January 20

Explaining Disability to my Child…

I used to worry how I will explain to EA the condition of his brother. I often wondered how I will explain to him cerebral palsy in such a way that his young mind will understand. I have all these worries for so long and I even researched topics about it. But later, I realized that just like anything, that moment of “the talk” will happen when my child is ready, and that he will come to me when he is.

It is when he was 7 and Little H was 3 when EA started asking questions. He begun his curiosity by comparing Little H with their cousins who are of the same age as his little brother. He asked why their cousins are walking and Little H is not; why their cousins are talking and why Little H is not. He asked the questions with so much innocence. I can see that he was trying to reconcile and make sense of everything. At that point, i knew, EA is ready.
As I was answering his questions one by one, I did not go through the details of his brother’s condition yet. I felt that it was too early for that. I begun by explaining to him that his brother is not the same as him or their cousins in some aspects because he did not stay in my tummy for 9 months just like he did. I reminded him too that at some point, his brother got really sick  and that sickness resulted to him having more challenges in walking and learning. I did not use technical or medical terms such as prematurity, seizure, etc.. I had to use words that he is familiar with, those that we use in regular conversations. Once I answer his questions, I gave him time to absorb everything. I did not push further or try to explain it all in one sitting. My goal then, aside from answering his questions, is to let him feel that he can ask me anything and that he will not be judged or ridiculed, no matter what it is. I want him to feel that he can always turn to his family in times of confusion.

One thing that I noticed in EA was that, after I answered his questions, he just kept on repeating  it to himself, at times even asking me if he heard me right. I guess he was validating if he understood me correctly. Then a few days after he would ask follow up questions;  whether he will be able to play basketball with his little brother, or if they will get a chance to go to school together. Everyday he has a question and I answer all of them honestly and patiently.

EA is already 8 years old, and as he is a year older since he started asking, his questions are up a notch too. On our way to his basketball practice last Saturday, we got to talk about his brother’s condition in a more technical way. He started by asking if his brother is still sick. I told him that Little H is no longer sick and that he is in a very good condition now, health-wise. I told him that it is the reason why we were able to take Little H with us when we travel. Then later he asked me what to call his brother’s condition if he is not sick, it is then that i told him that it is cerebral palsy. As he got more curious, the discussion led us to lessons on science, about the parts of the brain and how it is connected to our different parts of the body. He found it so cool that he is able to understand more of Little H’s condition because he can connect it to the lessons that they learn in school.

I know that in his own way, EA already understands Little H’s situation. Cerebral palsy and the things that go with it is probably something that a kid will not understand at first. But as I have seen with EA through the years, he has shown unconditional love towards Little H. He knows that our situation is different compared to most of his classmates or friends, and yet he has never said anything that will make it seem like he is missing out on anything. Being involved with taking care of his brother helped a lot.

If your family is going through a situation, whether a disability, sickness, death, separation, or anything that you think might be confusing to a child, please let them feel that it is okay to talk about it. Encourage openness but never push for it. Home should be the place where anything can be talked about. It is best that all forms of explanations or clarifications must come from us first, the parents. Somethings might be too complicated for children to comprehend. But you know what, one thing I realized with children is this, their young minds may not fully understand some situations, but their hearts definitely will. Just trust in the power of love. It always, always shows the way.

 

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Posted January 20, 2017 by kat in category Family Matters, My Preemie's Journey

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