A few thoughts regarding one of my clients.. He’s been the most challenging to treat but also the one who I have seen so much growth in over the few weeks I’ve been here. A is a 6 year old boy with a multitude of diagnoses; epilepsy, mental retardation (a whole other blog post to come on terminology/power of language), cerebral palsy, sensory processing issues and possible hearing loss. He lives with his family (parents and 3 brothers) in a very small village; they do not own furniture and sleep in a single room. Additionally, he lives in the village where the young man died of suicide in January. Heavy.
When I look back on meeting A., the first feeling that hits me is how quickly my stomach seemed to drop within my body, taking in the reality of this child and his family. As a human, my heart broke for the little boy laying on the floor, his mother with tired, sunken eyes and his timid and fine boned brothers. As a future clinician, my brain started taking inventory of how the child behaved and responded to what must have felt like an onslaught of people. Emotion and pragmatics battle within me minute to minute, but this felt like a full on war from each side.
It was clear walking into this family’s home, that they were doing the best they could under the difficult circumstances they had. The house was small, perhaps the size of a large garden shed, with cement floors and walls; a single bulb struggled to illuminate the main room. A small kitchen, the size of a closet, was located off to the main room. The single window was small, and sunlight struggled to get into the home. The mother shared that the family slept, ate and lived in this room; their whole lives fit into this 12 x 12 space. The walls, the floor all the same dark unpainted cement colour. A. spent his entire day laying on a thin woven mat on the cement floor, his skull had flattened in response. How many hours must he have spent kicking against the dreary coloured cement, trying to move around and explore his little world, that his hair had rubbed off and his scalp roughened in response. I had read about babies in the Ukraine with flattened skulls, laid in their cribs for hours on end with no human contact. I didn’t expect to see a child in this day and age, who reminded me so much of those children. But then again, I don’t know what I expected to see in a rural village… I knew it would be hard. But preparing for challenges is difficult when you don’t realize what “hard” means in the context.
My mind raged at how unfair this seemed. Unfair that A’s parents might have had to choose between feeding their family, and A’s epilepsy medication. That the medication couldn’t be properly monitored, and his seizures seemed to be happening at an alarming rate. Unfair that this family had to huddle together on a cement floor every night as sleep pulled their eyes closed. Unfair that the education provided to families and individuals with special needs/disabilities was so lacking. Unfair that because those with disabilities are ostracized in many instances, so the education may seem unnecessary. Unfair that society made this mother afraid to take her child past the threshold of their door, into the sunlight, for fear of judgement. My heart broke at each realization, and I could not help but feel so let down on behalf of the family, by the health care system, by societal expectations, by the government, by people.
Unfair or not, I swallowed the rage and knew that I had to do the best I could with my own circumstances and knowledge. Anything else would only be a disservice to A and his family. Seeing that little boy seemingly perk up when he was held, and tried his best to interact with the world lifted my spirits. Every interaction with him, he seemingly becomes more engaged with those around him, and it makes me so genuinely happy for him that his family is taking some of the recommendations we’ve given and turned them into action. The small things, whether its hugs or speaking to him, or holding him in the sunshine, make such a difference, when he has lived in relative darkness for his entire life.
In the few times we visited, his older brother (who was 13 and looked 8) was in charge of caring for A… a lot of responsibility to put on his small shoulders. While this would not be acceptable in North America, it was the reality that this family lived in, and continues to live in. Accepting that, while at the same time wishing that both of these boys, and their other two brothers, got to enjoy their childhood, were two opposing truths that I had to learn to balance in my own views of the world. I struggle sometimes with holding two opposing truths, but these experiences have reminded me that neither is less valid than the other, and that you can’t see light without the dark.
I struggled leaving that little boy on the floor every time we left. Knowing that it was where he spent the entirety of his day, with the exception of meals or therapy… And again reminding myself that this was the family’s reality. That despite my wishes for things to be different, that there would be other consequences to those wishes that I may not recognize. That I had to trust that the family believed and understood the importance of therapy for their son. And I have been trusting, every week it gets easier to trust when I see A make gains, even if they are seemingly tiny.
As I left A on the floor for the last time, my heart screamed. I couldnt really fathom it being the last time I walked out of that family’s home. The session we had that morning was amazing; A pushed himself up off the floor a few inches, he rolled by himself, the seating system (essentially a bean bag chair) supported him. The seating system meant he would be able to sit up for the first time in his life, without someone having to hold him, and that he could participate in his world. It truly had the potential to be life changing. The CRW (community resource workers) asked if I would take him with me back to Canada, because they thought I would make him better there. It was a beautiful compliment, and soul crushing all at once. They said the way I interacted with him was lovely, and wanted to see him do well. And all I could muster, through teary eyes and a heavy heart, was that he was getting better, he was getting stronger every day and that taking him from his family wouldn’t help him. That he had a great support system where he was and that I thought he was doing great. How do you even respond to that? I’ve run those words through my mind over and over and over. I am amazed at the circumstances that brought me to this area of India, at this time, to this family, to this child. That despite the deprivation he has gone through for the first six years of his life, this may be a turning point for a brighter future. Maybe his life will be extended because he will no longer be fed on his back, with a high risk of choking. Maybe he will be able to hold his own bottle. Maybe he will learn to say a few simple words.
Whatever the possibilities, I realize I am a small chapter in this family’s life and can only wish strength, hope and wellness for them. It’s all we can really wish for each other.