$9.39...you get what you get...life at the Adventure House with autism and twins plus a bunch of neuroses and an awesome beer selection
Showing posts with label autism spectrum disorder. Show all posts
Showing posts with label autism spectrum disorder. Show all posts
Thursday, January 26, 2012
new videos to come
I have been making some videos lately to illustrate Ellie's progress with speech and spontaneity and it's my goal to load them this weekend. Cross your fingers.
Friday, June 24, 2011
Cheez it pleez
I don't know what it is about Ellie and carbohydrates. I can't believe the hype that all kids with spectrum disorders like brown and crunchy (although that kid hasn't met a cracker she didn't love). I think that it's a predictable texture, and this girl is all about predictability and routine. I read the same book--Click Clack Moo--to her for a year and a half at afternoon nap time (before a bad spring forward ruined afternoon nap forever and she would only nap with me, in my bed, every day, which led to...problems). She only likes dresses with pants. She only drinks water. She only plays Hogs and Kisses on Angry Birds, not any of the other varieties, although she is interested now in the monkeys in Rio. She already has mastered my move, which is to control, control, control in order to alleviate anxiety. Unfortunately, it took me almost 40 years to realize that the control is a facade, the anxiety will still bubble over, and the results can be difficult to bear. I want to teach Ellie better tools than I was taught (none). I want to show her that life isn't a thing to be managed; it's an adventure to live. You just gotta remember to pack your crackers.
Wednesday, May 25, 2011
six is the new six.
Ellie had a birthday this week, and while I don't have a lot of time now to write about the progress she has made in the last year, I will note that after six years, I am finally ready to say that she is toilet trained.
Whew.
Whew.
Saturday, August 7, 2010
People will think it. And some will say it.
I took the kids to Target the other day to buy party hats for my birthday. (I was 39 on Friday. No, there was no party. They just wanted party hats. We all wore them.) I took all of them to the bathroom before we headed over to Purvis Park. Ellie quickly realized that the acoustics in the loo were conducive to making her often-incessant vocalizing really loud, really vibrato and much more interesting than usual. She moved in her frenetic way, back and forth in front of the sinks, singing her proprietary song, really working the acoustics of the tile. A woman came in. She observed all my kids in various stages of handwash, dress-fix, toilet flush, and then her eyes rested on Ellie.
"What is that about?" she asked.
"What is what?" (I had Helen half out of a stall, pulling her dress out of her underwear, while Emma wailed that she couldn't reach the sink by herself).
"What is she doing?" She pointed a painted finger at Ellie. Now that I really looked at this woman, she was neither young nor old, but she definitely had a way around her eyes that I didn't like. I recognized it later as judgment.
"She is vocalizing." I patted Emma's hands dry.
"But what is it? I've never seen a child do this before."
"She has a spectrum disorder. This type of behavior is very common."
Her eyes grew wide, wide. "She does this all the time?"
"A lot. Yes."
Pause. "And you allow this?"
I've had hot flashes recently. They are generally horrible and wipe me out for hours after. I got very, very hot in that bathroom. A hot flash it wasn't.
"There is no allowing or not allowing. This is what her brain is telling her to do. It's neurological." I tried to get the twins to move closer to the door to cue Ellie that yes, we are leaving. Right. Now.
"Well, I'm not sure that bringing her out is the best idea. I mean, this is very disturbing." Now the woman's lips are pursed, and her hands are more stiff, and I feel the big eye of disapproval making its way to me.
I have no idea what possessed me. None. I have no idea how the filter from my brain to my mouth just chose that moment to open. But it did. And in one fell swoop, I said, "Well, I am certainly sure of one thing, lady. You're an asshole." And I grabbed Ellie's arm and shooshed my kids out the door, bags in tow.
I am mad at myself for a couple reasons. I used bad language in front of my kids, which is not the model I should show and I feel terrible about it. I could have used the opportunity to teach this woman something about spectrum disorders, but just couldn't. In that closed moment, when all I sensed was an attack on my child, I could hardly focus on the didactic. And now she's going to go to bridge or Red Hats or whatever she does and say, well, whatever is wrong with those kids, it's all the mother's fault. I can't help it now.
But she was an asshole. And pretending that I didn't say it isn't going to make it any less true. So shame on me for swearing, but double shame on her for judging. I think I know which is worse.
"What is that about?" she asked.
"What is what?" (I had Helen half out of a stall, pulling her dress out of her underwear, while Emma wailed that she couldn't reach the sink by herself).
"What is she doing?" She pointed a painted finger at Ellie. Now that I really looked at this woman, she was neither young nor old, but she definitely had a way around her eyes that I didn't like. I recognized it later as judgment.
"She is vocalizing." I patted Emma's hands dry.
"But what is it? I've never seen a child do this before."
"She has a spectrum disorder. This type of behavior is very common."
Her eyes grew wide, wide. "She does this all the time?"
"A lot. Yes."
Pause. "And you allow this?"
I've had hot flashes recently. They are generally horrible and wipe me out for hours after. I got very, very hot in that bathroom. A hot flash it wasn't.
"There is no allowing or not allowing. This is what her brain is telling her to do. It's neurological." I tried to get the twins to move closer to the door to cue Ellie that yes, we are leaving. Right. Now.
"Well, I'm not sure that bringing her out is the best idea. I mean, this is very disturbing." Now the woman's lips are pursed, and her hands are more stiff, and I feel the big eye of disapproval making its way to me.
I have no idea what possessed me. None. I have no idea how the filter from my brain to my mouth just chose that moment to open. But it did. And in one fell swoop, I said, "Well, I am certainly sure of one thing, lady. You're an asshole." And I grabbed Ellie's arm and shooshed my kids out the door, bags in tow.
I am mad at myself for a couple reasons. I used bad language in front of my kids, which is not the model I should show and I feel terrible about it. I could have used the opportunity to teach this woman something about spectrum disorders, but just couldn't. In that closed moment, when all I sensed was an attack on my child, I could hardly focus on the didactic. And now she's going to go to bridge or Red Hats or whatever she does and say, well, whatever is wrong with those kids, it's all the mother's fault. I can't help it now.
But she was an asshole. And pretending that I didn't say it isn't going to make it any less true. So shame on me for swearing, but double shame on her for judging. I think I know which is worse.
Saturday, March 27, 2010
Our Mall Meltdown, or, The One Where I Tell Smockity Frocks Where to Go
Before I address the completely understandable furor surrounding the now-infamous (thanks in large part to my friend Stork Doc) Smockity Frock's blog posting (see also www.squidalicious.com page for all the links, including the original now deleted post) I want to detail the now-infamous "Nordstrom Meltdown of 3/26," since it was as bad as it could possibly get, and we still survived. In short, all the girls needed shoes. That means they needed their feet measured, and Rachel Klein, aside from being a top-notch sales professional, is also highly sensitive to Ellie's sensory issues. She neither dilly dallies in measuring her nor puts her in a position to feel threatened or uncomfortable. The shoe adventure went fairly well, considering Lelli Kellies were involved, and any mother of a young girl child knows the spell those shoes put on our progeny. It's like freaking fairy magic.
Anyway, the second part of our mall adventure was to have a snack by the fountain outside the store. Ellie usually is good about staying in her seat while I procure food, but the fountain is just. so. desirable. There's water in it! It's cool to the touch! It's like a mirror! People throw things in it! It makes a sound! She literally could not stay away from the water, and I could not both stay in line at the Cafe to order and repeatedly stop my child from pitching forward into the fountain and drowning. After the fourth time I had to leave the line sans provisions I asked the woman behind me to hold my place because I had a special needs child who needed immediate attention. Her response was, "If you can't manage your children in public, you have no business bringing them anywhere." Mind you, the twins were plopped in the seats, chatting between themselves, not causing an ounce of disturbance (except for Emma telling Ellie to "get your dupa in your seat"). My only response to this woman was, "I take that's a no?" A decision had to be made. I could see the whole picture, quite Gestalten, and understood that my only option under the circumstances was to evacuate the troops. The water was going to be endlessly tempting, the risk of Ellie falling very real, and the combination of the two too stressful for me to manage.
Herein lies the crux of our story.
Anyone who has a child with an ASD knows that transitions are hard. We prep our kids for transitions between events, we use picture schedules, PECS cards, verbal cues. We build in time for in-between time, emotional change-ups, travel. We run like Italian trains under Mussolini...we're dictatorial about the timetables, but dammit if things don't get done. Throwing things in reverse without proper notice is disastrous. I know this. I've lived in Autismworld a long time. The rules are tattooed in my brain. Yet even armed with this knowledge, I made a choice to remove Ellie from the attractive nuisance on a dime.
It didn't go well.
She threw herself on the floor and crawled back to the fountain. She kicked. She rolled. She pushed me away. She almost smacked her head on the ceramic tile edging between the mall floor and the fountain precipice. She screamed. She ran away. She begged me to let her put her hands in the water. She used every muscle in her 40 pound body to get as far away from me as humanly possible. Meanwhile, her sisters observed this with their own emotional responses (crying, clinging to each other) and stuck to me like glue. In the bitter end, 15 minutes after it started, I potato-sacked a four year old who is fully half my height through the store with four coats, three balloons, two other kids, a purse and a bag full of shoe boxes in tow, desperate to get Ellie into a small enough space where I could guarantee her safety from herself. Were it not for a former colleague at the Big N, Marshae King, stepping in like the professional mother of 3 she is to help me, I would still be there, by myself, struggling, hyperventilating, wondering if someone was calling 696-KIDS on me while clucking about bad mothering.
This brings me to Smockity and what she doesn't get. Clearly she has a fetish about behavior and manners. Good for her. I live in a please and thank you world as well, and my kids know it. Anyone, anyone, who has spent any amount of time with my children, from family to my friends (including my childless friends, male and female) note that my girls are polite, funny, and generally perfectly behaved by most three and four year old standards. Do I get my fair share of sass and pushback from my typically developing three year olds who are trying to find their independent place in the world? I do, especially from Emma, and as one of my best friends noted, "You're going to have to break that one like a stallion." This is what we want three year olds to do, despite how frustrating and exasperating it is. They need to fight us. This is how children learn who and what they are as individuals.
But what happened at the mall was not sass. It was not Ellie wanting her way. It was the sudden, unexpected, and wholly jarring removal of a sensory experience that I know her brain was telling her she needed by me, her mother, the center of her world, the one who is supposed to make all sensory experiences right. I know what water does for her. I have seen her whole body cave from ASD rigidity into amorpous relaxation as I pulled her around a swimming pool while humming in her ear. And yesterday, when I weighed in the balance her safety versus her brain's need to decompress, I couldn't in the moment justify the risk. There is no way to explain that to my child, to her sisters, and there is certainly no way to announce it to every looky-loo who judged me yesterday--and there were many--as they observed an overwhelmed 5'1" redhead chasing a competely out of control kid around a store.
Smockity doesn't get this, obviously, and I think it's partially what Stork Doc and the others posit, which is essentially that Smockity is a self-righteous jerk. I also think it's because she has only parented children who are typically developing (and seems to have had no contact with children who aren't). Smockity doesn't have to go through the very complex and intense process of looking at an undesirable or unsafe behavior, deciding if it's related to the ASD in some kind of sensory way (sensory seeking, sensory avoiding) and, if it is, assessing whether the behavior can, in the moment, be shaped into a more desirable option (is redirection possible? how, and how quickly? if not, what's plan B?) all while evaluating what steps need to be taken immediately to avoid a repeat of the behavior in that context. These mental shenanigans often take place in two minutes or less, tens of dozens of times a week. It would be easy, as Smockity does, to dimiss the behavior as "spoiled," "indulged," and whatever other modifiers she chooses, and immediately set upon punishing it. But it wouldn't address the real underlying issue, and hence deny both parent and child an opportunity to learn how better to function in a world full of Smockities who are ready to judge and reject, ostracize and humiliate.
I for one want to live in a world that embraces, loves, and values. So does Ellie. So do her sisters. I hope you come with us.
Anyway, the second part of our mall adventure was to have a snack by the fountain outside the store. Ellie usually is good about staying in her seat while I procure food, but the fountain is just. so. desirable. There's water in it! It's cool to the touch! It's like a mirror! People throw things in it! It makes a sound! She literally could not stay away from the water, and I could not both stay in line at the Cafe to order and repeatedly stop my child from pitching forward into the fountain and drowning. After the fourth time I had to leave the line sans provisions I asked the woman behind me to hold my place because I had a special needs child who needed immediate attention. Her response was, "If you can't manage your children in public, you have no business bringing them anywhere." Mind you, the twins were plopped in the seats, chatting between themselves, not causing an ounce of disturbance (except for Emma telling Ellie to "get your dupa in your seat"). My only response to this woman was, "I take that's a no?" A decision had to be made. I could see the whole picture, quite Gestalten, and understood that my only option under the circumstances was to evacuate the troops. The water was going to be endlessly tempting, the risk of Ellie falling very real, and the combination of the two too stressful for me to manage.
Herein lies the crux of our story.
Anyone who has a child with an ASD knows that transitions are hard. We prep our kids for transitions between events, we use picture schedules, PECS cards, verbal cues. We build in time for in-between time, emotional change-ups, travel. We run like Italian trains under Mussolini...we're dictatorial about the timetables, but dammit if things don't get done. Throwing things in reverse without proper notice is disastrous. I know this. I've lived in Autismworld a long time. The rules are tattooed in my brain. Yet even armed with this knowledge, I made a choice to remove Ellie from the attractive nuisance on a dime.
It didn't go well.
She threw herself on the floor and crawled back to the fountain. She kicked. She rolled. She pushed me away. She almost smacked her head on the ceramic tile edging between the mall floor and the fountain precipice. She screamed. She ran away. She begged me to let her put her hands in the water. She used every muscle in her 40 pound body to get as far away from me as humanly possible. Meanwhile, her sisters observed this with their own emotional responses (crying, clinging to each other) and stuck to me like glue. In the bitter end, 15 minutes after it started, I potato-sacked a four year old who is fully half my height through the store with four coats, three balloons, two other kids, a purse and a bag full of shoe boxes in tow, desperate to get Ellie into a small enough space where I could guarantee her safety from herself. Were it not for a former colleague at the Big N, Marshae King, stepping in like the professional mother of 3 she is to help me, I would still be there, by myself, struggling, hyperventilating, wondering if someone was calling 696-KIDS on me while clucking about bad mothering.
This brings me to Smockity and what she doesn't get. Clearly she has a fetish about behavior and manners. Good for her. I live in a please and thank you world as well, and my kids know it. Anyone, anyone, who has spent any amount of time with my children, from family to my friends (including my childless friends, male and female) note that my girls are polite, funny, and generally perfectly behaved by most three and four year old standards. Do I get my fair share of sass and pushback from my typically developing three year olds who are trying to find their independent place in the world? I do, especially from Emma, and as one of my best friends noted, "You're going to have to break that one like a stallion." This is what we want three year olds to do, despite how frustrating and exasperating it is. They need to fight us. This is how children learn who and what they are as individuals.
But what happened at the mall was not sass. It was not Ellie wanting her way. It was the sudden, unexpected, and wholly jarring removal of a sensory experience that I know her brain was telling her she needed by me, her mother, the center of her world, the one who is supposed to make all sensory experiences right. I know what water does for her. I have seen her whole body cave from ASD rigidity into amorpous relaxation as I pulled her around a swimming pool while humming in her ear. And yesterday, when I weighed in the balance her safety versus her brain's need to decompress, I couldn't in the moment justify the risk. There is no way to explain that to my child, to her sisters, and there is certainly no way to announce it to every looky-loo who judged me yesterday--and there were many--as they observed an overwhelmed 5'1" redhead chasing a competely out of control kid around a store.
Smockity doesn't get this, obviously, and I think it's partially what Stork Doc and the others posit, which is essentially that Smockity is a self-righteous jerk. I also think it's because she has only parented children who are typically developing (and seems to have had no contact with children who aren't). Smockity doesn't have to go through the very complex and intense process of looking at an undesirable or unsafe behavior, deciding if it's related to the ASD in some kind of sensory way (sensory seeking, sensory avoiding) and, if it is, assessing whether the behavior can, in the moment, be shaped into a more desirable option (is redirection possible? how, and how quickly? if not, what's plan B?) all while evaluating what steps need to be taken immediately to avoid a repeat of the behavior in that context. These mental shenanigans often take place in two minutes or less, tens of dozens of times a week. It would be easy, as Smockity does, to dimiss the behavior as "spoiled," "indulged," and whatever other modifiers she chooses, and immediately set upon punishing it. But it wouldn't address the real underlying issue, and hence deny both parent and child an opportunity to learn how better to function in a world full of Smockities who are ready to judge and reject, ostracize and humiliate.
I for one want to live in a world that embraces, loves, and values. So does Ellie. So do her sisters. I hope you come with us.
Monday, April 6, 2009
Lee-Silsby, Part 2
I called Lee Silsby pharmacy this morning to get the scoop. I wanted to hear what the guy had to say. Here is the conversation. I used my cell to record my responses. His are to the best of my recollection:
[pharmacist gets on the phone]This is the pharmacist.
[ME] Hi, I came across your info online and I was calling to find out about your autism treatments.
[P] Do you have a child with autism?
[ME] I have a child with PDD.
[P] well, we have many options for you. I would suggest you start at the website www.autism.com for more information about biomedical autism treatments.
[ME] sure. well, I just want to know what you offer.
[P] well, kids with ASDs have mineral and vitamin deficiencies.
[ME] do they?
[P] yes.
[ME] how do you know?
[P] what?
[ME] how do you know that every child on the spectrum has this?
[P] well, the biomedical research shows it. it comes from their blood draws.
[ME] I guess I don't understand, if autism is neurological, what a blood draw is doing in the mix.[P] well, are you seeing a pediatrician?
[ME] of course.
[P] most pediatricians are not going to go the biomedical route. they won't offer you the type of testing biomedical physicans offer. they tell you it's neurological because that's what the AAP tells them. we work with several biomed doctors who have had amazing results using both our treatments and then other treatments they have designed.
[ME] but these guys, they aren't at UH.
[P] no.
[ME] they don't practice in a hospital.
[P] biomedical isn't part of the mainstream medical community. did you see Larry King the other night? there was a doctor from UH on with Jenny McCarthy, I've met with him at conferences and he is interested in what we're doing but won't commit to research on it.
[ME] Max Wiznitzer, yeah. I know him.
[P] you do?
[ME] he's my daughter's neurologist. and I have to say, I don't think Max is all that interested in what you're doing. maybe he was just being polite.
[silence here]
[ME] so you offer vitamin supplements, it looks like, and topical treatments.
[P] yes, the vitamin supplements help kid with ASD replenish what they are missing, and the topical treatments help detoxify their systems.
[ME] and this detoxifying, this will help with the flapping?
[P] I'm sorry?
[ME] welll, a lot of kids flap, you know....they have a lot of gross motor things going on...and usually it's some kind of behavioral modification that teaches them to self-monitor their bodies...I am wondering what this detoxification does for the flapping.
[P] look, if you just go to the website I mentioned, you'll get all the info you need about how our supplements cure some of these symptoms.
[ME] cure them?
[P] I have had patients all over the world be cured of many of their symptoms through our products. We also offer vitamin B12 shots, dietary programs...
[ME] people are just giving their kids shots?
[P] oh yes.
[ME] do their tell their doctors they are doing this?
[P] sometimes not, no.
[ME] and you're ok with that?
[silence here]
[ME] I am just still not getting how your stuff works and how you are getting reimbursed by insurance companies for it, when I can't get mine to pay for $3000 in outstanding OT bills we have from the Cleveland Clinic, which was prescribed by a doctor. How is your stuff getting covered and it just seems like kitchen brew?
[P] I don't have half an hour to explain this all to you.
[ME] but you are willing to sell me god knows what to rub on my kid and leech stuff out of her body?
[P] I am not sure what you want me to tell you.
[ME] well, here's what I'm going to tell you. I am boycotting your pharmacy because I think what you are doing is ethically wrong. You are selling stuff to desperate parents because they think their kid is broke and you can fix them.
[P] We have research from thousands of parents...
[ME] the plural of anecdote is not data.
[here's where I hung up.]
[pharmacist gets on the phone]This is the pharmacist.
[ME] Hi, I came across your info online and I was calling to find out about your autism treatments.
[P] Do you have a child with autism?
[ME] I have a child with PDD.
[P] well, we have many options for you. I would suggest you start at the website www.autism.com for more information about biomedical autism treatments.
[ME] sure. well, I just want to know what you offer.
[P] well, kids with ASDs have mineral and vitamin deficiencies.
[ME] do they?
[P] yes.
[ME] how do you know?
[P] what?
[ME] how do you know that every child on the spectrum has this?
[P] well, the biomedical research shows it. it comes from their blood draws.
[ME] I guess I don't understand, if autism is neurological, what a blood draw is doing in the mix.[P] well, are you seeing a pediatrician?
[ME] of course.
[P] most pediatricians are not going to go the biomedical route. they won't offer you the type of testing biomedical physicans offer. they tell you it's neurological because that's what the AAP tells them. we work with several biomed doctors who have had amazing results using both our treatments and then other treatments they have designed.
[ME] but these guys, they aren't at UH.
[P] no.
[ME] they don't practice in a hospital.
[P] biomedical isn't part of the mainstream medical community. did you see Larry King the other night? there was a doctor from UH on with Jenny McCarthy, I've met with him at conferences and he is interested in what we're doing but won't commit to research on it.
[ME] Max Wiznitzer, yeah. I know him.
[P] you do?
[ME] he's my daughter's neurologist. and I have to say, I don't think Max is all that interested in what you're doing. maybe he was just being polite.
[silence here]
[ME] so you offer vitamin supplements, it looks like, and topical treatments.
[P] yes, the vitamin supplements help kid with ASD replenish what they are missing, and the topical treatments help detoxify their systems.
[ME] and this detoxifying, this will help with the flapping?
[P] I'm sorry?
[ME] welll, a lot of kids flap, you know....they have a lot of gross motor things going on...and usually it's some kind of behavioral modification that teaches them to self-monitor their bodies...I am wondering what this detoxification does for the flapping.
[P] look, if you just go to the website I mentioned, you'll get all the info you need about how our supplements cure some of these symptoms.
[ME] cure them?
[P] I have had patients all over the world be cured of many of their symptoms through our products. We also offer vitamin B12 shots, dietary programs...
[ME] people are just giving their kids shots?
[P] oh yes.
[ME] do their tell their doctors they are doing this?
[P] sometimes not, no.
[ME] and you're ok with that?
[silence here]
[ME] I am just still not getting how your stuff works and how you are getting reimbursed by insurance companies for it, when I can't get mine to pay for $3000 in outstanding OT bills we have from the Cleveland Clinic, which was prescribed by a doctor. How is your stuff getting covered and it just seems like kitchen brew?
[P] I don't have half an hour to explain this all to you.
[ME] but you are willing to sell me god knows what to rub on my kid and leech stuff out of her body?
[P] I am not sure what you want me to tell you.
[ME] well, here's what I'm going to tell you. I am boycotting your pharmacy because I think what you are doing is ethically wrong. You are selling stuff to desperate parents because they think their kid is broke and you can fix them.
[P] We have research from thousands of parents...
[ME] the plural of anecdote is not data.
[here's where I hung up.]
Boycott Lee-Silsby Compounding Pharmacy
The Lee-Silsby Compounding Pharmacy in Cleveland Heights is making so-called "compounded medicines for autism." The claim (in testimonials, because there is no refereed, IRB controlled research) is that these drugs magically (presumably with sparkles and fairies and rainbow colored unicorns) take away all of the symptoms of ASD. They also sponsor a website, Age of Autism, which is anti-vaccine, anti-medical, pro-Jenny McCarthy (I cannot believe I actually have to type that). Chelation is one of the so-called treatments that Lee-Silsby supports (a treatment to remove heavy metals from the body, a treatment which has been discredited scientifically and which is dangerous to children). Parents are cooking up treatments for their child's autism and administering them with little to no medical supervision. In my opinion, this is tantamount to child abuse. It's funny that these clowns rail against Big Pharma and all the money that they allegedly make on vaccines and traditional psychopharmacological treatments for ASD related conditions, but who is asking Lee-Silsby how much they are making on their baking soda-toothpaste-hocus pocus--voodoo mess that they are selling to desperate parents? You bet your sweet bippee I am.In the meantime, I realize that it is important to support Cleveland Heights businesses. However, as a parent of a child with an ASD, I cannot support a business that promotes medical quackery and sells it as science. You make your own decision.
Saturday, February 14, 2009
The Second Gunman, NASA's Moon Soundstage, and Anna Nicole Smith was a Star
The special masters came back with a ruling yesterday that clearly states what a lot of us believe: vaccines don't cause autism. And still, the insanity that somehow, everyone involved in science is wrong and desperate parents who desperately want to believe that there is a connection are right continues today.
This morning I received a digest from a Yahoo! group I joined, National Autism Association-NE Ohio. Almost every posting in the digest was about "biomedical" treatments (bizarre diets, detoxifying your kid, super expensive conferences on wacky combinations of the two previously mentioned issues, the special masters' finding). I have to say, I just got totally pissed. Really. Those of us living with a child on the spectrum do not have the time to fool around with waste of time "treatments." So I fired off this letter to the posting administrator:
I believe I am confused about the mission of Autism Northeast Ohio. I thought it was an organization for promoting therapeutic information, scientific and pediatric care and options, and support for families. Instead I opened up today’s digest and saw that the first couple posts contain what amounts to a continuing and inexplicable dialogue about the so-called vaccine connection and an entire (expensive) conference on voodoo diets.
The question about autism and vaccines has, I believe, been settled. I know people want to believe there is a connection. There are also people who want to believe there are aliens living among us, that there was a second gunman on the grassy knoll, and that Anna Nicole Smith was a “star.”
We don’t walk around saying that going to college causes mental illness, even though the typical schizophrenia patient develops signs of the disease between the ages of 18 and 25, the time frame when a lot of kids go off to university. That’s just silly. Yet some insist on promoting this same fake relationship between childhood vaccines and autism. It is a waste of time and resources, both of which are extremely limited.
I would like to see more information about real therapy (music, speech, OT, play), more information about working with ASD children in their classrooms and communities, the ins and outs of the IEP process, more information about sibling relationships and the wellness of the whole family. In short, stuff that is based on vetted, refereed science and research. My daughter deserves to be supported with fact and truth, not suspicion and coincidence.
I would say that my email went over like the proverbial toot in church, because I got this back. I have inserted my own responses in bold. No, I didn't send these responses to the writer, because what is the point? She has an agenda and she really, really believes in it. But I want you to see what people like me are up against when it comes to defending science against, for lack of a better word, crap.
If you go to our website at www.autismnortheastohio.org, you will be able to read our mission, who we are and what we do. We do NOT endorse any of the varied therapeutic interventions for autism but support informing the population about them. We support and fund a variety of them, based on what the family that applies for support wants. We are not a clearinghouse of therapies. Therefore we will post information about a variety of therapies.
We applied for a grant to help with Ellie's music therapy. Probably won't get it now.
If you noticed, yesterday ot the day before I also posted info about upcoming workshops that we organize. The topics are varied from taxes to neurofeedback, special ed law, and biomedical testing. If I come across other resources such as workshops or articles about something relevant to autism, I post it too. And while NAA-NEO does some of the resource and article posting, we are also in the process of fundraising for families like yours, which is our main goal.
I'm not sure it is their main goal...I think their main goal is to push neurofeedback and biomedical. I have seen very little about special ed law lately, although they are trying to schedule an IEP resource meeting with Judith Saltzman, who practices SpEd law here in town. The bulk of the workshops are about gluten free casien free diet and immune system malfunction due to (you guessed it) vaccines. In short, voodoo.
Therefore I can only provide resources to the mailing list if I have the time or if I happen to see it someplace else and repost it. I we are unable to provide a balanced, scientific newsletter filled with the info you requested on a regular basis. I recommend that you join other groups for this type of resources on Yahoo or elsewhere, just go a search for autism, aba, autism and education, etc. as we do not specialize in any of these particular areas.
Is she admitting that their newsletter is unbalanced and unscientific?
I posted about the vaccines issue b/c I thought it was relevant because 2 cases were yesterday defeated in vaccine court, which is an establishment by government, deciding about the safety of vaccines for all, with overwhelming conflicts of interest. I personally think that is disturbing. One case in 2008, btw, won in vaccine court, which proved that that are some cases in which a predisposition (in that case mitochondrial dysfunction) could be a risk factor and once vaccinated, the child could become autistic (the Hanna Poling case). There is no one size fit all medicine or education for the the general population, but especially not for our kids.
Information about the Poling case is linked below. The ruling in that case is very narrow and probably will never be used as precedent in future cases. I do not think the special masters have a conflict of interest at all--they are looking at real science in this area as it relates to toxic torts and pharmaceutical malfeasance and they come to the legal conclusion that there is no proximate cause of injury and therefore no awardable damages. That's first year Torts at law school. Pirate lawyer friends, feel free to help me out here.
Last, please don't be disturbed by biomedical emails. If you don't want to read them, delete them. For many, many folks, biomedical brought better health, and in some cases significant improvement in autistic symtoms. Many parents want this information from us.
I am not to take sides here, NAA-NEO is not. We are supporting it all. But if this is too much for you to deal with, let me know and I will take you off the list.
I am not disturbed by them. I am angry that resources are being wasted on talking about an issue that is not an issue. The plural of anecdote is not data. Stories are not science.
http://news.yahoo.com/s/ap/20090212/ap_on_go_ot/autism_ruling
http://content.nejm.org/cgi/content/full/358/20/2089
http://www.nytimes.com/2009/01/13/health/13auti.html?_r=1
http://www.newsweek.com/id/165644/page/1
http://blogs.discovermagazine.com/badastronomy/2009/01/17/alison-singer-autism-hero/
http://blogs.discovermagazine.com/badastronomy/2008/08/22/antivaxxers-must-be-stopped-now/
This morning I received a digest from a Yahoo! group I joined, National Autism Association-NE Ohio. Almost every posting in the digest was about "biomedical" treatments (bizarre diets, detoxifying your kid, super expensive conferences on wacky combinations of the two previously mentioned issues, the special masters' finding). I have to say, I just got totally pissed. Really. Those of us living with a child on the spectrum do not have the time to fool around with waste of time "treatments." So I fired off this letter to the posting administrator:
I believe I am confused about the mission of Autism Northeast Ohio. I thought it was an organization for promoting therapeutic information, scientific and pediatric care and options, and support for families. Instead I opened up today’s digest and saw that the first couple posts contain what amounts to a continuing and inexplicable dialogue about the so-called vaccine connection and an entire (expensive) conference on voodoo diets.
The question about autism and vaccines has, I believe, been settled. I know people want to believe there is a connection. There are also people who want to believe there are aliens living among us, that there was a second gunman on the grassy knoll, and that Anna Nicole Smith was a “star.”
We don’t walk around saying that going to college causes mental illness, even though the typical schizophrenia patient develops signs of the disease between the ages of 18 and 25, the time frame when a lot of kids go off to university. That’s just silly. Yet some insist on promoting this same fake relationship between childhood vaccines and autism. It is a waste of time and resources, both of which are extremely limited.
I would like to see more information about real therapy (music, speech, OT, play), more information about working with ASD children in their classrooms and communities, the ins and outs of the IEP process, more information about sibling relationships and the wellness of the whole family. In short, stuff that is based on vetted, refereed science and research. My daughter deserves to be supported with fact and truth, not suspicion and coincidence.
I would say that my email went over like the proverbial toot in church, because I got this back. I have inserted my own responses in bold. No, I didn't send these responses to the writer, because what is the point? She has an agenda and she really, really believes in it. But I want you to see what people like me are up against when it comes to defending science against, for lack of a better word, crap.
If you go to our website at www.autismnortheastohio.org, you will be able to read our mission, who we are and what we do. We do NOT endorse any of the varied therapeutic interventions for autism but support informing the population about them. We support and fund a variety of them, based on what the family that applies for support wants. We are not a clearinghouse of therapies. Therefore we will post information about a variety of therapies.
We applied for a grant to help with Ellie's music therapy. Probably won't get it now.
If you noticed, yesterday ot the day before I also posted info about upcoming workshops that we organize. The topics are varied from taxes to neurofeedback, special ed law, and biomedical testing. If I come across other resources such as workshops or articles about something relevant to autism, I post it too. And while NAA-NEO does some of the resource and article posting, we are also in the process of fundraising for families like yours, which is our main goal.
I'm not sure it is their main goal...I think their main goal is to push neurofeedback and biomedical. I have seen very little about special ed law lately, although they are trying to schedule an IEP resource meeting with Judith Saltzman, who practices SpEd law here in town. The bulk of the workshops are about gluten free casien free diet and immune system malfunction due to (you guessed it) vaccines. In short, voodoo.
Therefore I can only provide resources to the mailing list if I have the time or if I happen to see it someplace else and repost it. I we are unable to provide a balanced, scientific newsletter filled with the info you requested on a regular basis. I recommend that you join other groups for this type of resources on Yahoo or elsewhere, just go a search for autism, aba, autism and education, etc. as we do not specialize in any of these particular areas.
Is she admitting that their newsletter is unbalanced and unscientific?
I posted about the vaccines issue b/c I thought it was relevant because 2 cases were yesterday defeated in vaccine court, which is an establishment by government, deciding about the safety of vaccines for all, with overwhelming conflicts of interest. I personally think that is disturbing. One case in 2008, btw, won in vaccine court, which proved that that are some cases in which a predisposition (in that case mitochondrial dysfunction) could be a risk factor and once vaccinated, the child could become autistic (the Hanna Poling case). There is no one size fit all medicine or education for the the general population, but especially not for our kids.
Information about the Poling case is linked below. The ruling in that case is very narrow and probably will never be used as precedent in future cases. I do not think the special masters have a conflict of interest at all--they are looking at real science in this area as it relates to toxic torts and pharmaceutical malfeasance and they come to the legal conclusion that there is no proximate cause of injury and therefore no awardable damages. That's first year Torts at law school. Pirate lawyer friends, feel free to help me out here.
Last, please don't be disturbed by biomedical emails. If you don't want to read them, delete them. For many, many folks, biomedical brought better health, and in some cases significant improvement in autistic symtoms. Many parents want this information from us.
I am not to take sides here, NAA-NEO is not. We are supporting it all. But if this is too much for you to deal with, let me know and I will take you off the list.
I am not disturbed by them. I am angry that resources are being wasted on talking about an issue that is not an issue. The plural of anecdote is not data. Stories are not science.
Here's what I will say one more time about vaccines: they save lives. My husband, the intrepid geneologist, is helping out the LDS church by indexing their geneological records online. So many death recores he indexes from the late teens and early twenties are full of children's names, children who died from rubella, typhoid, meningitis, the flu, whooping cough--diseases we can prevent. Diseases we never have to see again, if everyone would stop panicking and just get the damn shot.
My kid may have special learning and developmental needs, but at least she won't die from the measles.
http://news.yahoo.com/s/ap/20090212/ap_on_go_ot/autism_ruling
http://content.nejm.org/cgi/content/full/358/20/2089
http://www.nytimes.com/2009/01/13/health/13auti.html?_r=1
http://www.newsweek.com/id/165644/page/1
http://blogs.discovermagazine.com/badastronomy/2009/01/17/alison-singer-autism-hero/
http://blogs.discovermagazine.com/badastronomy/2008/08/22/antivaxxers-must-be-stopped-now/
Thursday, January 1, 2009
Bouncing and the elusive cup
American Bouncers did a special program for the National Autism Association - Northeast Ohio (NAA-NEO). If you had a special needs child, you could do bouncing (on the BIG bouncers) with similarly situated children and their families during Christmas break. Well. It was terrific! There were all different kinds of kids there (meaning kids whose needs were unique, from language to social skills to physical prowess) and from what I saw everyone had fun on their own terms. Our kids went wild for the bouncing....Ellie even taught herself to climb the "rock wall" bouncer and go down the 10 foot slide on the other side. They offered a nice snack room with the Wiggles on the big screen and no pressure for perfect behavior. However, I sure got it! My girls were right on target with listening and sharing. It was a joy to see them having so much fun.
That being said, today Ellie drank from an open cup for really the first time. She has resisted the cup because (we think) she doesn't like the surprise sensation of cold water on her if she spills. However, today she was very confident and let Bill help her. No pics, of course. Emma applauded. This was success.
Monday, October 20, 2008
Jenny McCarthy, or, You Knew This Was Coming
"We believe what helped Evan recover was starting a gluten-free, casein-free diet, vitamin supplementation, detox of metals, and anti-fungals for yeast overgrowth that plagued his intestines. Once Evan's neurological function was recovered through these medical treatments, speech therapy and applied behavior analysis helped him quickly learn the skills he could not learn while he was frozen in autism. After we implemented these therapies for one year, the state re-evaluated Evan for further services. They spent five minutes with Evan and said, "What happened? We've never seen a recovery like this."
from http://www.cnn.com/2008/US/04/02/mccarthy.autsimtreatment/index.html
1. The last time I checked, the gastrointestinal system and the neurological system were not the same thing. I mean, I'll ask Dr. Horn, who lives around the corner and is a real, live, breathing neurologist, but I'm pretty sure.
2. If this child had several food issues, and lots of kids do, then sure, starting a diet that would assist with his ability to properly digest food would be appropriate. But not every kid on the spectrum has this. Ellie doesn't. The kids in her class don't.
3. Here's the problem: lots of parents start a crazy diet and simultaneously start behavior therapy and speech services and whatever else they deem appropriate. So the child begins to improve. Well, is it the diet? Or the services? Without a control, who knows? McCarthy says she did one before the other. I can't believe any parent who knew behavior services were needed would wait out a diet before starting with professionals. Who says, well, little Snowflake here needs speech, play therapy and OT, but I'm just going to go with this diet first? Please. Basic research rules tell us, no control, no way to know, no data.
"We believe autism is an environmental illness. Vaccines are not the only environmental trigger, but we do think they play a major role."
4. FAIL.
5. People are thanking God and Sabins & Salk for eliminating polio. Childhood disease kills children. KIDS CAN DIE FROM THE MEASLES. Vaccines do not cause autism. Science says so, and I go with science over Jenny any day. This is how the kid's brain is, how it was hardwired. That's difficult to accept, but it's better than playing the blame game. On everyone.
I'm glad Jenny's son has improved. I wish his mother weren't a wackjob. She should be talking about the benefits of early treatment, intensive therapy, and supportive parenting, not pointing her finger at the medical profession, who I truly believe want to do everything they can to work with this problem. I know the doctors we know do.
Get your kid vaccinated. You will save his life. He will thank you.
from http://www.cnn.com/2008/US/04/02/mccarthy.autsimtreatment/index.html
1. The last time I checked, the gastrointestinal system and the neurological system were not the same thing. I mean, I'll ask Dr. Horn, who lives around the corner and is a real, live, breathing neurologist, but I'm pretty sure.
2. If this child had several food issues, and lots of kids do, then sure, starting a diet that would assist with his ability to properly digest food would be appropriate. But not every kid on the spectrum has this. Ellie doesn't. The kids in her class don't.
3. Here's the problem: lots of parents start a crazy diet and simultaneously start behavior therapy and speech services and whatever else they deem appropriate. So the child begins to improve. Well, is it the diet? Or the services? Without a control, who knows? McCarthy says she did one before the other. I can't believe any parent who knew behavior services were needed would wait out a diet before starting with professionals. Who says, well, little Snowflake here needs speech, play therapy and OT, but I'm just going to go with this diet first? Please. Basic research rules tell us, no control, no way to know, no data.
"We believe autism is an environmental illness. Vaccines are not the only environmental trigger, but we do think they play a major role."
4. FAIL.
5. People are thanking God and Sabins & Salk for eliminating polio. Childhood disease kills children. KIDS CAN DIE FROM THE MEASLES. Vaccines do not cause autism. Science says so, and I go with science over Jenny any day. This is how the kid's brain is, how it was hardwired. That's difficult to accept, but it's better than playing the blame game. On everyone.
I'm glad Jenny's son has improved. I wish his mother weren't a wackjob. She should be talking about the benefits of early treatment, intensive therapy, and supportive parenting, not pointing her finger at the medical profession, who I truly believe want to do everything they can to work with this problem. I know the doctors we know do.
Get your kid vaccinated. You will save his life. He will thank you.
Saturday, October 18, 2008
Rocking the Pixie, or, Miss Hepburn, We're Ready for You
Ellie is a hair twirler. It might be just a thing she does, like kids who suck their thumb. The problem is that her hair gets matty and a little wonky looking. So we rock the pixie. Sal cuts it, of course. Here's the thing with kids with ASDs--sometimes haircuts are a no-go. Let's not even get into haircuts in a salon with people chattering and hairblowers going. So what we do is go at the end of day, with no one else getting serviced, after nap. That seems to nip the anxiety nonsense in the bud. Now lest you think I'm just a no-frills hair kind of gal, if the girls would let me do their hair, I'd do it. I am all about the hair dodad. But they won't, so it's short hair for them.
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