Today I had the “big meeting” on deciding what, if any services my son would be able to receive through CPSE (Committee of Preschool Special Education).
I went in with a mindset that I would have to fight tooth and nail to make sure that he receives the proper services. I prepared myself to speak from a variety of roles; the parent, the advocate and the child life specialist. I was pleasantly surprised that it went incredibly smoothly and they determined that he would receive what was recommended.
The only thing that I had a difficult time with, was hearing the word, disability. The chairperson said a few times in an appropriate contexts but it rang in my head each time. For a split second that is all I could focus on and then I would tell myself that it is just a word that they use to describe children who receive services from CPSE. That is all. I know my son is fine, I feel strongly that he will thrive in therapy and continue on with his happy life. But I also felt what every other parent or caregiver felt when they heard that word or another label or diagnosis.
Being in the child life field, you are trained to help provide support to parents and caregivers in similar situations, but they are usually much more intense. You are empathetic, a good listener and resource to gather information and help translate it. I would never tell a parent, “I know how you feel” because I didn’t. I would tell them “I can understand how you could have those feelings….”
Today, I can honestly say that I connected on a deeper level of understanding of what it feels like to hear that your child isn’t perfect. I mean in the sense that you never want to hear that there might be something wrong with your kid. Whether it is tiny or life changing, it is still difficult to hear.
I hope that fellow child life specialists, teachers and medical team members will continue to listen, provide support and be conscious of the way they talk about a child.