In my shoes.

Author: Janaki Balakrishnan

I may not know what a normal day for anybody else would be like. May be there are bigger problems or greater hassles that one has to suffer in one single day. I would feel far too humble to share these problems that are typical to a family having a child with disability. My intention in sharing these concerns is to encourage other parents who dwell in similar situations to come forward and share their concerns as well. When shared, the burden seems so much easier to carry, and it may bring forth joint solutions.

Parenting a special child can be an insurmountable task with endless challenges and hassles. My son is 16 years old, diagnosed with Cerebral Palsy and Mental Retardation with associated hearing impairment since birth. His functioning level is of a child less than two year old. What I have to go through is a series of everyday tasks a mother of any toddler would struggle to deal with on a given day. One needs a lot of stamina and commitment in terms of time, efforts and capability to nurture a child in the early years. More so in case of a child with special needs, through the growing years.

First thing first, when one has a child with complex needs one has to live in the moment. Daily planner and scheduling tasks are ineffectual as uncertainties and unpredictable times are part of everyday life. Usually I can meet 2 or 3 of out 5 of my daily goals and always have carry over tasks for the next day to follow.

Now, to answer what it is, my day, one day or any day – it is actually like walking in the minefield. One faltering step may lead to daylong blasts. Given conditions that he cannot hear, has associated speech impairment and his cognition is too limited to be able to use hearing aids, one could imagine the restricted pattern of interaction and experiences with the environment that he is living in. One may be aware of this stage of child development, where an infant’s only toy is the parent and the child enjoys the attention of the parent. That is the major part of my engagement with him every day. For sure, I cannot sulk or retire, and it is going to be that way lifelong.

My son is under medication for sleep and seizure disorder. Medications of these types, as I read in the literature, eventually produce harmful effects on his behavior. There are some typical behaviours that he exhibits like head banging and picking at his cheeks. One has to be on guard to prevent him from these self-injurious behaviours. Sometimes it could be because of biological causes, or mostly out of his frustration for not being able to communicate. As you might expect, I have been the best person to understand his communication quicker than anyone, which leaves me as his cornerstone. So, I am his indispensable adult, which therefore binds my life to restricted personal pursuits. Often, I have longed for bazaar shopping when I do not have to think about the time to get back home, or make shopping list and do quick pickups. I cannot remember the day when I had this occasion last time. It has always been a hit and run shopping.

Now, this medication for seizure has to be given before or during the food. The seizure medications of these kinds are recommended to be spaced between 8 to 10 hours. I have noticed that he becomes irritable for the first one hour after the medication is given and then he calms down. The sleep medication is administered at just about the time to sleep but it does not work if his is stomach full. So he has to be fed an early supper if I have to give the sleep medicine at 9.00pm.  By 10 at night, he may get hungry again and ask for food. It takes two hours for the medicine to work on him and usually is 11 or 12 at night when he finally falls asleep. There have been instances in the nights when if he were inadequately fed he would wake up at odd hours and demand food. I would be falling asleep while making a quick oatmeal or even idlis and feed him and again take another two hours or so to put him back to sleep.

He sleeps late in the morning till 9.30 or 10.00. Often, I get advice that I should put him to bed early so that I can have a regular routine in the morning. In that case, I have to cook and serve dinner by 7, restrict activities (TV watching, attending to unexpected guests or answering phones) and put the lights off to create a kind of sleep environment by 9pm. With rapidly changing lifestyles, often evening is the time when people actually interact, and meet with family. If I have to shut down in the evening, I will be completely deprived of outside contacts. Also, there have been days when I get tired with long project meetings and slouch to set dinner. I try to provide a sumptuous meal at night because that is really the family time for eating together. I wish we all could plug and play any time but unfortunately we are all humans stuck with our own limitations.

Normally, I try to fit myself into his schedule — like sleeping and waking up with him — so that I can ensure adequate rest for myself to be able deal with him day long with sanity. There are people, friends or family who really do not approve of this atypical pattern. I mean, no one visiting us has complained about the situation face to face, but may be they think so or talk about it behind us. Well, I only wish that I could be the best hostess, but I cannot help enough. Somehow, I got into this pattern of sleeping past midnight and getting up by 8 or 9 am. Therefore, my day starts at 10 am in the morning rambling over 12 past night, and any usual routines that one might carry out, is always disrupted in my case. I know that people can give whole lot of solutions to these exceptional circumstances, but I think it is all easier said than done.

Life is so full of rituals or rules; as you make them you can hardly break them. If by sheer ignorance, I have indulged him in any activity that has led to positive reinforcement, I cannot afford to change or remove it. I may have to fight a battle to fade such behaviours. Despite my professional training, this challenging role that I play as a mother of a child with complex needs is often too tiresome to also think of and act upon what could become trigger events.
But never the less, I would agree that if one had money power and social support, these problems could be circumvented; and if friends or relatives had good understanding of the issues and concerns of the family having a child with disability, and they extended their support in whatever little way they could.

‘I’ in the article means, we, as a couple facing the hardships, and there are times when we switch roles, often one jumping off the fence but striving hard to hold on to the reins together and never wanting to let go. The very purpose of writing this article is as an exercise of catharsis for both the writer and the readers regardless of the problem situations we are in. In that sense, I am glad if I can help some others and myself.