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.
About Me
- Mom26children
- I am the proud mother of 6 children. 5 of our children have autism. We do not feel our world has ended, but just begun. We do not chelate, intervene biochemically, give shots of any kind, practice ABA, etc. We treat them as we treat any humanbeing. We treat them with kindness and respect and expect the same from them. They are exceptional children.
Sunday, March 07, 2010
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70 comments:
Great interview, great attitude.
I concur with Clay, or, what he said.
"The media needs to quit making autism so desperate."
...because *that* is what feeds the quacks fresh meat. And what causes the giant sucking sound (you remember Ross Perot, right?) of money flowing out of local communities into Autism $peaks, with only 4 cents on the dollar coming back to the local communities.
"Here in Texas, we say we cure our meat and recover our furniture. We don't do it to our children."
Girl, you have inherited the wit of Molly Ivins!
Thank you for being *you*, and the mother of 6 beautiful children.
-- Phil
This was just so wonderful to read! Thank you for posting it!
"No, the truth is: They're gonna teach the world a lot."
Yep.
Well said!
Not sure where this interview will be published- but somewhere some poor mom of a severely autistic child , is going to read what you said and beat herself up thinking that the reason her child is still feces smearing, non-verbal and aggressive autistic , is because she hasn't worked hard enough with him/her.
And she won't understand that much of this interview is your historical ax grinding with the "biomedical community", rather than an actual let's-help-other-parents advice.
Also- I'm not sure why you think that people wouldn't be interested in hearing about Patrick's story of progress through hard work. Speaking for myself, I am extremely interested, because hard work is all I do with my son. As are all the parents and children on the spectrum that I know. Even the ones who do biomed- not sure why you think that all these people do is rub creams and give drugs.
I should clarify: my son has been biomed-free for years. It was something we dabbled in and then abandoned. Just to say that I'm not biased "that way " :). Just trying to stay fair and objective.
Lillian
Lillian,
I am not sure why you get the opinion that I think a parent does not work hard enough for their child if their child continues to be severely autistic.
I am just sick and tired of being told that parents who do not "dabble" in biomedical interventions sit back and watch our children be autistic.
Parenting any child is hard work.
I have said before that I do not think my job as the mother of 5 autistic children is any harder than a parent who has 1 autistic child.
If Patrick's achievements are so wonderful to other's, then why is his achievement of losing his Special Education status at school not a blog post on AoA or any other pro-biomedical site? Isn't this the goal they are trying to achieve ?
This is just an example of what the biomedical community comments over there at AoA:
Has everyone noticed that the trolls and people who are so dead set against recovery and the concept of vaccine damage are the ones who are either:
A. too freakin' lazy to have ever even tried biomed and drug their kids to the max
or
B. are unbelievably jealous because their children are 9, 10, 11, years old and beyond and are still aggressive, have made little progress and are stuck in some horrible school situation or residential.
The pattern of these parents who claim to hate Jenny are so similar. What losers.
Posted by: ENM | March 09, 2010 at 04:51 PM
Jeanette,
great interview. I put Dora's as the best in the AOL Health set, but your's is a close second.
Awesome interview and awesome attitude.
You know, I don't get where Lillian gets that idea; maybe it's because people read into things that aren't there.
Nothing about Jeanette's posts ever insinuate that if only a parent worked hard enough, then.... Jeanette is the first to acknowledge that a child who is more severely impacted by autism may not achieve independence. Sigh. And the point has never been about Jeanette's hard work, it's always been about the hard work her children do to achieve their best.
So, I'm not gonna by Lilian's contention that she's not biased.
I don't know much, ok-hardly ANYthing, about autism. I don't know, and never have met anyone autistic. All that I really know about it is what is shown on tv---actors PORTRAYING people who have autism. First off, you have taught me so much (simply from your AOL story) and I think that a lot of autistic children might grow up a little bit differently because of you.
The main reason that I am writing, however, is to just let you know that I think you are an AMAZING mother, an amazing woman in general. I've been wanting and trying, for years, to have a child, and when it finally happens, and I KNOW it'll happen, I hope that I can be 1/10th of the woman and mother that you are. As I mentioned before, I don't know anyone who is autistic, but I'd like to change that statement to, because of you :
I don't know anyone who has told me that they are autistic. Because after reading your story, I could very well run into someone who is autistic every single day, but there are so many of these wonderful people who live a wonderful, "normal" (please pardon my wording, I'm trying so hard not to offend anyone), happy lives.
You and your children are such bright stars and so very inspirational- there should be more people like you in this world. I just adore you; your strength and your love.
Dear Mom26Children, and Meagan,
Hello Meagan. My name is Phoenix and I am the middle child and the only non autistic in my bunch. My older brother and younger sister are both autistic, though my brother worse then my sister. and then when my father got remarried, my step brother was diagnosed autistic as well.
YOU GO MEAGAN!!! there is a lot put on your shoulders I am sure! My mother wasn't as open as yours to properly working with my siblings growing up, and my step brother is the only one out of my 3 very special siblings who is expected to live a high functioning life. I know how difficult it can be. Bullies at school, feeling the need to be protective, maybe even feeling left out about the attention you get, but keep your chin up!!!
I'm sure you know just as well as I do about the very special friendship you and your siblings share! I am very close to my bothers and sister. SO MUCH more then my non autistic step siblings. They are so loving and their inocence makes them so much more lovable in return!
My older brother and I shared such a great friendship, that some days, you wouldn't know who was the older and younger, or even the autistic one. To this day I still play Pokemon cards with my 25 year old brother, and her I am, 23, married, living on my own, and in college! But that is a part of our bond!
You go girl!! I am sure you share your mothers strengths! Shine your brightest every day! It is a great thing you do just by loving your amazing brothers and sisters!! You reap nothing but good things when you work hard in life!
Nothing but love,
Phoenix
I'm a dad w/ an autistic 9 yr old boy and a 12 yr old daughter with Asperbergers...
Your interview was a breath of fresh air. For so long, I've had to endure the "it's environmental", "it's the vaccines", "it's the diet" diatribes. I have done a significant amount of research, and like you, believe autism is a genetic disorder related to "miswiring" of the brain.
The work you have done with your kids is nothing short of inspirational for other parents, myself included. I am divorced and the kids live w/ their mom. Trying to just have a phone conversation with my son has become such a chore. He yells, screams, and refuses. They are working on phone talking with him in school, and I will use your example to not give up hope, to keep working, to stay engaged, and to let both of my kids know that I love them, no matter what challenges they may have...
Thank you, Jeanette...
I'm loving this. I am 38 and autistic. I also have lived alone for twenty years (with my fair share of struggles but I'm making it nonetheless), and three years ago I received my bachelor's degree in psychology. For those who want to know, my grades were A's and B's, and I only received extra time for test taking. I did all of my work on my own.
THANK you for not buying into the quack science. I can't tell you how many mothers criticize me! for believing this is a neurological disorder with a genetic basis. At times the environment does exacerbate some problems, and I do have some autoimmune flare ups occasionally, but an improved diet (when I say improved, I simply mean balanced--NOT the diets you discussed) and a focus on getting proper sleep help me tremendously.
I didn't speak until I was 6 and up until a few years ago, I can't say my social interaction was all that meaningful. But I have come to adore people and can see so many wonderful qualities in them now and in the world at large. Life is good, and I am thrilled I'm learning how to participate in it.
I agree that for autistic children to improve, people must make concerted efforts to work with them. But for those who do not see results, please hang in there. Each child's time table is different, and you cannot measure one child's progress against another child's.
I also agree that most "special treatments" and diets are child abuse. Growing up in the 70's most of these interventions (I use the term loosely and generously) were unheard of so I was spared. I'm so glad.
And finally, as for "leaky gut syndrome" I fully believe most of the gastrointestinal problems autistic children experience are a result of anxiety. I had problems for a while, but they subsided as my social skills improved. The improvement had nothing to do with diet.
I applaud you for your honesty and integrity. Thank you for sharing your story. I am both extraordinarily pleased and encouraged. You have validated my own stance and so many of my thoughts and beliefs. I am grateful!
I wanted to thank the 38 yo person with autism for commenting....hats off to you for your hard work and dedication to yourself. I imagine that it took an enormous amount of strength and commitment to accomplish that....and I am very happy for you.
I am the mother of 4 children, the youngest of which is diagnosed with autism. I do not follow the DAN approach but I do recognize the need for parents to research all options and make educated decisions on what is appropriate for their child. I do not believe that anyone should be discredited for attempting to help their child have a better life. And although I do not follow this method, I applaud parents and practitioners for taking the time to become educated.
Autism is a spectrum..and that is why is referred to as ASD. A person can fall along the spectrum at any given point and can move up or down the spectrum depending on multiple variables. What works for one, may not work for another. Therefore therapies and treatments may need to be altered to accomodate the individual during that time.
It saddens me to see people so critcal of others. Regardless of the approach taken, or methodology used, the emphasis should be on improving the lives of these individuals. People typically have to try multiple therapies before they find the one that works for their child. Which goes along with the nature of austism....just try and find two individuals diagnosed with autism that have the exact same needs.
As for the post that stated "they wished people would stop referring to autism as desperate", I hope that never happens. It is desperate...these individuals work so hard every day of their lives. There is not one single aspect of their life that is not affected by the disorder....and wouldn't it be nice if that didn't have to be. Having said that, I also feel compassion towards other disorders and illness such as diabetes, cancer and MR (just to name a few.)It is that emotion that someday may lead to a cure for these disorders and improve the lives of many.
i LOVE your attitude! Our daughter started working with kids with autism last year as a behavioral specialist. She absolutely loves what she does and they love her:-) Jillian had her own learning problems and her third grade teacher told me that 'You are her only advocate.' I absolutely believe that. Who else is going to stand in the gap and get the help our kids need but us? We are all going to have a different approach to the same problem because we are all different and unique. Doesn't make it wrong or right, just different and what works for one doesn't work for another. So I totally applaud your support of your kids development to be the best they can be!..and I agree you are the best mom for your kids :-) They are very blessed to have you!! Thanks for being so transparent as to allow others to learn from your experience.
I loved reading about you and your family. You and your kids are remarkable. I am a high school teacher. I wish every parent had your attitude of dealing with what is and helping their kids to understand it takes hard work to be successful - for all of us. Many parents enable poor behavior and make excuses for their kids. You SO rock! I have a nephew who has dwarfism and my brother and sister-in-law have your same amazing attitude. He is an amazing 2 yr old!
I'm a social work major and I've spent lots of time working with young children so I know when a child isn't behaving like adults want it can be a bit frustrating sometimes. I admire your strength and agree with everything you said in your interview. You've inspired me to continue learning about human behavior and what makes each of us who we are.
Gosh, silly me, I thought the "What are they thinking?" title of your blog referred to kids. I teach, and I often wonder what they're thinking . . . certainly more insightful and grounded thoughts than I assume in the rush of it all.
I'm sorry the world of parenting has become such an angry place for those of you with spectrum children. You neither warrant nor benefit from the anger you receive . . . and we each feel our own anger in a private world only we can grasp.
I've had several autistic/Aspergers/spectrum students each year, I'll warrant. They're wonderful people whom I'll enjoy knowing as adults.
Blessings.
Three of my five kids are autistic, and I totally agree with you...there is nothing "wrong" with them. They have every right to be who they are...they just need some help along the way. Who knows? Maybe autism is the next step in our evolotion!
GLAD TO FIND THIS BLOG. my 5 year old grandson is autistic. he has gone from non verbal to a lot of words but no long sentences. major problem with eating. his diet is cheetos, some french fries, a cookes once every fre months, nutrition is from pediasure. looking for helpful suggestions and contacts in houston texas
My third son of four has autism and is the sweetest non-communicative child. Unlike you, however, I have taken the approach of the DAN doctors and the GFCF diet and I have to admit that I have also seen some incredibly positive changes. He stopped his tantrums, screaming and behavioral problems. He has greatly improved with his constipation problems. And, most importantly, he now seems to be in "our world" and understands and listens when spoken to. He still doesn't communicate although he knows many words and can read and I am hoping that he thrives in that area soon as I am reading a lot about children who didn't talk until they were 6 (that's his age now).
I have seen parents like you who have had successes without any biomedical or dietary intervention and I am honestly envious but with autism, I believe that each child truly is different.
Thanks for your blog.
I just read your interview and I just had to write and tell you what a breath of fresh air it was to read. As the mother of identical twin boys on the spectrum and 2 who are not, I was starting to feel alone in my belief that it is a genetic disorder and cannot be "cured" and that we need to love them just the way they are. I wouldn't trade them in for a "normal" set of twins. As long as they are happy and thriving, I feel like my job is done. I am am so so happy I ran across the article. Thank you.
"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."
I have been thinking about this a lot lately and it is amazing to see that someone else feels the same way. I am a 1st year special education teacher of young children with ASD and am now getting my M.A. in autism. Recently I have been having a crisis of ethics regarding the treatment of autism- especially in changing behaviors.
I understand and agree that dangerous behaviors (e.g. self-injurious behaviors and agression towards others) needs to be addressed and changed within individuals on the spectrum (as with all other individuals who display these behaviors). What I have a problem with is changing who these children are in order to make them into what society wants them to be. For example- flapping. Besides looking "strange" to people in society- what are the negatives to this behavior? If I am working with a child who flaps when he is excited- who am I to decide that that is not an appropriate way for him to express his excitement? Who is this harming?
My class is high-functioning so I am constantly being pressured to change these children to become "typical" so that no one notices they're different when they go into the mainstream classes. They're not disrupting the learning of any other child at the school- so again where is the harm? But I think they are perfect the way that they are. This is how people with autism's brains are wired and we should accept them as they are.
It all goes back to the idea that disability is a social construct. Something that society has deemed that is less able than the majority. It's an interesting perspective I want to look more into.
I want to work with these children so that they may become successful without altering their personalities and who they are as indivduals.
These are just developing thoughts of mine- whether or not it makes sense... just nice to see that there are others who are having similar ideas to me.
Great blog by the way- I don't read blogs but I'm hooked on yours. Thanks for expressing your opinions and not being ashamed of who your children are as so many parents are. Let's celebrate their achievements as individuals!
I'm also here via the AOL article. LOVED IT.
I have two sons, the younger is autistic spectrum and the older has not been diagnosed, but exhibits some characteristics of Aspergers. (I'll write here of our struggles with our younger child, as it's been a different journey with our older child.) I can't really speak for people with very severely autistic children -- I recognize that they may deal with different challenges than I deal with. But I can speak for myself:
When the diagnosis process began, I spent a year swimming in panic (and depression) because so much of the information I found on autism -- in an effort to describe how terrible the disease is -- seemed to describe people with autism as hollow or devoid of potential. A wonderful child whose potential was stolen from them by a terrible disease. Autism seemed almost like a death sentence, a parent's worst nightmare. In our case, our child had "red flags" and "only time would tell." So, of course, I analyzed every little thing he did, looking for signs he was a) normal or b) autistic. Was he going to be okay or was he cursed with empty non-person-hood?
Not to say we were getting the hyper-negative "non-person" perception from the professionals we worked with -- they gave sound advice, like integration with "normal" peers and speech therapy and social, social, social interaction. But what we weren't getting, even from them, was the success stories. I suspect they are afraid to give anyone success stories, because they don't want to give parents an out to ignore the problem and think that their child will "just grow out of it." They want to make sure you take action and take action NOW. Which is a good thing. But we WERE taking action, and not hearing success stories was causing me to became so fearful it was a struggle to overcome panic. And panic doesn't exactly make you a BETTER mother.
It wasn't until I met a woman with an adult autistic child (in college, working, happy) who told me "even if I could, I wouldn't take away his autism, it's part of who he is" that I realized something. My kid could be great even if he WAS firmly on the spectrum. It was a revelation. I started focusing on the positive while trying to overcome the negatives. I've continued with that mindset and it's helped ME be a better mom (and better help him reach his potential). Sure, there are more challenges and a lot more work to raising him, but there are also incredible rewards. And he IS awesome. Not only is he not a horror story, he's an absolute joy to our lives.
I know autism can be horrible. But it's not always, and as the number of people diagnosed every year increase I wish for increased awareness that there are truly wonderful and remarkable people in the world who are autistic.
Anyway, I really loved reading your AOL story.
--mini
Hi, I also found your blog via the AOL article and just wanted to say that your blog is like a breath of fresh air. Thank you for sharing your family's wonderful life with us! Best to you all.
Mom26Children,
I loved the interview on AOL. I graduate in May from college and am majoring in SPED Comprehensive/Moderate. I've even thought about getting my masters ini ABA therapy. You are truly an inspiration to all parents of children with autism. Keep challenging your children day to day.
Michael
Sharon --
My son is in an eating therapy group that has done wonders for him. Eating was his most difficult sensory issue until we started the therapy. It's all about remapping how the brain things about food. Maybe you can ask your grandson's physician if there are any local occupational therapy programs for kids with eating issues. (We're using the Sequential Oral Sensory (SOS) approach developed by Dr. Kay Toomey, Ph.D.)
--mini
Hello. I'm a new follower, thanks to my husband. I'm the proud mother of 4, and my middle two have autism. I, too, believe that ours is genetic since my middle two have different fathers. I agree with much of what you have said, and also do not do anything out of the ordinary for my autistic children. Both of mine are high functioning, but my 6 year old is still pretty rough as yet. Thank you for not leaving me feel alone in a sea of people trying to cure, fix, or change brilliant, unique children.
LOVED your interview! I'm the mom of two SPD kiddos. Thanks you for raising such awesome kids! Kudos to you!
Hallelujah! Loved the interview and the great attitude you have. I learned alot. Give each of those kids a big kiss from me(if they will have it!) and a big hug to both you and your husband. God bless you!
Wow! I just saw the interview on AOL and immediately called up my Aunt. Her 10 year old son has autism (I don't know if it's moderate or severe.. but he can't speak; however he can repeat words and can associate words with different things)
She has him on a gluten-free diet and gives him Vitamin B-12 shots. I do know he goes to music therapy and she's going to get him a speech therapist. I was hoping I could contact you through e-mail because she has tons of questions to ask! (Mine is safarigurl93@yahoo.com) I'd love to hear from you :)
Hi, I just read the article on AOL, and I want to say it helped me a lot. I have a son that was diagnosed with Asperger's when he was 6. He's now 13. When he was first diagnosed, I was a little dismayed, but nothing compared to family and friends when they found out. It was like he had a death sentence or something. People climbed out of the woodwork to offer condolences(?!), advice (diet and otherwise), help - all well meaning but completely over the top. My own mother had little do with him because of "you know, his condition." Everyone seemed to feel it meant some long ordeal of invasive therapy and treatments.
The fact is, other than rethinking how I communicate things to him, I never changed a thing that I was doing to raise him. I never wanted to "cure" him. He is the sweetest child I have ever known, but he is still expected to behave. I simply have to tell him how to behave a little differently than I did my daughter. (She was diagnosed with an auditory processing disorder, which brought about a different reaction - I was expected never to discipline her.) I have to be specific. Tasks are broken down instead of lumping it all together. He also went to a great school that was willing to work with this. Both he and my daughter received some helpful therapy at school for their respective conditions, and I'v done my share of research on how best to deal with them, and I will say it has been challenging, but doable.
Everytime I mention that he has Asperger's, somebody immediately tries to tell me a diet, or a doctor, or a technique they heard of, which then leads to looks of disbelief when I tell them I'm doing ok they way I am. This has left me wondering if I let him down somehow, even though he is now doing so well, that the most anybody would suspect is that he's an awkward teenager. He still has challenges, but the aspects of Asperger's that he still displays are nothing but positive. His mechanical aptitude is off the chart. What some people call obsessive, I call "stick-to-it-ness" meaning he always gets things done. He's not a social butterfly, but he's loyal to his small circle of friends. I see nothing but positive things for him in the future.
When people cluck at me out of pity, I want to scream. I think I'm a dang lucky parent to have such a unique kid, and I'm grateful to have him. From what I read, it seems you have raised some great kids, and I don't feel so alone, so thank you for being so open about your family.
I want to commend you on your attitude in raising yours kids.
You have never told your kids they can't.
Never thought they couldn't.
Never listened when a doctor has said he/she can't or won't be able to do... and then kept your kids from trying to do just that abd so much more.
Yes autism can get better with work and time not all this medical mumbo jumbo BS.
Granted there are some things medically we all need in life medically curing autism? ok right. Wrong. You and those 5 wonders of yours have proven that.
Thank you for proving to me yet again at a time when i needed it that my mothers teaching of you can do it if you:
Try, ask for help when you need it, work hard, don't let the view of the world or others tell you you can't and beleive that you can succeed in whatever you endeaver to do, for you my dear, can reach the stars, don't ever think otherwise.
I wish more people would beleive the above for themselves and teach it to their kids.
Again great work with those kids, i would love to meet them all.
SSRaye05@aol.com I'm on facebook.
I do not have a child with autism, but I know people who do and I have done research on autism for massage school. I almost got a job at a school for kids with autism. I was floored by the approach they had with the kids. They used speech therapy and social skills with the kids, but the new things that they wanted to do was massage, which is so great for the kids. It helps relax them and help them feel comfortable around people. I love the way Jeanette is raising her children. They are her children, not lab rats.
Thank you for your great interview, and please be a media whore!! We need great parents like you who believe in their children and don't subject them to barbaric treatments to make them more acceptable to an unknown standard. I am a Family Doc that is hearing impaired and was never treated any different from my siblings and never made to feel inferior to anyone else, all children should be given the opportunity to excel to their ability! Oh, and because I am a family doc, I really appreciate your opinion on the "medical" theories of autism, thanks for debunking them.
I just read your interview on AOL and if I could I would hug you. There aren't too many great parents on the world, but I believe you may have surpassed them all. Keep up the fighting spirit, and I hope you and your children continue to be the happy,healthy,image individuals you and they are.
Wanted to say thanks for being open, honest and DOWN TO EARTH - I teach students with autism and I will tell you if more parents had your attitude, things would be better!!!
I believe the same as you. Every child is different but, they are born autistic. I see a difference with diet in my son but, I follow the same diet and I feel better too! I have made my own therapies and schooling and no matter what...he is the joy in my life. GOOD FOR YOU!!!!
jo,
you are right on. it does take hard work, on our part and the kid's. i was told my pdd/nos son was never going to talk or understand anything i said. he is now attending a local university, on the deans list. it happened bit by bit... it is amazing what our kids can do, and how many lives they can enlighten while doing it.
eliza
I am the mother of a 17 year old son who has Cerebral Palsy and Aspergers Syndrome. He uses a power wheelchair to get around these days because 5 years ago a surgery damaged the nerves in his legs. He is my ray of sunshine. Everyone that meets him loves him. I can't imagine life without his constant cheerful personality. He is the sweetest most amazing person I have ever met. He doesn't have a mean bone in his body and he makes everyone happy just being around him. The world is a much brighter place because of him and I'm so happy that I have been given the responsibility and complete joy of being his mother. He was diagnosed with Cerebral Palsy at 17 months of age. After being born at 26 1/2 weeks gestation he was a severely ill premie. His lowest weight was 1 lb 12 oz. I was told he would eventually "catch up" but finally I found a doctor who diagnosed him with Cerebral Palsy. He was not diagnosed with Aspergers Syndrome until a year ago when a man fitting him for a new wheelchair commented that Christopher was just like his own son. He encouraged me to research Asperger's because at the time I had never heard of it and none of the specialist we have seen over the years mentioned it as a possibility. He has since been diagnosed and I can't believe how much the research has explained so much about his personality. The diagnoses did not change who he is but it has helped me be a better helper for him. I wouldn't change a thing about Christopher, except I do wish physical life was easier for him. I miss the days when he could walk with a walker and canes with relative ease. I'm in college now and I am a biology major. We are discussing genetics right now and how birth defects and inherited diseases can be found early on in pregnancy so parents can choose whether to complete or terminate a pregnancy involving an unborn child with special needs. I just want to scream and say you are taking away the chance to know and love this special child who even if their life is different it doesn't mean their life will be bad and I have never met a special needs child who was wanted less than a child born without special needs. My son has been the biggest blessing in my life. Through him I have met so many wonderful children who all have special needs but I always say that, although they may have greater struggles than most they are also given a little something extra from God. They are given such wonderful spirits and a resilience that is boundless. What is sad to me is that although people are usually kind to children with special needs, once they become adults they tend to become a lost part of society. This is the saddest part for me. Please take time to speak to adults with special needs. Remember that they are someones precious sons and daughters. A smile goes a long way to make a good day.
Kelly
This is one of the first articles I've read about autism that even resembles my experience growing up with an autistic brother.
When the doctor told my parents about his diagnosis, he opened with the words, "Have you seen the movie Rainman?" They were told that when he got too big to handle as a teenager, he would probably have to be institutionalized. Today, my brother has graduated from high school, gone to college, held a full time job, and lived on his own. He isn't very social, but the only way a stranger would know that he's autistic and not just quiet would be if they were to ask. And most don't.
His progress wasn't the result of some crazy medical gauntlet, but a lot of hard work and effort. It's nice to see other autistic kids on that same trajectory. I wish you and your kids the best of luck!
My 11 year old is autistic, and he's had problems since birth. I never thought the vaccinations had anything to do with his autism since he had problems long before he got vaccinations.
I get a lot of criticism too because of the unconventional way I raise him, but the doctors said he'd never talk and he would always bang his head and the most he would learn was life skills, tying his shoes and putting on a shirt. But I come from stubborn Irish/Mexican heritage and I don't listen to anyone before I try something myself.
For the first time ever, my child is on grade level. The child who the doctors said would never talk never shuts up now. I declined medication and forget reading all those books, I decided I'd spend that time figuring out what is best for my child.
He used to scream all the way through the store but I kept taking him. I'd tell him he had to maintain control in public but could let go at home, because mama forgives but society don't.
I'm glad to have come across your blog. God bless you and maybe someday people will realize autism is not a horrible disorder but it's just same name given to a child who happens to do things a little differently than others.
What a great article. Hats off to you. I amt he mother of 4 children, all on the autism spectrum. We accepted the diagnosis, then followed the advice of our pediatrician, and had genetic testing done. I am the carrier of the Fragile X gene.
This syndrome (Fragile X Syndrome) is dramatically underdiagnosed, and there is a lot of research being done to discover how this genetic disorder causes autism. This research could impact so many other neurologic problems, I pray the funding for this continues.
Would I change my children? No. Would I do anything I could to make their lives a little easier? Absolutely.
Early intervention, love and patience is the best thing for our children. People need to realize their truly are scientific causes, and testing our children is very important.
God Bless You and your wonderful family! Thanks for sharing this with the mass media, (I read it on AOL news). God gave you those children for a reason and it is refreshing to hear that you are a proud mama who stays at home and does the best she can for her kids. I have a mildly autistic son that has never been "treated" by anyone other than myself and my husband (his dad). There was no way I was going to throw him to the wolves in the medical profession! We homeschool all our children and the autistic one is just as "adjusted" as the other ones. So i say, AMEN SISTER! And keep up the good work!
This made me smile. It's awesome that you love your kids so much. My cousin has Asbergers and my uncle has fought from day one for her to have her in regular classes. You all are amazing.
You're an extremely selfish person. After your second child with autsim you should have stopped. Why would you bring these children into the world to suffer with this disease? If I could wish for my foster brothers to not have it, I would immediately. You can not give each autistic child the equal amount of attention and love with that many of them.
After the second autistic child you should have adopted or fostered instead of bringing more children with autism into this world.
Vaccines don't cause autism you fool.
THANK YOU!!!!!
My 13 year old daughter is autistic. We knew something was 'different' with her from almost the beginning. She was actually diagnosed at 3 years of age. I was really upset - the doctor that diagnosed her responded to my question of "Where do we go from here?" with "Nowhere. She is always going to have this."
That just didn't work for me. At all. Nope. Our schools have been terrific; she is now in 7th grade, in REGULAR classes doing the same cirriculum as every other "normal" kid and expected to keep up with the homework and tests. She has some support but the girl is an honor roll student.
Some of the kids who are in her school are also autistic and not doing nearly as well - in talking to the teachers (you realllly get to know the teachers) I've found that many parents excuse bad behavior, inappropriate behavior and don't place any expectations on their kids BECAUSE they are autistic. As a parent I know my child's capabilities and I would be failing her if I let her 'slide'.
Socially - she's beginning to make some real progress - we've had to do a lot more to teach her socially acceptable behavior and how to 'protect' herself. (She's also kind of - clueless - for lack of a better word - about other people's intentions.) But we have no doubt she will be a functioning member of society.
All parents should have your attitude. I don't involved with many 'autistic' groups. Too much looking for answers. No two kids are exactly alike - what works for one amy not work for another - but a parent should never give up. If I did my daughter would still be sitting in a corner rocking and making strange noises. She'd be walking out of the house at all hours - unable or unwilling to answer us when we are calling to her. She'd never have learned how to tie her shoe or say Hello, Please or Thank you. Most people would never know the child she was is the young lady she has become. And if we'd listened to that doctor and given up - she never would have become who she is today. And she just keeps amazing us and making us proud.
Thanks - I can say all of that and not worry that I'm going to make some other parent mad because my kid is thriving and they're still worried about why their kid is autistic.
My oldest of 5 has severe autism. I totally agree that it is primarily genetic. I can concede that in some instances there may be an environmental trigger to make the autism more severe. We have given shots to all our children. Not extra shots such as flu shot. My child has SEVERE autism and is non-verbal. He uses pictures to communicate with us along with showing us what he wants. We did therapy in the begining but have not done any therapy outside of the minimal amount he gets at school. It is not financially feasible with 4 other kids. My husband is an engineer and has a good job. This is the point I loved about your article -
"Love the child you have and where he is."
My child may never be verbal and will most likely be dependent on us for life but that's OK!!!! We celebrate each success- this week:
1. Opening a juice box and putting the straw in it by himself
2. Lifting the lid of the potty to let me know he needed to go to the bathroom after his bath.
Not every child with autism will be independent but they can all benefit from the love of others.
I don't care if my child talks, is independent or learns to read -- I do care that he knows he is loved, enjoys life and that I love him and have a special relationship with him. That is the most important success!
Thanks for a positive article.
Great article. I hope that if I am ever chosen to be the mother of an Autistic child I can have as much strength as you. Congrats on the graduate!
Reading your interview was like listening to my own story.
In 1995, our son Raymond was dx @ 18 months with autism.
Non Verbal, aggressive, hyper, etc. you know the drill. I've always believed in hard work. You know .. like using scouring powder as opposed to those foo foo spray and wipe foaming cleansers for the shower that don't work worth a poop.
I have sat in many a IEP, Doctors Appt. Behavior Mod sessions, etc. and heard "He should be on ... blah blah blah," or he should be in Special Ed, or whatever they felt they needed to 'school' me on regarding what they felt was best for MY son. I always kept calm and educated myself on Raymond's behalf. I tape recorded IEPs, conversations, and documented everything! Talk about a lot of work! It got to the point where the school district had their lawyers as a part of the IEP "Team." Like you, I knew he HAD to learn to function within society. When he entered Kindergarten, I mainstreamed him .. I was the sole supporter of this idea. I've also watched "Autism Experts" bully parents and cared less if these parents had to sell their home to fund a summer school program that promised them everything under the sun. It was sickening to say the least.
Let's move ahead to now.
Raymond just finished his 2nd High School football season. He is a middle linebacker. He trains all year long, what I mean by that is .. he has a personal trainer that is brutal, 3x a week. He trains in the off season with his school 5x a week. He also travels to meet with a specialized long snapping trainer and attends a yearly training camp where he is nationally ranked.
Like your 'severely' autistic daughter, it is to Raymond's credit that he molded his small frame into a 5'9" 200 lb. athletic machine! He is absolutely independent, kind, loving and just the sweetest boy! Put a helmet and uniform on him and his demeanor changes instantly! He prepares mentally for games. You can spot him very easily from the bleachers, he is the only player pacing back and forth .. chomping @ the bit to get on the field! Am I proud of Raymond. Hell yes I am. You won't hear me cheering or screaming, but because of his struggle and journey, I carry tissue and discreetly wipe away my tears of joy.
"I don't know what caused his Autism, I just knew he needed help." It was really that simple.
I love my son.
I believe any mother that tells me they know it was the vaccine that caused the Autism, I also believe mothers who say it didn't. Who's right? Probably both.
Raymond's hard work is what worked for him. :)
Good for you! I only found this blog by reading the AOL Health interview on my portal today, but I so very much wish I had found this blog and you and your wonderful family much earlier! Let me say that I am the parent of a 22-year-old who was at various times in childhood diagnosed as add/adhd and finally Asperger's. Although I was very concerned with her rocking behavior when she was a toddler, my late husband and I initially accepted the ADD/ADHD diagnosis and allowed the doctor to prescribe Ritalin for her at age 6, a totally horrible mistake. We weaned her off from Ritalin when she was a few years older and I had her in the emergency room with symptoms completely related to Ritalin toxicity. Thank heavens she survived it. The doctors then changed it to Asperger's, and that and the autism spectrum made a lot more sense. However, my late husband and I took our cue from what happened with the Ritalin and we refused any chemical treatments or drastic dietary treatments. We had an aide for Ana's protection from the bullying students, but mostly it was our interacting with her and supporting her and her own very hard struggle to become independent that has made her the 22-year-old college student living away from home 8 months of the year that she is today. I wholeheartedly agree with your views!
Incredible interview. Obviously you are an awesome mom with a wonderful attitude. Best to you and your family. :)
Is the acting out norrmal for a atistic child who behaves in school my 8 yr old seems to fall apart at home with temper throwing and crying.
I am so glad to have read your interview. I believe the same as you do and it is hard to have family telling me how much I need to change to a DAN doctor etc when my 2 yr old son has no signs of autism and my 3 yr old is autistic. Her name is Kaytlin also :) She is in developmental preschool and is doing sooo well being around the other children 4 of which are not autistic. I will be following your blog now, feel free to check out mine about Kayt. Big hugs momma and wait to go on being so strong!!
I have a 13 yo son w/Asperger's. It's so true-unless someone has walked a mile in your shoes, they have no concept. Through the years,I have had all sorts of input, advice & help, from experts to strangers in the grocery store. Some of it was helpful, some of it was terrible. As a single parent for most of that time, I frequently ran into two schools of thought; when my son was doing well or being succesful, I got the message that I was an over-concerned mom & there was nothing "wrong" with my son. This is partly true, because I don't see him as broken, just different & in need of learning things to help him cope in a world not particularily well suited to him. When things were difficult or he was having a hard time, I often got the opposite message-you know, "he just needs discipline" etc. Through it all, I have had to make choices and decisions that were frequently viewed with skepticism or disapproval, especially when they were less than conventional. But watching my son grow has taught me so much, and I have benefitted in ways I couldn't have imagined. After seeing the way his mind works and the challenges he has faced, I realized my father was likely on the autism spectrum as well, and I can see how not having understanding of his differences made life such a challenge for him. I have also identified many of my own private idiosyncracies as autism traits myself, leading me to the conclusion that it is really about how the brain works, and how it is "hard wired".
As an educator & a parent, I am less convinced that there is some trigger or evil culprit that has given rise to the current levels of autism. Rather, I believe it is likely a combination of two things: one would be the greater recognition and understanding of the autism spectrum, leading to greater numbers of diagnosis. The second, given our growing understanding of epigenetics (environmental factors that influence the expression of genes) and the transactional effects of environment (both social and physical) on brain development point to something of a more systemic shift in our society, perhaps such as our growing reliance on technology and media, which may over-stimulate the already sensitive visual processing tendicencies of the autistic brain while simultaneously reducing the face to face social context of information exchange and plain old human interaction. Whatever the case, it is unlikely to be something that is an easy fix. Rather than looking for a "cure" per sae, I agree with you-we need to focus on ways to enable our children to be strong, happy and functional in the world as we know it. And it doesn't hurt to question society's ability to accept the unconventional person-you know, the one outside the norm! I am excited to see what my son will do with his life-I know whatever it is, it won't be mediocre!
Congratulations on your daughter's upcoming graduation & kudos to your whole family!
From the perspective of an almost 20 year old pre-med student, I would like to say thank you. I would say it a million times over if I could, but I think my fingers might fall off. :) As an aspie, I can identify with a lot of the struggles and hurdles you mentioned in that interview. I was a late diagnosis because my parents never sought help for my childhood behavioral problems. They were always hidden away and pushed under the rug. If I started to have a meltdown, I was very quickly hidden away and uselessly threatened with whatever punishment could be thought up. I still struggle with adapting to a neurotypical society, but I've found that what's almost more challenging is trying to deal with the people who think that I'm sick, that I have something wrong with my brain, rather than simply something different about my brain. I agree with you wholeheartedly in your perspective that the autism spectrum disorders are not /dis/orders at all. In high school I had no problems communicating with the autistic children in our special education department. I know that I am much lighter on the spectrum than your children, but I wanted to share a little bit of my story with you and to let you know that you have one more person behind you in your efforts. I'll definitely have to keep an eye on your blog in the future. :)
I was inspired to read your article. As a mother of a 2 year old with ASD I am grateful to hear your story. We work very hard with our son and hope and pray for him everyday. We have learned that he is perfect just as he is and are blessed to have been given him.
Thank you for giving me more hope.
Brandy
Enjoyed your article, you sound like a fantastic devoted mother. Certainly God knew what he was doing....he never gives us more than we can carry...and you've proven you can carry alot.
Great article! What a great family!
I love This article
Bryan Skoff
After reading the AOL interview I have read a lot of the posts on your blog. I would love to see the Extreme Makeover Home Edition episode and "meet" your family. Can you help me out and tell me where to find it? Your family and your story have made me feel really wonderful about the decitions I have made and the road I have decided to take with my daughter. THANK YOU and thanks to your amazing kids!!! You are truly blessed :).
Paula
I liked your interview even if I don't agree with you completely. I have autism and my oldest son has autism and some biomedical works for us. I am not out to cure myself or my son only to make us healthier, which in turn helps our thought process and behavior. I am unsure that I can stand behind much of what is passed around in both the neurodiversity circles and the biomedical circles. I don't feel like I am injured or my son is injured, but I also don't feel like there is nothing wrong with me and the rest of the world needs to adjust to my ways. Oh and by the way we don't do cured meats, LOL. They make my son mean and they are just not healthy. My son is 7 years old and mostly non-verbal, but very well behaved and doing pretty well in school, although he is in an autism unit where he can get the individualized attention he thrives on, he is grade level on most things. This is from hard work on my part and the part of his school team. Expensive behavioral therapies are unavailable to most of us and I do think my son would be farther in his journey to independence if it was available. I also have another child with different special needs and I want to change our culture to be more disability friendly for both of my children's sakes, while at the same time preparing my children for the sometimes cruel world that they will face all too soon.
As the aunt of an autistic child it is hard for me to sit back and watch all of these 'helpful' treatments they make my niece endure. Sitting for hours in a personal hyperbaric chamber (which I think is down right dangerous), rubbing creams on her, making her eat food that I would not even feed an animal. I applaud your article, even though I was yelled at for forwarding it to them - you make me feel not so guilty about immunizing my own children.
I wanted to say I enjoyed your interview. You did a fabulous job answering the questions.
Ok, as always I am late to the party, but I'm still going to chime in.
I wish parents of kids with ASD could just be supportive of each other, regardless of which course of treatment/action parents select for their children. And by support I mean just agree that at times it can be tough to have a kid with ASD not lecture other parents why they should/shouldn't do something because that's not the way that particular parent would. What works for one child might not work for another. Don't they say, "If you've met one person with autism you've met one person with autism?" It can be challenging enough raising a kid on the spectrum. You're never fully confident if you're making the best decisions because this journey with your child is honestly uncharted territory. You're trying to sort out all of the information presented to you by doctors and various specialists while maintaining that the only true expert with regard to ASD and your child is you. And then if you have "neuro-typical" children you're also trying to make sure they feel they too are receiving enough attention. We love our ASD kids to pieces but let's face it, it can be overwhelming. We're all doing the best we can in each particular moment.
All of our paths are different but I believe we have the same goal - the best for our children regardless of whether they are on the spectrum or not. I want my autistic child to be able to function as best he can in this neurotypical world so it's not a scary place for him.
You are the woman I've been looking for! I just caught this interview by chance from a facebook post. I've searched the internet far and wide for your perspective. I love my perfect grandson just as he is and have said he isn't broken so he doesn't need to be fixed, he isn't sick so he doesn't need to be healed. He is however... AWESOME. And now in my book... so are you!
Jeanette, you are SO totally on my wavelength! My dad, myself, and my 2 kids are all on the autism spectrum (and we're pretty sure there are others in the family, too) and we never bought the vaccine-environmental-parenting "cause" BS either. To be honest... after reading all about the experiences of other parents with spectrum kids, dealing with IEPs and schools and stigma and pressure to do this or that treatment, I'm really glad that I escaped all of that. I firmly believe the reason my kids have done so well is because no one ever told them they couldn't. All the best to you and AWESOME blog!
Well, I still love your blog. Your positive emotion is an inspiration to all who would accept it as such.
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