Everything, but Naturally

How many times have you faced this in your life? You set a goal and you wish to achieve it dearly, no matter what. You go for it, work hard, face hurdles, forcefully and by vehemence, you counter the challenges, burn the midnight oil, and overcome all resistance, and then you emerge victorious feeling like a fighter. You achieve your goal. Many times, despite the efforts, you do not achieve your goal. It hurts a lot. Also you fall sick because of the stress, exhaustion, and indiscipline.

Let’s consider another situation; you have a wish in your mind. It has been running at the back of your mind. In times of leisure, you give it a thought and review it critically. In addition, during such wanderings, you ponder on the challenges you may face to fulfill that wish. Your wish then takes a back seat, and you plan to revisit it again later. In course of time, you start to put in the effort for your wish, the challenges that you had perceived give in to your hard work. The hurdles seem to vanish in thin air seeing your passion. Everything and everyone around you seem to facilitate you to achieve your goal. It seems you achieved your goal effortlessly. You reflect back and want to have a similar experience for all your endeavors and projects. You fail too, but it does not hurt as much, and you are eager to try again.

Out of the two, which one is desirable? The second one isn’t it. It may be a time taking process but you seemed to achieve your goal gracefully. The results  last longer, you did not force yourself, but you enjoyed the process. It seemed to happen naturally.


We wish to apply the same in our approach towards Peu, our daughter who has a diagnosis of CDKL5, a rare genetic disorder. Here are a few experiences, which made us shift our approach from a deliberate one to a natural one.

Our primary goal for her is to ensure that she is healthy and happy in her own way. It definitely was not like this earlier. We had rigid time-bound goals, tracked worksheets, maintained notebooks to achieve neck control, balance, mobility, cognition, speech, visual maturity and above all seizure control. We were determined to tire relentlessly. We kept trying to achieve the goals. Soon we realized that if we work towards the primary goal, the rest happens, everything that is possible in her capacity happens, but naturally.

Here are a few basic questions we asked ourselves and the answers of most of them were not in positive. Hence, we revisited our approach and realized the importance of allowing her to lead a life naturally.

Anti-epileptic drugs: Did any single medicine or combination of medicines and steroids ever achieve seizure control? Never ever. While she was on those medicines, was she healthy? No, she had numerous side effects and some were severe. Was she happy when on medicines or steroids? Never, she was always drowsy and struggling to do what she always does, that is try…. . We weaned her off all medicines. What followed was unbelievable for us. Every year we see honeymoon periods. Maybe seizures are a natural way to flush out the excess energy built up in her brain.

Therapy: Does she look forward to, enjoy or participate in physiotherapy? No, she usually cries for the whole 45 minutes or gives in due to exhaustion.  Did she achieve any milestones due to therapy? Maybe not. She achieved neck control naturally during the time when she was not in conventional therapy. We discovered a few therapies, which were in harmony with our “natural” philosophy.  Anat Baniel Method and Feldenkrais practitioner Cyndi Manes has been our guide.  Movement Integration specialist Michelle Turner is always available to answer our queries and guides us through her valuable Movement Lesson videos.  In our interactions with Peu, we have learned ways and means to only aid her and facilitate her in her incessant tiny efforts.


Food and feeding: Did we agree with the doctor’s general recommendation to insert a feeding tube/ a g-tube to avoid certain risks? No. Would Peu be happy with a g-tube? No, because eating is the only activity she participates and enjoys thoroughly. Did she have any swallowing or asphyxiation issue while eating? No, nothing specific but her swallow test did show mild swallowing issues with water. We continued to feed her by mouth with patience and utmost care. It was a relief to notice that all the swallowing issues vanished after we weaned her off medicines. Besides, she developed chewing skills and it is maturing gradually and naturally.

Her choices, likes, and dislikes: As  normal human beings, we tried to involve her in normal activities with other children. Were we sensitive to her likes and dislikes? No, we assumed she will love the gatherings, events, and get-together like any other kid. Were we observant of her subtle developments and progress? No, because we always expected her to display the usual laid out milestones and capabilities. When in a stroller, if she is unhappy or wants to be out of it, she raises both her legs. Initially, we interpreted such gestures as enjoyment but only after we took a back seat and became observers,  did we realize that she expressed her dislike by lifting both her legs. Her capabilities despite her shortcomings amaze us. She purposefully uses her legs to reach out for toys and communicate with her peers. She uses different tones to express different needs. Similar to most CDKL5 kids, Peu too does not use her hands functionally. However, every year, we do see some progress in her awareness of her hands. All these and more, she develops naturally.

We have no clue what lies in the future and what new challenges will fall upon us but at-least we aim to provide an environment for her mind and body to develop and progress naturally.








Has Life Been Unfair?

As the year, 2017 ends,  I put together my assorted thoughts, observations, and experiences in this year, as a special needs parent of Peu, who has CDKL5, a rare genetic disorder.  You will definitely relate to the topics and may want to share your opinion on them. I look forward to receive your responses.

Fun and Entertainment
We often reflect and wonder, ‘Has life been fair with us? Why do we and our child have to suffer so much when rest of the world is having all the fun and enjoyment that we too had once dreamed of? What is our fault?’

Over the years, I have realized that the above thoughts arise only in our minds, our child does not perceive life that way. A child’s outlook is limited to her interaction with her parents, her care givers, and the environment around her. She has no clarity if she is missing out anything. Therefore in her current perceived environment, there is unlimited possibility to keep her and ourselves entertained.

Identify what keeps your child physically engaged within her capacity. For Peu, we place dolls and toys in her vicinity. She rolls over to them, pulls them down and we notice a glint of smile in her eyes. And this does give us happiness and opportunities to keep her engaged and entertained.

Figure out your child’s likes and plan activities around them. For us, as a family, food is a common topic of interest and currently is the primary source of family involvement and entertainment. Peu loves to eat. We love to try out new recipes and cuisines. Peu participates right from the step of menu selection, recipe discussion, cooking, and then having the meal together. It is a family experience that is entertaining for all. She seems to know that we are discussing about a recipe. She signals by smacking her lips and making light noises letting us know that she too is game for it. While cooking, she refuses to be anywhere else but in the kitchen, patiently watching us and even willing to taste. if she feels we are taking too long to put together our meal, she raises her feet and makes a loud noise informing us about her dissatisfaction. At the dinner table, she enjoys the meal with us. This activity has become a daily routine in our life. She enjoys the whole experience and looks forward to the next food session.

Experiments with Food

In one of my previous posts, I described my findings on how we seemed to have found a way to control her seizures. This year we did some experiments with food on Peu and the discoveries henceforth.

Her seizure episodes increase if she has any form of infection or if she is exposed to loud voice or noise. Avoiding the above two triggers meant no clinical seizures. During her seizure free days, I introduced a few food items that I restricted earlier. I experimented with rice, wheat, pulses (lentils), night shade vegetables, and yogurt. I did not see any increase in seizures. Thus Peu gets to eat normally as other kids. This is a big progressive step and relief for us. However, when her seizure episodes occur due to an infection or exposure to loud voices, I completely stop these food items as they are known to cause excitement in the nervous system. When she bounces back to the seizure ( those that are visible or clinical) free state, I gradually restart those food items. I continue to give her the supplements and am very particular about her Calcium supplement.


We often complain, ‘why do others stare at our children? Have we committed a crime to deserve their strange looks and why do they embarrass or irritate us with their silly questions?’

Aren’t we being too harsh? If we get into their shoes, we realize that their reaction is nothing but curiosity combined with empathy or sympathy to the least. They might be trying to relate our child’s condition with a special needs child in their extended family or friend circle. It does sound fair enough isn’t? How do we handle such a situation, neither being embarrassed nor being rude?
This is how I deal with it. The moment I see a curious person approaching us, I display a broad smile on my face. Immediately there is a 360 degree change in their reaction. As a natural tendency, they smile back and all queries in their mind takes a back seat. Once the pleasantries are exchanged, both sides share more information willingly and the acquaintance may lead to other good consequences.

Life after Us

After we are gone, what will happen to our child? This question haunts every special need parent. This question leads to lot of stress, disturbing your current life enormously.

I refuse to get boggled by this question. It may seem impractical, but in my mind I firmly believe that either I will outlive her or we will leave the Earth together. I will always be there to take care of her in the most loving way that I have been doing so far. I do not want to get stressed with the future that is not in my hands and I feel something will surely come up if  the situation requires. The biggest advantage of such a thought process is that I consciously take care of my health be it physical, mental or emotional as i need to be fit enough to be able to live up to my expectations as a caregiver for long. This has been wonderful and beneficial for Peu and for me.

An alternative approach to this issue is to set up a support system for your child that would take care of her even when you are gone. There is no guarantee though and this exercise may need you to acquire in-depth legal know-how. Keeping life simple, I stick to the first approach.

Thoughts and Worry

Special needs parents  are constantly lost in thoughts about doctor’s appointments, medicine schedule, medicine refill schedule, therapy appointments, food allergies, immune system, side effects of medicines, special need equipment, seizure log, progress, prognosis, and more, besides the constant fear of having to rush to emergency any time of the day. Despite these kind of thoughts, we tend to find joy as we learn to become compassionate caregivers for our children. Let us not forget that normal parents are in the same state but their topics are slightly different, homework, after school classes, food & nutrition, sports practices, play dates, dentist appointments, project work, and parent teachers’ meeting, and device addiction to name a few.

I wish to conclude that life is fair for all. It is in our hands how we live it.

Here’s wishing all of you a wonderful new year and may the year 2018 be a joyous and fruitful one for you, your family, and friends.




Humor Uniformly

humorThis title is inspired from Reader’s digest, a very popular magazine. It had a section named ‘Humor in Uniform’ that had description of humorous situations in military environment. As a special needs parent, we can apply humor uniformly in most of our experiences thus equipping ourselves to handle stress better. We all know that stress never helps us to resolve the problem but instead harms us. Let us trash our worries and use humor to handle a stressful situation.

Over the years, I have discovered a fool-proof stress buster merely by chance. I owe this finding to one of my close relatives. He is an intelligent person and has an awesome sense of humor. Any event, even if its awful, he describes it with humor. The consequence is that when you as a listener and picture the event in your mind, you are laughing. Hence, instead of having disturbing thoughts you have funny thoughts. At the same time, the person describing his issue with humor instead of worrisome words feels happy to make his audience laugh. This humorous conversation becomes a stress buster for both, more so for the speaker. Hence the stress factor becomes a stress buster.

Let’s see a working example:

A middle-aged and a hard-working person (HWP) has been recently diagnosed with high blood pressure(BP) and high glucose levels. His conversation with his well-wisher (WW) about his sickness.

WW: Hello, how are you. Has your work pressure reduced?
HWP: I am doing good. Work keeps me busy not sure if it keeps me healthy.

WW: What is new?

HWP: Oh! did I tell you, I have 2 guests visiting me these days and looks like they are here to stay unless I can convince them to leave! They better leave ASAP!! Laughs

WW: Who are they? Do I know them? Let me do the talking? I can help.

HWP: Well these guests are not yet bothering me much and my young doctor friend advises me to send them off with peace. A senior doctor friend had scared me that the two guests are here forever!! I am not getting confused. I will drive them away for sure.

WW: Are they the doctor’s friends? Who are they? How are you managing?

HWP: I am always with them or rather they are always with me. They wake me up early,  go for walks, and exercise with me. They even hover over my food plate forcing me to change my diet and have a little less in every meal. It seems to be helping and I see the guests calm.

WW: Interesting! Are they sports persons? Are they eating food from your plate? You seem to not be very unhappy about it.

HWP: Going for walks is a long time wish coming true and modifying diet is helping everyone, even my cook. My latest interest in diet and nutrition will drive these unwanted guests away.

WW: All the best but I would like to meet them too.

HWP: Oh no, no, I will prefer that you do not. Rather you need to avoid them completely.

WW: That makes me curious!! Can I meet them now?

HWP: These days they are found in many households but they have recently moved into my place. They are BP and Sugar!

WW: What!!! You are so calm about it. You sure will drive them away. I bet!

HWP and WW : Laughing away!

If you imagine this conversation, this was a pleasant conversation on a serious topic. This might have been a stress buster for HWP and it gave some positive emotions to WW.

I summarize:

  1. First step is to recognize you are stressed and then add a humor element to the stress causing situation. Here is a tip: The moment you realize you are stressed; imagine the smiling face of a person who is humorous or a comic character or any friend or family who makes you laugh. Instantly you will get a smile on your face, your brain relaxes. Train your brain to interpret your issue /situation in a humorous way. Think it aloud or even better, share it.
  2. If you can practice 1 successfully, you will develop a habit of being calm and jovial. Consequently a calm brain will get creative to figure out a solution of your issue.

 This tool has helped me face and handle our ever dynamic grave situations as a special needs parent in a calm manner.

peu_smile I conclude with a note on how Peu, who is diagnosed with CDKL5, a rare genetic disorder too participates in our effort to internalize humor in life. These days after a spasm or a head drop she gives a big smile or sometimes giggles which is opposite of a scream/moan that usually happened earlier. Seeing her smile, we are bound to smile back and feel relieved that she is not in pain. The smile might be an unexplained neurological response of her brain but we interpret that as her contribution to apply humor uniformly.

Your thoughts are always welcome.

No Conflict Zone

homeThe title of this post is probably something that citizens globally are seeking today either due to geo-political reasons, economic reasons, or religious reasons. However in my post I deal with our attempt to make our home a no conflict zone. I do not claim to be fully successful but our strive continues. I will share my experience and wish to receive your feedback.

Most special needs parents will agree that we argue with our spouse much much more than in natural circumstances and we know how our lives transformed emotionally as we moved into a role of  a special needs parent. A conflict between us seems inevitable and arguments happening at the drop of a hat is an understatement. Reasons are galore and could be very minor, for example you gave her meds at 8:15 AM but your spouse wanted them to given at 8:00 AM and comments that you are careless. The next time, you see your spouse busy on a phone call ( might be very crucial for him) instead of attending to your child, you do not miss the opportunity to taunt him as you had been nurturing the hurt feeling for hours. The end result is totally unnecessary. A war of words ensues. The environment of the house is opposite of a no-conflict zone. All said and done your child suffers unknowingly. One obvious effect is when you are working with your child immediately after a conflict, you realize the quality of your work drops, your awareness and your concentration is impacted. This is definitely not what we want.

Though the objective are the same for both of us : helping her, ensuring her well being and activating her brain then why do we argue, get hyper, get stressed, retaliate and yell. We probably conclude that the stressful situation due to her health condition takes a toll on both. But we cannot play the blame game here, the solution is in our own hands. We need to do a favor to our self.

There is a simple solution. Modify your tone. Whenever you are conversing, whether you justify a particular task or you provide your point of view, or introduce a  controversial topic or give a contradicting reply etc, do it in a relatively softer tone than you have been doing. It works wonders. After you start applying it in your daily conversation, the awakening will happen on the other side too. You will  be amazed by the results. Initially you will have to do it with awareness and consciousness. Gradually it will become a part of your conversation style and then your habit. Consequences are awesome,  you will always have healthy conversations and will look forward to work as a team in the no-conflict zone of your home. Not to forget, the ultimate beneficiary is your child.

There is another tip shared by Sudip, Peu’s father; difference in opinion are natural and due to various reasons we might get into arguments with each other. But retaining the unhappy/bitter mood for hours is damaging. Instead, in a few minutes, trash the bitterness, forget and move on. This too is a gradual process and will not happen overnight but put in a conscious effort to get over with the situation and thoughts.

Every situation has a silver lining; during one of our heated discussions we discovered Peu’s (diagnosed with CDKL5 disorder) cognitive maturity. As we argued, Peu swayed her head side to side looking at us one at a time whenever it was our turn to reply during the conversation. It was an eye opener. She seemed to understand everything and probably was laughing at our silliness.

Your thoughts are welcome!.