Foetal Alcohol Syndrome

The more alcohol a woman drink when she’s pregnant, the greater the risk she is taking with her baby’s health. Miscarriage, stillbirth, premature birth and small birth weight are all associated with a mother’s drinking alcohol during pregnancy.

Foetal Alcohol Syndrome (FAS)  affects the way a baby’s brain develops. First discovered by two doctors in the US in 1973, the seriousness of  the condition depends on how much alcohol a mother drank during pregnancy. The World Health Organisation quotes a 2005 US study which estimated that one in every 1,000 children are born with FAS (2).

What is foetal alcohol syndrome?

 

picture-of-girl

Children with FAS have distinct facial features including: small and narrow eyes, a small head, a smooth area between the nose and the lips and a thin upper lip. They also show the following symptoms:

  • Hearing and ear problems
  • Mouth, teeth and facial problems
  • Weak immune system
  • Epilepsy
  • Liver damage
  • Kidney and heart defects
  • Cerebral palsy and other muscular problems
  • Height and weight issues
  • Hormonal disorders

How FAS develops during pregnancy

When a pregnant woman drinks, the alcohol goes across the placenta to the foetus via the bloodstream The foetus’ liver isn’t fully formed, so it cannot metabolise the alcohol quickly enough.  At this stage, the baby has a high blood alcohol concentration. It therefore lacks oxygen and the nutrients needed for its brain and organs to grow properly. White matter in the brain, which is responsible for speeding up the processing of information, is sensitive to alcohol so when a mother drinks, it affects the development of her baby’s white matter.”

Timing is another medical factor in the development of foetal alcohol syndrome. A baby’s facial features are formed during weeks six to nine of pregnancy. Scientific evidence shows that mothers who drink during this three-week window are more likely to have babies with the facial deformities associated with FAS. Damage to the baby’s organs through drinking is most likely to happen in the first three months.

 

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FASD signs and symptoms

Foetal Alcohol Spectrum Disorder (FASD) is the umbrella term used to describe the conditions that occur in people who have been diagnosed with some, but not all, of the symptoms of foetal alcohol syndrome. Like FAS, FASD is caused by a mother’s drinking during pregnancy, and it affects the way a baby develops physically and mentally. There are no accurate records of the incidence of FASD in Western countries, but experts estimate that it may be as high as one child in 100 is born with FASD (

It is more difficult for a specialist to diagnose FASD than it is FAS. This is because children with FASD may not have facial deformities. It might not be until they start going to school and interacting with others that the following symptoms – which also affect children with foetal alcohol syndrome – show up:

  • Learning difficulties
  • Problems with language
  • Lack of appropriate social boundaries (such as over friendliness with strangers)
  • Poor short term memory
  • Inability to grasp instructions
  • Failure to learn from the consequences of their actions
  • Egocentricity
  • Mixing reality and fiction
  • Difficulty with group social interaction
  • Poor problem solving and planning
  • Hyperactivity and poor attention
  • Poor coordination.

Treatment for children

GPs can refer children with FAS and FASD to community paediatricians who are likely to investigate problems further with psychologists, psychiatrists, speech and language therapists and specialists for organ defects.

Dr Mukherjee runs a clinic for children and adults over six with FAS and FASD. He diagnoses FASD by excluding similar conditions such as Attention Deficit Hyperactivity Disorder (ADHD). “Then it’s about working with the child, parents and other professionals, such as teachers, to find a management strategy for the condition,” he says. “For example, parents can learn to repeat instructions for children and use simple language and teachers should allow them more time and provide extra supervision.”

Early diagnosis is key. Research shows that people who have FAS or FASD go on to experience “secondary disabilities” – those not present at birth – which could be prevented with appropriate support. These include mental health and alcohol and drug problems. “Early diagnosis allows the stability and management that children with FAS or FASD need to be invoked earlier,” says Professor McIntosh.

Advice for mums-to-be

We don’t know how much alcohol is safe to drink in pregnancy. It depends on various factors such as how fast a mum-to-be absorbs alcohol, her physical health, diet and what medication she is on. It’s why the government advises pregnant women and those trying to conceive to avoid alcohol altogether.

If you didn’t know you were pregnant and you have been drinking above the government’s lower risk guidelines, don’t panic. Talk to your doctor or midwife about any concerns you may have. Just because you may have drunk does not mean you have necessarily done damage. If you drink a lot of alcohol  and are pregnant and find it hard to stop, talk to your doctor about getting help.

“If you drink a low amount when you are pregnant your baby has a low risk of developing FAS or FASD,” says Dr Mykherjee. “If you drink heavily you have a high risk. If you don’t drink, there’s no risk at all.”

 

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Helping disabled children cope with bullying

Children with a disability may be bullied. If this happens, it is important that action is taken to stop the bullying. That goes without question. However we  always cannot  protect our children from the bullies  so it is important to help  them build the resilience required to prevent bullying having the devastating impact it can have on a child’s life.

The points raised below may help you in bully-proofing your child

Do

Encourage Positive Emotions – It is essential that we provide o children with opportunities to have positive emotions. This sounds simple, but it’s easy to get distracted by practicalities of parenting so that we fail to provide them with enough opportunities to be joyful. Encourage children to find pleasure and humour in life. Although we should never overlook or fail to discuss their struggles, we should consistently provide children with opportunities to develop positive emotions hope by offering them situations in which they feel confident and encouraged.

Provide Social Support – The more our children feel like they have a social support from their family, the better they will handle negative social interactions outside the home. It’s important to make time to talk to children and to just be with them. Even if a child, particularly a teenager, is resistant to confiding, don’t give up. Try to find ways to let them know that you are there for them when they are ready to open up.

An extended family circle is also beneficial. Many children aren’t comfortable talking to their parents about certain things, but they may have a relative or family friend who they trust. The same holds true for their friendships with children who have a positive influence on them.

Even a child who is isolated from peers will do much better with family support. As he or she struggles to make friends, you can be helpful by exposing them to positive social situations: i.e. volunteering with them, taking them to community events, or participating in activities with friends of ours who have children around the same age. It is important to facilitate the forming of these social connections without being critical or providing too much pressure.

Find an Area of Interest– Helping children to find something that interests them and that they can excel in is a gift that can shape their lives.  Get them involved in activities that help them feel good about themselves. Provide them with a variety of opportunities to find what specifically appeals to the. It is important to support them in their excitement. It is also important not to confuse false praise with encouragement. Children can tell the difference, and they often feel confused when our compliments don’t match their accomplishments.

Teach strategies for coping with stress – Children must be taught how to calm themselves down when distressed or feeling aggressive. We can teach them to be aware of themselves and their emotions, while learning to regulate their reactions. It is important to help them develop the ability to remain calm, even in the face of bullying. The ability to see what is going on in their own minds and the minds of others will help children to recognize their own reactions and understand others better, so they can more effectively cope with bullies.

Promote Problem Solving Skills – To equip children with invaluable problem solving skills, we must show them how to be flexible in their responses. If a child faces a challenging situation, it is important to sit down with them and encourage them to think about the many possible courses of action available and which will yield the most benefit.  If, for example, they endure teasing from a friend, what can they do? Is revenge really the best option? Can they joke back and not “take the bait?” Does ignoring it really solve the problem? Should they talk directly to the friend about how the teasing makes them feel? Is it better for an adult to be present in the conversation?

We can teach our children to always ask themselves, how can I get help? How can I get more l support? And remember, the more adaptive we are in dealing with our own problems, the more adaptive they will be with theirs.

Orient Them Toward Future – Part of ensuring our children stay hopeful involves orientating them toward the future. Helping them plan for their future doesn’t necessarily mean knowing what college they want to get into or how many children they plan to have. It also doesn’t mean helping create a fantasy of a future that could never exist. It is more a matter of helping them focus on their real, everyday goals, such as a desire to visit a certain city or learning to drive a car. It can be a matter of making them aware of a heroic person who inspires them or introducing them to new situations that open them up to new ideas and opportunities.

Columnist Dan Savage started the “It Gets Better Project” to encourage struggling young people to have faith that they can get through bullying and adversity and one day enjoy a happy and fulfilling life. This message is one from which every adolescent can benefit. Teaching children that the future holds brightness and possibility is a lesson that can lift them through low times.

Lead by Example – In each of the previous suggestions, it is vital to lead by example. Telling children what to do and how to behave will rarely influence them as much as showing them how to handle difficult situations. Exposing them to the constructive approaches we take in finding solutions to problems in our lives encourages them to handle matters in a similar way. We should always aim to act in a way that is consistent with our values and provide our children with a model to do the same.

Don’t

Support Maladaptive Thinking – Negative thoughts contribute to a child’s insecurities and low self-esteem. Allowing our children to focus or dwell on a perceived weakness or negative trait is not constructive. Instead, encourage them to challenge their hostile self-criticisms and self-attacks. This form of maladaptive thinking, which is referred to as the “critical inner voice,” will lead a child to feel mentally defeated and victimized by circumstances.

The critical inner voice can contribute to stress, anger, and depression. It can make children gravitate toward activities that leave them feeling bad and avoid those that make them feel good. It may, for example, encourage them to be isolated, “Don’t leave your room. No one out there wants to see you.” It can encourage them to act out, “Why even go to school? You’re too stupid to learn anything anyway.” Allowing children to indulge in reflecting or acting on these critical inner voices can have harmful effects. Instead, encourage them to identify these negative thoughts and challenge them in their actions. Conquer Your Critical Inner Voice, a book I co-authored with Dr. Robert Firestone and Joyce Catlett, provides exercises for identifying and challenging this critical inner voice.

Be Critical, Coddling, or Ignore Issues – We all know the importance of supporting our children in new challenges. However, when our children take on something new to them, it is often hard to find a balance between pushing them too hard and doing too much for them. Ideally, we should try to put them in slightly novel situations in which they’re slightly uncomfortable and we’re there to back them up. We don’t want to over-push our children, leading them to feel abandoned or afraid. In this same way, we don’t want to overprotect them by speaking for them or stepping in too often, which teaches them to feel dependent or helpless. Most importantly, we should never pretend not to notice that there is a problem. Ignoring the fact that our children are struggling will only leave them feeling more alone than ever.

Dwell on the Negative – When a child goes through a negative experience, it is important to give them the platform to talk about it. Encourage the child to express what happened and how it made him or her feel. We can help children resolve any traumas they experience by reframing the experiences, so they can learn from them. This is not to say we should attempt to alter reality or ignore the fact that they were hurt by something. However, the more people mull over painful events or tell themselves stories about being victims, the worse off they are in terms of building resilience.

It is really unhelpful to promote the idea that the world is unsafe or that change is not possible. Instead, we should tell our children positive uplifting stories about our own challenges. “I used to be so shy that I sat alone every day at lunch. Then one day, I made a friend at school, and slowly I started to feel more and more comfortable talking to him. Then I grew more comfortable talking to other children. Eventually, I had a close group of friends who never made me feel embarrassed or shy.”

Avoid Dealing With Painful Events -When a traumatic event occurs, we shouldn’t encourage children in engaging to simply steer clear of anything that reminds them of the occurrence. For example, if a child was once bullied on a certain street, while carrying a certain backpack, we should help them to talk about the experience and help them process their reactions to it. Having them just take another street or throw away the backpack won’t resolve the experience in their minds. In fact, avoidant coping strategies will make them less resilient.

Never avoid talking about painful events. One of the biggest challenges in stopping bullying is that many children fail to disclose incidents in which they were abused. When we encourage our children to talk about bad things that happen to them, we help them make sense out of these experiences. Memories that are not made sense of by being expressed as a coherent narrative can have negative effects on children later in their development. They may start to show behaviour problems, increased fears, stress or anger, and become less social. Creating a coherent narrative helps make meaning out of experiences and form a sense of personal agency and closure.

So even if we are not able to protect our children from the bullies we can help them build the resilience required to not allow bullying to have the devastating impact it is capable of having on a child’s life. And this will provide them with an essential coping tool they can take with them into adulthood.

 

Causes of learning disabilities and their impact on health

The World Health Organization (WHO) has defined learning disabilities as a state of arrested or incomplete development of mind. Somebody with a general learning disability is said to have a significant impairment of intellectual, adaptive and social functioning. A learning disability is not acquired in adulthood and is evident from childhood.

The term general learning disability has now been recommended in the UK to replace terms such as mental handicap or mental retardation. A child with a general learning disability or intellectual impairment finds it more difficult to learn, understand and do things compared with other children of the same age. The degree of disability can vary greatly, being classified as mild, moderate, severe or profound.

General learning disability is different from from specific learning difficulty such as dyslexia which means that the person has one difficulty such as in reading, writing but has no problem with learning in other areas.  It is characterised by generally poor performance in tasks such as learning, short-term memory and problem solving.

People with intellectual disabilities have an increased prevalence of health problems and their health needs are often unrecognised and unmet. For example, anxiety disorders are the most prevalent of the major mental illnesses and are present in 15–20% of the population but for people with intellectual disability, the prevalence of anxiety disorders has been shown to be much higher, particularly for hose with a mild to moderate intellectual disability. This is likely to be because they are aware that they are functioning less well than other people and because they find it significantly harder than others to cope with the demands of everyday life Anxiety disorders in people with intellectual disability can often be overlooked. Communication difficulties may make it harder for the person to describe their feelings and fears. Their difficulties may result in aggressive or destructive behaviour when they find situations difficult to cope with or are trying to avoid something which they find stressful

Although life expectancy is increasing, with people with mild learning disabilities approaching that of the general population, the mortality rates among people with moderate to severe learning disabilities are three times higher than in the general population, possibly due either to the impact of the cause of the disability, complex additional physical difficulties or because of less effective health care than the general population. The median age at death for people with learning disabilities is about 25 years younger than for those who do not have learning disabilities.

A classification of mild, moderate, severe and profound has been used to describe the degree of learning disability. However, this classification is in many ways inappropriate because each person with general learning disability must be assessed and treated as an individual. A person’s degree of intellectual impairment provides very little information about a person’s social, educational and personal needs, and the kind of help and support

About 2% of the population is estimated to have an intellectual impairment. It has been estimated that 1,191,000 people had learning disabilities in England in 2011, including: 286,000 children (180,000 boys, 106,000 girls) aged 0-17. As all children are assessed and monitored in infancy and all children attend school, it is likely that all or almost all of these children are receiving services to support them and their families

However of the 905,000 adults aged 18+ (530,000 men and 375,000 women), estimated to have an intellectual impairment only 189,000 (21%) are known to learning disabilities services. This means that the vast majority of adults with an intellectual impairment are not receiving services which would provide support for them and their families

The population for people with learning disabilities shows a sharp reduction in prevalence rates after age 49 due to reduced life expectancy. A sharp increase in prevalence for those under 20 may reflect increased survival rates among more severely disabled children.

The number of people with intellectual disabilities increased by 53% over the 35-year period from 1960 to 1995 as a result of improvements in socio-economic conditions, medical  care  and access to services for children

The causes of intellectual impairment include:

Genetic disorders such as Down’s syndrome, fragile X syndrome, Klinefelter’s syndrome and Turner syndrome

Metabolic disorders such as Tay-Sachs disease, Gaucher’s disease, Niemann-Pick disease) and Hurler’s syndrome.

Nutritional deficiency such as iodine deficiency.

Damage caused before the child is born by infections such as rubella; or by drugs or alcohol.

Damage caused during labour by prolonged labour, trauma, and deprivation of oxygen

Accidental or non-accidental injury, severe infections, poisoning or malnutrition   in infancy or childhood

For many people with an intellectual impairment there is no known cause

People with Autistic Spectrum Disorder and Crime

People with autism spectrum disorder (ASD) may have characteristics that could make them both more likely, and less likely, to break the law. On the one hand, they may have trouble with aggression, controlling strong emotions, and understanding other people’s perspectives. They may have challenging behaviours that could attract police attention. However, they also tend to find rules helpful and follow them precisely , and laws are simply rules that they could be expected to follow.

 


Several research studies have found either no link between autism and violent crime, or could not reach a conclusion about a link. A Danish study found that people with Asperger’s Syndrome (a form of high-functioning autism) were no more likely than the general population to commit a crime; those with classic autism and “atypical autism” were less likely than other people to commit crimes.
Research on violent criminals with high-functioning ASD found that the offenders may have deficits in moral reasoning, understanding other people’s perspectives, and emotional control. These deficits could, potentially, reduce their responsibility for crimes they commit in some cases.

However, as the number of individuals with autism has dramatically increased in the last twenty years, so too have autistic defendants in criminal proceedings in proportion to the increase in overall numbers. Such cases are extremely challenging to the criminal court system because autistic individuals’ motivations, perceptions, and intentions are often difficult for courts to understand. Questions of mental capacity and criminal intent are particularly challenging. Communication difficulties and problems in recognising social signals may place people with ASD at a disadvantage when questioned by police. They may not be able to tell if an investigator is lying or manipulating them. As a result, they may make a false confession or fail to protect their legal rights.

Similarly, courts may fail to understand what prison sentences mean for autistic individuals. The issue of autism in criminal courts is likely to grow in significance as the large population of autistic children become adults. The kinds of criminal cases range from assault to murder and from charges related to child pornography to possession of weapons without license. Many of these criminal cases highlight the complex and disturbing ways in which criminal law is interfacing with the world of autism.
Despite the public interest in people with autism as criminals, they are more likely to be victims, according to experts. Children with disabilities are about three times more likely to be the victims of abuse or neglect than nondisabled children. Children with autism are bullied more often than other children, although they can occasionally be bullies themselves, according to research by the Interactive Autism Network.

Most of the legal contact that individuals with autism have is as victims.

Helping people with learning disabilities stay safe

 

People with learning disabilities can often be victims of hate crime and harassment, whether this is in their home or communities or online, because they are seen as ‘different’ or ‘vulnerable’. . The Foundation for People with Learning Disabilities has created two easy read guides to help people with learning disabilities know how to keep safe. Staying Safe Out and About has information about keeping safe when people are out in their communities. Staying Safe on Social Media and Online tells people how to keep safe when using facebook, twitter and emails. 

 

hate crime

People with learning disabilities and forced marriage

British councils have had to create policies to tackle the rise in the number of people with learning disabilities entering forced marriages. They issue guidance for social workers and other staff to raise awareness and spot potential victims. It is unlawful in the UK to give permission for a marriage on behalf of a person if they cannot consent themselves. The Forced Marriage Unit says it is dealing with a “growing number of referrals” involving people with learning disabilities and has produced a booklet to help professionals prevent forced marriages.

A forced marriage in UK law, is one to which the individual has not consented. For people with learning disabilities this may mean that they do not have the capacity to consent to marriage or that they do not understand the nature of the marriage contract. It does not necessarily imply force, coercion or intimidation. In fact the person with learning disabilities may be happy to comply, and enjoy the idea of a wedding or of being married, although they do not fully realise what they are agreeing to, or they may not understand what is happening at all.
The majority of cases of forced marriage reported to date in the UK involve South Asian families; this is partly a reflection of the fact that there is a large, established, South Asian population in the UK. However, it is clear that forced marriage is not solely a South Asian issue and there have been cases involving East Asian, Middle Eastern, European, Gypsy and Traveller and African communities. Some forced marriages take place in the UK, while others involve a partner coming from overseas or a British national being sent abroad.
In 2009 nearly 1,700 incidents of suspected forced marriage were reported to the Forced Marriage Unit. Research also indicates that the forced marriage of children and adults with learning disabilities is likely to be vastly underreported and can differ from the way in which forced marriage presents generally. It is therefore difficult to obtain any figures for the number of people with learning disabilities who are forced to marry.
Many families are not aware that organising marriages for their relative with learning disabilities could potentially be forcing them into marriage. Parents who force their children to marry often justify their action as protecting their children, building stronger family ties and preserving traditions. They often do not see anything wrong in their actions and indeed when this involves a person with a learning disability they often believe it is the right, or only, option and therefore may be open about their intentions. In addition to the motives for forcing people to marry generally, there are other factors which may make someone with a learning disability more vulnerable. For example a lack of suitable day centres and day time activities may isolate a potential victim. Some key motives for forcing people with learning disabilities to marry include:
• Obtaining a carer for the person with a learning disability.
• Obtaining physical assistance for ageing parents.
• Obtaining financial security for the person with a learning disability.
• Believing the marriage will somehow “cure” the disability.
• A belief that marriage is a “rite of passage” for all young people.
• Mistrust of the “system”, mistrust of external (e.g. social care/health) carers.
• A fear that younger siblings may be seen as undesirable if older sons or daughter are not already married.
• The marriage being seen as the only option or the right option (or both) – no alternative.

Anecdotal evidence also suggests that young women with learning disabilities can be married to young men who have in some way “disgraced” family honour and are now regarded as “unsuitable” to enter any other marriage. Marriage with a woman with a learning disability may be seen by the family as their only option. Some prospective brides and grooms who come from abroad may not realise that they are marrying a person with a learning disability and that they may be expected to become a carer.

A booklet for people with learning disabilities  has been produced by Respond with funding from the Forced Marriage Unit.

Disability and Learned Helplessness

Children with disabilities often develop ‘learned helplessness’. This means that they learn that they do not have to do things for themselves. Other people will always help them or do the task for them. They do not do as much for themselves as they could. (Throughout this post ‘children’ can be replaced by’young people’ or’adults’ but it would have been too clumsy to write it this way)

This can be because:
• they are given too much help, especially if it takes them a long time to do something or because they do things awkwardly
• because they are asked to do things that are too difficult for them
• because other people think that the child is not able to learn
• because they always get their own way by crying or making a fuss and so have never had to do things for themselves

Over time, the child can begin to see herself as a passive participant who is not able to be actively involved in learning. This presents an additional challenge for a teacher or parent who is trying to ignite the child’s desire to learn. Think carefully about whether you are contributing to learned helplessness – it’s very easy to do.

The points below are intended to stimulate learning and avoid the feeling that learning is pointless, someone else will always do i for you anyway.

1: Motivation
Nobody does anything without a reason that makes sense to them at the time. Motivation for learning comes from within a person. Almost all human beings have inborn drives:
• to discover and understand the world around us:
• for independence and sense of self,
• to connect socially with others (people on the autistic spectrum may not have this)

However, motivation can be stifled habituation (boredom develops with too much repetition) or by a feeling that it is pointless to make the effort as someone else will do it for us anyway, or by the nature of the task If something is too easy, it does not stimulate our natural curiosity; too difficult, and we will not be motivated to even attempt the task.

Children with severe disabilities are often presented with tasks that are either too easy or too difficult physically or cognitively. Often participation is done in a hand over hand fashion with little effort from the child. This can lead to passivity. Use hand over hand sparingly and think about whether it is useful and whether the child is engaged or just being moved about like a puppet

The task of parents, educators and therapists is to provide opportunities where children can be challenged and succeed and to prevent them from learning passive dependency.

It may be helpful to:
• Provide a range of assistive devices so children can accomplish physical tasks with less assistance
• Set up activities for the child to use a combination of knowledge and trial and error to achieve success. – and let them struggle to achieve.
• Use theme based learning which provides multiple experiences with a concentrated set of vocabulary and concepts without being monotonous.
• Provide opportunities for real making choices – enable the child to feel “In Control” –but go along with the choices. Making choices helps to increase cognitive engagement and reduce passivity. Begin with objects and move to pictures with and without voice-output. Provide multiple opportunities for meaningful choices throughout the day. Try presenting choices of actions instead of objects for increased motivation and more natural repetition. Offer choices for frequent short activities, or choices within an activity instead of choosing a whole activity.
• Provide children active experiences with early computer play where the child can direct the actions of the computer through simple choices and then observe the results. Use of 2 switches with different functions connected to computer, battery toys and/or simple voice output devices. Use of eye-pointing and eye-gaze frame for children who face physical

Attention and connection with others are often powerful motivators as they communicate a feeling of value or worth as a human being.
• Give children tasks that are truly appreciated by, or important to, someone else, and motivation is likely to be increased.
• Provide frequent opportunities for social interaction and connection with other people, while acknowledging that this is not a universal motivator, especially for some on the autistic spectrum.

2: Active Participation
Active participation is a great motivator but can be difficult for children who face severe multiple difficulties. They cruise through the day as a passive passenger, never needing to pay attention to where they are going or why. They are cared for and entertained regardless of their participation level. This happens sometimes in inclusive settings where the main objective is social exposure and it can happen in a specialist setting, where the routine may be so structured and predictable that there is little room for change or surprise. But think of ways in which it can happen for each individual.

The problem is that learning is less likely to take place when the child is in a passive role. The research is clear that active learning is vastly more effective for all children. So we need to think outside the box and create participation opportunities within activities.

While children cannot often have control of the sequence of the daily routine, there can be opportunities within routines that affect them – if you create them.

3: Multiple Modalities
Children with disabilities often have weaknesses in one or more areas of sensory processing. As they are not being able to move their bodies into position to see, hear or feel what they would like, this problem is compounded. Processing information is often easier and more effective when presented through a variety of modalities such as sight, sound touch and movement.

When communication is difficult, it is especially important to enhance the auditory component of language with other modalities.
It is important for children to experience language receptively that utilizes multiple modalities. Using picture communication symbols, voice-output and sign language as input can provide multi-sensory information for cognitive processing.

4: Natural Contexts
Learning takes place most effectively within the context of a meaningful event and not in an isolated drill and practice session. Help children relate what they already know to the new information – thus increasing
motivation and retention. The natural context provides meaningful opportunities for practice with natural variability to maintain interest.
When learning is presented in an isolated situation, out of the natural context, there is less for the child to associate with and fewer opportunities for practice. Augmentative systems need to be seen by the child as a natural means for communication. This is another reason that the systems must be used by others, while communicating to the child.
A variety of communicative functions need to be modelled in appropriate pragmatic contexts. Children’s attempts to communicate also need to be responded to and expanded upon using the same systems that the child is using.
• Provide activity specific vocabulary on augmentative communication devices.
• Focus on function – not ability to use a particular device

A corollary of natural context is natural consequences. It is important for all children to learn the natural consequences of actions, but all too often the natural consequences of the actions or choices of disabled children are prevented from happening by those who care for them. If you eat your packed lunch at 10 in the morning, you won’t have it at lunchtime; if you refuse to put you coat on you will feel cold. Obviously natural consequences have to be carefully managed so that a child is not put at risk. However, overprotection from them creates total passivity and prevents the growth and development of the individual.

The thinking behind inclusive education

A person can be defined as having a disability if he or she finds it difficult or impossible to carry out some everyday activities that someone the same age, sex and social context would be expected to be able to carry out. This means that they need support to do some things and there are some things that they can’t do, but does not mean that they cannot learn or that they cannot achieve and be successful in school and beyond school in vocational training or in employment.

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Shaun has a severe intellectual impairment – he can’t write his name but he can work hard.

There are some big shifts in attitude that have to be made for inclusive education to succeed. These include:
• The change from thinking that all children with disabilities need separate services that are very different from the services that other children receive. Children with disabilities can often benefit more fully from receiving regular services alongside other children of the same age, with support if they need it. Being included in this way is a better preparation for adult life than being in a service which is totally separate. A few children will always need largely separate provision because of the severity or complexity of their needs, but they can benefit from contact with other children in less formal situations such as games, drama or music – but they need to be properly included, not just present.
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Danijela has cerebral palsy  – and a master’s degree

•The change from thinking about what disabled people cannot do, to thinking about what they can do – particularly with the correct support.

Once everyone in the education service, parents and members of local communities believe that many children with disabilities should be educated in local mainstream schools and that this can be achieved successfully, they can concentrate on how to do this successfully.
It is important that children with disabilities are not thought of only in terms of their disability or there diagnosis. They should also be seen as individuals who are not necessarily like other children with the same diagnosis. They more like other children without disabilities than different from them, with their own unique personality, likes and dislikes, interests, talents and needs for support. Two children with Down’s Syndrome or with cerebral palsy will be very different from each other and may have more in common with a child without a disability than with each other.
Modern technology is enabling people with disabilities to achieve in ways that would not have been possible in the past and it should be used wherever possible.
Everyone concerned with children should think about their own current experience, and about what has to be done to bring about the changes in attitude which are described here? How could the changes in attitude described above be supported? Which people are in the best position to support the changes? What could each individual to encourage attitude change?

What is ordinary life like for disabled children and their families in Pennsylvania U.S.A.?

The following story is deeply disturbing, not only because of the individual circumstances but because it seems that the family had a least two disabled children who didn’t go to school and who seems to have received no other services. Other reports mention at least one other child who is deaf. How can one of the riches counties in the world allow families to live like this?

This story has a particular resonance for me because my son Shaun has the same syndrome as the dead child. Shaun was very violent and difficult to manage as an 8 year old, but he attended a special school; attended a special adventure playground on Saturdays and during school holidays; and was a member of the Boys’ Brigade. Our life was difficult but service were there in the UK.

The mother of an 8-year-old Pennsylvania boy whose decomposing body was found on the third floor of their home said Saturday she didn’t know he had died until noticing the smell.
Kimberly Tutko said her husband was the primary caretaker of their mentally disabled son, and he waited several days to tell her the boy had died, Pennlive.com (http://bit.ly/1rXiJbV) reported. Police were called to the home Friday and found the boy’s body.
Police charged Jarrod Tutko, 38, on Saturday with child endangerment, concealing the death of a child and abuse of a corpse. Court records do not list an attorney for him.
Harrisburg police said in a statement that Tutko informed his wife about the death of their son, Jarrod Tutko Jr., “when the odour of decomposition became too strong.”
It’s not clear how the boy died. An autopsy is scheduled for next week.
The couple’s five other children were placed in protective custody.
Kimberly Tutko told Pennlive she understands people will find it difficult to believe she did not know her son was dead.
She said her son was severely mentally disabled and often difficult to control. He would rip up the flooring and carpeting of his bedroom, smear his feces on the floor and walls, and refuse to wear a diaper, she said. He had Fragile X syndrome which can cause severe intellectual disability and behaviour which is very difficult to manage.
He lived on the third floor and was primarily cared for by his father, while she looked after another disabled child who requires round-the-clock care and stays on the second floor, she said.
“My daughter relies on me,” Kimberly Tutko said. “I take care of her and my husband takes care of Jarrod Jr.”
Kimberly Tutko said her husband told her their son died Tuesday.
“I said to him ‘Why didn’t you say anything?'” she said. “He said he was too afraid to say anything because of other kids in the house.

It’s time to make hate crime against disabled people more visible

Hate crimes against people with disabilities are widespread and often involve extraordinary levels of sadism. The first step in combating these shameful incidents is an acknowledgment that they exist. They are often unacknowledged and unreported.

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In Scotland a disabled man who has twice been the victim of serious assaults has urged other hate crime victims to be brave and go to the police.Stephen Cruickshank, 56, was tipped out of his wheelchair and kicked and spat on in separate terrifying attacks.The ex-pub boss admits he did not report the incidents because he was so traumatised.

Stephen suffers from spinal neuropathy and he struggles to walk, relying on his wheelchair to get around.
Last year a group of thugs tipped him out and ran off with his chair as he lay helpless on the pavement in Rutherglen, Glasgow.
In another incident, he had his walking sticks kicked away by a group of men who then kicked and spat on him while Christmas shopping.Workmen came to his rescue and urged him to contact police – but he refused and headed home.

Four years ago, Stephen got a severe kicking in Glasgow city centre as he struggled into town to buy Christmas presents for his wife Morven and daughter Hayley, now 10.“The attack was so vicious, I thought I’d never get up again.”
But now Stephen, who’s involved in a Police Scotland-backed scheme aimed at helping hate crime victims, says it’s time to take on the bullies.

Earlier this month it was revealed that there had been a 12 per cent increase in the number of reported crimes against the disabled.
But Stephen claims that many more incidents go unreported.
He reckons only one in five disability hate crimes are ever investigated by police. “The scandal here isn’t the increase, it’s the fact that so few of us report these crimes.
“I talk to so many disabled people across Scotland and there are lots of reasons why they don’t report crimes committed against them.
“People are scared of reprisals because often their abusers aren’t strangers.“Disabled people can be victimised by their friends, or even family members.”

Stephen now works at a Third Party Reporting initiative, which is backed by Police Scotland.
Helpers submit reports of hate crime to police on the victim’s behalf.
Stephen spends several days each week supporting other disabled people.

In the USA in February 2010, Jennifer Daugherty, a 30-year-old, mentally challenged woman from Greensburg, Pa., was brutally people pretending to be her good friends. Holding her hostage for days, the perpetrators allegedly tortured her, shaving her head, binding her with Christmas decorations, beating her with a towel rack and vacuum cleaner, feeding her detergent, urine and various medications and then forcing her to write a suicide note, before stabbing her to death.
The sadistic attack on Daugherty was anything but unique. Still, few Americans are aware of the special vulnerability of people with emotional, intellectual and physical disabilities to extraordinary violence.

Thirty-two states have hate crime statutes to protect people who have disabilities, but 18 states still do not.
Attacks on people with disabilities are often overlooked because many people are not aware of the extreme vulnerability to maltreatment that accompanies such disorders as cerebral palsy, autism, multiple sclerosis, learning disabilities and mental illness — even though, according to anonymous victim accounts from the Bureau of Justice Statistics, the 54 million Americans with disabilities experience serious violence at a rate nearly twice that of the general population. Their risk of being a victim of sexual assault is at least four times higher than that of people without disabilities. In 2008 alone, Americans with disabilities were victims of about 47,000 rapes, 79,000 robberies, 114,000 aggravated assaults and 476,000 simple assaults. Adding to the trauma of victimization, people with disabilities are much less likely than able-bodied victims to seek medical treatment for their injuries, often choosing, instead, to suffer in silence.

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The project Children with disabilities: targeted violence and hostility is currently looking at hostility, including violence, towards children with disabilities across the EU. It seeks to identify the legal and policy framework, as well as determine how information about such hostility is being collected. In addition, the project will look for examples of promising practices of how some Member States are addressing the problem. A report and comparative studies will be published this year (2014)