Parenting is a mammoth task in itself. And when there is a child with special needs, it demands extra care, compassion, time and patience.
The American Psychological Association states that children who need special attention also require special education. Such children may have disabilities relating to learning, intellect, body or emotion.
According to United Nations Educational, Scientific and Cultural Organization (UNESCO), there are an estimated 78 lakh children with one or other disability in India. Happiest Health speaks with experts about how to bring up a child with special needs, and ways to tackle the many issues along the way.
The emotional experience
Bavitha Thomas, psychologist and outreach associate at Mpower counselling centre, Pune, states that parents experience a range of emotions right from the time a disability is discovered, and it can be shock, denial, anger, depression and acceptance. “Experiencing these emotions is natural and is a gradual process to reach acceptance,” she says.
According to her, the experience may involve these emotions:
- Fear – Constant worries and fear revolving around the child’s future in terms of safety, security and career.
- Self-doubt – The question of whether you are doing enough or encountering criticism and judgement of your parenting from others.
- Guilt – Not being able to give adequate attention towards other children, the spouse or dependent parents or elders because caring for the special child is taking much of one’s time.
- A sense of isolation – Opting out of family or social events and missing out interactions.
It may be difficult for parents to acknowledge these feelings to themselves because of societal pressure of what it means to be a ‘good’ parent. However, it is important to validate their own experiences and create space for these emotions.
Some common mistakes
Thomas elaborates some common mistakes of parents:
- They are impatient and expect results as soon as therapy begins.
- Tendency to compare their child with others who may not have the same problems.
- Putting the interest of the parent before the child’s needs.
- Ignoring and underestimating even small positive changes in children deprives them of the support they deserve to progress.
- Being in denial and not giving the children the right help they need at the right time.
According to Juhi Pandey, rehabilitation counsellor from Kathua, Jammu, a common mistake by parents is getting so carried away in the role of being a caregiver that they end up neglecting their own needs and self-care. “This can build a lot of frustration within themselves,” she says.
Basic skills and learning aids
Bavitha Thomas says that one of the ways to care for a child with special needs is to teach them functional skills that will help their child build a career or meaningful, less independent life.
She adds that a child can learn easily from teaching aids or strategies that involve them; and by making them repeat the concepts many times a day.
Another technique, she says, is to start with smaller goals, which may take them towards bigger goals later. Along with this, “Ensure you give immediate and positive feedback so that the child will be motivated to do better and forms a strong association with the task/behaviour,” she says.
Juhi Pandey says an important step is to accept the child’s seemingly odd behaviour. “For example, a child with autism may have a meltdown in public. Parents should not get offended or worry about what other people are thinking,” she says.
Importance of self-care to prevent caregiver burnout
Thomas and Pandey both emphasise the importance of self-care in caregivers; It will prevent fatigue and burnout. They suggest parents should take time out for themselves and maintain an identity which is beyond that of only a caregiver.
Pune’s Thomas suggests some tips for care givers’ self-care
- Seek support: Interacting and discussing these matters with other parents who are going through similar experiences can provide emotional support and useful advice.
- Take breaks: It is essential for them to take regular breaks from caregiving responsibilities.
- Give priority to your health: Consider taking up stress-reducing activities such as meditation, yoga or deep breathing exercises as a routine.
- Set limits: It is all right to say `no’ to additional responsibilities or requests that may overwhelm you or throw you off track.
- Make time for hobbies: Engage in activities that you enjoy and that help you relax.
- Connect with your partner: If you have a partner, try to spend quality time together. Plan regular date nights or engage in activities that strengthen your bond. Openly communicate your feelings, concerns and needs with each other.