‘My life has changed after my child was born’ !! Most parents will nod after reading this statement. Special needs parents will nod vehemently. I recollect, not with melancholy, but with awe how our daughter Peu has been impacting our lives. In this post I humbly describe how Peu, who has CDKL5,  a rare genetic disorder has facilitated a positive transformation in our (her parents) lives. And you may ask, ‘how will this post benefit parents?’

This post will help you reflect and visualize the little things that have changed in you because of your precious child. Your positivism will enhance your energy to work with her and enable all possibilities further.

Spending time with Peu as her caregiver has had an immense impact on my degree of sensitivity. I realized that Peu has always communicated her likes, dislikes and fears. However it took years for me to reach a state where I could understand all her expressions. All these years must have been frustrating for her but now things can only get better. In order to achieve this sensitivity, I had to be watchful of her subtle expressions and gentle gestures. Her response time is relatively higher than that of an usual kid. I was mindful of her response. The results were priceless. When she realized that her expressions were understood, she communicated more and got closer to me. I use language and she expresses by distinct vocalization, or by expressions or merely by her hand or body. Our bond is apparent, noticeable to one and all. My growing sensitivity has been beneficial in several ways:

  • Her expressions provide clues to a seizure that is about to happen and sometimes I can mange to avoid it temporarily.
  • Understanding her response to a particular environment helps me to avoid situations that could trigger a seizure in her.
  • During an interaction with another child, I become Peu’s interpreter that results in a playful communication between two kids.
  • While interacting with others, I can step into their shoes effortlessly thus resulting in a fruitful communication always.

While exploring about the Anat Baniel Method, I read the book ‘ Kids Beyond Limits‘ by Anat Baniel that highlights the nine essentials. The essentials, slow, awareness, subtlety, and movement with attention has had an impact in my life . Besides applying these essential while I work  with Peu, I have internalized these into my daily living and have seen myself grow into a calmer and patient person. On applying the essential ‘slow’, each and every task is accomplished with a relatively better quality result.

As we moved out of anti epileptic medicines and started ketogenic diet to control Peu’s seizures, a new door opened for us . We got an opportunity of enrich ourselves with knowledge on a plethora of topics such as green health, diet, wellness, naturopathy,  brain plasticity, neuroscience and more. This knowledge has not only helped Peu but has given us immense confidence to lead a healthy and stress free life that will benefit Peu’s well being in the long run. Simultaneously we have also been able to influence our family and friends to adopt a healthier lifestyle. Our knowledge base continues to grow and personal experience strengthens each piece of our acquired knowledge.

There are specific groups and forums connecting parents who have a special needs child. A group of parents who are on the same boat is far more supportive and accessible than any doctor. Reaching out to parents for emotional support, sharing or seeking information/experiences has helped us form a new kind of bond worldwide.These groups are a virtual support system and a full time helpline for all special needs parents. One finds love and solace  while interacting with parents on all kind of topics we face on a daily basis. I have made good friends and such strong bonding was only possible because of Peu.

Dealing with life threatening issues on a daily basis for months and years together has made us into human beings built of steel. Imagining that we have reached the rock bottom and nothing can go worse beyond this has provided us an inner confidence to handle any situation with courage and indifference. Consequently we have transformed into down to earth, compassionate, honest, and humble human beings.

The title of my blog, ‘My daughter, my teacher’ finds some confirmation in this post. She continues to facilitate an awakening within me. I strive to cultivate simplicity in all aspects of my life.

We need your blessings and well wishes for our little Peu incessantly.

Your experiences and feedback are welcome.