Sophie finally returned from her extended stay in the NICU (neonatal intensive care unit). Carly tried to sleep in the same room that first night but every noise got her up to check on Sophie. Carly eventually brought Sophie to her room and enjoyed snuggling and hearing her tiny breaths and noises. Sophie was so small, so frail in appearance. Carly had to awaken her with a wet washcloth to feed her. It did not seem right to awaken a sleeping baby in the middle of the night, but she had to eat and ate she did. Sophie was not pleased to be aroused, but she slept well after feeding. Carly, however, was a walking zombie by morning.
Sophie gained weight and was able to eat baby food. The doctors tested Sophie often to ensure she was beginning to thrive without the special equipment she had brought home with her. Sophie started a new journey with different medical specialists who compared her physical progress with kids of the same age without disabilities. This approach would begin years of genuine help and occasional negativity. Later these assessments also looked at her mental progress.
Sophie had visibly impaired hands and feet. She could not speak, making early assessments difficult without any active participation. Her grandfather would sit with her in the evening before bedtime and always read the same story and her favorite picture book. She loved this familiar routine and had an incredible range of facial expressions. Her smiles were like the sun coming out. She could not speak, but she communicated with a wide range of facial expressions.
Much later, at age 3, an Early Childhood Interventional professional put her through some initial mental assessments, one of which was knowing her colors. "She'll probably fail this since she can't speak." Her grandmother said, "just ask her the questions." The test involved objects of different colors on a page. "Which one is blue," etc. Sophie slowly moved her hand and a finger to point accurately to each object. It took time, and the woman said, "Oh my goodness, she does know!" Sophie just grinned.
One day, grandfather read to Sophie, as he did every day. She was seven years old. She looked up at him and said the word, "apple." It was one of the pictures in her book. The family was ecstatic. Her first word was an enormous event, but it ended as quickly as it began. Somehow all the synapses in her brain aligned briefly to use her voice to say that one word once and no more.
It was interesting to see how people reacted to Sophie. Some people would talk about her as if she wasn't in the room sitting in a wheelchair. "What's wrong with her?" was a frequent question, and we said, "Nothing, she's a wonderful child." They talked about her, not to her. Her family and other people took the opposite approach, seeing and speaking to her and receiving no words but big smiles in return. We always answered inquisitive children who asked the same questions without being judgmental. "She's just like you and is not able to move her muscles as you can." "Okay," they would answer, satisfied.
Sadly, Sophie would also encounter pessimistic reactions from early childhood advisors. On one visit for a physical examination, Sophie was lying naked on an examination table. She was 18 months old. The physical therapist saw her for the first time. She set her up and let go to see if she could support herself. That was a perfectly valid test, and Sophie fell over. She repeated it and then told Sophie, "You're such a lump." That was the last visit with that physical therapist!
*Please note that the names in this story were changed to protect the author's privacy and family.
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