Ciao, Papà!
"Yes, she is still alive," my brother says with a sigh.
He is speaking of the daughter of one of his best friends. She is now in her 20s.
This young woman seemed healthy and normal like any other baby until she was about 10 months old. My brother, who is a doctor, was the first one to notice it. At a party, he asked to hold and play with the baby, but the baby was not as responsive as he expected. "How come she is not sitting up by herself?" She could not follow sounds with her eyes, and she did not hold on to things inserted into her little hands. These are basic benchmarks for babies her age and younger. My brother sensed right away that something was wrong
It took him a long time to convince his friends to take their child for assessment. Like most people, the young parents reacted with denial. "She is fine. She is just slow. She will catch up eventually. We just need to be patient." They eventually gave in. Doctors performed all sorts of tests, but could not identify the reason for the baby's arrested development.
"Most children with such condition die before the age of 10 because of complications from pneumonia. They take such miraculously good care of their daughter that she continues to be in very good health. It only prolongs the suffering of all parties concerned," my brother says in a slightly choked up voice.
Weeks become months, months become years. Despite her lack of growth in mental and physical abilities, the child continues to grow in size. In order to take care of this oversized baby, Mommy quit her job. She spends her day giving her child all sorts of physical and mental stimulations. She turns her daughter regularly to prevent bed sores, and exercises her body to make sure she maintains some muscle mass so that "whenever she is ready to sit up and take a step, they are there for her to use."
Having had one child in this condition, the couple was faced with the harsh decision of whether they should try to have another child or not. He came from a large family. His dream was to have one of his own, with many kids running around him. But what if they have another child like that? At the end, they decided to focus all their resources in taking care of their only child.
Even though she is supposed to have limited mental activities and physical abilities, according to her mother, the daughter has her preferences and displays moods. She often looks like she is in some deep thoughts. And then she may look confused and lost. But then a smile would suddenly flash across her face and vanish in no time. You never know what exactly she is looking at, and if at all. It makes you wonder if these virtual emotions are actually there . . .
"If she does not like something, she demonstrates her disapproval by throwing tantrum like a little kid." Mommy told me. I was skeptical. Very promptly, her daughter started making grumpy noises. "We might need to change her diaper. She is very fussy about it." I was recruited to help hold the kid up while Mommy changed her diaper. Oh, was she heavy! Trying to hold up her super relaxed body felt like wrestling a serpent. There is no grip and no leverage anywhere. I was sweating bullets. How does her petite mommy do that for so many years?
As Mommy suspected, a damp diaper was the culprit. Once changed, she makes no more grumpy noises. "Seems like she likes you. Normally, she fights it when strangers touch her," Mommy smiled. Should I thank her for not having told me ahead of time? I was not sure what to say in response.
Daddy announced that the family was going for vacation on the beach. "Our daughter likes water. She is always happy taking a bath. So, we are taking her to the ocean for a very big bath. I think she will like it." Daddy never gives up hope.
Over coffee, one time, Daddy muttered while slowly stirring the pitch black liquid in his cup, "You know, people wish their kids will become doctors, bankers and lawyers. My wish is much simpler: I just wish one day my daughter would open her mouth to say 'Daddy!' to me. That's all I want, 'Daddy!" I will be so happy to hear that from her . . . "
I talked to a friend who has an autistic son about the family. She sent me the well-known [Welcome to Holland] essay, which I forwarded to the father.
Daddy emailed back: "That's an interesting perspective. Please thank your friend for all her good intentions. But you know what? I love Italy. Italy is really a very nice place."
He is speaking of the daughter of one of his best friends. She is now in her 20s.
This young woman seemed healthy and normal like any other baby until she was about 10 months old. My brother, who is a doctor, was the first one to notice it. At a party, he asked to hold and play with the baby, but the baby was not as responsive as he expected. "How come she is not sitting up by herself?" She could not follow sounds with her eyes, and she did not hold on to things inserted into her little hands. These are basic benchmarks for babies her age and younger. My brother sensed right away that something was wrong
It took him a long time to convince his friends to take their child for assessment. Like most people, the young parents reacted with denial. "She is fine. She is just slow. She will catch up eventually. We just need to be patient." They eventually gave in. Doctors performed all sorts of tests, but could not identify the reason for the baby's arrested development.
"Most children with such condition die before the age of 10 because of complications from pneumonia. They take such miraculously good care of their daughter that she continues to be in very good health. It only prolongs the suffering of all parties concerned," my brother says in a slightly choked up voice.
Weeks become months, months become years. Despite her lack of growth in mental and physical abilities, the child continues to grow in size. In order to take care of this oversized baby, Mommy quit her job. She spends her day giving her child all sorts of physical and mental stimulations. She turns her daughter regularly to prevent bed sores, and exercises her body to make sure she maintains some muscle mass so that "whenever she is ready to sit up and take a step, they are there for her to use."
Having had one child in this condition, the couple was faced with the harsh decision of whether they should try to have another child or not. He came from a large family. His dream was to have one of his own, with many kids running around him. But what if they have another child like that? At the end, they decided to focus all their resources in taking care of their only child.
Even though she is supposed to have limited mental activities and physical abilities, according to her mother, the daughter has her preferences and displays moods. She often looks like she is in some deep thoughts. And then she may look confused and lost. But then a smile would suddenly flash across her face and vanish in no time. You never know what exactly she is looking at, and if at all. It makes you wonder if these virtual emotions are actually there . . .
"If she does not like something, she demonstrates her disapproval by throwing tantrum like a little kid." Mommy told me. I was skeptical. Very promptly, her daughter started making grumpy noises. "We might need to change her diaper. She is very fussy about it." I was recruited to help hold the kid up while Mommy changed her diaper. Oh, was she heavy! Trying to hold up her super relaxed body felt like wrestling a serpent. There is no grip and no leverage anywhere. I was sweating bullets. How does her petite mommy do that for so many years?
As Mommy suspected, a damp diaper was the culprit. Once changed, she makes no more grumpy noises. "Seems like she likes you. Normally, she fights it when strangers touch her," Mommy smiled. Should I thank her for not having told me ahead of time? I was not sure what to say in response.
Daddy announced that the family was going for vacation on the beach. "Our daughter likes water. She is always happy taking a bath. So, we are taking her to the ocean for a very big bath. I think she will like it." Daddy never gives up hope.
Over coffee, one time, Daddy muttered while slowly stirring the pitch black liquid in his cup, "You know, people wish their kids will become doctors, bankers and lawyers. My wish is much simpler: I just wish one day my daughter would open her mouth to say 'Daddy!' to me. That's all I want, 'Daddy!" I will be so happy to hear that from her . . . "
I talked to a friend who has an autistic son about the family. She sent me the well-known [Welcome to Holland] essay, which I forwarded to the father.
Daddy emailed back: "That's an interesting perspective. Please thank your friend for all her good intentions. But you know what? I love Italy. Italy is really a very nice place."
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