Chloe’s therapist noticed it. Chloe’s Mimi noticed it. I noticed it. Chloe was not herself yesterday afternoon. All three of us knew something was up. Was she tired? Not feeling well? Just out of routine since this was the first time to therapy in a month?
We knew it was something. And we all gave her time, and we listened. We all comforted and validated. But we missed it.
Later that night I realized that it was her tummy. Her tummy wasn’t feeling right. She asked for food—and more food and more food—much like an infant with tummy trouble. You know: the baby’s tummy feels awful, and we assume it is because she is starving. Or at least we think more milk will help soothe her bellyache. Well, that’s what Chloe was doing, so I knew it was her belly.
I put her to bed so she could sleep it off. Then I got a text from her aide at school that she, the aide, was going to stay home the next day. She was sick with a nasty stomach virus. Her tummy was cramping, she felt miserable, and it hurt to move. Everything hurt.
I immediately knew that Chloe had the same virus. She didn’t have an attitude at therapy; it just hurt to move. She just wanted to keep her knees tucked up into her tummy where it felt a little more bearable. When she stopped in the middle of therapy and closed her eyes, it wasn't because she wanted to show she was in control, but because she was in so much pain it helped to be still for a moment. And she wasn’t forgetting which shoulder "hurt," they were both hurting.
She was hurting all over. Poor baby.
I was so happy that Chloe’s school aide was able to put words to how Chloe was feeling. The next morning when I texted the aide to find out how she was feeling—and probably how Chloe, too, was feeling—her answer was, “Like death.” Chloe had told me she felt yucky, but I didn’t realize she was feeling like death.
Life with a child who is mostly nonverbal is challenging. It’s guesswork. Even when I think I know her so well and know what she’s saying even before she “says” it, it is still guesswork at best.
I am a constant detective, looking for clues. And I think I’m a darn good detective on most days. But it’s still guesswork—putting clues together and trying to make them make sense.
Read additional articles on children who are nonverbal on this website for more information.
As parents, the work of assuring our child feels safe, secure, and valued at home, school, and in the community is challenging and full of risks. In Sandra Kaufmann’s book, she shares relatable ordeals and hard decisions their family had to make for their daughter with disabilities.
Categories: Family Support
I have learned that not everyone is capable of providing emotional support to parents of children with disabilities. There is limited help available with the day-to-day struggles associated with managing time, appointments, and responsibilities.
Categories: Family Support