In India, it is considered a taboo, specifically among special needs parents to openly discuss about their child’s latest progress lest it regresses. We too were scared to utter about her seizures stopping during the honeymoon periods. I look back now and realize the reason. It is because parents have an intense fear of losing whatever progress has been achieved. They are in a state of confusion about the cause or reason behind the progress.
Currently, we are no longer in that bandwagon anymore. I firmly confirm that our findings hold good till date. Applying our discoveries are working for our daughter Peu who is diagnosed with CDKL5, a rare genetic disorder. We continue to see progress in her. I wrote my findings in my previous post. Nailing down our discoveries was a time consuming process and can be termed as a memorable journey of discovery. The journey still continues.
How I wish I could dedicate this post to make tall claims about Peu’s progress. I do aspire that one day I will write how Peu learns to crawl, sit, stand, walk, and talk. In this post, I just wish to mention that we continue see subtle cognitive progress in Peu. It is touching to see her give responsive smiles to specific toys, vocalize in different tones at different situations, share smiling glances with dolls of her choice and engage in a playful conversation in her own way with her stuffed toys. Each morning, her wake up time is no more marred by a seizure episode.
Through this post I wish to convey a message to parents: arise and awake!! Take charge of the situation, gear up your sensitivity, and trust your instincts.You and only you have the power to identify and troubleshoot issues that your child faces. Each child is different and it is not wise to apply the same methodology for all. Your child’s body is constantly giving cues and signals of what is not working well. Though a human body has immense power to repair on its own, we can support that immaculate engineering. Instead we give medicines for each symptom, be it seizures, acid reflux, breathing issues, digestive problems, sleep issues, bone issues, the list is endless. These issues are mere signals and we are capping them off, inviting more pain and suffering. Finally we land up in emergency situations.
Ask yourself, “Have any (or which) of the numerous medicines that you give your child several times a day helped to eliminate the issues altogether?”. If yes then you should have been able to stop the medicines after some time. Instead you seem to increase the dose over a period of time and then add another because the earlier one lost its efficacy or did not work altogether. The consequence is that the body gradually looses its ability to heal itself due to this external interference with haphazard chemical overload. Then you fall into a loop of aiding the body and brain with external devices and instruments. And all along your child suffers and only suffers silently. You blame the underlying disease for all the pain and suffering. It is us, our ignorance, our fears and our lack of faith in our parental instinct. I gently repeat , arise and awake!!
I conclude this post with a humble request to try initiating a different approach in your mind and that approach should solely be based on your child’s reaction, response and body signals because you being a parent is empowered to sense those. Let us work with our children not in a standardized way but in an exclusively customized maybe non-standardized way. Ultimately it is a win win situation for your child and you.
Feedback, questions, and thoughts are always welcome.