All the kids are back in school. Lukasz returned to the Oklahoma School for the Deaf Edmond Regional Preschool at the University of Central Oklahoma in the mornings but now also attends the UCO Child Study Center typical preschool in the afternoons. He has thrived in both over the last few weeks. This is hopeful for the coming year when he is old enough for Kindergarten. The plan is that he attend a typical class in the same elementary school as his siblings.
The new preschool is an exploration of many things to come. His academic and social function, and the response of his peers to his appearance in a school setting. We have always been confident of Lukasz' intelligence and he has confirmed that over and over again. But he does have a problem recognizing (acknowledging) the social cues of children who do not want to play or be hugged. He tends to hug people whether they like it or not and the more they object the longer he holds on. I think he believes there must be a mistake; no one would reject his affection so if he holds on long enough they will come around. Thankfully, this too has been improving.
My biggest concern is and always has been that there
might be a child in his class that cannot get past his appearance and responds with fixation, fear and inconsolable crying or cruelty; all of which are
hurtful. And all of which we have experienced.
When Padraig was in
pre-k, Lukasz and I would drop him off and pick him up together. There were two boys in the neighboring
class that would react with hysterical crying and screaming everyday, until we
left the building. One would turn
and face the wall so he could not see Lukasz and scream until we were
gone. The other would run to his
mother crying and hiding his face.
This went on twice a day, everyday, through both semesters. I cannot express how hurt and angered I
was that their mothers did nothing to try to limit how long they were allowed
to respond this way. Luckily,
Lukasz was too young to be aware of their behavior.
This summer, at the pool we are members of, a little girl started coming to the pool who was absolutely terrified of Lukasz' face. The first day she came to the pool, she acted frightened but I thought it was the typical adjustment period. Lots of kids are afraid or wary of Lukasz for a few minutes but once they get a chance to look at his face for a few minutes behind their mom or dad they are fine. The next day she came, Lukasz was jumping off the diving board with his brothers at the "deep pool." I was watching Millie in the lap pool when I heard a familiar and stereotypical blood curdling scream. The scream of a child who is terrified of Lukasz. I know that scream. I have heard it countless times. But I thought, "Maybe it's not that, maybe someone is hurt," and ran to the pool.
Her father was in the pool with her and shielding her from Lukasz and I asked, "Is she ok? Did Lukasz do something?" He did not respond so I looked at the older gentleman who is always laying by the pool. He shook his head adamantly and said, "No, no, no" and gave me the "look". The "look" of equal parts, "that child is reacting unnecessarily to your son and I am so sorry that your son is going to have to deal with that at times for the rest of his life." The child continued to scream as long as Lukasz stood there and her father looked at me and said, "It must be because he pushed her when they were in the pool the other day."
Livid. Livid. Not that the little girl was scared and screaming. She was two or three years old; she could not control how she felt. It is our job as parents to teach our children how to control and understand what they feel. I was livid, and am now remembering, that he placed the blame for her reaction on Lukasz. Lukasz would never push anyone. I watch him constantly when little children are around him because I know they can be scared of him. And, her scream was not the scream of a child who was pushed days ago, it was the scream of a child who was seeing a monster. She screamed for the rest of the afternoon whenever she saw Lukasz. Her father did nothing to try to limit her or tell her that Lukasz was just a boy. Instead he told her that Lukasz would not push her again, which would not console a child who is screaming because she sees a monster.
I spent the rest of the afternoon making sure that Lukasz and I moved to the opposite of whatever pool the little girl decided to play in so that she would not look at him and scream. And seething inside.
Lukasz cannot help the way he looks or how people respond to him, but that father made it his fault that a little girl was terrified of him. She continued in her unfettered terror all summer and there was nothing we could do but avoid her or go home early. Which we did sometimes. I did my best to make sure Lukasz never realized that she was screaming because of they way he looks. But I can't do that at school.
It is ok to be shocked at seeing Lukasz for the first few times but it is unacceptable to treat him like a monster indefinitely. Even 4 year olds need to learn that. His looks are not his fault; he cannot control how he was born. Children can learn to get past or control their negative responses. Lukasz is old enough now to know that their tears are because of him.
Thankfully, Lukasz has only experienced the usually temporary wariness at his new school. He is now friends with everyone and any hurt feelings are caused by the typical toddler disagreements. I wrote a letter to the teachers about how to answer questions and what Lukasz' hemifacial microsoma involves but they didn't need it.
We have had other negative encounters this summer: the kids at the park decided to play tag and suggested Lukasz be "the monster"; a ten year old boy at the field where Iain and Learned were having soccer practice told Lukasz he was "creeping him out" and "freaky"; the brother of a child at OSD told Lukasz he was creepy.
These experiences have become increasingly more common. As I told the craniofacial team last week, it is like watching the tide come in. I know that as he ages, becomes more social and noticed by more people, he will see more people pulling away from him; more eyes avoiding his face. He is old enough to notice because he is old enough to ask why he only has one eye and one ear. So far, I think his "self appreciation" vastly surpasses his ability to accept that anyone could possibly not adore him. But as that tide comes in, as the waves grow and strengthen, there will be times his feet are knocked out from under him and I hope I am there to help him up until he is strong enough to stand firmly and confidently on his own.
This summer, at the pool we are members of, a little girl started coming to the pool who was absolutely terrified of Lukasz' face. The first day she came to the pool, she acted frightened but I thought it was the typical adjustment period. Lots of kids are afraid or wary of Lukasz for a few minutes but once they get a chance to look at his face for a few minutes behind their mom or dad they are fine. The next day she came, Lukasz was jumping off the diving board with his brothers at the "deep pool." I was watching Millie in the lap pool when I heard a familiar and stereotypical blood curdling scream. The scream of a child who is terrified of Lukasz. I know that scream. I have heard it countless times. But I thought, "Maybe it's not that, maybe someone is hurt," and ran to the pool.
Her father was in the pool with her and shielding her from Lukasz and I asked, "Is she ok? Did Lukasz do something?" He did not respond so I looked at the older gentleman who is always laying by the pool. He shook his head adamantly and said, "No, no, no" and gave me the "look". The "look" of equal parts, "that child is reacting unnecessarily to your son and I am so sorry that your son is going to have to deal with that at times for the rest of his life." The child continued to scream as long as Lukasz stood there and her father looked at me and said, "It must be because he pushed her when they were in the pool the other day."
Livid. Livid. Not that the little girl was scared and screaming. She was two or three years old; she could not control how she felt. It is our job as parents to teach our children how to control and understand what they feel. I was livid, and am now remembering, that he placed the blame for her reaction on Lukasz. Lukasz would never push anyone. I watch him constantly when little children are around him because I know they can be scared of him. And, her scream was not the scream of a child who was pushed days ago, it was the scream of a child who was seeing a monster. She screamed for the rest of the afternoon whenever she saw Lukasz. Her father did nothing to try to limit her or tell her that Lukasz was just a boy. Instead he told her that Lukasz would not push her again, which would not console a child who is screaming because she sees a monster.
I spent the rest of the afternoon making sure that Lukasz and I moved to the opposite of whatever pool the little girl decided to play in so that she would not look at him and scream. And seething inside.
Lukasz cannot help the way he looks or how people respond to him, but that father made it his fault that a little girl was terrified of him. She continued in her unfettered terror all summer and there was nothing we could do but avoid her or go home early. Which we did sometimes. I did my best to make sure Lukasz never realized that she was screaming because of they way he looks. But I can't do that at school.
It is ok to be shocked at seeing Lukasz for the first few times but it is unacceptable to treat him like a monster indefinitely. Even 4 year olds need to learn that. His looks are not his fault; he cannot control how he was born. Children can learn to get past or control their negative responses. Lukasz is old enough now to know that their tears are because of him.
Thankfully, Lukasz has only experienced the usually temporary wariness at his new school. He is now friends with everyone and any hurt feelings are caused by the typical toddler disagreements. I wrote a letter to the teachers about how to answer questions and what Lukasz' hemifacial microsoma involves but they didn't need it.
We have had other negative encounters this summer: the kids at the park decided to play tag and suggested Lukasz be "the monster"; a ten year old boy at the field where Iain and Learned were having soccer practice told Lukasz he was "creeping him out" and "freaky"; the brother of a child at OSD told Lukasz he was creepy.
These experiences have become increasingly more common. As I told the craniofacial team last week, it is like watching the tide come in. I know that as he ages, becomes more social and noticed by more people, he will see more people pulling away from him; more eyes avoiding his face. He is old enough to notice because he is old enough to ask why he only has one eye and one ear. So far, I think his "self appreciation" vastly surpasses his ability to accept that anyone could possibly not adore him. But as that tide comes in, as the waves grow and strengthen, there will be times his feet are knocked out from under him and I hope I am there to help him up until he is strong enough to stand firmly and confidently on his own.
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