Parenting the Gifts of God

Parenting the Gifts of God

“A diagnosis can’t predict the extraordinary love that you will have for your child.” – Tara Mc Callan

The ecstasy, joy, gratitude, euphoria, cheer, elation, exhilaration, bliss, merriment mirth……. well words will always fall short of the intensity and depth of the range of emotion parents experience when they hold their tiny, innocent bundle of joy for the first time in their own arms. Yes, giving life to life itself is one of the most miraculous and satisfying experiences in the course of a person’s life. All around the world children are considered gifts of God and blessings from heaven by parents who invariably do their best to make sure that their children get the best of everything that they possibly can afford. They sacrifice for them, embrace them with love and bring them up with utmost sincerity.

But what if the child you have brought into this world is diagnosed with some dreadful problem that is beyond your capacity or capability to heal. The whole universe comes crumbling down and dealing with the devastation becomes really challenging. A recent study at the University of Wisconsin, Madison USA found that mothers of adolescents and adults with autism had levels of stress hormones comparable to soldiers in combat. In fact, apart from the financial burden or sometimes the frustration of a parent, usually the mother who has to sacrifice her career to attend to the child’s needs, the emotional impact is even greater and may include –

1. Guilt over the limits of a parent’s ability to protect the child or the loss of attention towards other members of the family and the question of whether we are doing enough or doing the right things to help the child.

2. Grief over the loss of hope and satisfying experiences and shattering of the rosy picture that parents tend to paint for the future.

3. Fear about how the child would be able to fend for himself or herself when we would not be around.

4. Insecurity about who would take care of us when we are old and aging takes a toll over our abilities.

5. Feelings of isolation as we tend to miss out family oriented activities, fun with friends and professional meetings.

6. Jealousy towards parents who have typical families.

7. Resentment that every day is filled with challenges.

Coming to terms with all this and parenting a child with special needs can be quite taxing and demoralizing. Here are some ways to deal with it –

Sort it out in your mind first -It is not easy for parents to accept their child’s diagnosis. Parent’s usually go through three stages. The primary stage is that of shock, hurt, disbelief, denial, despair, withdrawal etc.; then in the second or the secondary stage they cope with rejection, negative feelings, guilt, anger, shame and then gradually realization dawns and the tertiary stage of adaptation, reorganization, acceptance and finally cognitive coping begins . The shorter the time gap between the primary and tertiary stage, the earlier the intervention can begin and the more the child would be able to gain. Therefore, parents need to reach the final stage of acceptance whatever it takes like prayer, meditation, counselling or joining a support group.
Educate yourself– It is of extreme help if the parents are able to learn about the disability and its medical or scientific reasons. This avoids getting involved in superstitious practices which do more harm than good. Moreover, there are innumerable examples of parents especially mothers who make the effort of acquiring professional training in the field their own child needs help and end up working or setting up schools or centers which not only benefits their own child but creates an opportunity for others too. A fine example is the way a mother has started a special school for autistic children thereby building up a community where everyone handholds each other.
Find a support system and ask for help when required– Bringing up a child with special needs requires a lot of time and energy. One of the parents who has a child with cerebral palsy would get so tired by the end of the day that she found it very tedious to cook the evening meal. Then, her husband, who was thankfully very supportive, helped her out by arranging a tiffin service thus giving them both some relief. Another situation which is very common is when sometimes something very urgent pops up and you have to leave the child alone. Well, don’t over engage in -to do or not to- sort of negative self-talk. Just request a neighbor or relative to baby sit.
Manage your relationships– Dealing with a special needs child can be quite emotionally draining and if on the top of it you have a difficult relationship to deal with, it becomes a nightmare. Therefore, parents need to extinguish any relationship issues by mutual understanding and if needed, taking guidance from a counsellor. Moreover, if you feel that siblings need some kind of space, attention or counselling, it’s worth it. If you feel that you can’t give enough time to your other children, then make sure that one of the parents spends a little amount of quality time with them which could be on the dinner table or before going to bed.
Work on your time management– While acclimatizing your child, it invariably happens that your routine goes haywire but it is important that each minute of the day be utilized well. It helps if parents can stick to a schedule and allocate chunks of time for various activities including time for rest.

A very unique way of doing it by a mother was that since she hardly got any time for her exercise, she came up with the idea of doing skipping in the morning everyday while her tea would be brewing. Parents can even make a written timetable and find out creative solutions for major time stealers.

Try out alternate sources of income– It is always a good idea to try out other honest sources of income which can help you cope with the situation better. A single mother of a paraplegic child shifted to a smaller property so that she could give out her apartment on rent and manage the ever escalating physiotherapy costs of her child.
Ensure a regular education– Although the government has given many schemes for ensuring inclusive education, many a times a child may need to be in special school which might not be available in the vicinity. One of our neighbors who works in the government department and has a deaf and mute child requested a posting in Gurgaon. Although he had to sacrifice his promotion, he does not regret his decision as now his child has grown up to be a graphic designer after basic education from the special school there and is getting a package equivalent to any one in an MNC.

Find ways to celebrate and add fun in daily life– Even if you are too bogged down, make a deliberate effort to celebrate small achievements or just try out some manageable activity that can be thrilling on festivals or birthdays so that the tension of the daily drudgery lightens up. One of the best ways to grapple negativity is to laugh your troubles away. A mother whom I know for many years now has a mentally challenged child. For a few years she was too depressed but then one day she heard some giggling which converted to peals of laughter. She found that her other daughter came back from school with some Holi colours and had smeared them on her sister’s forehead and both has started to play. From that day she realized that fun and frolic could be a part of her frustrating life too, and therefore made it a practice to celebrate all occasions in small ways and now their family is a lot happier.
Build your own resilience

As the airline protocol in distressing situations is followed in a manner that the passengers should put their own mask first before helping out the others even if they are their own children, if the cabin pressure falls; a similar kind of self help and support agenda would go a long way in helping parents deal with the distressing situation that life has offered to them. It is quite therapeutic for a distressed parent to indulge in a relaxing activity. Therefore, I urge the parents to make it a priority to do something that rejuvenates them on a regular basis. That would be your fuel to keep you going through all the trials and tribulations. A mother of a thalassemic girl was an avid reader but after her grueling schedule of taking care of her daughter started, her reading took a back seat. Then she did some out of the box thinking and instead of driving her daughter to the hospital for her weekly dialysis she started taking a cab. That hour long drive has now become her special immersive reading time as her daughter dozes off and she gets the luxury of feasting on her favourite books.

Don’t expect yourself to be the perfect parent. – When parents embark on the emotional marathon of nurturing a differently abled child the most important thing is to learn to let go off the guilt and the sense of victimization. Instead of indulging in the vicious circle of the blame game, try to condition thee mind to feel grateful that you have been chosen to do something which you are capable of and do it with a sense of spiritual sincerity.

Yes! of course it is difficult, hard, challenging and may be unfair too, but it is our divine responsibility to make our special child “Saksham” i.e. competent to lead an independent, contented and if possible meaningful and productive life. After all, the child is a gift of the Almighty entrusted to our care, let us nurture with courage and love. For, in the words of Rumi- “the wound is the place where the light enters you”

References –

https://www.bu.edu/fsao/resources/parenting-children-with-special-needs/