Understanding Parents of Children with Special Needs
Pr. B. Saji
No parent desires to have a mentally challenged child. However, due to reasons beyond any human understanding, some parents may find themselves in a situation where they have to contend with raising a mentally handicapped child.
It is a shocking and alarming fact that approximately 2.5 to 3% of India’s population are identified as mentally retarded, which in most cases is a life long condition. Raising and caring for mentally challenged children at home is a life long challenge for parents. Since such persons function at an intellectual level that is way below average and have difficulty in learning and lack in using daily living skills. Conceptual skills like language, social skills like interaction, and practical skills like self-care lack in people classified as mentally retarded. Children labeled as such need special care to overcome social, intellectual and physical disabilities.
Parenting a mentally handicapped child poses daily and numerous challenges to the parents. It calls for very well organized plan and strategy to overcome and learn how to cope with parenting a child with special needs. A mentally handicapped child experiences delay in many areas of development. Parenting of children with special needs requires the parents to first realize, accept and then appreciate the fact. Doctors are capable of noticing mental retardation in a child even immediately after birth. Thus it is important to seek expert opinion from qualified doctors as early as possible and assess whether the disability can be corrected. In most cases these disorders are not tenable to any treatment and therefore parents must cope with it. Set aside a serious share of parenting resources towards the care of this mentally challenged child. Remember that they are more prone to diseases and minor household accidents than the ordinary children. Thus, always pay extra attention to the disabled to avoid household accidents and hazards. Remember to keep them clean, well fed and medically fit. Be careful to detect any signs of health threat and seek medical interventions as early as possible. A parent faced with such a situation therefore is able to understand that the child will require more, regular and extended attention for a longtime.
Role of Parents in Education:
Educating a mentally challenged child is an uphill battle for a parent. The parent of a child with developmental disabilities may have to deal with complex issues related to education. Either a private education or an adequate public education must be sought for. Parents must advocate for their child to receive quality education which will enrich them. This often requires close parental contact with the school systems.
Parents must monitor the child’s interactions with others, and keep the following in mind regarding the child’s education:
l Is the child taking too long in learning a spoken language, developing social skills or simple problem solving skills ?
l Is there delay in learning self-care skills – such as being toilet trained and in daily routines ?
l Check whether your child has a problem with memory- as a mentally challenged child will have problems with the development of cognitive and learning capabilities. This disability affects the brain and general body development.
l Take time to teach these special children simple personal care skills. This requires a lot of patience and the consistency to the activity.
l Do not isolate your child from the rest of the children and the society at large. This will prevent the child from proper learning and therefore worsen the situation.
l A parent should remember that each child with disabilities requires an ‘Individual Education Plan’ (IEP) which will specially state what services the child is entitled.
l These children have unique abilities and parents should ‘cultivate interests and talents of the child, they may not be head of the class when it comes to reading and studying other subjects, but often these children have specific interests and talents in other areas that parents can encourage and give opportunities for growth. For example, a child who enjoys music or drawing can be given individual lessons, to develop that talent.
Parents Role when Disabled Child Turns 18:
Mere physical growth of such a child with no mental growth causes much anguish and pain to the parents - to see that their child is gaining adulthood physically but is still a child as far as mental growth is concerned.
Parents of normal older youth enjoy watching their children grow and into responsible adults, making good decisions and struggling with other choices, it certainly keeps a Dad and Mom in an attitude of prayer.
But there is poignant pain as parents of mentally disabled r children watch their kids grow, unable to take any decisions in life. This is when parents have to take decisions for them. This can be be hard on the parents.
How can such parents help their child lead a happy and meaningful life with healthy friendships during times when these young adults express interest in the opposite sex and in matters that are not explainable to them? They can never understand that sexual intimacy has a sacred and private aspect. They do not differentiate the need to maintain the privacy of certain areas of life and body.
This is more difficult in the case of girls gaining puberty. When both partners who are mentally challenged engage in a physical or sexual relationship, the pain is difficult to bear and handle.
Such young girls cannot remember the dates of their monthly cycles and this means the parents have to be extra alert to all such needs of their daughter. I have been told of a 25 year old disabled lady. Her mental age was about 6 years, was wooed into a sexual relationship by a differently abled man, becomes pregnant. When the family realized what had happened, the lady had to undergo an abortion. It is extremely hard to measure the hardship and pain through which the whole family, especially the parents went through during and after this incident.
The Protection of these Children after the Death of the Parents:
Their child’s future is of much concern for the parents. The Lord has enabled me to start an institution and rehabilitation centre for the mentally challenged (MIZPAH, KAYAMKULAM, KERALA), I am constantly faced with fear on this issue and realize this is probably the greatest worry that such parents go through.
There are many instances when parents visit my office and ask me, “Pastor, who will take care of our children after our death”? I have no answer for this heart breaking question. Some are parents from families with sound financial backing and can make good investments for their children, but who can the parents trust and handover the disabled person with their wealth?
Understanding this predicament, the ‘National Trust’ has proposed to set up a ‘Local Level Committee’, headed by the Collector and other members in order to gain conservatorship or guardianship of disabled person and their wealth or inheritance. This may, to a certain extent, be a safety measure for the disabled person’s future.
Emotional Issues of the Parents:
Parents of mentally challenged children commonly experiences immeasurable amount of emotions over the years. Raising a child like this requires tremendous emotional strength and flexibility. The child has special needs in addition to the regular needs. Parents can find themselves overwhelmed by various responsibilities. Whether the special needs of the child are minimal or complex, the parents are inevitably affected. Moreover, they often struggle with guilt. One or both parents may feel as though they somehow caused the child to be disabled. This guilt can harm the parent’s emotional health. Most parents have aspirations for their child from the time of birth and experience severe disappointments frequently. And the parents often are faced with embarrassment and feel ashamed that their child is mentally disabled.
Physical Exhaustion and Stress of the Parents:
This can take a toll on the parents of the mentally challenged. The degree of this is usually relative to the amount of care needed such as feeding, bathing, moving, clothing the child etc. These children need detailed medical monitoring. The child also needs to be watched very closely to avoid in advertent self-harm such as falling down or walking into the streets. These additional responsibilities can take a physical toll on a parent, leading to exhaustion.
Parents take a Break:
Raising a mentally challenged child takes extra energy and time of the parents. This causes high stress levels, and parents tend to prioritise the child’s needs neglecting their own physical health and relationships. To avoid such problems, parents should find a trusted individual to care for the child once a week, so that they can pursue their own interests, nurture relationships or just take a break from the ongoing needs of a special child in need.
If their offspring’s are disabled, the responsibility of the parent increases, when they have to deposit more time, energy, finance for their well being and care. This adds to the pain and pressure within their family life.
I take this opportunity to share my personal experience as well. God has blessed my wife and I with two daughters. With their birth we saw challenges one after the other, as both of them are mentally challenged. My wife Sheela and I spend a lot of time each day helping them with their daily routine. Until 2003, when we began this institution and rehabilitation centre for mentally challenged (Mizpah Rehabilitation Center), we endured much pain. After the Lord enabled us to initiate and establish this ministry, we realize why God has given these beloved children into our hands. Today we are responsible for 106 such children. The parents of these children are blessed through our interactions and we are happy that we are able to bring some comfort and relate to their painful experiences since we face the same challenges each day.
Parents, I want to encourage you to remember that God, the Almighty has given these children into your life with a great purpose. He has done this knowing you can be entrusted with this noble and tremendous responsibility. Thus, recognize God’s hand in all that you have been given and be submissive to His will. That alone will fulfill God’s aim through your life.