'Helping combat isolation and other unique challenges faced by families in Health, Educational, Social and Economic aspects of life.'

Conditions

Autism

What is it?

Autistic Spectrum Disorder (ASD) is a condition that affects social interaction, communication, interests and behaviour.

The symptoms are present before three years of age, although a diagnosis can be made after the age of three.

It is estimated that 1 in every 100 people in the UK has ASD. It is more common in boys than girls.

There are six sub-groups of the Autistic Spectrum (Baron-Cohen S., 2008).

Asperger's Syndrome is where IQ is Above 85 and there is no language delay.
High-functioning Autism is where IQ is above 85 and there is language delay.
Medium-functioning Autism is where IQ is 71 to 84 with or without language delay.
Low-functioning Autism is where IQ is 70 or less with or without speech delay.
Atypical Autism is either atypical because of late onset or atypical because of having only one rather than two of the core features.
Pervasive developmental disorder not otherwise specified is where the features are too mild to warrant a clear-cut diagnosis of Autism or Asperger's Syndrome but where the individual has more than the usual number of Autistic traits.

Symptoms

The main symptoms include:

  • Difficulty with social interaction and communication.
  • Difficulty to understand emotions and feelings of others.
  • Lack awareness and interest in other people.
  • Delayed language development.
  • Struggle with eye contact and body language.
  • Desire to stick to the same daily routine.
  • May twist or flick fingers a sign of excitement or upset.
  • May engage in repetitive activity such as turning on and off light switches.

Advice for parents

Advice provided for parents include:

1. Take care of yourself.
This is a necessity, not an act of luxury or selfishness. Being physically and emotionally strong makes it possible for you to be the best parent you can be to your child in need.

2. Seek help as soon as you suspect something is wrong. Early intervention is the most effective way to speed up your child's development and reduce the symptoms of autism over the lifespan.

3. Learn about Autism.

4. Become an expert on your child.

5. Accept your child, quirks and all. Celebrate small successes and stop comparing your child to others. Feeling unconditionally loved will help your child more than anything else.

6. Don't give up. Like everyone else, People with Autism have an entire lifetime to grow and develop their abilities.

Diagnosis

Most of the symptoms can be recognised in early childhood but some symptoms may not be noticeable until there is a change of situation.

Seeing the GP or health visitor about any concerns you have about your child’s development is a good start.

It may also be helpful to discuss concerns with the child’s nursery or school.

Causes

Most researchers believe that certain genes a child inherits from their parents could make them more vulnerable to developing ASD.

Cases of ASD have been known to run in families. For example, younger siblings of children with ASD can also develop the condition, and it's common for identical twins to both develop ASD.

Dyspraxia

What is it?

Dyspraxia, also known as Developmental Co-ordination Disorder (DCD), is a condition affecting physical co-ordination that causes a child to perform less well than expected in daily activities for his or her age, and appear to move clumsily.

DCD is thought to be around three or four times more common in boys than girls, and the condition sometimes runs in families.

The condition often causes continued problems into adulthood.

Symptoms

The main symptoms include:

  • Early developmental milestones of crawling, walking, self-feeding and dressing may be delayed in young children with DCD.
  • Drawing, writing and performance in sports are usually behind what is expected for their age.
  • Although signs of the condition are present from an early age, children vary widely in their rate of development.
  • DCD is not usually definitely diagnosed until a child with the condition is around five years old or more.

Advice for parents

1. Try activities which involve the whole family equally.

2. Encourage each child to develop their own hobbies and interests so that comparisons are irrelevant.

3. Talk to your partner about the problems and be open about how you both feel about them.

4. Try to arrange time each week to concentrate on your child and your partner.

5. Take time for yourself and keep in touch with your friends.

6. Join a local support group.

7. It is really important to recognise that it is nobody’s fault and not to blame yourself!

Diagnosis

Talk to your GP or health visitor if you have concerns, or the special educational needs coordinator at your child’s school.

If necessary, they can refer the child to a community paediatrician who will assess them and try to identify any developmental problems.

Causes

A number of risk factors that can increase a child's likelihood of developing DCD have been identified:

These include:

  • being born prematurely – before the 37th week of pregnancy.
  • being born with a low birth weight.
  • having a family history of DCD – although it is not clear exactly which genes may be involved in the condition.
  • the mother drinking alcohol or taking illegal drugs while pregnant.

ADHD

What is it?

Attention Deficit Hyperactivity Disorder (ADHD) is a group of behavioural symptoms that include inattentiveness, hyperactivity and impulsiveness.

Symptoms of ADHD tend to be noticed at an early age and may become more noticeable when a child's circumstances change, such as when they start school. Most cases are diagnosed when children are 6 to 12 years old.

The symptoms of ADHD usually improve with age, but many adults who are diagnosed with the condition at a young age continue to experience problems.

People with ADHD may also have additional problems, such as sleep and anxiety disorders.

Advice for parents

Plan the day so your child knows what to expect. Set routines can make a difference to how a child with ADHD copes with everyday life.

Make sure everyone knows what behaviour is expected, and reinforce positive behaviour with immediate praise or rewards. Be clear, using enforceable consequences if boundaries are overstepped.

Give specific praise. Instead of saying a general, "Thanks for doing that," you could say, "You washed the dishes really well. Thank you."

Watch for warning signs. If your child looks like they're becoming frustrated, overstimulated and about to lose self-control, intervene.

Make sure your child gets lots of physical activity during the day. Walking, skipping and playing sport can help your child wear themselves out and improve their quality of sleep.

Symptoms

The symptoms of attention deficit hyperactivity disorder (ADHD) can be categorised into two types of behavioural problems.

These categories are:

  • Inattentiveness
  • Hyperactivity and impulsiveness

Most people with ADHD have problems that fall into both these categories, but this isn't always the case.

Inattentiveness

The main signs of inattentiveness are:

  • Having a short attention span and being easily distracted.
  • Making careless mistakes – for example, in schoolwork.
  • Appearing forgetful or losing things.
  • Being unable to stick at tasks that are tedious or time-consuming.
  • Appearing to be unable to listen to or carry out instructions.
  • Constantly changing activity or task.
  • Having difficulty organising tasks.


Hyperactivity and impulsiveness

The main signs of hyperactivity and impulsiveness are:

  • Being unable to sit still, especially in calm or quiet surroundings.
  • Constantly fidgeting.
  • Being unable to concentrate on tasks.
  • Excessive physical movement.
  • Excessive talking.
  • Being unable to wait their turn.
  • Acting without thinking.
  • Interrupting conversations.
  • Little or no sense of danger.

Diagnosis

You should consider raising your concerns with your child's teacher, their school's special educational needs co-ordinator (SENCO) or GP if you think your child’s behaviour may be different to most children their age.

Causes

The exact cause of ADHD is unknown, but the condition has been shown to run in families.

Other factors suggested as having a role include:

  • being born prematurely (before the 37th week of pregnancy).
  • having a low birthweight.
  • smoking, alcohol or drug abuse during pregnancy.

Down's Syndrome

What is it?

Down's Syndrome, also known as Down syndrome, is a genetic condition that typically causes some level of learning disability and characteristic physical features.

Around 775 babies are born with the condition each year in England and Wales.

People with Down's syndrome also vary in personality and ability. Everyone born with Down's syndrome will have a degree of learning disability, but the level of disability will be different for each individual.

Advice for parents

Although there is no cure for Down's syndrome, there are ways to help children with the condition develop into healthy and fulfilled individuals who are able to achieve the level of independence right for them. This includes:

  • Access to good healthcare, including a range of different specialists
  • Early intervention programmes to provide support for children and parents
  • Good parenting skills and an ordinary family life
  • Education and support groups to provide information and help for parents, friends and families
  • Downs Syndrome Association

A number of different professionals experienced in caring for children with Down's syndrome will be able to help you with any difficulties you or your child are having.

Many parents find it reassuring to talk to other parents. The Down's Syndrome Association can put you in touch with another family who can share their experiences with you, offer you advice, and talk through any fears or concerns you may have. They can also provide information about all aspects of living with Down's syndrome.

Symptoms

The main symptoms include:

People with Down's syndrome often have certain physical characteristics. Not everyone will have all of them, but they may include:

  • Reduced muscle tone that results in floppiness (Hypotonia).
  • A small nose and flat nasal bridge.
  • A small mouth with a protruding tongue.
  • Eyes that slant upwards and outwards.
  • A flat back of the head.
  • A big space between the first and second toe (sandal gap).
  • Broad hands with short fingers.
  • Their palm may have only one crease across it (single transverse palmar crease).
  • Below-average weight and length at birth.

All children with Down's syndrome have some degree of learning disability and delayed development, but this varies widely between individual children.

Children with the condition may be slower to learn skills such as:

  • Reaching
  • Sitting
  • Standing
  • Walking
  • Talking

A child with Down's syndrome will gain these skills eventually – it simply takes more time.

Diagnosis

In some cases, babies with the condition are identified before birth as a result of screening for Down's syndrome.

Screening tests can't tell you for definite if your baby has Down's syndrome, but they can tell you how likely it is. If screening suggests there is a chance your baby does have Down's syndrome, further tests can be carried out during pregnancy to confirm it.

If testing indicates your child will be born with Down's syndrome, you should be offered genetic counselling to allow you and your partner to discuss the impact of the diagnosis.

Causes

Down's syndrome is caused by the presence of an extra copy of chromosome 21 in a baby's cells.

In the vast majority of cases, this isn't inherited and is simply the result of a one-off genetic change in the sperm or egg.

Global Developmental Delay

What is it?

Global Developmental Delay (GDD) is the general term used to describe a condition that occurs during the developmental period of a child between birth and 18 years. It is usually defined by the child being diagnosed with having a lower intellectual functioning than what is perceived as ‘normal’. It is usually accompanied by having significant limitations in communication. It is said to affect about 1-3% of the population.

Symptoms

The most common signs of GDD include:

  • The child is unable to sit on the floor without support by 8 months.
  • The child is unable to crawl by 12 months.
  • The child has poor social skills/ judgment.
  • The child is unable to roll over by 6 months.
  • The child has communication problems.
  • The child has fine/ gross motor difficulties.
  • The child shows aggressive behaviour as a coping skill.

In some children GDD is suspected soon after birth because of feeding difficulties or muscle-tone. In others it is suspected later when learning or behaviour difficulties occur at school.

Advice for parents

1. Use your Personal Child Health Record to record your child’s achievements and at what age they occurred. This can be a useful aid when discussing your concerns with health professionals.

2. If you don’t understand what you are being told, say so and ask them to explain it again. Don’t be afraid to ask questions, however silly or insignificant you think they may seem.

3. Spend time having fun with your child and enjoy what they can do.

4. Don’t forget your friends and your family too! Include them in discussions right from the start so they can learn and understand with you.

5. Take someone with you who can take notes while you talk.

6. You should not have to wait for a diagnosis before getting support for your child’s development. Talk to your GP, health visitor, children’s centre and, if your child is in nursery or school, talk to the Special Education Needs Coordinator about what help can be provided.

Diagnosis

Specialists will consider all the different areas of concern for your child and think about the most likely reasons for their difficulties. They might carry out tests to rule out possible causes or to confirm what the reasons are. They may even find a name or ‘diagnosis’ for the condition. However, different conditions can cause similar symptoms and it is not always possible to test for all of these. It might be necessary to wait to see if your child makes progress in their development, or for other symptoms to appear that will help in making a diagnosis.

Children can sometimes wait for years for a diagnosis and some never get a diagnosis, but support is still available for them even without a diagnosis. Some parents can find this a worrying time. Not having a diagnosis for a child’s condition can seem worse than knowing and parents are often bewildered by what could be the cause.

Williams Syndrome

What is it?

Williams Syndrome (WS) is a genetic condition that is present at birth and can affect anyone. It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning disabilities. These often occur side by side with striking verbal abilities, highly social personalities and an affinity for music.

Many babies have life-threatening cardiovascular problems. Children with WS need costly and ongoing medical care and early interventions (such as speech or occupational therapy).

As adults, most people with Williams syndrome will need supportive housing to live to their fullest potential.

Symptoms

The main symptoms include:

Most young children with Williams syndrome are described as having similar facial features. These features include a small upturned nose, long philtrum (upper lip length), wide mouth, full lips, small chin, and puffiness around the eyes. Blue and green-eyed children with Williams syndrome can have a prominent "starburst" or white lacy pattern on their iris. Facial features become more apparent with age.

The majority of individuals with Williams syndrome have some type of heart or blood vessel problem.

Some young children with Williams syndrome have elevations in their blood calcium level.

Most children with Williams syndrome have a slightly lower birth-weight than their brothers or sisters. Slow weight gain, especially during the first several years of life, is also a common problem and many children are diagnosed as "failure to thrive".

Many infants and young children have feeding problems. These problems have been linked to low muscle tone, severe gag reflex, poor suck/swallow, tactile defensiveness etc.

Advice for parents

  • Address whatever physical disabilities/problems your child is having.
  • If your child has Williams syndrome, it’s easy to get caught up in looking after them. But it’s important to look after your own wellbeing too. If you’re physically and mentally well, you’ll be better able to care for your child.
  • Learning as much as possible from your health specialists will help. It’s OK to ask lots of questions.

Diagnosis

The diagnosis of Williams syndrome generally has two parts:

  • Clinical diagnosis based on a variety of characteristics.
  • Medical/genetic test confirmation through a DNA test which will be performed on a small amount of blood from the child.

You can obtain a blood test to confirm the clinical diagnosis of Williams syndrome. A laboratory can use the technique known as fluorescent in situ hybridization (FISH).

A chromosomal microarray is a new diagnostic tool which uses millions of markers to determine if there are missing pieces or extra pieces of DNA anywhere in the person’s chromosomes. This test is slower but gives more information about how big the missing piece is, and that may affect how severe the child’s condition will be.

Causes

Babies with Williams syndrome are born without certain genes. The symptoms they have depend on the genes they're missing.
In a small number of cases, babies inherit the genetic deletion from a parent with the condition, but it is usually a random disorder in the genes.

Auditory Processing Disorder

What is it?

Auditory Processing Disorder (APD) is a hearing or listening problem caused by the brain not processing sounds in the normal way.

Children with the problem may also have difficulty responding to sounds, understanding things they're told, concentrating, and expressing themselves with speech. Their reading and spelling may also be affected.

Auditory processing disorder affects people of all ages. Many cases start in childhood, although it sometimes can develop in adults.

It's not clear exactly how many people have auditory processing disorder, but it's thought up to 1 in every 20 children may have it to some degree.

Symptoms

It can affect your ability to:

  • Pinpoint where a sound is coming from.
  • Tell which sound comes before another.
  • Distinguish similar sounds from one another – such as "seventy" and "seventeen".
  • Understand speech – particularly if there's background noise, more than one person speaking, the person is speaking quickly, or the sound quality is poor.
  • Remember instructions you've been told.
  • Enjoy music.

Advice for parents

  • You may be advised to try special activities to help train your brain to analyse sound better, known as auditory training. This can be done either on your own, with a professional, or with the help of a computer programme or CD.
  • It can involve a range of tasks, such as identifying sounds and guessing where they're coming from or trying to focus on specific sounds when there's some slight background noise. The tasks can be adapted for people of different ages, with children often learning through games or from reading with their parents.
  • Be aware of room acoustics and how they affect you. Rooms with hard surfaces will cause echoes, so rooms with carpets and soft furnishings are best. Switch off any radios or televisions and move away from any noisy devices such as fans.

Diagnosis

You should visit your GP if you think you or your child may have a hearing problem such as auditory processing disorder. They may refer you to an audiologist (hearing specialist) for some tests.

The tests used may include:

Once auditory processing disorder is diagnosed, you'll be advised about ways you can adapt to the problem.

  • Hearing tests – you or your child will be asked to listen to a variety of sounds and respond to them.
  • Questionnaires – you or your child may be asked questions such as, "If a friend or family member shouts your name, do you know who is calling without looking to see?"
  • Electrode tests – an earbud or headphones are placed in your ear and electrodes are placed on your head to measure your brain's response to sound.
  • Speech and language assessments and cognitive (thinking) assessments.

Causes

Exactly what causes auditory processing disorder isn't fully understood. Sometimes a possible underlying factor is identified, but not always.

In children, the condition may occur after a persistent hearing problem at a young age which has since passed but has had a permanent effect on how the brain processes sound. It may also be caused by a genetic defect, as some cases seem to run in families.

Visual Impairment

What is it?

In the UK, there are almost 2 million people living with sight loss. Of these, around 360,000 are registered as blind or partially sighted.

Vision impairment is a condition that prevents normal vision in one or both eyes. There are different degrees of vision impairment from mild loss to total blindness (no reaction to light).

If you're blind or partially sighted, you may be referred to a specialist low-vision clinic, which is often located within a hospital. Staff at the clinic can help you understand your condition and come to terms with your diagnosis.

A person's level of vision (or sight) may remain the same over time or it may change. Eye sight will get worse as part of some conditions, such as Retinitis Pigmentosa and untreated cataracts.

Advice for parents

  • For serious vision impairment, attention to the placement of furniture is important.
  • Ensure that big or bulky furniture or furniture with sharp edges is not placed near regular walkways.
  • Families can develop helpful habits, for example, making sure that doors and drawers are not left open and that kitchen or dining chairs are pushed under tables.
  • For children who have low vision, you can make the home safer by checking that lighting is appropriate in every area.
  • Depending on the needs of your child, teachers may get extra help in the preschool or classroom. They may also receive advice from visiting specialist teachers. Parents can help teachers by giving them all necessary and up-to-date information about their child's vision. This will aid teachers in choosing appropriate teaching methods.

Reference and Further links

Causes

Particularly injuries to the cornea are the commonest cause of vision loss.

Sometimes if the mother has had a viral infection like German measles that is transmitted from the mother to the developing fetus during pregnancy the baby may be born with blindness or visual impairment.

Cataracts prevent light from easily passing through the lens, and this causes loss of vision. Cataracts are clouding of part or the entire lens of the eye.

Glaucoma can also cause vision impairment. This condition results due to raised pressure within the eyes. The increased pressure impairs vision by damaging the optic nerve.

PDA

What is it?

People with Pathological Demand Avoidance Syndrome (PDA) will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control.

PDA is increasingly recognised as part of the autism spectrum.

The central difficulty for people with PDA is their avoidance of the everyday demands made by other people, due to their high anxiety levels when they feel that they are not in control. Many children avoid demands to some extent, but children with PDA do so to a far greater level than is considered usual.

Symptoms

The main features of PDA are:

  • Obsessively resisting ordinary demands.
  • Appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on).
  • Excessive mood swings, often switching suddenly.
  • Comfortable (sometimes to an extreme extent) in role play and pretending.
  • Language delay, seemingly as a result of passivity, but often with a good degree of 'catch-up'.
  • Obsessive behaviour, often focused on people rather than things.

People with PDA can be controlling and dominating, especially when they feel anxious and are not in charge. They can, however, be enigmatic and charming when they feel secure and in control.

Advice for parents

1. Have flexibility in your approach at home but having boundaries is equally as important.

2. Accept that some days their anxiety is so high they will struggle to accept most demands, even ones others might not view as a ‘demand’, so reduce pressure.

Diagnosis

A diagnosis is the formal identification of PDA, usually by a professional such as a paediatrician, psychologist or psychiatrist. Recognition of PDA as a condition is fairly recent, and the apparent social abilities of many children with PDA may mask their problems. As a result, many children are not diagnosed until they are older.

They may already have had a suggested diagnosis of autism or Asperger's Syndrome but parents may feel that something about that diagnosis didn't quite fit. It is usually the surface sociability and the often vivid imaginations of children with PDA which confuse professionals regarding the autism spectrum diagnosis.

Causes

The exact cause of PDA is still being investigated. We do know that, as in Autism and Asperger's Syndrome, it is linked to a hard-wiring problem in the brain. It is likely to be caused by a combination of factors, genetic and environmental, which may account for changes in brain development.

It is important to remember that PDA is not caused by a person's upbringing or their social circumstances and it is not the fault of the parents or the individual with the condition.

Speech Delay

What is it?

Language Delay may affect what the child can say (expressive language), and/or what the child can understand (receptive language) and may be accompanied by other speech, language and communication needs (SLCN), for example unclear speech (phonological delay). Language is following the typical developmental pattern but at a slower rate.

Language delay may form part of a more general developmental delay or may be an isolated delay where other areas of development follow the norm.

There may be a variety of possible causes or linked factors for language delay including environmental factors, genetic factors and physical factors (for example early fluctuating hearing loss).

Developmental Language delay is also known as Specific language impairment (SLI).

The language of children is considered as ‘delayed’ when they continue to make common mistakes and when language is developing slowly in the usual order of language development.

The language of children who make rare mistakes or whose language is developing in an unusual order is called ‘disordered’.

Specific Language Impairment is used with children whose difficulties are with Speech and Language only. It does not include children who do not develop language because of intellectual, Physical disability, hearing loss, emotional problems or environmental deprivation. Some examples of SLI are stammering and Aphasia or Dysphasia.

Symptoms

  • Phonics screening check should be administered in a room without distractions and by an adult who the child knows well and can give lots of praise.
  • Give as long as necessary for a response
  • Give the instructions in short sentences.
  • A child with delay in expressive language may lack the ability or confidence to respond accurately and may not have the ability to communicate this to the tester. They may remain silent or give unrelated responses.
  • Test results that indicate a need for intense emphasis on development of phonics may mask the need to enrich the child’s language as a priority. The risk of emphasising phonics too much too soon will impact on the development of literacy.

Advice for parents

Children with language delay may have difficulties in any or all the previous building blocks. They may need a targeted intervention to support these skills and will certainly need an enriched language environment and opportunities to practice the building blocks of language and literacy, such as:

  • Turn taking, attention and listening games.
  • Games and opportunities to develop the child’s ability to remember what’s been said and what they want to say.
  • Developing the vocabulary the child understands and can use.
  • Expanding the sentences the child understands and uses through play, games and ‘talk time’ opportunities.
  • Expanding opportunities to develop oral narrative-storytelling and story acting at the child’s own level.
  • Building confidence to use language in conversation and interactions with others.
  • Enabling small group opportunities to develop any of the areas listed.

Causes

Developmental Speech and language disorder is a common reason for speech/language problems in children.  This is a learning disability that is caused by the brain working differently. These children may have trouble producing speech sounds, using spoken language to communicate, or understanding what other people say.  Speech and language problems are often the earliest sign of a learning disability.

Dyslexia

What is it?

Dyslexia is a common learning difficulty that can cause problems with reading, writing and spelling.

It's a "specific learning difficulty", which means it causes problems with certain abilities used for learning, such as reading and writing. Unlike a learning disability, intelligence isn't affected.

Dyslexia is a condition that affects the ability to process language. It is a learning difficulty that primarily affects the skills in accurate and fluent word reading and spelling. In some cases, problems may manifest themselves in mathematics.

Individuals who have difficulties in deciphering written words may also have difficulty in learning sets of facts, notation, and symbols that are used in mathematics. This pattern of abilities and weaknesses is what is known as ‘specific learning difficulties’.

Symptoms

The main signs include:

  • Signs of Dyslexia usually become apparent when a child starts school and begins to focus more on learning how to read and write.
  • A person with dyslexia may:
  • Read and write very slowly.
  • Confuse the order of letters in words..
  • Put letters the wrong way round – such as writing "b" instead of "d"
  • Have poor or inconsistent spelling.
  • Understand information when told verbally, but have difficulty with information that's written down.
  • Find it hard to carry out a sequence of directions.
  • Struggle with planning and organisation.
  • However, people with dyslexia often have good skills in other areas, such as creative thinking and problem solving.

Advice for parents

1. Notice your child's success and focus on their strengths.

2. Celebrate every success.

3. Be honest with yourself; Set realistic goals.

4. Don't let poor spelling stop your child. Spell checks are great!

5. Share your own difficulties with your child.

6. Read aloud to your child - it's fun and helpful.

7. Children feel supported when they see parents and teachers working together to help them.

8. Small steps can bring big improvements.

9. It's OK to read slowly.

10. Teach them how to help themselves e.g. how to ask for help.

Diagnosis

The first step is to speak to the school’s Special Needs Coordinator about your concerns who may be able to offer additional support.

If your child is still struggling with the extra support, you may want to request a more in-depth assessment from a specialist dyslexia teacher.

Causes

Dyslexia isn't related to a person's general level of intelligence. Children and adults of all intellectual abilities can be affected by dyslexia.

The exact cause of dyslexia is unknown, but it often appears to run in families.

In people with dyslexia, it's thought that certain genes inherited from your parents may act together in a way that affects how some parts of brain develop during early life.

Dyscalculia

What is it?

Dyscalculia is usually perceived of as a specific learning difficulty for mathematics, or, more appropriately, arithmetic. 

Developmental Dyscalculia (DD) is a specific learning disorder that is characterised by impairments in learning basic arithmetic facts, processing numerical magnitude and performing accurate and fluent calculations. These difficulties must be quantifiably below what is expected for an individual’s chronological age, and must not be caused by poor educational or daily activities or by intellectual impairments.

Individuals with Dyscalculia lack the intuitive grasp of numbers and have problems learning number facts and procedures. Even if they produce a correct answer or use a correct method, they may do so mechanically and without confidence.

Symptoms

Typical symptoms of dyscalculia:

  • Has difficulty when counting backwards.
  • Has a poor sense of number and estimation.
  • Has difficulty in remembering ‘basic’ facts, despite many hours of practice/rote learning.
  • Has no strategies to compensate for lack of recall, other than to use counting.
  • Has difficulty in understanding place value and the role of zero in the Arabic/Hindu number system.
  • Has no sense of whether any answers that are obtained are right or nearly right.
  • Tends to be slower to perform calculations. Forgets mathematical procedures, especially as they become more complex, for example ‘long’ division.
  • Addition is often the default operation. The other operations are usually very poorly executed (or avoided altogether).
  • Avoids tasks that are perceived as difficult and likely to result in a wrong answer.
  • Weak mental arithmetic skills.
  • High levels of mathematics anxiety.

Advice for parents

There aren’t specific therapies for kids with dyscalculia. But you may want to explore educational therapy . This type of therapy helps kids with different kinds of learning and attention issues develop strategies for working around their issues and dealing with frustration. An educational therapist may be able to help your child get better at working with numbers.

The more you and your child’s teachers work together to provide support and accommodations , the better the odds that your child will work through his challenges and succeed in math.

Talk with your child about their learning differences. Discuss ways they can ask for help for their dyscalculia in grade school or middle school . Learning to self-advocate is a skill that can offer benefits throughout their lifetime.

Diagnosis

Recent research has identified the heterogeneous nature of mathematical learning difficulties and dyscalculia, hence it is difficult to identify via a single diagnostic test.

Diagnosis and assessment should use a range of measures, a test protocol, to identify which factors are creating problems for the learner. Although on-line tests can be of help, understanding the difficulties will be better achieved by an individual person-to-person diagnostic, clinical interview.

Causes

There are many possible causes, including both genetic and environmental, and an interaction of the two. The cause for one individual may not be the same as for another, and in many cases it may not be obvious.

Known environmental causes include alcohol consumption during pregnancy, and pre-term birth. Both of these can result in underdevelopment of the brain.

Dyscalculia often co-occurs with other learning difficulties such as dyslexia, dyspraxia, attention deficit and hyperactivity disorder (ADHD), and specific language impairment (SLI). This is probably because both environmental and genetic factors which affect brain development are likely to act on several areas of the brain at once.

Mild Learning Disabilities

What is it?

A learning disability is a reduced intellectual ability and difficulty with everyday activities – for example household tasks, socialising or managing money – which affects someone for their whole life.

People with a learning disability tend to take longer to learn and may need support to develop new skills, understand complicated information and interact with other people.

Profound Multiple Learning Disability

A diagnosis of a Profound and Multiple Learning Disability (PMLD) is used when a child has more than one disability, with the most significant being a learning disability.

Many children diagnosed with PMLD will also have a sensory or physical disability, complex health needs, or mental health difficulties. People with PMLD need a carer or carers to help them with most areas of everyday life, such as eating, washing and going to the toilet.

Symptoms

A GP usually makes a diagnosis of a learning disability, but it is often parents or teachers who first become aware that a child is having difficulties in certain areas. A learning disability may be diagnosed in various ways:

  • A learning disability may be diagnosed at a developmental check. All children have checks to monitor their growth rate and highlight any health problems. Health visitors and GPs will also look at what age the child is reaching their development milestones, such as learning to talk and developing physical skills.
  • Diagnosis may be made through psychological checks. These tests look at the child’s ability and compare it with what is considered typical for a child of that age.
  • A learning disability may be identified by your child’s teacher.
  • A clinical psychologist may be able to diagnose an adult’s learning disability, by assessing their level of understanding.

Different Types?

There are different types of learning disability, which can be mild, moderate or severe. In all cases a learning disability is lifelong.

It can be difficult to diagnose a mild learning disability as the individual will often mix well with others and will be able to cope with most everyday tasks. However, they may need support in other areas of their life such as filling out forms.

People with a severe learning disability or profound and multiple learning disability (PMLD), will need more care and support with areas such as mobility, personal care and communication. People with a moderate learning disability may also need support in these areas, but not definitely.

Causes

A learning disability happens when a person's brain development is affected, either before they are born, during their birth or in early childhood.
Several factors can affect brain development, including:

  • the mother becoming ill in pregnancy  
  • problems during the birth that stop enough oxygen getting to the brain
  • the unborn baby developing certain genes
  • the parents passing certain genes to the unborn baby that make having a learning disability more likely (known as inherited learning disability)  
  • illness, such as meningitis, or injury in early childhood

 Sometimes there is no known cause for a learning disability.

Multiple Sclerosis

What is it?

Multiple Sclerosis (MS) is a condition which can affect the brain and/or spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance.

It's a lifelong condition that can sometimes cause serious disability, although it can occasionally be mild. In many cases, it’s possible to treat symptoms. Average life expectancy is slightly reduced for people with MS.

Symptoms

The symptoms of MS vary widely from person to person and can affect any part of the body.
The main symptoms include:

  • Fatigue.
  • Difficulty walking
  • Vision problems, such as blurred vision
  • Problems controlling the bladder
  • Numbness or tingling in different parts of the body
  • Muscle stiffness and spasms
  • Problems with balance and co-ordination
  • Problems with thinking, learning and planning

Depending on the type of MS you have,  your symptoms may come and go in phases, or get steadily worse over time (progress).

Advice for parents

Having MS doesn't necessarily mean you will need to make any changes to your home, but sometimes the right adaptations can ensure it continues to suit your day-to-day life.

Whether you have MS yourself or you’re close to someone who does, it can throw a lot at you, often without warning.

You don’t have to face it on your own. The MS Society can help you get the right support.
Respite care and short breaks are a valuable opportunity for you and your child to recharge your batteries.

Open discussion of the family’s concerns is important. Having some basic information about MS and how it might affect someone can help.

Diagnosis

Diagnosing MS is complicated because no single test can positively diagnose it. Other possible causes of your symptoms may need to be ruled out first.

It may also not be possible to confirm a diagnosis if you have had only one "attack" of MS-like symptoms. A diagnosis can only be made with confidence once there's evidence of at least two separate attacks, although this may include signs of attacks on an MRI scan that you may not realise you have had.

Causes

MS is an autoimmune condition. This is when something goes wrong with the immune system and it mistakenly attacks a healthy part of the body – in this case, the brain or spinal cord of the nervous system.

In MS, the immune system attacks the layer that surrounds and protects the nerves, called the myelin sheath. This damages and scars the sheath, and potentially the underlying nerves, meaning that messages travelling along the nerves become slowed or disrupted.

Exactly what causes the immune system to act in this way is unclear, but most experts think a combination of genetic and environmental factors is involved.

Cerebral Palsy

What is it?

Cerebral Palsy is the general term for a number of neurological conditions that affect movement and co-ordination.

Advice for parents

Build a support system. Seek out local groups and parent network organizations for families of children with disabilities. Ask your doctor or specialist for referrals. Join an online chat group for parents of children with Cerebral Palsy.

Take care of yourself. You can’t help your child if you are burned out. Make plans to do things you enjoy, such as taking time out to have a night out with friends or family. Planning ahead so that the situation at home is safe for your child prior to going out makes this possible and more beneficial. It is so important to “recharge the batteries.”

Get help. If you or your partner is consistently burned out or depressed, or if you are not getting along, seek help. Having a disabled child can be extremely stressful; it can also put your relationship at risk. Your doctor can refer you to a qualified individual, family, or couple's therapist. It may also be that you are still at an early stage in understanding your child’s condition and the services that are available to help. Finding out more may give an enormous boost to your ability to cope.

Symptoms

The symptoms of Cerebral Palsy normally become apparent during the first three years of a child's life.

The main symptoms are:

  • Muscle stiffness or floppiness (hypotonia).
  • Muscle weakness
  • Random and uncontrolled body movements
  • Balance and co-ordination problems

These symptoms can affect different areas of the body and vary in severity from person to person. Some people only have minor problems, whereas others are severely disabled.

Many people with cerebral palsy also have a number of associated problems, including:

  • Repeated fits or seizures.
  • Drooling problems and swallowing difficulties (dysphagia).

Some people with the condition may have communication and learning difficulties, although intelligence is often unaffected.

Diagnosis

Tests may be recommended to rule out other problems with similar symptoms to cerebral palsy. These can include:

  • A general delay in development.
  • A specific medical condition – such as muscular dystrophy.

In some cases, further testing can also confirm a diagnosis of cerebral palsy. This is because the condition can cause changes to the brain's structure, which can be detected by tests.

Causes

Specifically, cerebral palsy is caused by a problem in the parts of the brain responsible for controlling muscles. The condition can occur if the brain develops abnormally or is damaged before, during or shortly after birth.

Causes of cerebral palsy include:

  • An infection caught by the mother during pregnancy.
  • A difficult or premature birth.
  • Bleeding in the baby’s brain.
  • Changes (mutations) in the genes that affect the brain's development.

Cystic Fibrosis

What is it?

Cystic Fibrosis (CF) is a genetic condition affecting more than 10,800 people in the UK. You are born with Cystic Fibrosis and cannot catch it later in life, but one in 25 of us carries the faulty gene that causes it, usually without even knowing.

The gene affected by CF controls the movement of salt and water in and out of cells. People with Cystic Fibrosis experience a build-up of thick sticky mucus in the lungs, digestive system and other organs, causing a wide range of challenging symptoms affecting the entire body.

Symptoms

Cystic Fibrosis can cause sticky mucus to clog the lungs and airways. This can cause:

  • Recurring chest infections – these occur because mucus in the lungs is an ideal breeding ground for bacteria.
  • Persistent inflammation of the airways, which can cause them to become abnormally widened (bronchiectasis).
  • Increased coughing.
  • Occasional wheezing and shortness of breath.

The mucus can also block parts of the digestive system, which can affect how food travels through the gut and how it's broken down or absorbed.

This can cause:

  • A serious bowel obstruction in the first few days of life (meconium ileus) – this will often need an operation to remove the blockage.
  • Jaundice.
  • Diarrhoea or large, smelly stools.
  • Problems putting on weight and growing – this can occur because the body struggles to digest and absorb nutrients (malnutrition).
  • Diabetes from late childhood or early adulthood – this can develop if the pancreas becomes severely damaged.

Advice for parents

Cystic fibrosis should not be a barrier that stops you from living the life you want - including going on holidays. Use free translation service for medication letters when you go on holiday, to explain your medication requirements in any of our supported languages, including French, Spanish, Italian, Portuguese and Turkish.

You can share your experiences and concerns with other members of the CF community by joining our social network on Twitter and Facebook, or we can put you in touch with a trained volunteer who can share their experience of living with CF.

Diagnosis

Tests can be carried out to diagnose cystic fibrosis at any age.

Most cases are now detected soon after birth through newborn screening, but older children and adults with symptoms of cystic fibrosis who weren't screened can also have tests to check for the condition.

Causes

Cystic fibrosis is caused by a faulty gene that a child inherits from both their parents.

The faulty gene means that some cells struggle to move salt and water across the cell wall. This, along with recurrent infections, can result in a build-up of thick, sticky mucus in the body's tubes and passageways – particularly the lungs and digestive system.

Foetal Alcohol Syndrome

What is it?

If a woman drinks alcohol during pregnancy, she risks damaging her baby. Sometimes this can result in mental and physical problems in the baby, called Foetal Alcohol Syndrome.

This can occur because alcohol in the mother's blood passes to her baby through the placenta.

The baby can't process alcohol as well as the mother can, which means it can damage cells in their brain, spinal cord and other parts of their body, and disrupt their development in the womb.

This can result in the loss of the pregnancy. Babies that survive may be left with the lifelong problems.

Advice for parents

  1. Notice your child's success and focus on their strengths.
  2. Celebrate every success.
  3. Be honest with yourself; Set realistic goals.
  4. Don't let poor spelling stop your child. Spell checks are great!
  5. Share your own difficulties with your child.
  6. Read aloud to your child - it's fun and helpful.
  7. Children feel supported when they see parents and teachers working together to help them.
  8. Small steps can bring big improvements.
  9. It's OK to read slowly.
  10. Teach them how to help themselves e.g. how to ask for help.

Symptoms

A baby exposed to alcohol in the womb may have:

  • A head that's smaller than average.
  • Poor growth – they may be smaller than average at birth, grow slowly as they get older, and be shorter than average as an adult.
  • Distinctive facial features – such as small eyes, a thin upper lip, and a smooth area between the nose and upper lip, though these may become less noticeable with age.
  • Movement and co-ordination problems, known as cerebral palsy.
  • Learning difficulties – such as problems with thinking, speech, social skills, timekeeping, maths or memory.
  • Mood, attention or behavioural problems – such as autism-like behaviour or attention deficit hyperactivity disorder (ADHD).
  • Problems with the liver, kidneys, heart or other organs.
  • Hearing and vision problems.

Diagnosis

Speak to your GP or health visitor if you have any concerns about your child's development or think they could have Foetal Alcohol Syndrome.

If the condition isn't diagnosed early on and a child doesn't receive appropriate support, they're more likely to experience challenges associated with the condition.

For example, they may get into trouble at school, have difficulties with learning, misuse drugs or alcohol, develop mental health problems, and find it difficult to get a job and live independently as an adult.

Your doctor or health visitor will need to know if your child was exposed to alcohol during pregnancy to make a diagnosis of foetal alcohol syndrome.

Causes

When a pregnant woman drinks alcohol, some of that alcohol easily passes across the placenta to the foetus. The body of a developing foetus doesn’t process alcohol the same way as an adult does. The alcohol is more concentrated in the foetus, and can prevent enough nutrition and oxygen from getting to the foetus’ vital organs.

Damage can be done in the first few weeks of pregnancy when a woman might not yet know that she is pregnant. The risk increases if the mother is a heavy drinker.

Mental Health Difficulties

What is it?

Intellectual Disability (ID), once called Mental Retardation, is characterized by below-average intelligence or mental ability and a lack of skills necessary for day-to-day living. People with intellectual Disabilities can and do learn new skills, but they learn them more slowly. There are varying degrees of Intellectual Disability, from mild to profound.

Someone with Intellectual Disability has limitations in two areas. These areas are:

  • Intellectual functioning. Also known as IQ, this refers to a person’s ability to learn, reason, make decisions, and solve problems.
  • Adaptive behaviours. These are skills necessary for day-to-day life, such as being able to communicate effectively, interact with others, and take care of oneself.

Signs

There are many different signs of Intellectual Disability in children. Signs may appear during infancy, or they may not be noticeable until a child reaches school age. It often depends on the severity of the disability. Some of the most common signs of Intellectual Disability are:

  • Rolling over, sitting up, crawling, or walking late.
  • Talking late or having trouble with talking.
  • Slow to master things like potty training, dressing, and feeding himself or herself.
  • Difficulty remembering things.
  • Inability to connect actions with consequences.
  • Behavior problems such as explosive tantrums.
  • Difficulty with problem-solving or logical thinking.

In children with severe or profound Intellectual Disability, there may be other health problems as well. These problems may include seizures, mood disorders (anxiety, autism, etc.), motor skills impairment, vision problems, or hearing problems.

Advice for parents

Community supports: Within each person's community, there are a variety of programs and services. Many of these services are designed to assist people with disabilities. Some of these services are specifically intended for families and other caregivers.

Family Therapy and Support Groups: Parents of children with intellectual disabilities face many losses. The loss of their dreams, hopes, and aspirations for their child can cause great sorrow.

Support for siblings of intellectually disabled: Siblings of children with intellectual disabilities need their own support.

Diagnosis

Intellectual Disability may be suspected for many different reasons. If a baby has physical abnormalities that suggest a genetic or metabolic disorder, a variety of tests may be done to confirm the diagnosis. These include blood tests, urine tests, imaging tests to look for structural problems in the brain, or electroencephalogram (EEG) to look for evidence of seizures.

Causes

The most common causes of Intellectual Disability are:

  • Genetic conditions. These include things like Down syndrome and fragile X syndrome.
  • Problems during pregnancy. Things that can interfere with fetal brain development include alcohol or drug use, malnutrition, certain infections, or preeclampsia.
  • Problems during childbirth. Intellectual Disability may result if a baby is deprived of oxygen during childbirth or born extremely premature.
  • Illness or injury. Infections like meningitis, whooping cough, or the measles can lead to Intellectual Disability. Severe head injury, near-drowning, extreme malnutrition, infections in the brain, exposure to toxic substances such as lead, and severe neglect or abuse can also cause it.
  • None of the above. In two-thirds of all children who have Intellectual Disability, the cause is unknown.

Aphasia Developmental Delays

What is it?

Aphasia is a condition that affects the brain and leads to problems using language correctly.
People with Aphasia make mistakes with the words they use, sometimes using the wrong sounds in a word, choosing the wrong word, or putting words together incorrectly.
Aphasia also affects speaking and writing in the same way. Many people with the condition find it difficult to understand words and sentences they hear or read.

Advice for parents

  1. Make sure you have the person’s attention before you start.
  2. Minimize or eliminate background noise (TV, radio, other people).
  3. Keep your own voice at a normal level, unless the person has indicated otherwise.
  4. Keep communication simple, but adult. Simplify your own sentence structure and reduce your rate of speech. Emphasize key words. Don’t “talk down” to the person with Aphasia.
  5. Give them time to speak. Resist the urge to finish sentences or offer words.
  6. Communicate with drawings, gestures, writing and facial expressions in addition to speech.
  7. Engage in normal activities whenever possible. Do not shield people with Aphasia from family or ignore them in a group conversation. Rather, try to involve them in family decision-making as much as possible. Keep them informed of events but avoid burdening them with day to day details.
  8. Encourage independence and avoid being overprotective.

Signs

People with expressive Aphasia may have some of the following signs and symptoms:

  • Slow and halting speech.
  • They may struggle to get certain words out, such as the names of objects, places or people.
  • The content of their speech is stripped down to simple elements and only contains basic nouns and verbs – for example, "want drink" or "go town today".
  • Spelling or grammatical errors.
  • Using the wrong word, such as saying "chair" instead of "table".
  • Difficulty constructing a sentence
  • Being able to write or speak fluently, using long sentences, but often including nonsense words or their speech lacks meaning.

People with receptive Aphasia may have some of the following signs and symptoms:

  • Difficulty understanding what people say.
  • Difficulty understanding written words.
  • Misinterpreting the meaning of words, gestures, pictures or drawings.
  • Giving responses that may not make sense if they've misunderstood questions or comments.
  • Not being aware of their difficulties with understanding.

Diagnosis

Tests often involve simple exercises, such as asking a person to name as many words as they can think of beginning with the letter F, or asking them to name objects in the room.
The results can then be used to build up a detailed picture of a person's capabilities in areas such as:

  • Understanding basic speech and grammar.
  • Expressing words, phrases and sentences.
  • Social communication – for example, holding a conversation or understanding a joke.
  • Reading and writing letters, words and sentences.

Causes

Any damage to the language areas of the brain can result in loss of function, leading to aphasia.







 

Smith-Magnesis Syndrome

What is it?

Smith-Magnesis Syndrome (SMS) is a genetic disability that affects numerous parts of the body. Major features of the condition also include mild to moderate learning disability, delayed speech and language skills, distinctive facial features and sleep disturbances.

It is known to affect at least 1 in 25,000 individuals worldwide.
 

Symptoms

Individuals with SMS are characterised by a short flat head, prominent forehead, broad square face, deep-set eyes and a broad nasal bridge. The facial differences may become more distinctive with age.

Feeding problems, failure to thrive, weak muscle tone, prolonged napping and lethargy are all common during infancy. Later in childhood and adulthood, sleep disturbances may develop, as well as behavioural problems. These may be exhibited in the form of frequent temper, anxiety or self-injurious tendencies.

There are other stereotypical behaviours including ‘self-hugging’, hand-licking, teeth grinding and body rocking.
 

Advice for parents

Input from professionals is vital as SMS is a complex disability, and each individual will exhibit different aspects of the characteristics.

Many families have found that having safe activities in the bedroom to keep the child engaged during their wake time is helpful, and to secure the rooms to prevent the child from injury if they wander about the house.

Keeping schedules is important, and use visual cues to show what is happening next. Emotionally neutral environments are useful as individuals with SMS can be very sensitive and anxious of feelings of others.
 

Diagnosis

A diagnosis is based upon identification of characteristic symptoms, a detailed family history and a clinical evaluation including specialised genetic tests. SMS is usually confirmed by chromosome analysis and fluorescent in situ hybridization (FISH).
 

SMS is usually confirmed by chromosome analysis and fluorescent in situ hybridization (FISH).

Causes

It is caused by a microdeletion or abnormality of chromosome 17. The exact cause of chromosomal alteration in SMS is unknown as the majority of documented cases in medical literature indicates that the alteration is due to a spontaneous genetic change for unknown reasons.
 

© Copyright 2024 Sparklers Foundation GhanaWeb Design By Toolkit Websites