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Deaf-blind boy responds to innovative intervener | Video
Rose Thompson says she now dances down the underwear aisle at stores. Her 7-year-old son, ShaynePatrick, has been potty trained.
That's quite a feat, she says, considering his age and all he's been through in his short life.
ShaynePatrick is deaf-blind. He's visually impaired with spotty blindness and his hearing spikes, meaning the volume goes up and down but not long enough most times for his brain to process the sounds.
"Let me tell you, those Pull-Ups are expensive," Thompson said. "This only happened since November, and he really started walking only about a year ago."
The child's progress, she said, can be traced to the patient efforts of a young Canadian, Lindsay Day, who's an intervener. Specially trained to work with deaf-blind children, she graduated last year after two years of training at George Brown College in Toronto.
Thompson said help from local or state entities with the education of her son is about impossible to find. Interveners are not recognized by the education establishment in Georgia - and most other states, she said. To get ShaynePatrick the help he needs, Thompson said, she has had to rely on private funds and the kindness of friends.
For her part, Day said she has to be careful when crossing the border and say that she is just visiting and not coming to the United States to work, because the intervener profession still awaits legal acceptance.
"I hope the profession will be recognized in the future, and it will when people see what a difference we can make in the life of a child," Day said. "We provide them access to the surrounding environment."
Thompson said she's not looking for a baby sitter, "just someone to work with him."
HIS OWN SCHOOLHOUSE
ShaynePatrick was born at 25 weeks into his mother's pregnancy.
He was born visually impaired, and he lost his hearing at 3 months because of the antibiotics he was taking, Thompson said. By the time he was 3 years old, "he was having a lot of issues. Then we met a person, Mary Green, who was familiar with sign language and started showing us how to sign," Thompson said.
The family moved to Houston County two years ago so ShaynePatrick could attend school, she said. At first, it was a good experience for the child, but the family pulled him out of the school system in November, she said.
"The first year at Lake Joy Elementary was great. He worked with an awesome teacher," Thompson said. "But in his second year, he had another teacher and there were lots of issues. There was not enough signing for the hearing impaired like we thought there would be. Things started to get out of whack, with lots of timeouts for him. You have to know the disability - he doesn't know time, the concept of time. But he's very smart, very teachable and very learnable."
Beth McLaughlin, director of community and school affairs for Houston County schools, said the system's policy is not to discuss specific students and their individual situation because of right to privacy and confidentiality concerns.
"Don't get me wrong," the boy's mother said, "they are good teachers over there at Lake Joy, but they're not trained to handle deaf-blind children."
"It's a different situation than being just deaf or just blind," Thompson said. "We want to send him back to school, but we don't want to see him hurt."
With the help of people at Davidson's Grocery in Bonaire, who held fundraisers for the family, the Thompsons were able to bring intervener Day to Georgia last fall.
Thompson's husband, Shayne, built a one-room schoolhouse for the child in the backyard, and there ShaynePatrick went to "class" with Day.
The room has ShaynePatrick-sized desks and chairs, books, bulletin boards, paper, paints and other school paraphernalia. The door keeps out noises that would cause distraction.
FOOD AND FIRE STATION
"He's a good boy, a good student," said Day, getting ready for lessons.
Though Thompson said Curious George is the child's favorite character, it's another group of simians in that day's lesson.
Day signs "5 Little Monkeys" with ShaynePatrick in a corner of the room, sitting on the floor directly in front of him, talking and moving her hands to spell out the story.
"The one-on-one environment, we're real close together. Any movement can distract him from the lesson at hand. I use my hands a lot so he can feel what I'm talking about," Day said. "We go the whole day without a break. Yes, it's very repetitive. When he knows what I'm communicating, he wants to learn."
Thompson said her son can do the alphabet from A to Z, and his numbers from 1 through 10.
"He's struggling, though, with 11 and 12 right now," she said. "He's interested in books, large print. I'm so thankful for Lindsay because she helps him learn and understand the world."
One night, Thompson said, she thought ShaynePatrick was playing with his food, but he was really doing homework.
"I looked over and he was writing an 'S' in his mashed potatoes," she laughed. "He was trying to write his name, and had done that earlier in the day."
The family took ShaynePatrick to a pizza restaurant recently, and Thompson said the child looked at her and made the sign for "pay."
"He'd never done that before," she said. "He's learning concepts, such as without money you can't get anything."
Day said it is important for ShaynePatrick to be in public, for his sake and that of others.
"The more experiences I can give him, the more he can communicate and do more independent play," Day said. "I show him it's OK to take chances, and I give him his own voice."
Aside from the educational factor, it builds the child's self-confidence to be out in the community, she said.
"I'm getting him to show the world who ShaynePatrick is, to go out in the community more so people can say, 'It's ShaynePatrick!' " she said. "He sees that being ShaynePatrick is cool, and he can learn more."
About a month ago, they visited Fire Station No. 10 in Macon, she said. There was work to do before they went, she acknowledged.
"He's got to anticipate things. I told him the day before we visited the fire station we were going there and we played with water," she said. "The guys there were awesome, and he was happy happy, on the truck and playing with the fire hoses. He just needs more access to the world."
The more he goes out, the more he - and others - learn, she said.
"Being at the station or just being out in the community, it's so helpful. I can say intervener or deaf-blind and people will know what I'm talking about," she said. "More people get touched by ShaynePatrick."
SEEKING SUPPORT
The problem, Thompson said, is communication. She wants to be in contact with other parents of deaf-blind children, but said she is frustrated in her contacts with bureaucracy.
"What would help would be a support system, having contact with other parents of deaf-blind children," she said. "I want to let parents know it's not hopeless. These children can do things, many things."
State or federal aid also would be a big help, Thompson said, noting that it costs $40,000 to $50,000 to have use of an intervener for a year.
Dana Tofig, spokesman for the state Department of Education, said the state does have paraprofessionals trained to help deaf and blind children, but that's about it.
"We wouldn't really have a policy or guidance regarding interveners, and there is no state certification in this particular area," he said. "If she's helping the child in his education, that's great. We have many in the state who have the heart for serving these children."
Day was wrapping up her stay in early March, but said she expects to come back to Georgia in the future and do more work with ShaynePatrick. The money situation in the U.S. seems a little skewed, the Canadian said.
"To an outsider like myself, it seems that there is so much money spent on sports for children. A whole lot of money," she said. "They're out there in public, on the fields, but the deaf-blind child is probably in a room somewhere, rocking and banging their head against the wall. ShaynePatrick has been to that dark place. The world has to come to the deaf-blind child."
"Lindsay is the best investment we've made. She's opened others' minds about him," Thompson said. "The more people who hear about deaf-blind children, the more it will eventually affect."
It may take a celebrity, Day suggested.
"Deaf-blind is not like cancer, AIDS or hunger. It affects just a small percentage of people," she said, "but until somebody famous has a deaf-blind child, nothing will really happen."
Rose Thompson says she now dances down the underwear aisle at stores. Her 7-year-old son, ShaynePatrick, has been potty trained.
That's quite a feat, she says, considering his age and all he's been through in his short life.
ShaynePatrick is deaf-blind. He's visually impaired with spotty blindness and his hearing spikes, meaning the volume goes up and down but not long enough most times for his brain to process the sounds.
"Let me tell you, those Pull-Ups are expensive," Thompson said. "This only happened since November, and he really started walking only about a year ago."
The child's progress, she said, can be traced to the patient efforts of a young Canadian, Lindsay Day, who's an intervener. Specially trained to work with deaf-blind children, she graduated last year after two years of training at George Brown College in Toronto.
Thompson said help from local or state entities with the education of her son is about impossible to find. Interveners are not recognized by the education establishment in Georgia - and most other states, she said. To get ShaynePatrick the help he needs, Thompson said, she has had to rely on private funds and the kindness of friends.
For her part, Day said she has to be careful when crossing the border and say that she is just visiting and not coming to the United States to work, because the intervener profession still awaits legal acceptance.
"I hope the profession will be recognized in the future, and it will when people see what a difference we can make in the life of a child," Day said. "We provide them access to the surrounding environment."
Thompson said she's not looking for a baby sitter, "just someone to work with him."
HIS OWN SCHOOLHOUSE
ShaynePatrick was born at 25 weeks into his mother's pregnancy.
He was born visually impaired, and he lost his hearing at 3 months because of the antibiotics he was taking, Thompson said. By the time he was 3 years old, "he was having a lot of issues. Then we met a person, Mary Green, who was familiar with sign language and started showing us how to sign," Thompson said.
The family moved to Houston County two years ago so ShaynePatrick could attend school, she said. At first, it was a good experience for the child, but the family pulled him out of the school system in November, she said.
"The first year at Lake Joy Elementary was great. He worked with an awesome teacher," Thompson said. "But in his second year, he had another teacher and there were lots of issues. There was not enough signing for the hearing impaired like we thought there would be. Things started to get out of whack, with lots of timeouts for him. You have to know the disability - he doesn't know time, the concept of time. But he's very smart, very teachable and very learnable."
Beth McLaughlin, director of community and school affairs for Houston County schools, said the system's policy is not to discuss specific students and their individual situation because of right to privacy and confidentiality concerns.
"Don't get me wrong," the boy's mother said, "they are good teachers over there at Lake Joy, but they're not trained to handle deaf-blind children."
"It's a different situation than being just deaf or just blind," Thompson said. "We want to send him back to school, but we don't want to see him hurt."
With the help of people at Davidson's Grocery in Bonaire, who held fundraisers for the family, the Thompsons were able to bring intervener Day to Georgia last fall.
Thompson's husband, Shayne, built a one-room schoolhouse for the child in the backyard, and there ShaynePatrick went to "class" with Day.
The room has ShaynePatrick-sized desks and chairs, books, bulletin boards, paper, paints and other school paraphernalia. The door keeps out noises that would cause distraction.
FOOD AND FIRE STATION
"He's a good boy, a good student," said Day, getting ready for lessons.
Though Thompson said Curious George is the child's favorite character, it's another group of simians in that day's lesson.
Day signs "5 Little Monkeys" with ShaynePatrick in a corner of the room, sitting on the floor directly in front of him, talking and moving her hands to spell out the story.
"The one-on-one environment, we're real close together. Any movement can distract him from the lesson at hand. I use my hands a lot so he can feel what I'm talking about," Day said. "We go the whole day without a break. Yes, it's very repetitive. When he knows what I'm communicating, he wants to learn."
Thompson said her son can do the alphabet from A to Z, and his numbers from 1 through 10.
"He's struggling, though, with 11 and 12 right now," she said. "He's interested in books, large print. I'm so thankful for Lindsay because she helps him learn and understand the world."
One night, Thompson said, she thought ShaynePatrick was playing with his food, but he was really doing homework.
"I looked over and he was writing an 'S' in his mashed potatoes," she laughed. "He was trying to write his name, and had done that earlier in the day."
The family took ShaynePatrick to a pizza restaurant recently, and Thompson said the child looked at her and made the sign for "pay."
"He'd never done that before," she said. "He's learning concepts, such as without money you can't get anything."
Day said it is important for ShaynePatrick to be in public, for his sake and that of others.
"The more experiences I can give him, the more he can communicate and do more independent play," Day said. "I show him it's OK to take chances, and I give him his own voice."
Aside from the educational factor, it builds the child's self-confidence to be out in the community, she said.
"I'm getting him to show the world who ShaynePatrick is, to go out in the community more so people can say, 'It's ShaynePatrick!' " she said. "He sees that being ShaynePatrick is cool, and he can learn more."
About a month ago, they visited Fire Station No. 10 in Macon, she said. There was work to do before they went, she acknowledged.
"He's got to anticipate things. I told him the day before we visited the fire station we were going there and we played with water," she said. "The guys there were awesome, and he was happy happy, on the truck and playing with the fire hoses. He just needs more access to the world."
The more he goes out, the more he - and others - learn, she said.
"Being at the station or just being out in the community, it's so helpful. I can say intervener or deaf-blind and people will know what I'm talking about," she said. "More people get touched by ShaynePatrick."
SEEKING SUPPORT
The problem, Thompson said, is communication. She wants to be in contact with other parents of deaf-blind children, but said she is frustrated in her contacts with bureaucracy.
"What would help would be a support system, having contact with other parents of deaf-blind children," she said. "I want to let parents know it's not hopeless. These children can do things, many things."
State or federal aid also would be a big help, Thompson said, noting that it costs $40,000 to $50,000 to have use of an intervener for a year.
Dana Tofig, spokesman for the state Department of Education, said the state does have paraprofessionals trained to help deaf and blind children, but that's about it.
"We wouldn't really have a policy or guidance regarding interveners, and there is no state certification in this particular area," he said. "If she's helping the child in his education, that's great. We have many in the state who have the heart for serving these children."
Day was wrapping up her stay in early March, but said she expects to come back to Georgia in the future and do more work with ShaynePatrick. The money situation in the U.S. seems a little skewed, the Canadian said.
"To an outsider like myself, it seems that there is so much money spent on sports for children. A whole lot of money," she said. "They're out there in public, on the fields, but the deaf-blind child is probably in a room somewhere, rocking and banging their head against the wall. ShaynePatrick has been to that dark place. The world has to come to the deaf-blind child."
"Lindsay is the best investment we've made. She's opened others' minds about him," Thompson said. "The more people who hear about deaf-blind children, the more it will eventually affect."
It may take a celebrity, Day suggested.
"Deaf-blind is not like cancer, AIDS or hunger. It affects just a small percentage of people," she said, "but until somebody famous has a deaf-blind child, nothing will really happen."