From Despair to Hope: A Parent’s Journey - Part 1
Some of you may have heard that part of the reason why I do what I do at Neural Connections is because of my eldest daughter’s needs. I’ve shared bits of my journey here and there. Now, I’m sharing the whole journey with you because I strongly hope that this will help other parents on a similar journey. I hope this resonates with you. Here is Part 1. Do look out for future parts in upcoming blogs. - Hsiao
Like many new parents-to-be, we were full of wonder about how our first-born daughter would develop in the days, months and years ahead: “Would she be healthy? Who would she take after, Mom or Dad? What activities and hobbies would she enjoy?” As I reflect back to that time and our journey of our daughter’s development together as a family, I am truly thankful that it has not only led us to MNRI but it has also provided an eye-opening education into the marvels of human development.
Even as new inexperienced parents, our gut instincts informed us right from the outset of K’s birth that our path was destined to be different from a “normal” developmental trajectory. However, how different was something that we were yet to discover. After a long and traumatic birth, K was delivered naturally with some help and taken directly to the neonatal ICU. In hindsight, there were plenty of signs that K would struggle with achieving developmental milestones that are the norm for most babies.
From the moment she was born, K was plagued with many difficulties. Nursing, sleeping, jaundice, low birth weight, lethargy, kidney hydronephrosis, and umbilical hernia were some of the concerns. We tried double diapering to help her hip sockets but later on she was put into a spica cast due to her hip dysplasia. After several months of wearing the cast 20 hours a day leaving her in a fixed "sitting" position unable to move her lower body we expected that K would be off crawling around the house with her new found freedom. This didn’t happen. During a follow up with the paediatric orthopaedic specialist, we shared our concerns. That was the first time that we heard the term “floppy” baby and low muscle tone. It was the beginning of our realisation that there were issues attributed to developmental delay.
K didn’t really display an interest in trying to explore and connect with her environment like we expected. In fact, she was more than content to remain swaddled in her crib or propped up with cushions on the couch. She was an "easy" baby and didn't fuss when she was awake. Of course, it is clear now that her dislike of tummy time, her lack of smiles and lack of movement were signs of hypotonia. Finally, after MRIs and many medical evaluations, doctors settled on the overarching classification of Global Developmental Delay (GDD).
As parents, we did not really understand then what this actually meant. Everytime we met with developmental specialists, we bombarded them with questions in an effort to comprehend the situation: “Will she ever walk? Will she be able to talk? How will she go in school? Will she be able to go to school?” At this point in our journey we had far more questions than answers. This would be the trend over the next few years as K’s development continued on its own unique trajectory.
The consistent factor was that she was achieving developmental milestones up to a certain level but at her own pace. Through her toddler years, she was slow to walk after never really crawling much. She talked late and was unable to communicate clearly or comprehend certain concepts. At five years old, she spoke two to three word sentences and preferred to make sounds to communicate. She didn't point and initiate conversations. K was plagued by multiple ENT infections and respiratory illnesses constantly. She also had strabismus and required eye patching. This ultimately led to strabismus surgery. Pre-school was difficult.
We were faced with the realisation that she was struggling to keep up with her peers. She was also cognitively delayed. This was supported by academic, cognitive and intelligence assessments. Finally we began to understand that the mainstream school system might not be a feasible option for K in the future.
[To be continued…]
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