A child with intellectual disability often has complex health needs that continue to shift and change as the child grows. Over time, as the child develops from an infant to a young adult, the particular characteristics of their disability may change. Also, the natural process of ageing will affect their behaviour and may change the way they interact with those around them.
The many issues and challenges for the child’s parents and carers also shift and develop over time. There is considerable emotion attached to these for everyone involved and unresolved issues can put a great deal of pressure on parents, carers and siblings.
Understanding the family situation is an essential part of providing the care and support that a family needs to ensure the health and wellbeing of their child.
The school has a pivotal role in supporting the family and building a relationship of trust and confidence. This means that they may be the ones best placed to facilitate the family’s involvement with the health and other specialists and professionals who can help guide the care of their child and ensure the best possible quality of life for that young person.
Thirty years of experience at Cairnsfoot School for Specific Purposes in Sydney has lead to the development of the SchoolKit Family Timeline. This timeline provides a clear outline of the type of issues that often come up for a family over the years and the ways a school can support them.
This can be used as a key tool for understanding what might be going on with a family at any given time. It can be used to shape the questions that might be asked to determine a family’s most pressing needs and priorities. It is important to remember that not every parent or carer has the same perspective when faced with different situations and challenges. Use the timeline as a guide, and listen closely to what the family are saying.
- A fear of the future as parents encounter a range of students with differing disabilities of all ages at school for the first time
- A sense of denial that their child will develop idiosyncratic behaviours
- Shock that their child is not going to a Kindergarten Class in their local primary or parent’s school of choice
- A ‘future reality check’ and facing for the first time what the future may in fact hold
- A perception of ‘parental failure’ that they do not have a ‘normal’ child
- A need arises for parents to ‘let go’ of their child and to begin to share the responsibility for care and education with the school.
Social Isolation occurs for some families once the Allied Health Professionals that delivered services up to 7 years of age begin to pull out. This leads to:-
- A loss of relationships and trust with important services
- A loss of advocacy from others as they transition into school
- The beginning of new relationships with school staff which take time to develop via meetings and phone contacts
The family unit is stressed in a variety of ways. This leads to:-
- A need for more support for the family unit as there may be possible breakdowns in family relationships
A period of calm begins as primary school gets underway. Trust is built with school staff as teachers support the parents with learning and behavioural strategies and help the family to access services outside school like respite and organise medical clinics to support the student and family.
Parents are learning how to talk about disability with family and friends and helping their children explain to their school friends (as often they attend different schools)
Earlier unresolved issues from the time of diagnosis become more acute and impact on the teachers and school as the student transitions from primary into secondary school and begins to enter puberty. This leads to:-
- Worries about siblings and their future
- Parental guilt over lack of time to balance all the family needs
- Loss of support occurring especially if the student changes schools and school relationships
- Older siblings begin to separate from the family unit and pursue their own interests and there is less support for both parents and other children in the family.
- Puberty is a challenge and new strategies are needed for managing behaviour as their child undergoes natural physical maturation and is larger
- New technologies are a challenge for some parents
- “Blinkers” come off as the reality of an unchanging condition continues as the end of school looms anddreams of a different future are irrevocably over
- Years 11-12 are the beginning of transition to adult medical services. Can be a confronting time for parents as they re-experience shock, loss and grief
- Development of new relationships as students and parents move into adult services with the assistance of school transition clinics
- Fears of what the future holds: What will happen when I die & who will look after my child?
- The school enrols ‘the whole family’ not just the child with an intellectual disability and complex health needs
- Teachers provide support via telephone calls, communication books and PLSP meetings with ‘non-judgmental’ listening
- Focus on students developing leisure skills both in the school program and in skills that will generalise to the home like going out to cafes to eat with the class culminating in a restaurant visit as they graduate. This helps them in developing socially appropriate behaviour in a range of public settings which supports families.
- Executive staff and school counsellor provide support as needed and assist the family unit in recognising the needs of all members of the family unit.
- Functional learning approach
- Child centred approach
- Helps build connections with new Allied Health personnel and professionals in different agencies
- Helps families continue to develop trust and connections with medical services (School Clinics)
- Parent support group with agenda to provide connectedness and other assistance
School counsellors complete cognitive and adaptive assessments and share the results with parents and carers helping them to understand more about disability and providing psychoeducation. Preparing parents for future decisions about secondary placements
Parents are encouraged to discuss what their real life issues are that are impacting on the family unit. This helps families to highlight and address the hurdles.
School-wide programs cover:
- Sexuality, menstruation etc
- Teaching responsible computer use and providing leisure skills
Transition clinics start which:
- Connects parents to the next services
- Connects parents to post school options and continuing support into 1st year of change
- Builds functional programming
- Builds on community access
- Builds on leisure skills
- Connects parents to adult medical services and nurse practitioners
Use the link below to download the Schoolkit Family Timeline as a PDF