Working with families and young people

Early years

A family very often needs support to cope with a disability and to help their disabled child reach her or his potential. Areas to consider during early years are:

• Adjusting to the birth of a baby with a disability
• Accessing and considering the huge amount of information, for example on the internet, about diagnosis and prognosis

Normal events triggering anxiety

Normal life events may increase anxieties for the child, young person and family. For example:

• First entry into school
• Transfer from pre-school to junior, then secondary school
• Leaving school and moving on to further education, higher education or employment

A normal experience such as changing school can have the unfortunate effect of resurrecting in your mind bad experiences involving your child from the past. For example, a meeting to decide upon the next placement can remind you of the battles you may have had in order to get extra support in place for your child.

Information

Even after much research, evidence still suggests that parents are given little information at the time of diagnosis and that many are still not referred to other agencies where independent advice on development and education is available.

Parents often receive information through friends and acquaintances.

A very important service for organisations working in early years and disability is to provide accessible and comprehensive information to families from the time of diagnosis.

Involving parents

Parental involvement is very important. Parents need to be seen as equal partners. The success of a disabled child in education is often dependent on the meaningful involvement of parents.

School and parental relationship

The relationship between parents and the school has a major impact on the child’s educational progress. If parents are to collaborate with teachers, they need information and advice about the provision being made for their child.

Also, the child’s special educational needs cannot be assessed and met fully in school without the insight of parents who know the child better than anyone.

Many parents and especially those from ethnic minorities feel, in my experience, that they do not have equal access to information and advice.

Family reactions to having a disabled child

It is commonly believed that there is a continuum of reactions which parents may experience before they are able to come to terms with their child’s disability. These are:

• Shock
• Denial
• Anger
• Sadness
• Detachment
• Recognition

And then,

• Adaptation

Some families adapt quickly whilst others take much longer. The list is not followed strictly by everyone. Each stage may also be revisited later in life.

Noticing a problem

Some parents notice a problem, for example with vision when:

• They cannot engage with baby using eye contact
• Other children of the same age start reaching for toys, crawling and walking

Other parents first notice a significant difference:

• When their child is at school and not progressing at the same speed as children of a similar age
• During or after a phase in transition when more is expected of the child

Feeling let down by professionals

Parents may trust and expect professionals to provide appropriate advice and support. Then, at key times good support may be required from more than one professional.

Moving from the support of one professional to another can highlight shortcomings. This can be particularly pronounced when parents move from needing gentle family support to requiring independent and quantifiable information about education; for example, when needing candid information about placements best suited to meet their child’s needs.

Information

Parents commonly request:

• Understandable information in functional terms on their child’s disability; for example, an eye condition
• Independent information on suitable educational placements
• Understandable information on their child’s academic progress
• Specific and quantifiable support requirements of their child
• Information about the development of specialist skills; for example, touch typing and the development of age appropriate independent living skills to include mobility
• Independent advice about the various transition stages in education

For parents of a multi-disabled child respite care might also be a significant issue. Also, information on:

• Short term fostering
• Temporary placement at a residential home or school
• Holidays

If you feel isolated, in need of professional support and information see what Families and Special Educational Needs can offer.

Siblings

A child with a disability has an impact on the whole family. Some parents become very absorbed with their baby’s life and this may be passed on to brothers and sisters. A sibling may worry or become resentful of the attention given to the new disabled baby. Ideally, parents will divide attention equally although this can be extremely difficult.

Grandparents

Grandparents may also need consideration. There can be tensions between parents and grandparents about the care and education of the child. Grandparents (or parents) may also try to over protect the child.

Cultural differences

The same difficulties apply to parents and grandparents from ethnic minorities. Sufficient regard must be given to the culture and customs of the family and possibly the differing expectations of parents and grandparents.

Multiple-disability

The same issues also apply to parents of a child who is multi- disabled, as they have to work with the extra demands that multiple disability brings.

Time and financial cost

Many trips to the hospital or clinic can be time consuming. Travel and overnight stays are expensive.

Managing the situation

Some parents do not feel that they possess the necessary skills and this can make them feel vulnerable. A long list of professionals may be involved which can be confusing. It is not uncommon for parents to not know the reason why certain professionals are calling.

Working together

Ideally, the statutory services, health, social services and the education authority will work together and offer parents all the support needed at diagnosis and beyond.

Parent baby bonding

If a child is born severely sight impaired (blind), a consequential lack of eye contact may affect mother baby bonding. These difficulties can increase if baby has to stay in hospital and away from mother. Parents may need advice on how to interpret the baby’s behaviour and thus establish the special relationship between parent and child.

Pre-school advice

As the child grows parents may value advice about how to encourage:

• Feeding, dressing and toilet training
• The use of specialist equipment; for example, wearing glasses, using low vision aids and canes
• Advice may also be valued on appropriate play materials and on activities that will keep their child constructively occupied.

Toy libraries

A toy library based in a local child development centre or charity may be of great value. At these venues feelings of isolation can be addressed along with information made available about suitable nurseries and play schools in the area.

School years communication and avoiding misunderstanding

Parents characteristically want and need full and candid information during their child’s schooling. Good communication between home and school is vital. This can occur via:

• Comprehensive and accessible reports
• Meaningful home, school diaries
• Email
• Phone

This may sound obvious but still a great deal of conflict arises through poor communication with these simple methods unused.

Parents of children living a long way from school with their children ‘bussed in’ might require even greater consideration. They often miss out on informal discussions after school with staff and other parents.

Access to a named person helps. For example, being able to contact the school’s Special Educational Needs Coordinator, class teacher, teaching assistant or specialist teacher to discuss concerns is another way of avoiding poor communication, miss understanding and conflict.

Adolescence

Issues of concern often encountered include:

• Puberty and addressing the physical changes taking place if for example, your child is blind
• Wanting to assert him or herself regarding individuality and independence but restricted by mobility skills, social skills or low vision
• Life after school or college: this being particularly the case if a child or young person is highly dependent. Who will provide support if parents aren’t around? These thoughts can stimulate feelings of isolation and fear of the future
• Sibling concerns about their present and future responsibilities. This may present when they are looking to become more independent

Consequently, at all stages, opportunities for the whole family to explore their feelings and to understand the views of others can be helpful and to bring this about support is often needed.

If you feel isolated, in need of professional support and information see what Families and Special Educational Needs can offer.

Introduction

Setting up a working relationship can be difficult. The situation can be volatile with a lot of pain and raw emotion floating around. From time to time everyone gets it wrong. Often, from the outset, being prepared to apologise and then sitting down to work things through is the best way forward.

Professionals not giving enough information

Professionals often select the information they think relevant and offer only the information they feel is required. This can create dependency on the professional and prevent equal interaction from taking place.

It can be argued that professionals deploy this model to help promote status. Consequently, there is a danger here of professionals working to meet their own needs not those of your family. This can undermine trust and cause antagonism.

Professionals expecting too much from families

Many professionals recognise the importance and usefulness of working with parents. They pass on teaching skills, involve parents in an assessment along with educational or therapeutic programmes. However, this approach often assumes that parents share the same aims and beliefs as the professional. Also, it can be assumed, sometimes incorrectly, that parents have the skills, time and motivation to carry out the suggested programme.

Moving in the right direction

Negotiation within the context of a mutually respecting relationship is usually the best foundation. Decision making is within the parents’ control and as a result, parents may choose to reject advice and support which can be difficult for a professional to accept.

Suggestions

• Often, it is not what you say but how you say it
• From the outset clearly set out the role of the parent and professional so neither has incorrect expectations of the other
• Whilst there is no excuse for unprofessional behaviour, don’t forget that a professional:
  
  
  • Might be having a bad day too
  • Might be going through a difficult situation at home
  • May not be experienced in managing such a complex and volatile situation

The value of consultation

Parents offer invaluable information about their child’s response to learning and development. They should therefore share in the planning and implementation of their child’s education and development.

Professional skills

Offering families support requires certain qualities and skills including a recognition of the many pressures, challenges and changes in circumstance that might manifest when having a disabled child. For example:

• Finance
• Unemployment
• Relationship with a partner
• Elderly parents
• Concerns about other children
• Concerns about the future

When engaging with a family, some professionals can carry with them their own perceptions of right and wrong and what is acceptable or unacceptable behaviour. They can forget that their own views may have been developed whilst being brought up in a different socio-economic group or culture. Unfortunately, being a good teacher for example, and trained to work in a school does not necessarily develop the skills to be a good home visitor with the understanding necessary to enter what is perhaps a dysfunctional situation where a family is trying to work through the trauma of having a disabled child.

If you feel isolated, in need of professional support and information see what Families and Special Educational Needs can offer.

A few suggestions

• Constantly consider the limitations of what you can and cannot do and, what you know and where your knowledge is limited
• Avoid saying I know when this isn’t the case. If you don’t know say so but you will find out
• All professionals have limitations. Consequently, clear objectives should be set based on knowledge and experience
• Always give clear feedback after a meeting to include what was discussed and what are the Action Points for all concerned
• Objectively review your intervention. Ideally, this will take place during regular supervision where you can openly and safely discuss casework

A working relationship but not too close

It is important to build a good working relationship whilst avoiding getting too close and thereby trying to solve issues outside your role. For example, peripatetic teachers should not become counsellors or surrogate mothers and move beyond their field of expertise. At best, a confusing message may be sent and could even cause harm through dabbling and opening up issues difficult to resolve.

Dialogue with other professionals

All professionals should be prepared to keep an open dialogue with other professionals from other disciplines. This is particularly the case if the child is multi-disabled. Parents should be kept in the loop with feedback about any discussions taken place.

Visits and meetings

A meeting or visit may cause concern based on the actual or perceived reason for the meeting. A feeling may exist whereby a professional may have to be judgmental about the situation, family and home. A professional, after all, is the agent of an organisation which may control the allocation of resources and, for various reasons may not be highly thought of by the family.

Other considerations

The time of a visit might be inconvenient. Parents can feel that objecting might undermine the support given. Therefore, ensure that the time chosen for a visit is in fact mutually acceptable.

• Consider the frequency of visits so the family has time to implement or try the suggestions made at the last meeting
• If the child is multi-disabled several professionals might be visiting and taking up too much time in an already busy day
• Ensure the family know what your role is and why you are visiting
• Families often feel that they are being judged with the information placed on file. This fear may be masked behind politeness

If you feel isolated, in need of professional support and information see what Families and Special Educational Needs can offer.

A Task Centred approach

A Task Centred approach can be developed as a short term method of supportive intervention. It builds on people’s strengths, focuses on what works rather than what doesn’t.

This approach offers a way of working through complex issues in a methodical way and in bite size chunks. It softens many of the problems encountered when parents work with professionals.

The stages are:

The Mandate

During this stage the parent and key professional develop a partnership as the basis for future work. The agreement is explicit about what sanctions the work.

Explore the issues needing to be addressed

Together the parent and professional explore the range of issues in a systematic way. Issues are scanned at a general ‘headline’ level. The main focus is on the issues identified by the parent. The professional is explicit about any additional issues identified.

Detail each issue:

• What specifically is the nature of the issue?
• What or where does the problem occur?
• Who is involved in the problem?
• Why is it a problem?
• How is it a problem

Select one or at most two problem areas to work on at a time.

The written agreement

The piece of work is then guided by a negotiated agreement. It consists of:

• The selected problem(s)
• An agreed goal e.g. “I want to .../ We want to ...”
• A time limit by which the goal will be achieved and a plan to indicate the frequency and pattern of contacts

Working on tasks and reviews

At each session, the parent and professional review progress on tasks agreed at the previous session. They then develop new ones which will move them closer to achieving the goal.

Evaluating and ending the work

Having evaluated the piece of work the intervention is ended. If other problems exist or a fresh problem arises a new Mandate is produced.

Conclusion

This method offers a quantifiable way of breaking down a complicated situation into bite sized chunks. Each problem area is then addressed methodically.

If you feel isolated, in need of professional support and information see what Families and Special Educational Needs can offer.