, he says pregnant women should try to reduce their exposure.

Video Games: A Cure for Lazy Eye - Amblyopia

At the American Academy of Opthalmology's annual meeting in Orlando, Florida, a team led by Somen Ghosh of the Micro Surgical Eye Clinic in Kolkata, India, reported that video game therapy improved the visual acuity of 10- to 18-year-olds with amblyopia, or "lazy eye".

This comes hot on the heels of similar findings from a study of adults with the condition, published in PLoS Biology by a team led by Roger Li and Dennis Levi of the University of California, Berkeley.

Even more impressive results may be on the horizon, as video games are combined with another approach, known as "perceptual learning".

Amblyopia occurs when the neural connections from one eye to the brain fail to develop normally. Over time, the brain reacts by ignoring the blurry input from this "weaker" eye.

The condition can be treated in childhood by patching the good eye and using visual training exercises to build the faulty neural connections - but the dogma has until recently been that little can be done after about the age of nine.

The idea of using video games stemmed from the discovery that expert gamers have unusually strong visual skills.

Subsequent studies have shown that action games can improve contrast sensitivity in people with normal vision.

Ghosh's studies involved children and teenagers with amblyopia who received the standard treatment of patch, eyeglasses and visual exercises, with or without supplementary treatments.

Even the group given just the basic treatment showed some improvement after one year - but those who were also instructed to play first-person shooter or driving games each day did noticeably better.



In adults, some of the best results in treating amblyopia have not used computer games, but instead trained people to distinguish blurry grey patterns known as Gabor patches.

In 2004, a team led by Uri Polat of Tel Aviv University showed that this perceptual learning resulted in two-fold improvements to sufferers' contrast sensitivity.

But even Polat, who has recently applied a similar approach to treating the natural deterioration in close vision that happens with age, concedes that the exercises are a bit boring for teens.

So what about combining perceptual learning with gaming? That's now being tried by Levi's lab, in collaboration with a team led by Daphne Bavelier of the University of Rochester in New York.

The researchers have embedded Gabor patches into a modified version of the first-person shooter Unreal Tournament, which they are now testing as a treatment for amblyopia.

"You have to shoot at the patches," Bavelier explains. "If you don't they transform into nasty bots that are really difficult to kill.

Paraplegic Woman walks again with aid of Exoskeleton

It’s been almost twenty years since Amanda Boxtel stood on her own two feet due to a freak skiing accident in Colorado, but today she’s up and walking again thanks to an exoskeleton from Ekso Bionics.

As Boxtel notes, this is only the first step in exoskeleton technology and someday, she hopes to dance again, cheek-to-cheek.

Sleep paralysis more common in students

Sleep paralysis, a condition that affects less the 8 percent of the general population, is defined as “a discrete period of time during which voluntary muscle movement is inhibited, yet ocular and respiratory movements are intact,” according to a new study in the current issue of Sleep Medicine Reviews.

Some experts now suspect the townspeople involved in the Salem witch trials may have been experiencing sleep paralysis and in the 19th-century novel Moby Dick, the main character Ishmael experiences an episode of sleep paralysis in the form of a malevolent presence in the room.

Some people who experience these episodes may regularly try to avoid going to sleep because of the unpleasant sensations they experience. But other people enjoy the sensations they feel during sleep paralysis, notes Brian A. Sharpless, clinical assistant professor of psychology at Penn State.

“I realized that there were no real sleep paralysis prevalence rates available that were based on large and diverse samples,” Sharpless says. “So I combined data from my previous study with 34 other studies to determine how common it was in different groups.”

He looked at a total of 35 published studies from the past 50 years to find lifetime sleep paralysis rates.

These studies surveyed a total of 36,533 people. Overall he found that about one-fifth of these people experienced an episode at least once. Frequency of sleep paralysis ranged from once in a lifetime to every night.

When looking at specific groups, 28 percent of students reported experiencing sleep paralysis, while nearly 32 percent of psychiatric patients reported experiencing at least one episode.

People with panic disorder were even more likely to experience sleep paralysis, and almost 35 percent of those surveyed reported experiencing these episodes. Sleep paralysis also appears to be more common in non-Caucasians.

“Sleep paralysis should be assessed more regularly and uniformly in order to determine its impact on individual functioning and better articulate its relation to other psychiatric and medical conditions,” Sharpless says.

He looked at a broad range of samples—papers were included from several different countries.

People experience three basic types of hallucinations during sleep paralysis—the presence of an intruder, pressure on the chest sometimes accompanied by physical and/or sexual assault experiences, and levitation or out-of-body experiences.

There has been little research conducted on how to alleviate sleep paralysis or whether or not people experience episodes throughout their lives.

“I want to better understand how sleep paralysis affects people, as opposed to simply knowing that they experience it,” says Sharpless. “I want to see how it impacts their lives.”

Sharpless hopes to look at relationships between sleep paralysis and post-traumatic stress disorder in the future.

Jacques P. Barber, professor of psychiatry at the University of Pennsylvania, contributed to the research, which was supported in part by the National Institute of Mental Health.

More news from Penn State: http://live.psu.edu/

Empowering Learning: New Book "Bridges to success"

Contact Olive at www.empoweringlearning.co.uk

UK NHS Privatisation and the Corporations Driving it

Epilepsy Scotland: Lighthouse Youth Project

The Lighthouse Youth Project is based in Edinburgh. Being diagnosed with epilepsy can be difficult at any age, but it can be particularly difficult if you are a teenager, already dealing with a lot of changes in your life. It can sometimes feel overwhelming.

You may have a lot of questions or have worries that you wish to talk about. You may not know where to go to get appropriate advice, information or support.

Young people involved in the Lighthouse Youth Project meet regularly to undertake social activities and go on various trips together.The project is split into two groups:

• Youth Group: This group is for young people with epilepsy aged from 11 to 15. The group meets every 2 weeks for an activity. These activities include archery, bowling, laser quest, electronic gaming, drumming or a day gorge walking.
• Transition Group: This group is for young people with epilepsy aged 15 to 19. The Transition group meet every 2 weeks for an activity. These activities are similar to the Youth Group, but we also try to incorporate age-appropriate events like job seeking and careers and workshops on communication, alcohol, drugs, and memory problems

As a group member, you would be actively involved in making decisions about group activities and the things you would like to do. You would meet regularly and discuss ideas for the upcoming activity programmes.

Have a look at previous years' programmes for some ideas what the groups are up to:

• Transition Group Summer leaflet 2010 
• Youth Group Autumn and Winter Schedule 2009 
• Youth Group Summer Leaflet 2010

If you want details of the new programmes, please contact our youth worker, Zoe Reid, on 0131 226 5458 or email zreid@epilepsyscotland.org.uk

The Lighthouse project also provides one to one support. We give you the chance to have a confidential chat with our youth worker, Zoe Reid.

She will give you the space to talk about issues you may be dealing with, or just to have a chat. We provide information and support on many issues regarding epilepsy.

We also help with many other non-epilepsy related issues, worries or concerns that you may be having. Meeting with the youth worker can happen as frequently as you like or, it can just be a one off chat.

It's up to you and we will fit around your needs and wishes. If you are feeling particularly isolated then Zoe can meet with you more often and try to help resolve any issues you bring up.

Zoe can keep in touch with and work alongside schools, family planning clinics, job centres, GPs, Epilepsy Specialist Nurses and social workers. This is up to you.

There is a lot going on with the Lighthouse Youth Project. If you are interested in becoming a member or just wish to find out more about it, please call Zoe 0131 226 5458 or email: ZReid@epilepsyscotland.org.uk

You may also be interested in our teenage guide Guide to getting on with your life.

Epilepsy Scotland's Guide to Teenagers

To read this guide simply click on the picture or follow this link.

For more information on Epilepsy Scotland follow this link.

Low birthweight Infants at risk from Autism (5x)

Autism researchers at the University of Pennsylvania School of Nursing have found a link between low birthweight and children diagnosed with autism, reporting premature infants are five times more likely to have autism than children born at normal weight.

The children, some born as small as about a pound, were followed for 21 years making this study, published in the prestigious journal Paediatrics, one of the most remarkable of its kind.

The infants were born between September 1984 through July 1987 in Middlesex, Monmouth, and Ocean counties in New Jersey at birthweights from 500 to 2000 grams or a maximum of about 4.4 pounds.

“As survival of the smallest and most immature babies improves, impaired survivors represent an increasing public health challenge,” wrote lead authorJennifer Pinto-Martin, MPH, PhD, director of the Center for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) at Penn Nursing.

“Emerging studies suggest that low birthweight may be a risk factor for autism spectrum disorders.”

Links between low birthweight and a range of motor and cognitive problems have been well established for some time, but this is the first study that establishes that these children are also at increased risk for autism spectrum disorders (ASD).

“Cognitive problems in these children may mask underlying autism,” said Dr. Pinto-Martin. “If there is suspicion of autism or a positive screening test for ASD, parents should seek an evaluation for an ASD.

Early intervention improves long-term outcome and can help these children both at school and at home.”

In future studies, Penn researchers will investigate possible links between brain hemorrhage, a complication of premature birth, and autism by examining brain ultrasounds taken of these children as newborns.

The researchers, including a team at The Children’s Hospital of Philadelphia, followed 862 children from birth to young adulthood finding that five percent (5%) of the children were diagnosed with autism, compared to one percent (1%) of the general population in what researchers called “the first study to have estimated the prevalence of ASD . . . using research validated diagnostic instruments.”

The $3 million study was funded by the National Institute of Mental Health.(NIMH)

Dr Ron Minson: Integrated Listening

Ron Minson, MD had tried all the educational/medical solutions available and was still not able to help their daughter overcome the depression which resulted from a lifetime of dyslexia.

Dr. Minson’s background was traditional medicine– but the urgency of the situation led him to try something new.

The therapy showed signs of success within weeks and by the end of the 3-month program his daughter’s reading and organizational abilities had improved significantly.

More importantly, the depression which had held her back for years finally lifted

Based on clinically proven outcomes, iLs programs strengthen existing pathways and create new neural connections/pathways in the brain (“neuroplasticity”).

As these neurological connections grow stronger, language skills and emotional/psychological functions, such as self-confidence and regulation, also tend to improve.

The improvements in brain function are based on the premise that our higher brain functions – the “cortical functions” such as language, cognitive skills, socialization – rely and depend upon how well sensory input is received and processed as it enters the central nervous system and is relayed to the upper brain. iLs improves processing at both the sub-cortical and cortical levels.

iLs has a global effect on the brain and central nervous system, influencing the following systems: balance, visual, auditory, motor, coordination, behavior and emotional regulation. As a result, it is successfully implemented for a wide variety of conditions:

• Learning difficulties such as reading, spelling, math, auditory processing and attention
• Sensory processing and integration
• Stress, sleep, emotional regulation and mood problems
• Those with autism and neuro-developmental difficulties

Find out more about ILS here on their website

Notes From a Dragon Mom - A child with Tay-Sachs, a rare genetic disorder

We found this very moving and interesting article in the NY Times. It's from Emily Rapp is the author of “Poster Child: A Memoir” She is also a professor of creative writing at the Santa Fe University of Art and Design:


MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.

I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder.

He is slowly regressing into a vegetative state. He’ll become paralysed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find.

My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.

We never thought about how we might parent a child for whom there is no future. The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test.

I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice. Both times the results were negative.

Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now. No matter what we do for Ronan, choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training, he will die. All the decisions that once mattered so much, don’t.

All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them and therefore us, the proud parents, apart.

Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular.

Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.

I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand.

We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment.

We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.

The day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps.

He can watch television if he wants to; he can have pudding and cheesecake for every meal.

We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and, healthy?

Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.

Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom.

The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity.

We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gut wrenching loss.

This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell.

Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

To read the full story follow this link Notes From a Dragon Mom - NYTimes.com