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Submitted by PatientsEngage on 25 February 2017

The parents and families of children with special needs go through a lot of stress and anxiety in bringing up their children. Dr Roma Kumar, a Senior Consultant in Clinical Psychology, discusses various issues that these parents have to tackle on an almost everyday basis and possible solutions.

Q1. Different research and surveys across the world show that more than 50% of the parents of children with disabilities suffer from anxiety, stress and depression. In your experience in India what are the top few factors that contribute to such high anxiety and stress levels.

  • The disability sector is a neglected one in our country, as opposed to its Western counterparts. The government of India practically has very limited and skewed provisions for the disability sector. On top of that, the professionals are also not consistent with their method of interventions as well as treatment. Parents of a disabled child usually run helter-skelter for support and proper guidance.
  • Practitioners often take advantage of this helplessness and mislead them due to their professional insecurities. There are also professionals who try to treat disabled children without the requisite expertise. As a result, the child and the parents end up being a deprived lot because they don’t know any better. The hapless parent, as a result, moves from one doctor to another in the hope of getting relief. The training in this sector is also very varied, which results in an inconsistent approach. We have poor facilities for the disabled child at most institutions and very little help is available under one roof in a standardised format. Very few pediatricians also do regular follow up. There is limited team approach from the medical side as well.
  • Play school is the other hurdle - first the admission and then how the child conducts himself in school. The school, if at all, usually employs one therapist, which is not adequate for the entire school. People working with disabilities need to be committed and accountable, which is not always the case, which leads to malpractices. The child suffers and the parents of course.
  • Our government is not proactive enough to take care of the expenses of the disabled children who are financially challenged, which naturally adds to the burden. There is no insurance accorded to these children as is the norm in more developed countries. In our country, therefore, a disabled child is deprived of every support: financial, medical, emotional as well as infrastructure-wise.

Q2. Every parent is anxious about their child. How does anxiety in a parent of a disabled child differ?

Parents of a child with disability feel a disproportionate level of anxiety. Labels are thrown very easily, some of them distasteful, some inaccurate, some are just in vogue, whereas others useful to understanding and planning.

The first and foremost thought is what will happen to the child should they not be there. The child will not be able to fend for himself without them. In case of a sibling, there is usually a lot of baggage on the sibling. The stress for a family in case of a disabled child is far more intense and deep rooted. Under these circumstances, lot of marriages break apart or maybe the parents just stay together for social purposes. In the case of both parents working, how will they manage for a parent to be always available for the child.

Then there are obviously the financial issues. A family needs adequate financial backup for the proper upkeep of a disabled child. There are also developmental issues about the child which need close inspection. Social issues also play a huge role as most families develop a negativity which is hard to counter. Environmental issues also pose a problem, like malls, supermarkets and even roads are not even conducive to the movement of disabled children. Assistance in any form, whether it is government certification or even rehabilitation consultants are hard to come by. Most people do not even know about this certification as they are also ignorant about a disability pension, which, if availed, can make life a little less difficult. But none of these are well-defined in any manifesto as a ready reckoner.

Having said that, physical disability is still relatively better structured than intellectual impairment, or autism spectrum disorders. Even visual impairment is better accepted. Hence, there is no end to the parents’ misery and anxiety. They have limited free time and a decrease in relationships with other people. Increased levels of anxiety and frustration build up due to social, emotional and financial isolation.

Q3. Are there differences between a mother and a father? Does the anxiety in both manifest themselves differently?

Naturally, there is stress and anxiety in both the parents. Grief and disappointment do not get processed as parents hardly find any time for these issues. Parenting is hard no matter who your kid is – and no matter who you are. The manifestation may, of course, be different.The mother often always has to take the bigger brunt. She has to take maximum responsibility in taking care of the child and often feels guilty if she wants to take time off for herself. Due to lack of respite from the 24/7 challenge of caring for these children, she faces huge challenges for herself and the family.

Another source of stress is that often one parent is generally more effective in managing the difficult behaviours. The man, in my experience, often has the liberty to take a break from parental responsibilities without feeling the same level of guilt. But the younger generation is different. They are definitely more hands on.

Families with disabled children experience poor mental health such as anxiety, depression or breakdown. They are often unwell -- and so they ask their GP for medication and often even choose to see a counsellor, which is a welcome step.

Q4.What is the impact of this anxiety and stress on the child with disability and the rest of the family?

That is something huge because of discrimination and stigma. Children with severe special needs drain enormous amounts of time, energy and money. Marital problems are reported to be present to a greater degree because of the lack of time for nurturing the marriage plus the frequent problem of parents disagreeing on what needs to be done for the child. If the mother goes through psychological stress herself, the child gets terribly stressed. The parents are usually very isolated and despite information that may be readily available through the internet, they still end up feeling as if their struggles are unique and represent their failures as parents.

And if there is a sibling, then the latter gets stressed too. The percentages differ naturally. It has sometimes also been seen that the parents have got their disabled son or daughter married off, after which it becomes the responsibility of the sibling to ensure that all is well. So the entire family and the siblings need counselling. Everyone needs recreation and an opportunity to rejuvenate himself. It is a pity that our country has very little to offer by way of recreational activities and sports.

Q5. What should the parent do to navigate through these feelings?

What works best is the parents support group. If the parents want to go out for a movie, others in the group can then step in. We need to work with the government to create more areas of help and support, to create friendly set ups, disability friendly areas, caring homes as well as systems for vocational guidance. Many things can be taught to the children, which we need to look into. Even the theory of inclusiveness needs a re-look. Very few people employ people with autism or intellectual disability. So the taboo remains even in employment. Social programmes that support the parents in respect of both financial matters and home-care facilities should be set up.

Q6. What can the family, extended family, friends and neighbours do to help the parent of a child with disablity?

Society can be cruel!! Neighbours, self-appointed experts, teachers and even complete strangers should stop giving advice on how to raise and discipline a child with special needs. Families with children with disabilities face continuous challenges in finding someone to watch their child for a few hours so they could have time for personal, marital, social or family activities. The typical baby sitter or caretaker usually lacks the skills and even if one lives near the family, they too often seem to lack the understanding or patience required to help. In fact, very often, extended family non-support has been a key issue of extreme anxiety and stress. Too often these parents are criticised by their own extended family for not being able to better manage the behaviour of their child with severe special needs. This frequent results in avoiding family and community events as it creates more negative feelings.

Acceptance is the key word here. Children with special needs deserve acceptance. Neighbours should not be looking at the child differently and should even encourage their own children to play with him. 

There is no blue-print, no road map and no singular plan for how to go about securing assessments, support, services or classifications for children with disabilities. Support from statutory services such as social services and the education system need to be enhanced. Effective early intervention services and financial help will surely allow families with children with special needs to take control of their lives, hold down a job, be more involved in their community and feel less isolated.

This would further ensure that disabled children can participate fully in society and enjoy fun in social opportunities. There should be inclusion in every form.