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 a times, despite the efforts, you do not achieve your goal. It hurts a lot. Sometimes, 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 time 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 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 seems 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 deadly. 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 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 amazes 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.