Have you ever wondered what the concerns of ageing parents of an adult with special needs might be?
In this final of a three-part series titled Special Needs and Ageing Well, we discuss how community can better support such families with special needs children through life transitions.
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Help Both Parent and Child Prepare for Transitions
It is important to help adults with special needs and their parents adapt to life change, especially through periods of grief and loss. Here are some ways to meaningfully prepare for this.
Celebrate the parent-child bond by helping them to create a scrapbook/photo album/folder that documents their relationship through the years. Doing this together can strengthen their relationship. The scrapbook can be something that the adult with special needs cherishes for years to come. After the parents pass away, it may become a tool for family caregivers or staff at a Home to help her through grief.
Many adults with special needs have problems communicating. Therefore, it may be difficult to tell how much they understand about their parent’s worsening health and death. Nonetheless, it is perhaps more useful to take the stance that the adult with special needs has some awareness of what is happening, and to keep a lookout for non-verbal cues on how she is coping.
Some clients will be able to express what they feel by talking about it or depicting it in their drawings. Offer a listening year, attend to them with empathy, and help them seek professional support if the grieving is prolonged and distressing.
Encourage parents to consider the people from within their natural support networks who can continue to visit their child in a Home or bring her on family leave. These include:
- her aunts and uncles
- her cousins, nieces and nephews
- family friends that have known her since she was young
- volunteers who have built a good relationship with the family
It will be good for her to be able to continue meeting and interacting with people she knows as this will give her a sense of continuity.
It takes time for trust to develop. Family members and friends also need to build up their confidence, learn how to best manage visits, outings and home leave.
Extended family members and close family friends may have to discern how much to involve the child when a parent falls ill, reaches the end of life, and passes away. For some, visits to hospitals or hospices are a family affair –everyone turns up together. For others, the visitations may be more private and quiet.
Whatever the case, help the adult with special needs to say farewell to her parent but do not overwhelm her. Family members and relatives may want to bring her to visit the parent or spend some time privately remembering the parent. This may help her to make the transition to life without the parent. Assure the child that the parents have worked out care arrangements for her.
After the parent’s death, monitor how the adult with special needs copes with the changes, regardless of whether she is newly admitted into a Home or has already been there for a while.
Building a community around special needs adults and their parents will bring comfort, provide stability, and alleviate the sense of isolation that comes in times of grief and loss; as nothing can replace the presence of family, friends, and meaningful relationships in such situations.
It is always important to have people around us to rejoice and mourn with through the seasons of life as it is this sharing of our selves that sustains, strengthens and makes us whole.
Samuel Koh, Executive Director of COH, has in his heart, a dream of piloting a small-scale ‘Community Home’ where staff take on the role of House Parents to three or four COH clients in a HDB flat or cluster of flats. They will supervise these clients’ care with the help of a few domestic workers.
Each morning, the clients can continue to attend the Emmanuel Activity Centres (EAC) that they are already so familiar with, and return to the Community Home in the evening. Such an arrangement would ‘mimic’ the current experience in their own homes with their biological parents. Family members, relatives and friends can visit the client in the Community Home and remain a part of his life. This transitional arrangement will also serve to minimize the disruption of the special needs adults’ routines and cushion the trauma that changes so often inflict upon them.
Should something happen to the parents, the clients can, ideally, go on to stay with family members, relatives or friends who are familiar and willing to care for them in their own homes. Alternatively, from this place, the clients can also be gradually initiated into further institutional care, should the need for this arise.
COH is halfway there. The EACs are already beloved second homes to many clients. They spend weekdays here learning life skills and their parents take part in COH outings, celebrations and support groups. Such intimate knowledge of the clients and their parents gives COH the potential to gently and gradually assist in preparing them for the inevitable transitions of life.
About the Author: The COH Resource Team comprises volunteers, content writers and experts, including psychologists, counsellors, educators and social service professionals.