There are some great websites out there! Here are a few of my favorites: (not all!)
Forum:
Raising Autism
Facts:
Canadian Autism Intervention Research Network
Autism Science Foundation
Science Rocks
Facts with Flair:
StopJenny
RespectfulInsolence
Blogs:
Countering Age Of Autism (Here you can follow rebuttals that AoA censored, and post your own)
Autism Herd
Autism Nostrum
A view from the boundaries
Surviving Motherhood
A touch of Alyricism
Gonzo
Confutata
Hating Autism Response
driving mad men crazy
Monday
Saturday
To all the 'my life is a tragedy cuz my child has autism' bloggers:
It is completely natural and human to vent. I've yet to meet someone that does not need, upon occasion, to say negative things. So why do I strongly disagree with parents of autistics blogging such negative posts about their parenting experience?
Time and a Place
There is a time and a place for all things. A public online blog is not the time, nor the place. Not to say that one should never make a negative comment online, or share the heartbreak and reach out to others-but in my opinion it is uncouth to post a purely negative exaggerated and dramatic look that is so completely one sided.
Venting online, where you are posting a one sided angry bitter rant about parenting your child is irresponsible and misleading. Parents who have just discovered their child has autism are searching the internet for answers.
This is what you want them to see? Blog after blog of 'my life is over, my child is dead, better if he/she had cancer!'? Where is the realism? Where is the honesty? As a parent yourself is this what you feel is supportive?
What about the public awareness aspect? As a parent we have the moral obligation to advocate for our children (be they autistic or not). How can you feel good blogging such an out of proportion look at parenting an autistic, knowing that you are spreading that poison-creating a stereotype that is incorrect, damaging and painful to the autistic persons in our societies?
The real tragedy is that people are so bombarded with these 'woe is me' anecdotes, blogs, articles, books, tv shows etc, that it has become to be believed as truth. Not just a truth, but THE TRUTH. People are buying into the big lie that autistics are less, that they are shadows, emotionless, unable to empathise, unable to learn, develop, nurture or in any way find happiness. And a Lie it certainly is.
Autism does not equal violence. It does not equal worthless. It is not worse than cancer nor is it equal to the halocaust. Being autistic does not mean a lack of emotion, empathy, or happiness. Raising an autistic is not a tragedy. It is parenting.
The Morals of Parenting
Regardless of what challenges your child faces, regardless of their disabilities or lack of such, diagnosis or lack of such, personality, shape, size, colour, etc-regardless there are some things that parents with morals do and do not do.
Moral parents do not abuse their children. Children, all children, depend on adults to protect them, support them and help them survive. Knowing this, moral parents do not abuse this dependance.
(Physical: inflicting physical harm on a child's body) Moral parents do not shake, choke, bite, kick, burn, shock, restrain, handle roughly or strike a child.
(Emotional: any act that can harm a child's sense of worth.) Moral parents do not isolate their child, intimidate, terrorize, threaten, shout, exploit and make unreasonable demands. They do not reject or humiliate their child.
(neglect: not giving the child what they need to develop) Moral parents do not neglect their child. Neglect is when a parent:
-does not make the child feel loved, wanted, safe and worthy
-does not take the child to a doctor or take personal care of themselves
-does not intervene when the child is at risk of harm
-does deny the child food, clothing, shelter when the parent is able finanically to provide such
-does deny their child an education
-does leave the child alone at home too often.
How is this attitude of 'my child is a tragedy' not abusive?
Will your child ever find out you said such things?
Of course they will. You make it public, they will find out. Perhaps they will read it themselves, be told by a family member-it matters not. They will learn that those words you 'vented' on your blog represents how you feel about them. Your friends, co-workers, NT children, family, neighbours will also hear about it. They will hear on the news, on TV and the radio, they will read about it online. How will you feel then, when your angry and bitter words are not just some online vent, but in front of all your aquaintances for judgement?
If you are very lucky, they won't find those very words. But they will find someone elses toxic post. They will wonder if you felt that way.
Pathetic is what it is, for a parent to be so focused on their own bitterness that they disregard the damage their words may cause. Spewing of such poison is abusive.
Moral parents love their child, unconditionally. They teach their child to cope with the world the way it is, while advocating on their child's behalf in hopes that the world will be a better place.
Moral parents learn about their child, their child's interests and strengths so that they can provide an envioronment that will maximize their child's potential.
Moral parents encourage their child to challenge his/herself so that they will strengthen their weaknesses.
Moral parents do not give up. They do not insist their child follows a certain path-but rather guide their child to make moral decisions, guide their child to learn and grow. Guide, not insist and force.
Parenting-the good and the bad
Reading all those angry blogs I started to think about what I personally have done differently with my youngest (who is autistic).
I changed diapers for a lot longer than I did for the older two and cleaned up more urine messes.
Is that tragic?
I sewed more for my youngest as the seams on cuffs of shirts and jackets drive him wild.
Is that tragic?
I had to pay more attention, to learn his body language and to read his facial expressions. (he did not talk till just before he started school).
Is that tragic?
I had to learn, in depth about the following subjects:
Trains, steam engines, bridges, rabbits, pokeman, yughio, electricity, generators, life cycle of plants, bees, lego, magnets, cartoon drawing, castles and medieval times, psychology in general, medical terms, cognition, autism, pragmatics, dsylexia, sign language, french, bug catching and keeping and all the facts of each bug discovered, environmental sciences, robotics, how to raise crickets, the specific details of reproduction, the specific details of the circulatory system and digestive system..... this list goes on.
Is learning tragic?
I had to be more aware of my language and what phrases triggered irritation from my child.
Is that tragic?
I have had more doctor appointments, therapists etc.
is that tragic?
The things I had already experienced from parenting my other children that are often touted as being an experience that only parents of autistics could understand:
-Cleaning up poo art. My oldest loved to decorate his crib. So I already had this covered.
-Fussy eating? HA! all my children are picky eaters, with not two of them following the same set of food dislikes and likes.
-Tempertantrums Yes, my youngest had more of them, but my oldest also threw fits. Lots of experience with this, plus I myself threw major temper tantrums as a child.
-running away and into danger. My oldest was on a halter till he was 5-he never would look where he went and would dart off at any time. My middle child also had to be watched. She closed her eyes when she ran. (try that for scary as hell for a mom). My youngest-well he and his sister are a year apart, so she tattled if he wandered. He also wore a halter.
-strangers making judgemenatl comments and looks. Hell yes, my oldest learned chinese when he was two and barely speaking english. He is so blonde his hair looked white. He was also very loud. And, what parent has not had someone be judgemental? long day running around, kids are fussing in line-pfft, happens with all kids. So my youngest does more obvious things. I simply don't care. I don't tend to explain either. (I do to my children, but not to the rude adult behind me that suggests they need punishment.
-conformity problems. Ummm, nope! All three of my children have issues conforming. None of my children were raised to follow blindly. All three have leadership qualities.
-Fighting the school system. I may have mentioned a few times that I have three children? I have been fighting the school system and it's insistance on conformity since my oldest hit grade three. Fighting at this level is new- now I fight for resources, accomodation, training for his teachers, social groups etc. With my oldest it was fighting for his right to use the bathroom when he needed (he still can't go 2 hours without a pee break), fighting for solid policies on bullying and violence (he would defend whoever was being bullied). With my daughter it was fighting for bullying programs and awareness (when she was being the bully, btw), fighting for resources to teach her more postiive leadership skills in a peer setting, advocating for more extra curricular programs that were not sports. (I live in hockey land), and fighting the school board on a resource that was innapropriate (a book premoting rascism and fear).
-health issues. My oldest is allergic to citrus. My middle child has seriasus? whatever is called when you ahve that flakey scalp. As a newborn she was colicky, her diaper rash was so bad we used cortozone cream. She needs glasses, and braces and can't eat beef or pork (makes her feel ill) My youngest has sinus issues, abnormal bowel movements, glasses and slurrs. So what? I have asthma, allergies, migraines and damage in my shoulder. Part of life.
So yes, I do have a problem with the crying and wailling and bitterness. As a parent you just have to suck it up, fight for resources, information and advocate for your children.
That's called responsibility.
That's called nurturing.
In my book, it's also called rewarding.
Hugs and Laughter
Time and a Place
There is a time and a place for all things. A public online blog is not the time, nor the place. Not to say that one should never make a negative comment online, or share the heartbreak and reach out to others-but in my opinion it is uncouth to post a purely negative exaggerated and dramatic look that is so completely one sided.
Venting online, where you are posting a one sided angry bitter rant about parenting your child is irresponsible and misleading. Parents who have just discovered their child has autism are searching the internet for answers.
This is what you want them to see? Blog after blog of 'my life is over, my child is dead, better if he/she had cancer!'? Where is the realism? Where is the honesty? As a parent yourself is this what you feel is supportive?
What about the public awareness aspect? As a parent we have the moral obligation to advocate for our children (be they autistic or not). How can you feel good blogging such an out of proportion look at parenting an autistic, knowing that you are spreading that poison-creating a stereotype that is incorrect, damaging and painful to the autistic persons in our societies?
The real tragedy is that people are so bombarded with these 'woe is me' anecdotes, blogs, articles, books, tv shows etc, that it has become to be believed as truth. Not just a truth, but THE TRUTH. People are buying into the big lie that autistics are less, that they are shadows, emotionless, unable to empathise, unable to learn, develop, nurture or in any way find happiness. And a Lie it certainly is.
Autism does not equal violence. It does not equal worthless. It is not worse than cancer nor is it equal to the halocaust. Being autistic does not mean a lack of emotion, empathy, or happiness. Raising an autistic is not a tragedy. It is parenting.
The Morals of Parenting
Regardless of what challenges your child faces, regardless of their disabilities or lack of such, diagnosis or lack of such, personality, shape, size, colour, etc-regardless there are some things that parents with morals do and do not do.
Moral parents do not abuse their children. Children, all children, depend on adults to protect them, support them and help them survive. Knowing this, moral parents do not abuse this dependance.
(Physical: inflicting physical harm on a child's body) Moral parents do not shake, choke, bite, kick, burn, shock, restrain, handle roughly or strike a child.
(Emotional: any act that can harm a child's sense of worth.) Moral parents do not isolate their child, intimidate, terrorize, threaten, shout, exploit and make unreasonable demands. They do not reject or humiliate their child.
(neglect: not giving the child what they need to develop) Moral parents do not neglect their child. Neglect is when a parent:
-does not make the child feel loved, wanted, safe and worthy
-does not take the child to a doctor or take personal care of themselves
-does not intervene when the child is at risk of harm
-does deny the child food, clothing, shelter when the parent is able finanically to provide such
-does deny their child an education
-does leave the child alone at home too often.
How is this attitude of 'my child is a tragedy' not abusive?
Will your child ever find out you said such things?
Of course they will. You make it public, they will find out. Perhaps they will read it themselves, be told by a family member-it matters not. They will learn that those words you 'vented' on your blog represents how you feel about them. Your friends, co-workers, NT children, family, neighbours will also hear about it. They will hear on the news, on TV and the radio, they will read about it online. How will you feel then, when your angry and bitter words are not just some online vent, but in front of all your aquaintances for judgement?
If you are very lucky, they won't find those very words. But they will find someone elses toxic post. They will wonder if you felt that way.
Pathetic is what it is, for a parent to be so focused on their own bitterness that they disregard the damage their words may cause. Spewing of such poison is abusive.
Moral parents love their child, unconditionally. They teach their child to cope with the world the way it is, while advocating on their child's behalf in hopes that the world will be a better place.
Moral parents learn about their child, their child's interests and strengths so that they can provide an envioronment that will maximize their child's potential.
Moral parents encourage their child to challenge his/herself so that they will strengthen their weaknesses.
Moral parents do not give up. They do not insist their child follows a certain path-but rather guide their child to make moral decisions, guide their child to learn and grow. Guide, not insist and force.
Parenting-the good and the bad
Reading all those angry blogs I started to think about what I personally have done differently with my youngest (who is autistic).
I changed diapers for a lot longer than I did for the older two and cleaned up more urine messes.
Is that tragic?
I sewed more for my youngest as the seams on cuffs of shirts and jackets drive him wild.
Is that tragic?
I had to pay more attention, to learn his body language and to read his facial expressions. (he did not talk till just before he started school).
Is that tragic?
I had to learn, in depth about the following subjects:
Trains, steam engines, bridges, rabbits, pokeman, yughio, electricity, generators, life cycle of plants, bees, lego, magnets, cartoon drawing, castles and medieval times, psychology in general, medical terms, cognition, autism, pragmatics, dsylexia, sign language, french, bug catching and keeping and all the facts of each bug discovered, environmental sciences, robotics, how to raise crickets, the specific details of reproduction, the specific details of the circulatory system and digestive system..... this list goes on.
Is learning tragic?
I had to be more aware of my language and what phrases triggered irritation from my child.
Is that tragic?
I have had more doctor appointments, therapists etc.
is that tragic?
The things I had already experienced from parenting my other children that are often touted as being an experience that only parents of autistics could understand:
-Cleaning up poo art. My oldest loved to decorate his crib. So I already had this covered.
-Fussy eating? HA! all my children are picky eaters, with not two of them following the same set of food dislikes and likes.
-Tempertantrums Yes, my youngest had more of them, but my oldest also threw fits. Lots of experience with this, plus I myself threw major temper tantrums as a child.
-running away and into danger. My oldest was on a halter till he was 5-he never would look where he went and would dart off at any time. My middle child also had to be watched. She closed her eyes when she ran. (try that for scary as hell for a mom). My youngest-well he and his sister are a year apart, so she tattled if he wandered. He also wore a halter.
-strangers making judgemenatl comments and looks. Hell yes, my oldest learned chinese when he was two and barely speaking english. He is so blonde his hair looked white. He was also very loud. And, what parent has not had someone be judgemental? long day running around, kids are fussing in line-pfft, happens with all kids. So my youngest does more obvious things. I simply don't care. I don't tend to explain either. (I do to my children, but not to the rude adult behind me that suggests they need punishment.
-conformity problems. Ummm, nope! All three of my children have issues conforming. None of my children were raised to follow blindly. All three have leadership qualities.
-Fighting the school system. I may have mentioned a few times that I have three children? I have been fighting the school system and it's insistance on conformity since my oldest hit grade three. Fighting at this level is new- now I fight for resources, accomodation, training for his teachers, social groups etc. With my oldest it was fighting for his right to use the bathroom when he needed (he still can't go 2 hours without a pee break), fighting for solid policies on bullying and violence (he would defend whoever was being bullied). With my daughter it was fighting for bullying programs and awareness (when she was being the bully, btw), fighting for resources to teach her more postiive leadership skills in a peer setting, advocating for more extra curricular programs that were not sports. (I live in hockey land), and fighting the school board on a resource that was innapropriate (a book premoting rascism and fear).
-health issues. My oldest is allergic to citrus. My middle child has seriasus? whatever is called when you ahve that flakey scalp. As a newborn she was colicky, her diaper rash was so bad we used cortozone cream. She needs glasses, and braces and can't eat beef or pork (makes her feel ill) My youngest has sinus issues, abnormal bowel movements, glasses and slurrs. So what? I have asthma, allergies, migraines and damage in my shoulder. Part of life.
So yes, I do have a problem with the crying and wailling and bitterness. As a parent you just have to suck it up, fight for resources, information and advocate for your children.
That's called responsibility.
That's called nurturing.
In my book, it's also called rewarding.
Hugs and Laughter
Monday
Guess I hit a nerve
It would seem, that to parents like Julie, offering hugs and laughter has in some way triggered a landslide of attacks.
That's ok Age of Bullshit, you have shown your colours.
Again.
Some interesting places to go to see how others see that recent bullshit post of Julie at AoA
Michele at http://www.adayinthelifemij.com/2009/07/get-over-yourself-parent-autism-is-not.html
Autism Nostrum at: http://autismnostrum.blogspot.com/2009/07/queen-for-day.html
Alexander at: http://aspieperspective.blogspot.com/2009/07/of-mothers-and-mothers.html
Louise at: http://evendumbasseshavefeelings.blogspot.com/2009/07/thelma-may-have-lost-her-glasses-but.html
Thelma at: http://evendumbasseshavefeelings.blogspot.com/2009/07/age-of-fools-wont-play-with-thelma.html ; http://evendumbasseshavefeelings.blogspot.com/2009/07/what-devil-is-ages-problem-lotta-fools.html
Kwombles http://counteringageofautism.blogspot.com/2009/07/why-not-let-it-on-when-im-going-to-put.html ; http://counteringageofautism.blogspot.com/2009/07/questions-and-ponderings-over-mercury.html
Gonzo's: http://gonzogalore.blogspot.com/
Jeanette's: http://survivingmotherhood-mom26children.blogspot.com/
Kathleen's: http://autismherd.blogspot.com/
That's ok Age of Bullshit, you have shown your colours.
Again.
Some interesting places to go to see how others see that recent bullshit post of Julie at AoA
Michele at http://www.adayinthelifemi
Autism Nostrum at: http://autismnostrum.blogs
Alexander at: http://aspieperspective.bl
Louise at: http://evendumbasseshavefe
Thelma at: http://evendumbasseshavefe
Kwombles http://counteringageofauti
Gonzo's: http://gonzogalore.blogspo
Jeanette's: http://survivingmotherhood
Kathleen's: http://autismherd.blogspot
Sunday
Julie's buddies attack with all the rage they can muster:
As to my angry commenter: Consider it corrected. I would like to point out, however, that the comments were left for julie. My most sincere apologies to all my readers for any inconvenience my mistake made. Too bad certain other people are unable to admit they make mistakes.
I did try posting polite responses, but they are being moderated. So I will continue here.
Hugs and laughter
And again:
TERESSA writes:
Angela-Lovethosekids
Your website-
http://autismvaccinefacts.webs.com/apps/links/
says it all. "Hugs and laughter" WILL NOT help my daughter talk from her vaccine injuries nor help Eve learn abstract thinking.
Your comment-
"It breaks my heart that you seem to feel there is not a single shining moment for your child, no loving fond memories for the baby book, no moments of joy, no pride in her accomplishments."
What a bunch of bullshit you posted. Here is your real motivation, not for Julie, Eve, or my daughter. Go off and spout your fake "caring" elsewhere:
some highlights from your website-
I have a few blogs.
http://notragedyhere.blogspot.com/
http://blogs.myspace.com/index.cfm?fuseaction=blog.ListAll&friendId=478998425
I am also on twitter as safemindsquack
Index The stop jenny website
www.stopjenny.com/index.html
rebuttal to jenny's website
Posted at 4:22pm on Sat, Jun 20 2009
Colebeck Death by lethal vaccine
www.ratbags.com/rsoles/vaxliars/colebeck.htm
The letter circulating about the girl that died from vaccination and the rebuttal to her fear mongering.
Posted at 3:05pm on Sat, Jun 20 2009
Herd_immunity What is Herd Immunity
en.wikipedia.org/wiki/Herd_immunity
the wiki page on herd immunity
Posted at 2:59pm on Sat, Jun 20 2009
23519029 Vaccine Settlement no Landmark
www.msnbc.msn.com/id/23519029/
My response (side note-my comments are not allowed on but she continues to reply on her blog to my comments.)
Thank you for posting all my links that was very kind of you. (and yes I realize you won't allow this post on your comments)
You do realize that if I had a hidden agenda I could have easily posted under a different name. All my blurbs contain disclosure statements.
As i had posted in response to Twyla's angry post to me, I did not bring up any of my beliefs as to treatment, causes etc. I merely responded to the pain and despair in the post.
You can choose to make it about my stance on autism and vaccines if you wish, I truly care not. Attack my blogs, heck you can come see me on fb and huff and twitter and myspace and sling all the mud you would like.
Your bitter and accusatory words change nothing, although they certainly do demonstrate quite clearly your merrit.
And yes, TERESSA, hugs and laughter do matter. I am sorry for you that you can not understand that.
Chris's response to the post of mine that was disallowed and my rebuttal:
And perhaps someone can explain how you are able to respond to my words, albeit a wee bit of twisting, when my response never appeared on Julie's page?
"Oh, and for Angela, I just went and looked at your blog, BTW. This is going to be long, so please forgive me.
You wonder why we are so angry. Why we slap your hands away when you "reach out" to us.
You pretty much call us liars, that's why. You say that our children's problems are not real. Their digestive issues are a figment of our imaginations."
But Chris, I was slapped before you had any idea as to my stance on autism and vaccines. For the record in no place have I posted that parents are imagining digestive problems. I don't say that parents are 'liars' although i have and will continue to point out when they do lie.
Chris continues: "I am actually not going to touch the whole vaccine argument. My own child's case is much more complicated than that so I am not even going to go into the "cause" arguments with you."
I never expected you to get into this argument. As i so stated in response to Twyla.
Chris writes:
"Yes, doctors talk like that about digestive issues when it comes to children with autism. They do it all the time."
My doctor did not talk to me like that. Therefore your implication is untrue. I am sorry that you ran into doctors that did not respond appropriately to concerns you had for your child's health.
Chris goes on with: "For my daughter it was yeast infections ...(lots of detail I cut out about her child's health issues)...
Guess who prescribed her Nystatin for her yeast infection? That's right, one of those so-called quack DAN! doctors. Within ...(describing her daughters lack of symptoms)... REM sleep she so desperately needed."
First I did not say "No DAN doctor has ever helped any child". That being said, some of the 'treatments' being used by some DAN doctors are painful and have not demonstrated SCIENTIFICALLY to be sound. Some are actually quite dangerous.
Secondly. My child had ear infections, did not sleep, refused to potty train, had constant sinus infections, would pee in every available spot in his room, gave himself a rash on his privates from near constant fondling of his self, did not speak, did not crawl. He would wander off with strangers, throw fits that so resembled seizures that i rushed him to the hospital and often would get a fever of 103+ with no symptoms. Without any doctor, with no biomeds no lupron, no hbot, no detox, no chelation no gfcf diet (except for antibiotics for the ear infection and saline spray for his poor sinuses) all these things corrected themselves in a short amount of time. The summer before he started school he potty trained, began to speak, stopped urinating all over, slept 6 hours in a row! no more ear infections (which are common in children under 3), no more fondling himself raw.
Chris goes on to say:
"Yet people like you chastise me for treating a very real problem she did indeed have. The camera does not lie; I have photographs before and after beginning biomed of my daughter and there is a very shocking difference in her appearance. You call people like me liars, tell us that we have Munchausen's by proxy brains, tell us that we just cannot handle it that our children are not perfect and we have no love for them so we torture them with biomed - and then you wonder why we slap your hand in anger. Could you befriend someone who ridicules you, trivializes your child's (and yes your family, when your child suffers, the whole family suffers) pain and calls you a liar? That is what you are doing."
I have chastised no parent until they start using lupron with a mock precocious puberty diagnosis. This I feel is child abuse. I never said her problems were not real, nor would I ever look down on a parent for trying to help his/her child with a medical issue-unless the treatment was dangerous or unnecessarily painful. As to your photos, I have photos too that show a remarkable improvement in my child's health. He went from pale with dark circles under his eyes, too skinny by far to being healthy and bright eyed. I had not called you or people like you liars for a reason. I don't feel that calling someone a liar is correct use of the meaning of 'liar'. For even someone who spouts fibs all day does occasionally tell the truth. I do however point out when what is being said is factually incorrect, or when I disagree. I have never told someone they have munchausen's by proxy brains, not too sure what that refers to. I clearly understand from your rambling on what you imagine my stance on biomed is that you only accept positive comments from 'people like you'. You quite clearly have divided the world into distinct groups. People who completely agree with you for refusing to accept your child as valuable the way she is, people who believe that vaccines instantaneously damaged their child, people who use any sort of non mainstream medicine be it safe and proven or not VS those who do not.
How sad for you.
Chris continues:
"I should also add that my daughter potty-trained after a few months on antifungals and good quality probiotics. She had no sense of needing to move her bowels before the probiotics. I was very pleasantly surprised. I was beginning to believe that she would be wearing a diaper into her teens. I am still pinching myself that she is completely toilet-trained when just one summer ago our carpets were covered in smeared poop."
I am glad for her that she potty trained. So is my child.
Most autistic children potty train, although not typically on par with the NT development. It's a developmental delay, not a developmental non existence.
Chris says:
"By the way, my daughter is FAR from recovered. She is on the more impaired end of the spectrum. She is six and has no speech. She has no pretend play at all and is spending the summer stimming at the kitchen and bathroom sinks because she is fascinated with water."
I never said your child was recovered. Julie is the one that posted her child is recovered. 'My daughter is here, yes, and I have so much to be thankful for, she is recovered!' . In your post you also say she was born in 2001 which makes her 8 not six. (bolded part does not apply as I mistook who had slapped me in the post) I am also learning from my son (who just turned 11) that imagination is there, it is just demonstrated in an atypical fashion. If stimming at the sink enjoying water makes her happy, where is the harm?
Chris continues: "The point is she feels better, and it is no thanks to "mainstream medicine". My anger has nothing to do with me not loving her; it has everything to do with her regular doctors ignoring her issues and treating her with no compassion."
I am glad she feels better. Your anger is somewhat directed at mainstream doctors yes, however Julie refers to her child as being dead, She did imply that the Evie who lives in her home is not her daughter ("rage I feel over the loss of my baby girl" "She is dead. That Eve is dead.."I want that Eve back! I want THAT Eve!"how our children are the sickest on the planet" "My daughter’s MIND, HEALTH and LIFE’S POTENTIAL were stolen") These comments clearly demonstrate her lack of acceptance for her child as she is. (note to julie: She may not be communicating fully Julie, but don't kid yourself. She may very well be hearing every word and understanding. She takes in a lot more information than you think.) Her attitude is that Evie has no value unless she can 'fix' her. that she is ill, dead, gone, sick, has not mind, no potential. I encourage you to go read what the adults who are autistic have to say about these concepts. The Eve Julie has still needs to feel love and accepted FOR WHO SHE IS, not only for who she wants her to be, what she expected her to be.
Chris writes:"You go on and on about how we dehumanize our children, how we don't see them as human beings and so we treat them for issues that don't exist. Honey, with that attitude, we will never be friends. It is the medical community who dehumanized and failed my child, not me, not her DAN! doctor, not the so-called "martyr moms" and "victims" here on AoA. I come here because for the first time I do not feel so alone. I know I am not insane. I know that my child's issues are/were real and so does everyone else here."
First I have not said you dehumanize your children, but I do in part agree with that statement. Calling your child 'dead' is most certainly not recognizing her as a living, thinking, feeling person. I have also never said that 'all those anti vax parents are treating their children for issues that don't exist' nor did I say that you, Twyla or Julie in particular are doing this. I have said that chelation therapy is dangerous and should only be used for what it is intended-to remove heavy metal poisoning. I have also stated that some quacks are providing testing that is not accurate (and provided references for such statements) in order to sell chelation to parents of autistics. I have also stated that Dr Geier's quackery of 'diagnosing' ASD children with precocious puberty then prescribing Lupron at dosage levels that EVEN the Pharmaceutical companies do not endorse is dangerous, malpractice and beyond absurd.
I also refute your statement that 'the medical community who dehumanized and failed'. A handful of doctors does not represent the entirety of the medical community. There are good doctors and bad.
I am all for treating medical issues properly. Re-occurring yeast infections should have been dealt with by the doctors you saw, I agree. Digestive issues are not a joke, I concur. I do not agree that ALL children have digestive issues, yeast infections etc. This simply is not factual. Many children who are diagnosed ASD also end up with other diagnosis. From epilepsy to anemia. These are separate issues and should be treated as such.
As for your AoA crowd, Some of the posts have provided wonderful insights and resources. The level of bitterness, rage, self pity, lack of tolerance for those who are autistic, lack of scientific credibility does indeed seem to suit you. Glad you found a niche. (Yes that is an attack)
As for offering you friendship, I did not ever think we would go for coffee, share confidences and all those wonderful things friends due. As I have stated I was merely reacting to the pain and anger in Julies post and reaching out. Why? Because it is the right thing to do. (my opinion). It's called compassion. I have been there. Most people have, at some point in their life, been consumed by anger and despair. Again, wonderful that my pointing out the positives elicited such a violent outpouring of hatred.
Chris continues with "And honestly, yes, I WOULD love to see her recovered from autism someday. Will it happen? Likely not. But someone has to take care of her when I am dead. She has four siblings who I pray will always be there for her but there are no guarantees. A cure for autism would free her up to live a life on her terms and not be at the mercy of others who may or may not be kind to her."
Julie said in her article she was recovered. (yes now I am laughing at you).(edit: For that bolded comment I do apologize. Even if it had been Julies post it wasn't neccessary to drop to chris and twyla's level of ignorance.) The very statement that you want to 'recover' her rather than you want to help her learn and grow is devaluing and a rejection of who she is. As for your declaration that someone has to take care of her... It is true that some persons who are autistic will require some level of care permanently. However, she is eight. She has barely begun her journey in life. Regardless of how slow her development seems to you, you who demands that she be on par with the typical child, she will develop and grow. She will learn. In her own way on her own schedule.
As for being at the mercy of others who may or may not be kind. Where did you get the idea that having autism is the equivalent to being at anyone's mercy? All children are at the mercy of their parents and the adults who interact with them. All children, ASD or not will have to deal with bullies, teasing and what not. Unless of course one lives in a bubble. Just like any other parent it is your job to help her have a strong sense of self so that she is able to deal with the ignorance out there. How you will manage that when you personally don't feel she deserves esteem? (Unless of course she transforms into what you perceive a 'normal' child should be.)
Chris continues:
"Wanting a cure does not mean I do not love her. I am actually shocked that there are those who feel that way and did not know there was anyone who thought like that until I found ND and all their sites."
Perhaps our definitions of what loving a child as a parent differs. To me, loving a child is accepting them as they are while still encouraging them to learn, challenging them to be more. To me, loving a child is not synonymous with feeling they are dead, or that their very personality requires curing. To me loving a child is seeing the beauty of their innocence and striving to protect that child while still allowing them to make mistakes, experience life so that they may learn. It is learning to meet that child's needs not forcing them to meet mine. To me loving a child is joy, happiness and laughter along with worry frustration and fear. To me loving a child is encouraging them to explore the world, celebrating their accomplishments and helping them to utilize their strengths to compensate for their weaknesses. To imply she needs curing, rather than providing her with understanding is a rejection of who she is.
Hugs and laughter (you obviously are in need of some)
Angela
And just for the record Julie does say she is the mother of a recovered child:
http://www.ageofautism.com/2008/09/an-autism-moms
http://www.whale.to/vaccine/november_19.html
Twyla responded to my post on AoA
this is the dialogue:
@Twyla: You said, "Julie is not just saying that her daughter is not going to be like she expected, but that her daughter is not who she would have been without the vaccine injury. Julie will never know who Eve would have, could have been without our f-d up out-of-control vaccine program. There is a difference."
Firstly, I quite deliberately did not tackle the science vs pseudo science aspect of Julie's post. I instead was reaching out to her, in hopes of reminding her that while raising a child with special needs does indeed include worry, anger, fear in ways that parents of NT children do not fully understand it can also be rewarding, joyful and beautiful. If you would like to get into a discussion on autism as 'vaccine damage' we can do that. Be aware though, that I have read the AoA version of the studies, read studies on pubmed, researched the founders of AoA, Safeminds and Generation Rescue. I am happy to invite you to a logic based debate. Julie's post, however was not about science, it was about feeling angry and bitter over her child's autism.
Twyla you say "Lovethosekids, you are looking at Julie's post in a biased way."
Of course I responded to an emotional post with my own bias. This is the nature of being a human. She also posted with her own bias. As you are now.
Twyla you say "How can you say, (in regard to my comment of 'you seem to feel there is not a single shining moment for your child, no loving fond memories for the baby book, no moments of joy, no pride in her accomplishments?') That is not what comes through at all. Clealy Julie loves and enjoys her child and is proud of what she can do. But baby books are meant for the "neuotypical" with spaces to show when typical milestones were met, etc. There is an incongruity between our babies'/toddlers' lives and that depicted in the typical baby book.
Please explain where in Julie's post it is clear that she loves and enjoys her child, and is proud of what her child can do?
As for a baby book, I still happily write in mine. The fact that my son's first words were at age 4 are still a fond memory.
I have never seen a baby book that shows when typical milestones are met, although I am sure there are some. Get one that doesnt if it disturbs you. For your information my oldest child walked at 9 months, but couldn't ride his bike till he was 10, and he is NT. Not all children develop the same, or on any schedule. More so with a child with a developmental disorder, but milestones are still present and I would think they deserve to be celebrated.
Twyla you say (in response to my comment of "But it is important too, in my humble opinion, to not stay immersed in anger and bitterness.") "Duh. Julie says that too. She is writing about grappling with lots of emotions. Sometimes we have to express it all in order to then move on and live our lives to the fullest."
I did say I was assuming her post was a onesided rant. I also acknowledged the need most people have to vent.
Twyla you say "As far as cancer, of course it would be unbearable to watch your child go through cancer treatment, and worse yet to watch your child die of cancer - absolutely unbearable. But I think what Julie is pointing out is that if your child is diagnosed with a medical condition such as cancer, there are existing protocals and specialists, whole sections of hospitals, support systems in place. Whereas for the medical issues affecting kids with autism there is so little support from mainstream medicine, so little knowledge of effective treatments, and not even much research on treatments for the kinds of issues Eve faces."
There are existing protocols and procedures for autism as well. There are behaviour therapists and interventionists, social scripting, speech therapy and a variety of other professionals who are trained in assisting an autistic child in gaining skills, trained in teaching parents on how to accommodate and parent an autistic child. Our family doctor referred us to the pediatrician and child psychologist-which meant our medical did in fact cover it. They in turn, upon assessing our child reffered us to the appropriate professionals. Again Covered. Of course, this assumes you have extended medical services. (in both our scenario with autistic children and in the scenario of having a child with cancer.) If you refer to unscientific 'treatments' then of course it is not covered. Many of the treatments parents are clamouring for have actually been proven to be dangerous and not effective.
Twyla you say "In many circles there is not even curiosity to try to better understand these issues; parents are told things like, "Oh, it's part of the autism. It's genetic. Nothing you can do." or "It's part of the autism. It's psychological. He's constipated because he is withholding poop in an effort to control his world."
In the circles I am exposed to no one speaks like this. My sympathy to you if your circles do. There are always things you can do to help your child, it is most certainly at least in part genetic and shame on anyone who is not curious at the very least as to the things that effect their child's well being.
Twyla you say "In conclusion, your comment is very judgemental and you don't fully understand Julie's article."
Well Twyla, I am sorry that you felt I was being judgemental. What I felt reading her post was concern.
Sincerely
Angela
Saturday
To Julie Obradovic about "Autism Perception: 'A Bump in the Road?"
Dear Julie,
I just read your post on AoA here
My heart goes out to you and your family. Being a mommy is not the easiest task, I know. When, as a parent we are faced with the reality that our precious child is not the same as other people, we have the right to feel angry and bitter, to grieve and mourn. We had expectations for our child, for our relationship with that child. It is very normal and natural to go through a mourning stage when we discover that these expectations will not match reality.
But Julie, as a mom, we have to let go of that selfish anger and bitterness. We have to bury those expectations and open our hearts to new dreams and goals. We have to let go of the grief. We simply must get past that very selfish grieving stage, Julie, because as Mom's we have a very important job-to love our child unconditionally.
I am not saying it is easy Julie. You will have to find your way to your child. She may not react the way you expect her to, but she does in fact have reactions. She may not communicate how or when you would expect her to, but she will in fact communicate. It will be your job, Julie to learn to understand this beautiful child you have been gifted with. Don't mistake me Julie, I know this is not the child you thought you were getting, but I promise you that if you learn to love this child BECAUSE of her differences, unconditionally accept her the way she is, let her teach YOU how to communicate with her, relate to her, interact with-you will be astonished by how much she will add to your life.
Your pain does not serve you or your loved ones well, Julie. Your resentment that you did not get the child you expected, that resentment will spill over teaching your other children to resent as well. Your daughter may not demonstrate her intelligence in the ways you would expect, but she is taking in information Julie. How must it feel to her? Your disappointment and rejection of her, your frustration anger and selfish bitterness?
Please Julie, do not misunderstand. Every parent goes through feeling helpless, sorry for themselves, angry and bitter. More so a parent that finds out their child is not typical (why me! it's not fair!) and yet more so a parent that looses a child. But living there, in that pit of pain and hurt and anger-harms you, harms your family and damages everyone you come in contact with.
Julie, please, put aside all your preconceived notions of what your child should do, how your child should be and love her with all you are. Learn to listen to her, learn to LEARN from her.
Feel pride in her accomplishments, accept that some of her behaviours are necessary-for her. Look at your child without the bitterness changing your view. Note how beautiful she is. Let yourself accept her, just as she is.
And the journey will begin, taking you places that will fill you with fierce joy, pride and love.
Sincerely,
Angela
Sunday
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