In any family, becoming a parent is an unknown journey, full of emotions like anxiety, pride, delight, and the newness of having to pay constant attention. However, when a child is diagnosed with an intellectual disability, the path becomes more complex and emotionally layered.
Parents must navigate not only the general duties of parenting, but also come to grips with a deeply personal crisis of direction within themselves. There is suddenly a new landscape of initial grief and denial, a restructuring of identity and relationships, and eventually ways and means to develop acceptance and resilience as a new way of life is defined.
Redefining Normal: the impact and process of change
Grief as a key reaction to the seismic moment of diagnosis
Parents may initially experience shock, disbelief, and even denial. There can be a profound sense of loss – not of the child, but the imagined future the parents had envisioned. There are feelings of disorientation, a grieving for the expectations, norms, and societal ideals of what their child might have become.
Parents wonder if their child may ever achieve independence, or live any kind of normal life. These uncertainties can create chronic stress and anxiety, especially in early stages when information is still unclear. It is important at this time to give families the emotional space and professional support that will enable them to begin understanding this new reality.
Navigating identity and purpose
- Raising a child with ID often leads parents to re-evaluate their identity—not only as caregivers but as individuals. Their roles can become more encompassing: not just parent, but advocate, therapist, educator, and protector.
- This shift can challenge their sense of self and purpose. For some, it brings out untapped strengths; for others, it may lead to feelings of isolation or burnout. One of the central psychological tasks becomes finding meaning in the new role – not in spite of the challenges, but often because of them.
- Over time, many parents report a deeper sense of empathy, patience, and perspective. Small milestones take on immense emotional weight. A first word spoken at age six, or the ability to make a simple choice independently, may feel more profound than these levels of achievement in normal children.
Coping with societal stigma and expectations
Beyond the internal family dynamic, parents must contend with external judgment. Misunderstandings about intellectual disabilities persist in many societies, sometimes leading to social exclusion or subtle forms of discrimination. Parents may feel judged—by teachers, relatives, or strangers in public spaces – especially if their child’s behaviour deviates from what is considered “normal”. This ongoing scrutiny can erode confidence and increase stress.
This is the time when support groups, organisations and professional individuals play an important role in steadying emotions, building confidence and offering validation, reminding parents they are not alone.
The emotional spectrum
There is no doubt that the emotional experience of parenting a child with ID is nuanced and often contradictory. Parents may feel immense love and joy in their bond with their child. At the same time, they may experience guilt for feeling frustrated, or comparing their child to others. Some may harbour fleeting resentment at the limitations the disability imposes on their personal freedom, careers, or other family relationships.
These feelings are rarely talked about openly, yet they are common and human. When acknowledged without shame, they can become catalysts for growth and self-compassion.
It is also good that parents may experience and understand that their unconditional love often transcends conventional expectations. Their children may express affection, honesty, or creativity in ways that challenge and expand their parents own understanding of what is of real value in human connections.
Resilience and adaptation
A key, documented factor reflects that families raising children with disabilities exhibit extraordinary resilience. This doesn’t mean they are immune to hardship, but rather that they develop adaptive mechanisms to cope and grow. Crucially, resilience does not mean denying pain – it means learning to hold both pain and joy together. It is the quiet, steady practice of showing up, adjusting expectations, and finding beauty in difference.
Key factors that contribute to the development of this powerful truth, include:
- Social support (from partners, extended family, support groups)
- Access to educational and health resources
- Self-care and boundary setting
- A sense of control or agency, such as participating in decision-making
- Humour and perspective
Looking ahead: hope and planning
As children with intellectual disabilities grow, new psychological challenges may arise: navigating adolescence, managing social dynamics, preparing for adulthood. Parents must plan for the future – considering a future beyond their own lifespans that may involve long-term care, legal guardianship, and financial planning. This is a point when they must trust others to continue the care of their child; educators, therapists, social programmes, and the broader community must instil confidence in their willingness and ability to share in the care and success of the child.
A different, not lesser, journey
Parenting a child with an intellectual disability asks for flexibility, courage, and vulnerability. It reshapes the way parents think about success, independence, and human value. Though the path is often steep, it is rich with moments of clarity, love, and deep connection. In supporting their children, these parents often become stronger, more attuned, and more open-hearted – redefining what it means to grow, not just as a family, but as people.
The story of Sunfield Home
Chris and Lynne Bennett, parents of a young girl with Down Syndrome, pursued their dream of establishing a home for their daughter and other intellectually disabled young adults in the Western Cape. Together with other parents, they founded the Sunfield Home in Wellington, providing a loving and nurturing environment for over 100 residents and day-care adult individuals.
Each individual is screened to evaluate their strengths and allocate activities according to their abilities. A protective workshop has been established where contract work is undertaken, as well as arts and crafts activities. An employment scheme has also been developed and as a result permanent and successful positions have been found within the surrounding wine and cheese industries.
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