identifying traits and are vaguely elfin in appearance. The cardiologist called them âpixie peopleâ because of their diminutive size and telltale facial characteristics. Newborns are often colicky, perhaps due to their hyperacusis (sensitive hearing). Feeding problems, low birth weight, and slow weight gain plague them from birth.
As Dueene asked more questions, she began to see how Ashleyâs medical history lined up with the diagnosis; though it scared her, it also gave her hope. It wasnât all bad news. Williams syndrome kids have special needs, but they also have an intriguing set of personality traits. They are highly social with remarkable verbal abilities and often have an affinity for music.
The doctor spent two hours talking to Dueene. For the first time, Dueene understood her daughter. Armed with a diagnosis, Dueene was able to more knowledgeably navigate the medical system and choose appropriate therapies for Ashley. Within weeks, Ashley stopped crying.
It had only taken four years.
Over the years, Dueene watched her daughter become more independent and discover her own interests. Ashley was crazy about monster trucks and wedding cakes; she often obsessed about them. Dueene couldnât allow Ashley to go to the fairgrounds to watch the monster trucks perform because it irritated her asthma, but she helped her daughter get a ride in one driven by a friend. It was the best day of Ashleyâs life. After watching shows on TV aboutdecorative wedding cakes, Ashley decided that instead of a bride and groom on the top of her cake, she wanted his-and-her monster trucks. Her eyes lit up, her speech got faster, and she bounced in her seat as she talked about her passions.
Friendly and social, Ashley had so much about her to love, but by her teens a dark side showed up. Every morning started with a mother-daughter struggle. Ashley would get up wanting to fight. Dueene would try to get her to eat breakfast, and Ashley would respond, âI donât want to eat that. I donât like that.â Further coaxing only resulted in Ashley screaming, âYou canât make me!â
Ashley then refused to take her medications. After much fighting and tears on both sides, Dueene would have to physically make her.
While Ashley was in school, Dueene found a few hours of peace working at the restaurant. Then Dueene would pick her up and the fighting would start all over again. Dueene hated it. It wasnât at all what she wanted, but she also knew that sometimes Ashley couldnât control herself.
The screaming and arguing went on for years. Doctors prescribed mood stabilizers and antidepressants. They didnât seem to help. Dueene knew Ashley was having headaches and those alone made her irritable, but the irritability grew into rage.
As things worsened, Ashley began hitting Dueene, and then Dueeneâs boyfriend, Jeff, the only male role model in her life. The physical violence got so out of control that there were days Dueene had to physically restrain Ashley. At times, she even thought about calling the police for her own safety.
Though her crying as an infant had been frustrating and exhausting, as a teen Ashleyâs anger was turning into something more dangerous. Dueene wasnât sure how it would end.
On a weekday in December, Dueene took eighteen-year-old Ashley to the eye doctor for a routine visit. âHave you been having headaches?â he asked.
Dueene listened as Ashley told him about the intense headaches she was experiencing almost constantly. Dueene was surprised. Though Ashley had mentioned the headaches, she hadnât complained. By this time Dueene was so used to Ashleyâs medical problems that she no longer got too worked up about anything. There was always something wrong with Ashley; she always had a pain somewhere. But as Dueene heard Ashley describe the severe pain knifing through the back of her eye, she thought to herself, No wonder sheâs so
As Dueene asked more questions, she began to see how Ashleyâs medical history lined up with the diagnosis; though it scared her, it also gave her hope. It wasnât all bad news. Williams syndrome kids have special needs, but they also have an intriguing set of personality traits. They are highly social with remarkable verbal abilities and often have an affinity for music.
The doctor spent two hours talking to Dueene. For the first time, Dueene understood her daughter. Armed with a diagnosis, Dueene was able to more knowledgeably navigate the medical system and choose appropriate therapies for Ashley. Within weeks, Ashley stopped crying.
It had only taken four years.
Over the years, Dueene watched her daughter become more independent and discover her own interests. Ashley was crazy about monster trucks and wedding cakes; she often obsessed about them. Dueene couldnât allow Ashley to go to the fairgrounds to watch the monster trucks perform because it irritated her asthma, but she helped her daughter get a ride in one driven by a friend. It was the best day of Ashleyâs life. After watching shows on TV aboutdecorative wedding cakes, Ashley decided that instead of a bride and groom on the top of her cake, she wanted his-and-her monster trucks. Her eyes lit up, her speech got faster, and she bounced in her seat as she talked about her passions.
Friendly and social, Ashley had so much about her to love, but by her teens a dark side showed up. Every morning started with a mother-daughter struggle. Ashley would get up wanting to fight. Dueene would try to get her to eat breakfast, and Ashley would respond, âI donât want to eat that. I donât like that.â Further coaxing only resulted in Ashley screaming, âYou canât make me!â
Ashley then refused to take her medications. After much fighting and tears on both sides, Dueene would have to physically make her.
While Ashley was in school, Dueene found a few hours of peace working at the restaurant. Then Dueene would pick her up and the fighting would start all over again. Dueene hated it. It wasnât at all what she wanted, but she also knew that sometimes Ashley couldnât control herself.
The screaming and arguing went on for years. Doctors prescribed mood stabilizers and antidepressants. They didnât seem to help. Dueene knew Ashley was having headaches and those alone made her irritable, but the irritability grew into rage.
As things worsened, Ashley began hitting Dueene, and then Dueeneâs boyfriend, Jeff, the only male role model in her life. The physical violence got so out of control that there were days Dueene had to physically restrain Ashley. At times, she even thought about calling the police for her own safety.
Though her crying as an infant had been frustrating and exhausting, as a teen Ashleyâs anger was turning into something more dangerous. Dueene wasnât sure how it would end.
On a weekday in December, Dueene took eighteen-year-old Ashley to the eye doctor for a routine visit. âHave you been having headaches?â he asked.
Dueene listened as Ashley told him about the intense headaches she was experiencing almost constantly. Dueene was surprised. Though Ashley had mentioned the headaches, she hadnât complained. By this time Dueene was so used to Ashleyâs medical problems that she no longer got too worked up about anything. There was always something wrong with Ashley; she always had a pain somewhere. But as Dueene heard Ashley describe the severe pain knifing through the back of her eye, she thought to herself, No wonder sheâs so
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