When our son, Eshaan was 5, he came home during the first week of kindergarten and was really upset because he felt alone and not included in play. He was slower and smaller than the other kids and couldn't bend or keep up with them as they ran or played. He had already had the first of his 17 surgeries that attached a metal plate to his spine to keep it straight, so he couldn’t bend or even sit on the floor at circle time. He was the only one on a chair. He said he felt separate.
We were at a loss on how to help him, so we shared the situation with his kindergarten teacher, hoping that she may have a suggestion. She heard us out and seemed as concerned as we were. Her suggestion surprised us. She suggested that we talk to Eshaan’s classmates and ask them how to address the situation. She was right when she pointed out to us that the students had as little experience as he did at age 5, and probably didn’t have a clue about how he was feeling or why he was slower than they were, or anything going on with his health.
The next morning at circle time, the teacher asked Eshaan to tell his peers whatever he was comfortable sharing about how his body was different, and how he felt when he couldn’t do the same things their bodies enabled them to. Eshaan told the story of his surgery and how it impacted his ability to move or bend. “My back has many screws to help me stand,” he said, pointing to his Xray. “It’s really hard to run and I can bend only a little bit”. All the children were quiet. Then one hand went up. “Yes, Sia.” “So, when we were playing ball, was it hard for you to throw?” “No, throwing was not hard. Catching is hard because I can’t run fast enough and I can’t bend to catch.” She thought for a minute and then excitedly suggested, “So we can be a catching and throwing team. I catch and you throw! We can name it team-catch.” A new game was born. Eshaan beamed!
Finally, a game he could play with his friends!
This was a life changer! It demystified Eshaan’s situation, and provided his peers and teachers the tools to include him. We had this discussion with his peers every year after that, and always with the same impact. Once his classmates understood what he was dealing with, they were able to include him. It also taught Eshaan how to advocate for himself.
I know that the impact of every disability is different, and that every family has their own comfort level with what they’d like to share. Our son is an extreme extrovert. Ensuring he had friends in his life was an important goal for us. We found that the process of our son’s IEPs and any other discussions we had in school were limited to the child study team. The discussion focused on intellectual and physical support only. There was no discussion of social needs. His peers, their parents and the teachers he worked with (his core community) were unaware of his needs and abilities, and therefore unable to engage him. This one discussion a year, opened that door for our son. I hope that someday social inclusion will be another primary goal of all IEPs.
ABOUT THE AUTHOR:
Aparna Vasisht is a resident of Montclair, NJ, where her son had this experience. She lives there with her husband, two boys and two cats. She works in the financial services industry. She wants to share this story in the hope that it will help another family. Aparna has been an active member of SEPAC and has run many discussion groups to share this story.
Read the article here.