Cerebral Palsy by Veronica Kirigo
Before getting my university degree, I had never heard of Cerebral Palsy(CP) before. I did not know about it, and so the language to talk about it was not part of me. I am sure my sentiments are in line with many of us. But there is those of us who know this term oh too well. Knowing about it, what it means and what it stands for, was a defining moment for them, a life changing moment.
I think it’s funny how we interact with situations and not have language for them. I can bet you, you, have interacted with Cerebral Palsy before. We have all seen the “disabled” children who have no visible broken bone but they cannot walk, they drool on themselves, and can’t even sit by themselves. The history is usually vague. The parents will tell you that the child did not sit, did not crawl, did not stand and now can’t walk. They will tell you that their child was late, and they just never caught up.
Cerebral palsy(CP) is a childhood motor disorder that occurs as a result of injury to the developing brain before, during or after birth. That means that the child has problems projecting, planning and executing movement, maintaining posture and getting in and out of certain positions. For example; I want to get to that toy but my body does not allow me to pick it up.
The news about a child having CP is received in a myriad of ways. As is with everything new, majority are those who struggle to accept the news. Not only is the information disheartening in itself, but sometimes the delivery is also an issue. We tend to use disabling language and not take time to clearly communicate to the parents as clinicians. And therefore, the key partners in care are already disempowered before the whistle is blown.
There are also many barriers to care for children with CP. These include minimal access to quality care, inadequate information on where to get the care, inability to sustain care in terms of fees and time and as well lack of well-equipped facilities to facilitate the required care. More often than not, we see/hear parents blame themselves; thinking that maybe they did something wrong. We also see delay in the diagnosis whereby the developmental delay is caught way late into development. This leads to even harder conversations as the blame shifts back and forth.
However, despite the many barriers and hinderances, it is time we listened a bit more and talked about it some more. It is time we engineered our own language to bring about compassion toward these children and their caregivers. It is time we started to not be afraid to ask the questions, to reach out and touch the child, it is time we viewed them as integral members of our society and helped them lead meaningful lives.
I am now a clinician. I am learning and I am educating. I am engaging. I work with other clinicians too who are out there in massive ways doing their best to change the narrative. There is help, there is more information than before. There are more strides being made in this sector than before. I guess what I am essentially saying is that there is HOPE. And is it not all we need to forge forward?
I then plead with you who doesn’t know how to engage to reach out and start the journey. For you who is already dealing with this, to feel encouraged to get the right help. To accept that we are all learning, we are all trying. To have a little more re-assurance in the human spirit to shine through with kindness and compassion. Let’s love all our children and let them be just that, children.