Learning Disabilities

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General Learning Disability

Learning disability has been labelled "mental handicap" and "mental retardation" in the past. Some doctors still speak of it in such terms believing it more accurately conveys the difficulties such individuals face. The new term "general learning disability" arose because of the stigma associated with the term "mental handicap" and because the extent of handicap varies enormously from individual to individual. There are many causes, but in many cases it is difficult to know exactly what causes learning disability. This can be hard for parents to cope with. Some causes are due to genetic factors, infections before birth, damage to the brain or infections of the brain after birth. Complete assessment of a child can take some time because it is difficult to assess for intellectual functioning and social skills in infants.

Children with general learning disability do not develop the skills which would otherwise equipment them to cope with life as other young people do. This shows up in their intellectual and general coping abilities with poor language development, motor skills (movement of limbs) and social abilities. Children with general learning disability are not suffering from a mental illness, but they are more likely than other individuals to develop one. They are certainly more likely to display emotional and behavioural disorders and may develop mental health conditions such as depression. It is important that these are not missed and seen as "part of their condition" because children can receive specific help for these types of problems.

Children with learning disability may have other conditions such as physical disability, hearing difficulties, autism, speech and language difficulties and epilepsy. These conditions can lead to intense frustration in communicating with other people and coping with life situations. The extent of the learning disability can be mild to very severe.

Effects on the family

A diagnosis of learning difficulty can be devastating to parents. Every parent wants their child to be "normal". It is common for parents to feel guilty, to wonder if it is down to one parent or the other, to have feelings of wanting to run away from the baby, to become depressed, feel ashamed, to go off sex with your partner, to become over-protective of the baby - a whole range of feelings that you may wish to discuss with your partner, family, doctor or a counsellor.

Often, these feelings develop later on when the extent of your child's disability become clearer. This can happen at the time of a normal rite of passage - such as reaching school age, becoming a teenager, or reaching the age of eighteen. At these times, the impact of the disability is highlighted. This can be difficult for your child and for the rest of the family. The feelings of loss can be very powerful. Seeking help from a counsellor or doctor can help, if you or your child, are having difficulty coping.

Over time, most parents come to terms with the limitations the disability presents. You will come to see your child's strengths too. Most parents love their child and develop a relationship with them that recognises both their difficulties and positive attributes. Some parents become very engrossed and focussed on their child and this can lead to difficulties. It is natural to want to protect your child and to develop their strengths. Try not to overprotect your child and take over their complete management. You have to weigh up the emotional and physical cost of taking on sole responsibility.

Tensions can develop between professionals and parents over how a child should be helped to develop their potential. Professionals can forget how difficult it is for families. Sometimes families feel they are pretty much left on their own without adequate support or advice. If this is the case, ask what help is available. If you don't feel you are getting the help you need, keep calm and explain why you need help in a clear and determined way. Do not feel embarrassed about needing help.

The limitations and stresses experienced by families when having to look after and support a learning disabled child can be hard to cope with. Do not get angry with the rest of the family, particularly children if they express feelings of resentment towards you or the disabled child. These are normal feelings and many of them would be expressed if their sibling did not have learning disability, but had a long illness instead. At times, they will resent the level of care their sibling requires and may be embarrassed when friends come to visit. Try to talk to your partner, if you have one, and to the children. Ask specific questions about their emotional needs and try to guess how they might feel. For instance, you might say, "I guess you have been feeling left out recently" or "I know it must be very difficult for you when your brother demands so much attention". If you have to spend time in hospital with your child, younger siblings will find this absence hard to cope with. Try to compensate for this when you return home.

If there are two parents, try to share the responsibility of care. Parents are spouses too. Find some private time together, apart from the children, to restore your strength and to maintain your relationship. If you are a single parent, finding time away from the children can be very difficult. Ask social services for respite care if you need it and do not be afraid to accept help from family and friends. Having a child with learning disabilities is associated with higher rates of physical and mental health in parents. If there are other hardships such as poor housing, financial problems or other difficulties in the family it will be more difficult to cope..

The potential for family crises occur:

• At diagnosis

• When parents realise the implications of the impairment for the child and family.

• When a decision about future pregnancies has to be made.

• During subsequent pregnancies.

• When the prospect of promotion or job change involves moving away from family, neighbourhood and professional supports.

• When the handicapped child goes to primary school, and when they would have changed to high school.

• If there is a significant deterioration in the disorder, so that it becomes life-threatening or terminal.

• If the child dies.

• When the child fails to negotiate a normal developmental stage (talking, walking reading etc.)

• If another child in the family develops the same or another disorder.

• When the child reaches puberty.

• When the child leaves school and starting work (or cannot start work)

• If the child requires operation(s)

• If the child goes into residential care.

These crises periods are additional to those normally experienced by every family and the likelihood of two or more of these events occurring is high.

What services are available?

Early intervention is important. Concerns may be expressed by doctors soon after birth. Your hospital doctor, GP and health visitor will help answer any questions you have and determine which specialist services are available for help or further investigation. In the UK these are known as Learning Disabilities Services. These services have a team of doctors, nurses, speech therapists, psychologists and often have access to psychiatric help. Together with social services, these specialist health services will devise a package of help and care for you and your child.

Where there are family difficulties your GP can refer you to a child and adolescent mental health service. These services have trained counsellors, family therapists and psychiatric help. Social services may be able to offer respite care. Respite care involves giving the family a break from their learning disabled child. This is sometimes hard to accept, but it is important to balance everyone's needs, particularly if the learning disability is severe. Many children enjoy respite, and it can be a way for them to increase their social skills and to take up activities away from home.

Schools

What type of educational provision is provided depends on the severity of the learning disability. Educational psychologists will asses the level of need and educational provision. Where the learning disability is mild this may be in a normal school with support workers, or in a normal school with an attached special unit. In this case, the schools SENCO teacher (special educational needs co-ordinator) will be actively involved. Severely disabled children may need to go to special schools specialising in learning disabilities. In some instances, residential care may be provided. The education of your child should be subject to regular assessment.

Check out the Finding Help article to find out how to get additional support and information.

Web sites:

MENCAP

http://www.mencap.org.uk/

British Institute of Learning Disabilities

http://www.bild.org.uk/index.html

British Institute for Brain Injured Children (BIBIC)

http://www.bibic.org.uk/

Down’s Syndrome Association

http://www.dsa-uk.com/

Scope (Cerebral Palsy)

http://www.scope.org.uk/