Gus had an appointment with the Developmental Specialist on Wednesday, which of course through my new found sense of relative equanimity out the window. He seems to think that we should consider trying Gus on ADHD medication in the fall. He'd start with a low dose of Ritalin and see what happens. One thing I'm pretty well convinced of is that I don't want my son on drugs. I've got two major concerns, just about the physical impact of those drugs:
Increased heart rate
Decreased appetite
My child already has a pretty speedy heart rate; I can't imagine giving him something that would speed it up even more. That seems ludicrous to me. And he's skinny as a rail, despite eating as much as he can get his hands on. He certainly does NOT need to lose his appetite.
These are just the immediate physical problems that I'd worry about. Then there's the long range effects, which I refuse to believe don't exist as the doctor keeps trying to assure me. And do I really want to start a seven-year-old on the road to a drug dependency? I just can't see my way clear to that right now. Also, my husband was put on Ritalin as a kid for a short time; all it did was zonk him out. He didn't focus any better. This suggests to me that Gus might have the same result.
In my panic, I suggested to my husband that maybe we should try gluten free, just to be sure. Why should it be easier to consider drugs than dietary change? He said he'd go along with it, but was clearly not pleased. That night I started thinking, again.
If I look at each of Gus's 'issues' individually, I can trace every one back to myself or my husband. His biggest problem (academically) by far is attention span and difficulty with sustained attention. Both his parents continue to live with that. I don't have ADHD, but I've always had a wandering mind. No one ever thought twice about it because I was a straight-A student. I also talked incessantly in school; Gus talks incessantly all the time. Most of the hyperactivity and attention stuff, not to mention the fine motor skills are things that my husband still struggles with. I've had loads of sensory issues forever, including trouble with noise, cold and physical contact (getting a massage is like torture most times). But for all those difficulties Gus seems to have inherited from us, he's also picked up an incredible memory, a high level of intelligence and a lovely affinity for music (perfect pitch, even though he can't play an instrument or read music). So I'm not trying to make excuses or diminish his successes, just making the point that as far as I'm concerned his weaknesses are genetic, and it's not unreasonable to note that some genetic conditions worsen with each generation.
Does any of this mean that he wasn't effected by mercury? No. I double checked with the specialist and apparently, they DID NOT test for mercury a s I thought. Only lead. And, we realized this morning that last summer, my father-in-law had broken one of those new lightbulbs - the ones with the mercury in them (which I didn't know at the time). Hm...interesting to note. I wonder what they would have found if they DID do the mercury screen after that. The medical field amazes me sometimes. I think I will pursue this, just out of curiosity, but that doesn't mean I'm heading towards chelation - let's be clear on that for now.
I tried an experiment last night. We had taken the kids out for MM's birthday. I tried to steer her towards a Japanese hibachi place, but she was set on a steak house. So I decided to ease up on the dairy ban for a night, just to see what happened. Gus had a cheeseburger and mashed potatoes. By the time we got home, he was very gassy and his use of words slipped. He was still talking, don't get me wrong - the difference was very subtle. But he wasn't being as clear or lucid as I've come to expect. The past two nights, he's been exhausted to the point of tears. The first night he curled up in my lap and clearly told me what was upsetting him. Last night, he did the same thing, but part of what he was trying to tell me came out mumbled and garbled. Even this morning, my husband was trying to talk to him and had to remind him to use his words. Gus was talking like a Pokemon more than using his words. Was this in response to dairy? Maybe, maybe not. But I think I'll stick to casein-free for a while longer because if nothing else, the air in the house will be more breathable without it.
Friday, May 2, 2008
Wednesday, April 30, 2008
Straddling that Yellow Line in the Middle of the Road
I haven’t made a post in a while because I’ve been doing lots of reading, probably too much, and thinking. I seem to be at a sort of crossroads. But maybe I’m really not – I’m not entirely sure what to think anymore.
I went to a documentary premier a couple of weeks ago, followed by a panel of biomedical intervention specialists: a couple of DAN! Doctors, a homo-toxicologist, a holistic nutritionist and a reporter, David Kirby, author of Evidence of Harm. The movie being screened was entitled Autism Yesterday, and it profiled five families who had ‘recovered’ their children of autism with the use of biomedical interventions.
I was a bit skeptical when I first heard about the screening and panel; I almost blew it off. But I figured it wouldn’t hurt to listen, so I accompanied a friend, a dietician. I wasn’t exactly off base in my skepticism. Each family showed video of their children having meltdowns, head banging, toe-walking, inability to speak, the typical behaviors associated with autism. And then miraculously following either special diets or chelation or some other combination of biomedical treatments, they proclaimed their children recovered and then showed them talking and behaving almost typically. So here’s my first problem: It they are almost typical, and still need the myriad therapies, how can they be called recovered? They were greatly improved, skillwise, and seemingly happy kids, but I don’t think that can honestly be touted as a full recovery.
There was a lot of talk about mercury and vaccinations – more information than I have been able to process truthfully. I bought David Kirby’s book because I wanted to read what he had to say. It’s quite disturbing. I haven’t finished it yet, but so far every indication is that, whether or not it caused the rise in autism diagnoses, an awful lot of kids seem to have been given way more mercury, in the form of thimerisol, in their first year of life during the late 90’s. This disturbs me, yes. But then again, I’m not sure that I want to go running to our old pediatrician to find out exactly how much mercury was pumped into Gus.
My husband and I discussed some of these theories and determined that they don’t seem to apply to Gus – none of them. No genetic abnormalities were found in three rounds of genetic testing, which I stopped because my son is not a pin cushion. He was tested for heavy metals and his numbers were not alarmingly high, so I’m not really inclined to chelate him on the possibility that there might be mercury hiding out in his body somewhere. And he has never shown the severe gastric distress that most of the activist parents describe in their children, so I see no reason to remove gluten from his diet. I’m even wondering about the benefits of our non-dairy existence and may ease up on the ban slightly. Why? Because the kids like their cheese.
All the stuff I’ve read from that side of the debate, aside from giving me nightmares (literally) led me to seek out counter-arguments. So there’s this other school of thought that believes autistics just need acceptance and to not be treated like damaged goods. I agree with that. They don’t seem to buy into the mercury/vaccine theories or the biomedical theories…I can understand that as well. Nothing, including any genetic defect, seems to fit my Gus. I know he wasn’t ‘made autistic’ by vaccines, although they may have exacerbated what was already present. The day he was born he was different and sensitive. He just…was.
Where I start to diverge from the more ‘positive’ camp of thinkers is that while I see my son as a blessing, I don’t see his autism as a necessary blessing…or a curse. It is what it is, I guess. It’s for damned sure not all roses. I’ve never been one to insist that the glass is half full; there is half the water’s capacity and I can’t be bothered to judge beyond that most times. Sometimes, life with an autistic child, it’s hard, but the rest of our life - bills, work, family - is also hard at times too. As a matter of fact, Gus is often easier to raise than his five-year-old, typically-developed (so far – I’m waiting for a teacher to tell me she has motor skills issues because why wouldn’t she with an autistic brother) sister. This difference has little or nothing to do with his autism; he’s just an easy-going kid who likes peace around him. But I worry more about bills than I do about his autism, and I get more upset about family matters than I do about his behaviors.
I’ve started trying to remove environmental toxins from the house. Not because he’s autistic, but because he’s got eczema. If there are ingredients in the laundry detergent known to cause irritation, maybe removing them will make this summer a bit less ‘steroid-y’ trying to cope with the flare-ups. By the way, the dairy removal also had a little to do with his physical health and sensitivities, not just the mental ones.
When I tell Gus to stop humming while he’s eating in a restaurant, it’s not because I’m ashamed or that people will look at him funny, although I certainly don’t appreciate when they do. But I was raised to have consideration for the people around me. MM isn’t allowed to crawl under the table or climb on the seats either – because it’s annoying and inconsiderate to the people around us. Should I expect that the world should just suck up whatever my kids dish out because they’re kids or because one of them is autistic? That’s craziness. I don’t care if my son runs through the house (except when it starts making me dizzy), but he has to know that he can’t do it in school. Why is this an unacceptable expectation or trying to make him something he’s not?
I don’t need my children to be perfect or anyone’s version of ‘normal,’ I just want them to be healthy and happy and compassionate. I want them to be able to navigate the world safely and independently because realistically I won’t be around forever. But I have no intention of tormenting Gus with treatments or medications; he’s not sick, just different and learning every day.
I doubt that I’ve made a definitive point here. This is just some of what’s jumbled up in my brain, trying to find an escape. Hopefully tonight there will be no nightmares.
I went to a documentary premier a couple of weeks ago, followed by a panel of biomedical intervention specialists: a couple of DAN! Doctors, a homo-toxicologist, a holistic nutritionist and a reporter, David Kirby, author of Evidence of Harm. The movie being screened was entitled Autism Yesterday, and it profiled five families who had ‘recovered’ their children of autism with the use of biomedical interventions.
I was a bit skeptical when I first heard about the screening and panel; I almost blew it off. But I figured it wouldn’t hurt to listen, so I accompanied a friend, a dietician. I wasn’t exactly off base in my skepticism. Each family showed video of their children having meltdowns, head banging, toe-walking, inability to speak, the typical behaviors associated with autism. And then miraculously following either special diets or chelation or some other combination of biomedical treatments, they proclaimed their children recovered and then showed them talking and behaving almost typically. So here’s my first problem: It they are almost typical, and still need the myriad therapies, how can they be called recovered? They were greatly improved, skillwise, and seemingly happy kids, but I don’t think that can honestly be touted as a full recovery.
There was a lot of talk about mercury and vaccinations – more information than I have been able to process truthfully. I bought David Kirby’s book because I wanted to read what he had to say. It’s quite disturbing. I haven’t finished it yet, but so far every indication is that, whether or not it caused the rise in autism diagnoses, an awful lot of kids seem to have been given way more mercury, in the form of thimerisol, in their first year of life during the late 90’s. This disturbs me, yes. But then again, I’m not sure that I want to go running to our old pediatrician to find out exactly how much mercury was pumped into Gus.
My husband and I discussed some of these theories and determined that they don’t seem to apply to Gus – none of them. No genetic abnormalities were found in three rounds of genetic testing, which I stopped because my son is not a pin cushion. He was tested for heavy metals and his numbers were not alarmingly high, so I’m not really inclined to chelate him on the possibility that there might be mercury hiding out in his body somewhere. And he has never shown the severe gastric distress that most of the activist parents describe in their children, so I see no reason to remove gluten from his diet. I’m even wondering about the benefits of our non-dairy existence and may ease up on the ban slightly. Why? Because the kids like their cheese.
All the stuff I’ve read from that side of the debate, aside from giving me nightmares (literally) led me to seek out counter-arguments. So there’s this other school of thought that believes autistics just need acceptance and to not be treated like damaged goods. I agree with that. They don’t seem to buy into the mercury/vaccine theories or the biomedical theories…I can understand that as well. Nothing, including any genetic defect, seems to fit my Gus. I know he wasn’t ‘made autistic’ by vaccines, although they may have exacerbated what was already present. The day he was born he was different and sensitive. He just…was.
Where I start to diverge from the more ‘positive’ camp of thinkers is that while I see my son as a blessing, I don’t see his autism as a necessary blessing…or a curse. It is what it is, I guess. It’s for damned sure not all roses. I’ve never been one to insist that the glass is half full; there is half the water’s capacity and I can’t be bothered to judge beyond that most times. Sometimes, life with an autistic child, it’s hard, but the rest of our life - bills, work, family - is also hard at times too. As a matter of fact, Gus is often easier to raise than his five-year-old, typically-developed (so far – I’m waiting for a teacher to tell me she has motor skills issues because why wouldn’t she with an autistic brother) sister. This difference has little or nothing to do with his autism; he’s just an easy-going kid who likes peace around him. But I worry more about bills than I do about his autism, and I get more upset about family matters than I do about his behaviors.
I’ve started trying to remove environmental toxins from the house. Not because he’s autistic, but because he’s got eczema. If there are ingredients in the laundry detergent known to cause irritation, maybe removing them will make this summer a bit less ‘steroid-y’ trying to cope with the flare-ups. By the way, the dairy removal also had a little to do with his physical health and sensitivities, not just the mental ones.
When I tell Gus to stop humming while he’s eating in a restaurant, it’s not because I’m ashamed or that people will look at him funny, although I certainly don’t appreciate when they do. But I was raised to have consideration for the people around me. MM isn’t allowed to crawl under the table or climb on the seats either – because it’s annoying and inconsiderate to the people around us. Should I expect that the world should just suck up whatever my kids dish out because they’re kids or because one of them is autistic? That’s craziness. I don’t care if my son runs through the house (except when it starts making me dizzy), but he has to know that he can’t do it in school. Why is this an unacceptable expectation or trying to make him something he’s not?
I don’t need my children to be perfect or anyone’s version of ‘normal,’ I just want them to be healthy and happy and compassionate. I want them to be able to navigate the world safely and independently because realistically I won’t be around forever. But I have no intention of tormenting Gus with treatments or medications; he’s not sick, just different and learning every day.
I doubt that I’ve made a definitive point here. This is just some of what’s jumbled up in my brain, trying to find an escape. Hopefully tonight there will be no nightmares.
Monday, April 21, 2008
Absolutely amazing
This little boy never fails to amaze me. He had to have 2 baby teeth out today. I fully expected a disaster and prepared accordingly. I made sure that my husband was home to take care of MM so that I could fully attend to Gus. I explained in very vague terms what would be happening today as we arrived at the dentist. We had planned to use Nitrous Oxide, but the machine was broken. I was tempted to just reschedule, but I decided we would try and see what happened.
The dentist was absolutely wonderful. He went very slowly with the Novocaine injections. Gus winced a few times, but he was the calmest I've ever seen him in this type of situation (he had to have stitches once and also underwent another surgery). And then with a few twists, the teeth were out! No fuss, no sweat!
I am so proud of him, I can't even believe it. He's a way better patient than I've ever been!
Today was a big win and I think the tooth fairy will be bringing a pretty sweet prize tonight!
The dentist was absolutely wonderful. He went very slowly with the Novocaine injections. Gus winced a few times, but he was the calmest I've ever seen him in this type of situation (he had to have stitches once and also underwent another surgery). And then with a few twists, the teeth were out! No fuss, no sweat!
I am so proud of him, I can't even believe it. He's a way better patient than I've ever been!
Today was a big win and I think the tooth fairy will be bringing a pretty sweet prize tonight!
Wednesday, April 16, 2008
So much going on
Gus just turned seven this week. And even beyond that lie has been...eventful. We went to the autism fair, and while I didn't learn much in the way of new information, I did see some of his old teachers/therapists and that was wonderful!
I have been gathering a great deal of information from other sources mostly about dietary changes, nutritional supplementation, yeast, yada yada. It's too much to go into until I can process it all, but I'm working on doing just that. Processing.
I've started experimenting with probiotics a little - just soy yogurt and now acidophilus. There's a panel that I will be attending tomorrow of therapists, DAN doctors and nutritionists regarding the biomedical take on autism. Apparently the buzz these days (at least in that field) is that autism, ADHD, asthma and allergies are all treatable and reversible with diet, supplementation and detox. I don't know how comfortable I am with some of the detox methods, but I feel like I have to at least be informed.
The other issue I find myself having is that I wonder where one draws the line between trying to help your child and trying to 'fix' your child. Where does acceptance come into play? How much unpleasantness do these children have to experience all in the name of making them 'better?'
Speaking of unpleasantness, I will be attempting to have Gus's bottom from teeth pulled on Monday. Hopefully, nitrous oxide will help keep him calm enough. The permanent teeth are fully in and growing into (toward the tongue) his mouth. If we wait too long, they may not come forward on their own. I am not looking forward to this, but it seems necessary.
We've tried a couple of karate classes in the past 2 weeks and Gus did better than expected. I don't know if we'll sign him up for the year - that will be determined after a few more classes. But he seems to like it.
So that's where we've been. Hope all is well with you & thanks for reading!
I have been gathering a great deal of information from other sources mostly about dietary changes, nutritional supplementation, yeast, yada yada. It's too much to go into until I can process it all, but I'm working on doing just that. Processing.
I've started experimenting with probiotics a little - just soy yogurt and now acidophilus. There's a panel that I will be attending tomorrow of therapists, DAN doctors and nutritionists regarding the biomedical take on autism. Apparently the buzz these days (at least in that field) is that autism, ADHD, asthma and allergies are all treatable and reversible with diet, supplementation and detox. I don't know how comfortable I am with some of the detox methods, but I feel like I have to at least be informed.
The other issue I find myself having is that I wonder where one draws the line between trying to help your child and trying to 'fix' your child. Where does acceptance come into play? How much unpleasantness do these children have to experience all in the name of making them 'better?'
Speaking of unpleasantness, I will be attempting to have Gus's bottom from teeth pulled on Monday. Hopefully, nitrous oxide will help keep him calm enough. The permanent teeth are fully in and growing into (toward the tongue) his mouth. If we wait too long, they may not come forward on their own. I am not looking forward to this, but it seems necessary.
We've tried a couple of karate classes in the past 2 weeks and Gus did better than expected. I don't know if we'll sign him up for the year - that will be determined after a few more classes. But he seems to like it.
So that's where we've been. Hope all is well with you & thanks for reading!
Tuesday, April 1, 2008
World Autism Awareness Day
I learned from Gus's teacher that CNN will be running programming all day tomorrow, April 2nd, dealing with Autism Awareness. I checked some of the features on their site today and it seems like it would be worth checking in with at some point. Just thought I'd share.
Friday, March 28, 2008
Autism Information Fair - Westchester County, NY
A good friend of mine emailed this to me, so I thought I'd share:
Navigating the Spectrum and The Westchester County Department of Community
Mental Health are proud to sponsor The Second Annual Autism Information Fair
Sunday April 6th from 11 am to 4 pm
Westchester County Center
198 Central Avenue - White Plains, NY
Parents, therapists, educators, health care professionals, school
administrators and anyone who cares about a child on the spectrum are invited to
join us for a day of education and empowerment. Connect with families affected
by ASDs and network with knowledgeable and encouraging professionals. Learn
about Interventions and Services available for all ages, from toddlers to
adults. Visit Over 40 Scheduled Information Stations Including Applied Behavior
Analysis - Relationship Development Intervention - DIR and Floortime TEACCH -
Occupational Therapy & Sensory Integration - Speech & Language Pathology
Physical Therapy - Medical Interventions - Nutritional & Biomedical
Interventions Special Education Law & Advocacy - Assessments &
Evaluations - Family Resources Literacy Development - Math Development - Post
Secondary Educational Options Self-Injurious Behavior Management - Family
Support Services - Recreational Programs Respite Services - Social Skills
Programs - Transitional Services - Vocational Training Residential Options -
Family Management - Auditory Therapies - Vision Therapy Chiropractic - Cranio
Sacral Therapy - Interactive Metronome - Creative Arts Therapies Research
Studies - Complementary & Alternative Treatments - Plus Many More...
Breakout Lecture Schedule
Toddlers and Preschoolers School Age Children Adolescents & Young
Adults
11:30 - 12:30 1:00 - 2:00 2:30 - 3:30-
Getting a Diagnosis - It's Never Too Late to - Puberty and Sexuality-
Securing Services Try Something Different - Transitional Services-
Multidisciplinary Approaches - Friends and Fitting In - Vocational
Training-
Therapeutic Options - Peer Pressure & Bullies - Residential Options-
Educational Advocacy
FREE ADMISSION - FAMILIES WELCOME FUN & ATTRACTIONS FOR CHILDREN
BOUNCERS - BALL POOL - BIG APPLE CIRCUS CLOWNS
Navigating the Spectrum - www.navigatingthespectrum.org -
(914) 826-5300
Dept Community Mental Health - www.westchestergov.com/mentalhealth
- (914) 995-5220
Saturday, March 22, 2008
Summer Safety Concerns
There's always a fine line that I find myself walking between doing too much for Gus, trying to protect him too much, and allowing him to learn things for himself. So I tried last weekend to let him ride his bike without hovering over him. He went down a hill, not a steep one, but steep enough to gain a decent amount of momentum. I was shouting for him to use his brakes, but apparently he's forgotten how since last year. He nearly ended up in the main road - he didn't even think to turn. His father was close enough to catch and stop him. We won't be taking that chance again.
So we took the bikes out again today and again, I tried to get him to use his brakes (on a secluded side road) and this time he went up on a curb and almost into a stream. Insert deep sigh here. I was a little frustrated by then, so I told him he would not be allowed to ride outside of our parking lot until he learned to use his brakes. Then I marched him, well, rolled him actually, back to said parking lot.
There was a group of teenage boys wrestling near the house. Amazing how at almost seven years old, he's already concerned about his image to the big boys because as I was trying to help him up the hill, he pushed me away.
Anyway, we practiced pedaling and stopping, or at least we tried to. I feel bad for him. He doesn't have the coordination to pedal backwards to stop, but doesn't have the hand strength to use the hand brake. It doesn't help that the brakes seriously need tightening, more than I can do myself. I'm predicting a trip to the bike shop in the near future.
Is it imperative for him to be able to ride a bike? No, not really. But he likes it and I'd like him to be able to do it. But I can't just let him run amok because he doesn't have the safety awareness to know when he's heading for trouble.
It's going to be an interesting summer.
So we took the bikes out again today and again, I tried to get him to use his brakes (on a secluded side road) and this time he went up on a curb and almost into a stream. Insert deep sigh here. I was a little frustrated by then, so I told him he would not be allowed to ride outside of our parking lot until he learned to use his brakes. Then I marched him, well, rolled him actually, back to said parking lot.
There was a group of teenage boys wrestling near the house. Amazing how at almost seven years old, he's already concerned about his image to the big boys because as I was trying to help him up the hill, he pushed me away.
Anyway, we practiced pedaling and stopping, or at least we tried to. I feel bad for him. He doesn't have the coordination to pedal backwards to stop, but doesn't have the hand strength to use the hand brake. It doesn't help that the brakes seriously need tightening, more than I can do myself. I'm predicting a trip to the bike shop in the near future.
Is it imperative for him to be able to ride a bike? No, not really. But he likes it and I'd like him to be able to do it. But I can't just let him run amok because he doesn't have the safety awareness to know when he's heading for trouble.
It's going to be an interesting summer.
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