It was bound to happen. I have my first internet stalker/harasser. She is a rabid anti-vaxer who took offense at something I said about 35 posts ago. Since that time, she has made it her mission in life to mock me, call me hurtful and apparently, monitor my posts on multiple boards. I am getting concerned that she might show up on my driveway one of these days. I angered her further this week by giving my opinion on Jenny McCarthy. According to her, only a mother of a child actually diagnosed with autism can have an opinion on vaccines.
Her whole point seems to be that her child is one of the most severe and therefore, she can monitor who can go on what boards and ask what questions. It's pretty amazing that she can appoint herself judge, jury and executioner so easily. At the end of her last diatribe, she said that she wouldn't go on a prematurity board as the mother of a 36 weeker. Well, what if that 36 weeker had problems related to prematurity? It can and does happen. I have a good friend with a former 28 weeker. She has had few of the expected problems over the years--does that make her ineligible too? The competition for the worst-of-the-worst is disgusting and this woman is heavily invested in it.
I have definitely decided that the asd board is just not for me (or G for that matter). The atmosphere there is just bizarre, bordering on abusive. Now, off to change my screen name for every single place I have ever posted, just to make sure.
Saturday, September 22, 2007
Friday, September 21, 2007
Thanks for the "support"
To all the lovely, kind, supportive women on the Babycenter asd board:
I am not sure where you got the idea that my son has always been typically developing or that my question was posted to "rub salt in your wounds". He has received therapy almost since birth, something his doctors are in agreement that he needs. We have had some spectacular developmental gains over the past month or so and that has led me to wonder if they indeed cancel out some of his past issues.
G was extremely hyperreactive after birth and would scream at unbelievable decibels with each diaper change. He had poor eye contact at 8-10 weeks and terrible tracking skills. They were bad enough that the ped asked us to see a pediatric opthalmologist to make sure G's vision was normal. The first time the neuro saw him he was really worried by how blank and expressionless G's face was. He got us set up for an MRI and EEG as soon as humanly possible. My child's pediatrician called me in tears after her phone conference with him, thinking they were going to find something wrong. We were surprised and grateful to get clean labs and a normal MRI.
After the tests, the ped. was worried enough during one of his well-baby visits to call in a favor and get him seen by the developmental pediatrician the following day. She described him as delayed and wanted us to get a lot more therapy.
I got the Floortime book to try to improve his issues on my own, whatever was causing them. I worked daily with him, rocking him on the porch swing for hours while singing silly songs to try to gain eye contact. Little by little, his capacity improved. However, when he looked at us, it was more likely to give us a glare. He was late to both smile and laugh and both strangers and relatives alike commented on how serious he was.
During the period between 2 and 8 months, G's head circumference percentile went from the 60th to well over the 100th. That's fast, ladies and gents. Rapid head growth is a fairly well-established phenomenon in autism, and we were understandably worried. Both my husband and I have big heads though, so we hoped to write it off as genetics. We still don't know whether the head growth is an issue so the docs will continue to monitor it.
While I worked on the eye contact and object tracking, the EI team tackled his newly diagnosed hypotonia. His reflexes were bad to non-existent in some areas. At 8 months, if he got knocked over while sitting, he just fell on his head. All of the "catching" reflexes are still not fully developed at 17 mos. This is also a "soft sign" for asd. His gross motor skills were delayed. He finally crawled at 13.5 months after almost a year of therapy. Because he did not move for so long and his endurance was so poor, we discussed additional testing and muscle biopsies. We have opted against both at this point. He has just started walking within the last two weeks.
He talked on time, yes, but had a few dozen words before it ever occurred to him to say "Mama." He pointed on time, but dropped it for weeks. In their notes, the therapists all say they were unable to elicit a point and wanted to monitor that situation. Thankfully, he started up again. He was late for both waving and peek-a-boo, but once he did it, he did it. He has a start-and-stop history with milestones that I have really not bothered to post on here.
The past few months have held an explosive amount of progress for G. We are thrilled about it, but not sure whether his rocky past will have any impact on further development. With all of the new positives have come some quirky little things. Red flags? I doubt it, but with every thing else going on they are worth noticing. He has gotten more sensitive to sensory stimuli. The private PT had to take away a Wiggles car because he was so afraid of it. He will still go to any length to avoid touching grass. He flat out refused to touch a Koosh ball when the OT held it out to him. He still struggles with some fine motor items--after months of daily work the spoon still seems to be a mystery to him.
Yes, I was terribly depressed after my pregnancy but it's become a chicken-and-the-egg kind of thing. Was I depressed because of hormones or because my baby was not typically developing? Either way, my earliest posts on this board were no doubt hysterical and for that I apologize. I am sorry that I offended so many people with this post. But I think most of the offense was because of Jenny M. anyway. I have every right to have an opinion on her, diagnosis or not. And hurtful is not defined as "an opinion which differs from mine."
I enjoy my son, I am thankful each and every day for him--no worries there. I do not present him as a prodigy, but instead as a baby who has improved much faster than expectations. Do I think my son has classic autism? No. Do I think he has enough quirky traits to be monitored? Yes. Do I think his rocky history might predispose him to regression? I am not sure. I think the most reasonable answer is that his low tone has affected a lot of things but not his speech. As it has improved, he has improved. Does my questioning still make me the crazy lady?
Believe me, IN, I am not the skinny girl with the yogurt, LOL.
And that's all she wrote (and ever will)
I am not sure where you got the idea that my son has always been typically developing or that my question was posted to "rub salt in your wounds". He has received therapy almost since birth, something his doctors are in agreement that he needs. We have had some spectacular developmental gains over the past month or so and that has led me to wonder if they indeed cancel out some of his past issues.
G was extremely hyperreactive after birth and would scream at unbelievable decibels with each diaper change. He had poor eye contact at 8-10 weeks and terrible tracking skills. They were bad enough that the ped asked us to see a pediatric opthalmologist to make sure G's vision was normal. The first time the neuro saw him he was really worried by how blank and expressionless G's face was. He got us set up for an MRI and EEG as soon as humanly possible. My child's pediatrician called me in tears after her phone conference with him, thinking they were going to find something wrong. We were surprised and grateful to get clean labs and a normal MRI.
After the tests, the ped. was worried enough during one of his well-baby visits to call in a favor and get him seen by the developmental pediatrician the following day. She described him as delayed and wanted us to get a lot more therapy.
I got the Floortime book to try to improve his issues on my own, whatever was causing them. I worked daily with him, rocking him on the porch swing for hours while singing silly songs to try to gain eye contact. Little by little, his capacity improved. However, when he looked at us, it was more likely to give us a glare. He was late to both smile and laugh and both strangers and relatives alike commented on how serious he was.
During the period between 2 and 8 months, G's head circumference percentile went from the 60th to well over the 100th. That's fast, ladies and gents. Rapid head growth is a fairly well-established phenomenon in autism, and we were understandably worried. Both my husband and I have big heads though, so we hoped to write it off as genetics. We still don't know whether the head growth is an issue so the docs will continue to monitor it.
While I worked on the eye contact and object tracking, the EI team tackled his newly diagnosed hypotonia. His reflexes were bad to non-existent in some areas. At 8 months, if he got knocked over while sitting, he just fell on his head. All of the "catching" reflexes are still not fully developed at 17 mos. This is also a "soft sign" for asd. His gross motor skills were delayed. He finally crawled at 13.5 months after almost a year of therapy. Because he did not move for so long and his endurance was so poor, we discussed additional testing and muscle biopsies. We have opted against both at this point. He has just started walking within the last two weeks.
He talked on time, yes, but had a few dozen words before it ever occurred to him to say "Mama." He pointed on time, but dropped it for weeks. In their notes, the therapists all say they were unable to elicit a point and wanted to monitor that situation. Thankfully, he started up again. He was late for both waving and peek-a-boo, but once he did it, he did it. He has a start-and-stop history with milestones that I have really not bothered to post on here.
The past few months have held an explosive amount of progress for G. We are thrilled about it, but not sure whether his rocky past will have any impact on further development. With all of the new positives have come some quirky little things. Red flags? I doubt it, but with every thing else going on they are worth noticing. He has gotten more sensitive to sensory stimuli. The private PT had to take away a Wiggles car because he was so afraid of it. He will still go to any length to avoid touching grass. He flat out refused to touch a Koosh ball when the OT held it out to him. He still struggles with some fine motor items--after months of daily work the spoon still seems to be a mystery to him.
Yes, I was terribly depressed after my pregnancy but it's become a chicken-and-the-egg kind of thing. Was I depressed because of hormones or because my baby was not typically developing? Either way, my earliest posts on this board were no doubt hysterical and for that I apologize. I am sorry that I offended so many people with this post. But I think most of the offense was because of Jenny M. anyway. I have every right to have an opinion on her, diagnosis or not. And hurtful is not defined as "an opinion which differs from mine."
I enjoy my son, I am thankful each and every day for him--no worries there. I do not present him as a prodigy, but instead as a baby who has improved much faster than expectations. Do I think my son has classic autism? No. Do I think he has enough quirky traits to be monitored? Yes. Do I think his rocky history might predispose him to regression? I am not sure. I think the most reasonable answer is that his low tone has affected a lot of things but not his speech. As it has improved, he has improved. Does my questioning still make me the crazy lady?
Believe me, IN, I am not the skinny girl with the yogurt, LOL.
And that's all she wrote (and ever will)
Thursday, September 13, 2007
The liars among us and how to combat them
There is a terrifying series of posts on my favorite "support" board today. A frantic mother posted that her sons, who were just diagnosed with asd, were not going to be allowed in preschool unless they had been fully vaccinated. She wanted to know how to get an exemption.
Well, all of the usual suspects jumped on board with their advice about claiming a religious exemption. One particularly helpful woman posted a long letter filled with drivel and supposedly pertinent Bible passages to illustrate the point. They were all just aghast at the preschool and the state in general for requiring such things. The mother who originated the post copied the sample letter, substituted the names of her sons ans submitted it to the school. Hours later, she ecstatically posted that her kids were in school without their vaccinations--it was so much easier than she thought it would be. Oh, there is a place in heaven for you, true believer!
My tongue is getting bloody from biting it so much when I read the messages in that forum. I want to scream at these people, to make them realize that what they do puts my children at risk and sets critical thinking back by about 100 years. The ignorance and stupidity they post seems to spread like a virus, making the site actually dangerous for newcomers to read. When I posted once that G had a large head, someone I'll call Aluminum Woman responded that heavy metal poisoning was known to cause swelling of the head. I'll tell you what causes swelling--banging your head in frustration at having to deal with such ignorant people.
I wonder why I hesitate to say something. What is the worst thing that could happen? I guess I could get kicked off the site and that's not really something I care much about. I do frequent other boards on the site, but not so often that they make a difference in my life.
Well, all of the usual suspects jumped on board with their advice about claiming a religious exemption. One particularly helpful woman posted a long letter filled with drivel and supposedly pertinent Bible passages to illustrate the point. They were all just aghast at the preschool and the state in general for requiring such things. The mother who originated the post copied the sample letter, substituted the names of her sons ans submitted it to the school. Hours later, she ecstatically posted that her kids were in school without their vaccinations--it was so much easier than she thought it would be. Oh, there is a place in heaven for you, true believer!
My tongue is getting bloody from biting it so much when I read the messages in that forum. I want to scream at these people, to make them realize that what they do puts my children at risk and sets critical thinking back by about 100 years. The ignorance and stupidity they post seems to spread like a virus, making the site actually dangerous for newcomers to read. When I posted once that G had a large head, someone I'll call Aluminum Woman responded that heavy metal poisoning was known to cause swelling of the head. I'll tell you what causes swelling--banging your head in frustration at having to deal with such ignorant people.
I wonder why I hesitate to say something. What is the worst thing that could happen? I guess I could get kicked off the site and that's not really something I care much about. I do frequent other boards on the site, but not so often that they make a difference in my life.
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