http://www.aolhealth.com/2010/03/04/caring-for-autistic-children-jeanette-odonnell/ On her frank and funny blog,
What Are They Thinking ? , 49-year-old Jeanette O'Donnell chronicles her life as the mother of six children, five of whom are autistic. O'Donnell, a hotel reservations clerk who works from her Austin, TX, home, details her children's remarkable progress and challenges in school and makes an argument against invasive medical treatments and for neurodiversity -- the belief that autism is not a disorder and that people with autism have a different sort of order that should be respected and accepted, not pathologized. So how do O'Donnell and her husband, Patrick, the manager for a printing company, maintain their positive approach to raising children? We spoke to O'Donnell to find out.
AOL Health: Five of your six children are autistic . What role do you think genetics play? JO: I believe that in my family, it's genetic. Kiernan, my youngest and my most severely affected [Kiernan is not verbal], has never had a vaccination. I didn't vaccinate him because when he was born, I was sure that it was
vaccinations that [caused autism]. And three of my daughters were born in a birthing center, so they had no medical interactions.
AOL Health: You view autism as an incurable neurological disorder, while other people see it as curable and linked to external causes. Can you explain your perspective?JO: They believe it's a vaccine injury -- that the measles germ from the measles vaccine settles in the gut and you get leaky gut syndrome. I believe that it's a neurological disorder, that you're wired differently. You can train a brain to rewire itself, but you can't cure autism. Since I had Caitlin 19 years ago, I've seen 19 causes of autism: It was the mother's fault; it was breastfeeding; it was vaccines; it was environmental. And I don't buy it. We took the focus off what caused it and put it on how to make these children very functional. And now we have five very functional children.
AOL Health: You are opposed to certain aspects of the biomedical approach to autism. Why?JO: I don't believe in chelating [a controversial process that removes heavy metals from the body with side effects such as fever, headache, vomiting and convulsions] or performing colonoscopies on a kid. I don't believe in freaky diets like the elemental diet [an all-liquid nutrition therapy] that forces a child to follow a liquid diet. I don't believe in administering B12 shots or suppositories that supposedly pull out metals. I don't believe in IVIG infusion [a blood product administered intravenously] unless they actually need it [for inflammatory or autoimmune disease]. A lot of the parents have been told by a DAN [
Defeat Autism Now ] doctor that their child needs these treatments and that you're not being a good parent unless you do everything to cure your kid. These doctors are so invested financially and emotionally in these programs that they can't stop or they think they will have failed the children. I know a woman whose son is on the elemental diet and sits in a hyperbaric oxygen chamber and is chelated. She puts a nicotine patch on his butt to help his hyperactivity, which, to me, is child abuse.
AOL Health: Aren't these parents just desperate to help their kids?JO: The media needs to quit making autism so desperate. You don't see the stories about hope and happiness. People want to see a cure. [O'Donnell's 10-year-old son] Patrick lost his diagnosis of special ed last week, but nobody in those communities wants to hear about it.
AOL Health: Why not?JO: Because it took hard work. Because Patrick worked his butt off. The media should show him, not kids who get the metals pulled from them and still don't talk. It takes dedicated kids and supportive people to see progress. These kids want to be functional, too. If you take a 2-year-old diagnosed with autism in five years, you will see a change, but not by sitting in a room and watching him rock. You have to work with him.
AOL Health: Studies show that 10 percent of kids can be cured with intensive behavioral therapy. How do you explain it?JO: I say 10 percent of those children grew up and matured and became better. I have a cousin that didn't talk until he was five; he used to rock and bang his head. He's now a bank president. I know a girl who had cerebral palsy, and they said she would never walk, and she's in ballet and tap now. I learned a long time ago that doctors aren't always right.
AOL Health: You discuss how your children have improved -- how Caitlin, your eldest with severe autism, will be capable of living on her own, and how two of your children who previously had severe autism now are diagnosed on the very low end of the spectrum. What led to such improvements?
JO: Erin, our 13-year-old, was diagnosed as severely autistic at 18 months. They said to not expect much from her. She smeared toothpaste, shampoo, poop. We were prepared to have the worst time with her. So we sent her to therapy [occupational, speech, and physical] five days a week until she was 5, and then we added play therapy. She got to kindergarten, and she was put into the regular kindergarten, and she started talking. By the end of kindergarten, though, they were going to hold her back because she couldn't read. When we told her why she would be staying back, she taught herself, and by the time she got reevaluated, she was above and beyond her reading level. She has straight A's with no help from anyone. One of the teachers in middle school last year said, "Thank you for raising such a lovely child, so smart and so pleasant." I wanted to take credit, but she had done it all. She thought there was no reason she couldn't.
AOL Health: You send your kids to public school rather than homeschool them or send them to a special school. How do you make this work for them?JO: When Caitlin started school, we didn't have a choice. She was the first autistic child in the elementary school. She thrived there because she had interaction with kids who didn't have autism. She knew colors and numbers that we didn't know she knew. She's had an aide since kindergarten. Now, she needs the aide only for safety reasons because she is easily misled. Someone could say, "Come here and pull your shirt up," and she would do it. But she goes to classes by herself and her true grades are A's and B's and she can graduate this summer.
AOL Health: Do the kids behave themselves in school?JO: Society doesn't have to accept my kids, but I have to make these kids accept what society expects. They have to live by society rules, and that means no meltdowns in public. Years ago, we had a behavior therapist for Caitlin, who was coming home and tearing clothes out of closest and drawers while behaving well at school. The therapist said, "What would you prefer? For her to be loopy at school or home?" They need an outlet, so they have one at home. They can jump and flap and hum and do whatever they want around here.
AOL Health: As someone outspoken and opinionated, you've received criticism in autism circles. What do you say to your critics? JO: I am 49 years old, and it took till I was 40 to not care what other people thought about me. I've been accused of not having autistic kids, of being a media whore, and I've been called horrible names on the Internet. But you're not walking in my shoes. I don't feel bad for my kids. They're not damaged, and they don't need to be cured. Here in Texas, we say we cure our meat and recover our furniture. We don't do it to our children. That said, anyone can comment on my blog. Usually they're a parent with an autistic child, and they have to [be] heard. I just do what works for us.
AOL Health: What is it like for 12-year-old Meaghan to live with five autistic siblings?
JO: For a while, she was a little bummed out that she didn't have autism because they were getting all the attention. But there is no "poor Meaghan." Meaghan is very nurturing and loving. She has slumber parties, and she plays the bassoon at school. She has a normal life and normal teenage angst.
AOL Health: Raising six children would be difficult for any mother, but when five are autistic, it's especially challenging. How do you cope? JO: Caitlin gets community living assistance. That means she gets massage therapy once a week. Wouldn't we all like that? And a helper named Helen comes for 30 hours a week to help [Caitlin] rinse her hair and brush her teeth. [Helen] helps [Caitlin] in the kitchen, since Caitlin sometimes has to help me prepare dinner. Someone else paid by the county comes by for 48 hours a month -- usually from 3 p.m. to 5:30 pm on school days -- to give respite care to the others. That's great because I work out of my house. The rest is up to us. My husband drives Erin to choir practice; Meaghan to band; Erin to student council, where she's the treasurer, and Dierdre to church functions and to orchestra, where she plays the violin. Patrick goes to baseball. They all have friends who come over, except for Kiernan and Caitlin who don't care much about that. On any given day, I have 8 or 10 kids in my house, and I'm cooking for all of them!
... But you still haven't asked
the question.
AOL: What is the question?JO: People ask why I had six when I knew the first was autistic. First, the doctor told us there was no chance that a second kid would have it, so we didn't know. But I want the people who question them to meet them. And I want them to tell me which one shouldn't be here. Every one of my kids belongs. They are here for a reason. I don't know what it is, but there's a reason. Well, actually, I do know the reason.
AOL: What's the reason?JO: So I could be their mama, that's why they're here! It's very selfish. No, the truth is: They're gonna teach the world a lot.
On her frank and funny blog, What Are They Thinking ? , 49-year-old Jeanette O'Donnell chronicles her life as the mother of six children, five of whom are autistic. O'Donnell, a hotel reservations clerk who works from her Austin, TX, home, details her children's remarkable progress and challenges in school and makes an argument against invasive medical treatments and for neurodiversity -- the belief that autism is not a disorder and that people with autism have a different sort of order that should be respected and accepted, not pathologized. So how do O'Donnell and her husband, Patrick, the manager for a printing company, maintain their positive approach to raising children? We spoke to O'Donnell to find out.
AOL Health: Five of your six children are autistic . What role do you think genetics play?
JO: I believe that in my family, it's genetic. Kiernan, my youngest and my most severely affected [Kiernan is not verbal], has never had a vaccination. I didn't vaccinate him because when he was born, I was sure that it was vaccinations that [caused autism]. And three of my daughters were born in a birthing center, so they had no medical interactions.
AOL Health: You view autism as an incurable neurological disorder, while other people see it as curable and linked to external causes. Can you explain your perspective?
JO: They believe it's a vaccine injury -- that the measles germ from the measles vaccine settles in the gut and you get leaky gut syndrome. I believe that it's a neurological disorder, that you're wired differently. You can train a brain to rewire itself, but you can't cure autism. Since I had Caitlin 19 years ago, I've seen 19 causes of autism: It was the mother's fault; it was breastfeeding; it was vaccines; it was environmental. And I don't buy it. We took the focus off what caused it and put it on how to make these children very functional. And now we have five very functional children.
AOL Health: You are opposed to certain aspects of the biomedical approach to autism. Why?
JO: I don't believe in chelating [a controversial process that removes heavy metals from the body with side effects such as fever, headache, vomiting and convulsions] or performing colonoscopies on a kid. I don't believe in freaky diets like the elemental diet [an all-liquid nutrition therapy] that forces a child to follow a liquid diet. I don't believe in administering B12 shots or suppositories that supposedly pull out metals. I don't believe in IVIG infusion [a blood product administered intravenously] unless they actually need it [for inflammatory or autoimmune disease]. A lot of the parents have been told by a DAN [ Defeat Autism Now ] doctor that their child needs these treatments and that you're not being a good parent unless you do everything to cure your kid. These doctors are so invested financially and emotionally in these programs that they can't stop or they think they will have failed the children. I know a woman whose son is on the elemental diet and sits in a hyperbaric oxygen chamber and is chelated. She puts a nicotine patch on his butt to help his hyperactivity, which, to me, is child abuse.
AOL Health: Aren't these parents just desperate to help their kids?
JO: The media needs to quit making autism so desperate. You don't see the stories about hope and happiness. People want to see a cure. [O'Donnell's 10-year-old son] Patrick lost his diagnosis of special ed last week, but nobody in those communities wants to hear about it.
AOL Health: Why not?
JO: Because it took hard work. Because Patrick worked his butt off. The media should show him, not kids who get the metals pulled from them and still don't talk. It takes dedicated kids and supportive people to see progress. These kids want to be functional, too. If you take a 2-year-old diagnosed with autism in five years, you will see a change, but not by sitting in a room and watching him rock. You have to work with him.
AOL Health: Studies show that 10 percent of kids can be cured with intensive behavioral therapy. How do you explain it?
JO: I say 10 percent of those children grew up and matured and became better. I have a cousin that didn't talk until he was five; he used to rock and bang his head. He's now a bank president. I know a girl who had cerebral palsy, and they said she would never walk, and she's in ballet and tap now. I learned a long time ago that doctors aren't always right.
AOL Health: You discuss how your children have improved -- how Caitlin, your eldest with severe autism, will be capable of living on her own, and how two of your children who previously had severe autism now are diagnosed on the very low end of the spectrum. What led to such improvements?
JO: Erin, our 13-year-old, was diagnosed as severely autistic at 18 months. They said to not expect much from her. She smeared toothpaste, shampoo, poop. We were prepared to have the worst time with her. So we sent her to therapy [occupational, speech, and physical] five days a week until she was 5, and then we added play therapy. She got to kindergarten, and she was put into the regular kindergarten, and she started talking. By the end of kindergarten, though, they were going to hold her back because she couldn't read. When we told her why she would be staying back, she taught herself, and by the time she got reevaluated, she was above and beyond her reading level. She has straight A's with no help from anyone. One of the teachers in middle school last year said, "Thank you for raising such a lovely child, so smart and so pleasant." I wanted to take credit, but she had done it all. She thought there was no reason she couldn't.
AOL Health: You send your kids to public school rather than homeschool them or send them to a special school. How do you make this work for them?
JO: When Caitlin started school, we didn't have a choice. She was the first autistic child in the elementary school. She thrived there because she had interaction with kids who didn't have autism. She knew colors and numbers that we didn't know she knew. She's had an aide since kindergarten. Now, she needs the aide only for safety reasons because she is easily misled. Someone could say, "Come here and pull your shirt up," and she would do it. But she goes to classes by herself and her true grades are A's and B's and she can graduate this summer.
AOL Health: Do the kids behave themselves in school?
JO: Society doesn't have to accept my kids, but I have to make these kids accept what society expects. They have to live by society rules, and that means no meltdowns in public. Years ago, we had a behavior therapist for Caitlin, who was coming home and tearing clothes out of closest and drawers while behaving well at school. The therapist said, "What would you prefer? For her to be loopy at school or home?" They need an outlet, so they have one at home. They can jump and flap and hum and do whatever they want around here.
AOL Health: As someone outspoken and opinionated, you've received criticism in autism circles. What do you say to your critics?
JO: I am 49 years old, and it took till I was 40 to not care what other people thought about me. I've been accused of not having autistic kids, of being a media whore, and I've been called horrible names on the Internet. But you're not walking in my shoes. I don't feel bad for my kids. They're not damaged, and they don't need to be cured. Here in Texas, we say we cure our meat and recover our furniture. We don't do it to our children. That said, anyone can comment on my blog. Usually they're a parent with an autistic child, and they have to [be] heard. I just do what works for us.
AOL Health: What is it like for 12-year-old Meaghan to live with five autistic siblings?
JO: For a while, she was a little bummed out that she didn't have autism because they were getting all the attention. But there is no "poor Meaghan." Meaghan is very nurturing and loving. She has slumber parties, and she plays the bassoon at school. She has a normal life and normal teenage angst.
AOL Health: Raising six children would be difficult for any mother, but when five are autistic, it's especially challenging. How do you cope?
JO: Caitlin gets community living assistance. That means she gets massage therapy once a week. Wouldn't we all like that? And a helper named Helen comes for 30 hours a week to help [Caitlin] rinse her hair and brush her teeth. [Helen] helps [Caitlin] in the kitchen, since Caitlin sometimes has to help me prepare dinner. Someone else paid by the county comes by for 48 hours a month -- usually from 3 p.m. to 5:30 pm on school days -- to give respite care to the others. That's great because I work out of my house. The rest is up to us. My husband drives Erin to choir practice; Meaghan to band; Erin to student council, where she's the treasurer, and Dierdre to church functions and to orchestra, where she plays the violin. Patrick goes to baseball. They all have friends who come over, except for Kiernan and Caitlin who don't care much about that. On any given day, I have 8 or 10 kids in my house, and I'm cooking for all of them!
... But you still haven't asked the question.
AOL: What is the question?
JO: People ask why I had six when I knew the first was autistic. First, the doctor told us there was no chance that a second kid would have it, so we didn't know. But I want the people who question them to meet them. And I want them to tell me which one shouldn't be here. Every one of my kids belongs. They are here for a reason. I don't know what it is, but there's a reason. Well, actually, I do know the reason.
AOL: What's the reason?
JO: So I could be their mama, that's why they're here! It's very selfish. No, the truth is: They're gonna teach the world a lot.