Information for Families

Definitions & Terminology

Advocate

A person who helps take action by empowering and supporting people to assert their views where necessary, representing and negotiating on their behalf.

 

Chromosome

Chromosomes are minute particles within the cells of our bodies. Very simply, they are the building blocks which determine our individual characteristics such as eye and hair colour. Chromosomes are normally grouped together in 23 pairs (46 in all), half of which come from the mother and the other half from the father.

 

Early Intervention

Early intervention is the process of providing specialist support for infants and young children up to age six years who have disabilities with physical or developmental delay; it provides services to help with development and inclusion.

 

Educational Psychologist

An educational psychologist is a qualified teacher who has had additional training as a psychologist, they help to access your child’s development and provide advice and support.

 

Enteral Feeding

Enteral feeding is feeding into the gut to promote normal growth and development.

 

Fine Motor Co-ordination and dexterity

Using the finger and hands for controlled movements, particularly to manipulate and hold objects.

 

Geneticist

A geneticist is a biologist that specialises in genetics. They provide a clinical service for individuals and their families who are affected by or at risk of a disorder with a significant genetic component. Reasons why families are referred to see a geneticist are: a child with a birth defect, to try and diagnose why a child has developmental problems, recurrent miscarriages or the diagnosis of a hereditary disease in the family.

 

Gross Motor

Gross motor is the use of large muscles in the body. The skills that use large muscle groups and which involve balance and co-ordination such as holding your head up, sitting, standing, crawling and walking.

 

Interdisciplinary Team

Is a team of professionals representing different fields of expertise, like paediatricians, occupational therapists, physiotherapists, social workers, community paediatric nurses and psychologists they help provide a comprehensive approach to the child’s strengths and needs.

 

Individual Education Plans (IEP’s)

Written records that document the individualised planning process for children with special educational needs. Individualised planning is a continuous and integrated process of assessment and evaluation that leads to decision making and reporting.

 

Intellectual Disability

Intellectual disability is diagnosed when a child has greater than average difficulty in learning. A child is considered to have an intellectual disability when their general intellectual functioning is below average; significant deficits exist in everyday skills.

 

Jejunostomy (JEJ)

A Jejunostomy – referred to as JEJ – is a plastic feeding tube which is inserted directly into the small intestine with access through the Abdominal wall.

 

Key Worker

Is an identified and agreed person who will be your main point of contact.

 

Lamh

Lamh is a sign language. When children do not have the words they need to communicate; hands signs and spoken word are used together to help the children express themselves.

 

Life Limiting Condition

Life Limiting condition is an incurable illness often requiring special care and in time they may need hospice care.

 

Life Threatening Conditions

Life Threatening Conditions (LTC,s) are illness or conditions that pose a grave threat of mortality for children and young adult’s for which medical treatment may result in a cure but may also fail.

 

Multi-disciplinary

The multi-disciplinary team refers to the collaborative process where different disciplines access or treat patients independently and then share information with each other.

 

Multi-sensory Therapy

A specifically designed environment which enables a child with special needs to enjoy a wide range of sensory experiences  through vision, sound, touch, smell, and taste for therapy, learning, relaxation and fun.

 

Muscle Tone

Muscle tone is the amount of tension in a muscle and is it important or movement and posture. Disturbances in the muscle tone can be hypertonic, hypotonic and dystonic.

 

Nasogastric Tube(NG)

A nasogastric tube (ng) is a plastic tube inserted through your nose and it passes down into your stomach used for feeding.

 

Nutrition and Dietetics

A Dietician provides a clinical and advisory service to children and their families who have nutritional problems and feeding difficulties. They have an educational role around feeding supports (nasogastric or PEG Tube feeding) to help your child’s growth and development.

 

Neurodevelopmental Delay

Neurodevelopmental Delay is failure to meet certain developmental milestones normally achieved during infancy and early childhood usually caused by organic, psychological or environmental factors. Developmental delay indicates a problem in normal development in the central nervous system.

 

Occupational Therapy

Occupational Therapy (OT)looks at how your child is developing the skills which are used in everyday life. This includes his/her ability to carry out self-care tasks such as eating and dressing, playing with toys and other children and as your child grows the possibility of writing and concentration skills. The assessment is done by observation of the child and by discussion with the parents. The OT aims to develop fine motor, cognitive and perceptual ability, along with self-care skills. Once your child has been accessed it will be discussed with you about how often your child needs to be seen. A home programme will be developed for your child and reviewed regularly.

 

Outreach Nurse

The role of the outreach nurse is to co-ordinate a service that provides continuity of care and quality of life for children with life limiting conditions and their families.

 

Paediatrician

A Paediatrician is a doctor who specialises in children’s health and development. The paediatrician aims to see children bi-annually or more often if required. They work in co-ordination with community teams and communicate with other specialist paediatric doctors looking after your child along with keeping your family General Practitioner (GP) informed. They may link in with other professionals in the community such as (PHN’S) and area Medical Officers.

 

Paediatric Neurologist

Paediatric Neurologists are specialists that deal with children with disorders of the nervous system. This means conditions involving the brain, spinal cord, nerves and muscles. Neurologists treat both inherited and acquired neurological problems in children and work in conjunction with other specialists to treat children with conditions that may have over lapping concerns.

 

Palliative Care

Palliative care is inter-disciplinary care that aims to improve quality of life of individuals with LTC’s or LLC’s seeking to reduce pain and distressing symptoms while attending to a wide variety of psychological, social and spiritual needs.

Palliative Care is patient centred and family focused; it can complement curative and life prolonging interventions from the time of diagnosis onward provided in home, hospital or hospice. Palliative care seeks to inform and support medical decision making by patient and families to provide respite for carers and to support family members in bereavement.

 

Percutaneous Endoscopic Gastrostomy (PEG)

Percutaneous Endoscopic Gastrostomy often referred to as a PEG. This is a plastic feeding tube which is inserted directly into your stomach through the skin.

 

Physiotherapy

Most children with disability will be referred for physiotherapy; first the physiotherapist will access him/her and will look at his/her ability to hold their head, move, sit,and crawl. The Physiotherapist will also look at balance, the way the muscles and joints work, the way the heart and lungs function and how your child responds to sensory information. They identify areas of concern and develop treatment goals and a programme to work with at home. They will support this programme with follow up appointments adjusting and modifying the programme according to your child’s needs.

 

Picture Exchange Communication System(PECS)

Picture exchange is used to help motivate children to request objects/food/activities if they don’t have the words to request them through speech.

 

Psycho-Educational Assessment

A psycho-educational assessment is a comprehensive assessment of your child’s level of cognitive functioning. During the assessment procedure, this may take place over a number of sessions and it involves a variety of verbal and non-verbal performance tasks to ascertain his/her level of ability. Arising from the findings, specific recommendations regarding the most appropriate school placement are made

 

Public Health Nurse

The Public Health Nurse (PHN) is the first point of contact with parents in the community after the birth of your child or following a diagnosis. They are involved with routine checks on your child’s development and advocating and managing home support or nursing if required. They also will manage and supply and medical equipment and supplies if needed in the home.

 

Special Educational Needs Organiser (SENO)

Special Educational needs Organisers deal with applications for teaching and other supports for children with special educational needs.

 

Social Worker

Social work is a method of working with families which aims to build a supportive relationship. It assists families to identify needs, offers emotional and practical support. It encourages families to work cooperatively and in partnership with all the professionals involved with your child. Social work valves are based on respect of equality, worth, dignity and self-determination of all families. The social worker will advocate on your child’s behalf and to ensure that he/she receives all the services available to them.They will provide information around entitlements, benefits and legislation.

 

Speech and Language Therapy

Speech and Language Therapy (SLT) aims to help your child to develop his/her communication, eating, drinking and swallowing skills to help reach potential in this area. Early intervention is important so SLT will begin prior to your child’s first word. The SLT will access your child’s understanding, expression, how he/she manages sucking, swallowing and chewing.

 

They will also access how your child plays with objects and people. They then provide an individual programme to work with at home. The programme will be reviewed and developed as your child needs change.

 

Video fluoroscopy

X-ray used to access eating and drinking.