Overheard at playground:
M: My papa works in an office. He's an officer.
Monday, May 21, 2007
Crusin'
G. is not ready to crawl, but boy is he ready to walk! He is so happy when upright, it's amazing. Today we went to a huge playground with lots of low equipment. The perfect size for our giant-size toddler. He cruised around a little table, growing more confident by the minute. He played the drums, he imitated another little boy playing with a stick. He loved being around the big kids and was beaming from ear to ear. He pulled himself down a slide and laughed out loud, clapping his hands.
While we were eating lunch, he showed me a bird and said "bird!" emphatically. He said hello to lots of kids and was very interested in what they were doing. As we were leaving, he was calling out, "Bye-bye!" It was a hugely social day for him and a lot of fun for all of us.
I love to see him like this--happy and engaged. It makes me feel that things will turn out okay, that regression is not likely in his case. I just wish I could remember that feeling late at night when I am alone with my thoughts. He is growing into such a beautiful, charming little guy. I can't imagine what I would do if it all went away.
While we were eating lunch, he showed me a bird and said "bird!" emphatically. He said hello to lots of kids and was very interested in what they were doing. As we were leaving, he was calling out, "Bye-bye!" It was a hugely social day for him and a lot of fun for all of us.
I love to see him like this--happy and engaged. It makes me feel that things will turn out okay, that regression is not likely in his case. I just wish I could remember that feeling late at night when I am alone with my thoughts. He is growing into such a beautiful, charming little guy. I can't imagine what I would do if it all went away.
Wednesday, May 16, 2007
Stewing in ignorance, then passing it along
I started reading a support board for a specific condition about 9 months ago. This was during a time when I was at my lowest, when I was sure that my little monkey would never be normal. That he wouldn't talk or walk or even acknowledge his family. It felt good to get my fears out there, to have them be acknowledged by others. G. has improved greatly, though the whole walking question is still up in the air. As his little personality emerges more and more, I find myself really disgusted by the board and the people, mostly women, who frequent it.
There are a few people on said board that I would consider educated and reasonable. They examine the research closely, question their doctors and take advice with a grain of salt. The rest are guilty of faulty logic, horrendous spelling, dubious advice and intense competition. Unfortunately, the latter group posts about ten times as much as the former.
Now and then I respond, or even start topics, but I would consider myself primarily a lurker. The few times I have posted my skepticism of a treatment plan or a diagnosis, I have been dismissed or drowned out. When I informed a mother that secretin was proven to be useless and that her child's "doctor" was most likely trying to sell off his stockpile, she responded with, "Yeah, that's probably true. But I still feel like it's worth trying."
Example: Today a mom posted that she was considering giving her 20 month old a new multivitamin. She asked for advice and linked to a description of the vitamin. It had 278% of the RDA for vitamin A. It was almost 1.5 times the upper limit value. The first two posters responded with some version of "Sounds great! Give it a try and let me know how it goes!" I waited for someone with more sense to jump in. Dead silence. Finally, I decided to warn her about the vitamin A, adding several links to reputable sites talking about the dangers of too much vitamin A. Within minutes, someone else posted that the vitamin looked like a great choice. She then added that her doctor insists that she keep the kids' vitamins to the RDA. So she then recommended that the original poster do what she does--seek the advice of a DAN! doctor and then lie to the pediatrician. Nice... She also said she was only a layperson, but that it was "well-known" that kids like theirs did not absorb vitamins correctly, so one must overdose. Oh, the horror.
Why are we as mothers willing to write off the opinion of trained professionals in order to follow the advice of some anonymous person on the internet? Why will we pay $1000 for an HBOT treatment but refuse to pony up the $300 for a Fragile X test? There are kids on that board that undoubtedly have genetic syndromes, but their parents are too caught up in vaccines to consider genetics. I have heard things that made me want to weep--such as the parents who were valiantly trying to inhibit their child's early reading skills because they were concerned he was hyperlexic.
I think I am done with that board. Done with all the competition about whose child is highest or lowest functioning. Did you know that mothers could argue about whose child talked less or smeared feces more? Or that mothers could verbally attack a mother of two special needs kids who disagreed with the notion that their issues were worse than a terminal illness? I am done with all the talk of aluminum poisoning and the evils of casein. I am too weary of hearing how hard things are, how doing less than 40 hours a week of therapy means you are a neglectful mother and that every last thing your child does should be scrutinized in case it turns out to be a stim.
At this point, I don't even think that G. has the issues I thought he did. Even if he does, I refuse to stew with these people. I will head back to my hypotonia board, where the moms are gentle, kind and encouraging. Every success is celebrated and the atmosphere is very hopeful. And hypotonia is generally spelled correctly. I just worry that no one will be watching the store when the skeptics leave.
There are a few people on said board that I would consider educated and reasonable. They examine the research closely, question their doctors and take advice with a grain of salt. The rest are guilty of faulty logic, horrendous spelling, dubious advice and intense competition. Unfortunately, the latter group posts about ten times as much as the former.
Now and then I respond, or even start topics, but I would consider myself primarily a lurker. The few times I have posted my skepticism of a treatment plan or a diagnosis, I have been dismissed or drowned out. When I informed a mother that secretin was proven to be useless and that her child's "doctor" was most likely trying to sell off his stockpile, she responded with, "Yeah, that's probably true. But I still feel like it's worth trying."
Example: Today a mom posted that she was considering giving her 20 month old a new multivitamin. She asked for advice and linked to a description of the vitamin. It had 278% of the RDA for vitamin A. It was almost 1.5 times the upper limit value. The first two posters responded with some version of "Sounds great! Give it a try and let me know how it goes!" I waited for someone with more sense to jump in. Dead silence. Finally, I decided to warn her about the vitamin A, adding several links to reputable sites talking about the dangers of too much vitamin A. Within minutes, someone else posted that the vitamin looked like a great choice. She then added that her doctor insists that she keep the kids' vitamins to the RDA. So she then recommended that the original poster do what she does--seek the advice of a DAN! doctor and then lie to the pediatrician. Nice... She also said she was only a layperson, but that it was "well-known" that kids like theirs did not absorb vitamins correctly, so one must overdose. Oh, the horror.
Why are we as mothers willing to write off the opinion of trained professionals in order to follow the advice of some anonymous person on the internet? Why will we pay $1000 for an HBOT treatment but refuse to pony up the $300 for a Fragile X test? There are kids on that board that undoubtedly have genetic syndromes, but their parents are too caught up in vaccines to consider genetics. I have heard things that made me want to weep--such as the parents who were valiantly trying to inhibit their child's early reading skills because they were concerned he was hyperlexic.
I think I am done with that board. Done with all the competition about whose child is highest or lowest functioning. Did you know that mothers could argue about whose child talked less or smeared feces more? Or that mothers could verbally attack a mother of two special needs kids who disagreed with the notion that their issues were worse than a terminal illness? I am done with all the talk of aluminum poisoning and the evils of casein. I am too weary of hearing how hard things are, how doing less than 40 hours a week of therapy means you are a neglectful mother and that every last thing your child does should be scrutinized in case it turns out to be a stim.
At this point, I don't even think that G. has the issues I thought he did. Even if he does, I refuse to stew with these people. I will head back to my hypotonia board, where the moms are gentle, kind and encouraging. Every success is celebrated and the atmosphere is very hopeful. And hypotonia is generally spelled correctly. I just worry that no one will be watching the store when the skeptics leave.
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