I talk about a lot on this blog. Religion, politics, science, rambling thoughts—stuff like that. But the core of this blog is supposed to be about my journey as a woman and mom who has ADHD and Asperger’s Syndrome. It was also supposed help chronicle the journey shared with my daughter, “The Munchie.” Continue reading
One of my Facebook friends shared the excellent “Dear Parents, You’ve Been Lied To” article. Here is the response he got from one of his friends.
This is the response I left
[Name], hopefully I can help here.
1. If a family believes a vaccine was defective or otherwise caused injury, they can register the complain with the National Vaccine Injury Compensation program. The complaints are investigated, and if there truly is a vaccine injury, there is compensation. Actual injuries are rare, and people have tried to get compensation for many, many complaints that have been disproven. I believe some have been paid out when it’s determined that it costs less to pay out than fight it, but that’s not proof of injury. http://www.hrsa.gov/vaccinecompensation/index.html
2. The rise in autism diagnosis is almost solely because the diagnostic criteria have greatly expanded. People are being diagnosed as on the autistic spectrum now who never would have been considered autistic years ago. I’m proof of that. I am mildly autistic/have Asperger’s Syndrome. My daughter is autistic, but she would’ve been diagnosed with mental retardation just twenty years ago. There are more than 100 studies which have disproven the supposed link between vaccination and autism, and the paper which supposedly showed a link was proven to be fraudulent and therefore retracted. The physician behind it lost his license. Continue reading
This post is a bit of a whine fest, but if you read it, you’ll learn something. I promise. So, let me tell you about my long day…
Sometimes I need a firsthand reminder of how hard autism can be. Today is one of those days. I’m on overload. Seriously. Last week was full of anxiety over my kids’ safety in the vehicle we got last year, which turned out to be too small. Friday and Saturday were spent looking at options, choosing, and then leasing one. Taxes Friday night. Adaptive PE Track and Field Meet Saturday (between looking at vehicles). Church followed by a committee meeting (only three other people) Sunday. Each day lined with sciatica that ranged from dull to blazing. Kids yelling and screaming, meltdowns. Baby teething. More running around today to finish the vehicle deal. Get a call from daughter’s teacher about daughter acting up at school (on “red”). Lunch at Panera was stressful with Distractable Baby who made nursing in public difficult. More running around. Pain spiking. Tylenol 3 taking forever to kick in (and only somewhat). Doctor visit for baby with bruised eyeball (thank goodness not something worse) and big brother being annoying while we were trying to look at the baby. And even right now, 6yo boy picking on the 11yo who is at the end of her rope for the day and just wordlessly yelled.
The child in me desperately wants to go into thermonuclear meltdown. No one thing is all bad (well, the sciatica is up there), but there has been too much happening in past few days to process well. I need to decompress more frequently than other people, and I haven’t been able to over the past few days. My inner child wants to fracture and then piece herself back together. But I’m a grownup. A mom of three kids. I don’t get to do any of that. But I DO get to ask my husband to let me decompress tonight. It’s not working well, because there constant noise now that the TV is off (when on, the show cancels out most other noise). The stress is shooting up, and I feel guilty. But it’s bedtime. It’ll be quiet soon, except for the baby, who will need to nurse soon.
Most adults would, I suspect, would have passed the last few days by feeling a little stressed out but able to handle it and even get more done. They wouldn’t think to ask for decompression time. I try not to feel guilty for something that is not my fault. I didn’t ask to be wired like this.
All this brings me to my real point. It’s not about “poor me”, believe it or not. All this is reminding me that this is part of living with autism. I have “mild” autism (or Asperger’s, or High Functioning Autism (HFA)). Recognizing that I feel this way as part of the autism has helped me to know that I can get through it, and I know *why* it’s happening, and it’ll get better. But that still is not the point.
The point is that I’m lucky. After some decompression (whenever I finally get it), I’ll be okay and move on. Someone with moderate to severe autism must feel this way much more often. Maybe even all the time. That is terrifying. If I couldn’t communicate, I would panic. Heck, there were moments the child inside wanted to panic, but the adult was able to control it. For someone who isn’t privileged to have this gift of being able to back away from the ledge, this day could be their every day.
Insights like this are what we need to bring to the fore. Understanding this will help caretakers better relate to they are helping. So I am sharing my bad day because I can. I have a gift for expressing myself through writing, so I am doing so where many cannot. Please, take what you’ve learned here and remember it the next time someone melts down. Maybe, just maybe, it’ll help you to be the support you can be to a person in distress.
So…Part of being me is that I am prone to ups and downs. I’m not bipolar, but with my weird combination of Asperger’s, ADHD (inattentive type, if you want to be precise), mild depressive tendencies, OCD, and anxiety, it can mimic bipolar in some ways. I don’t handle stress well.
Things have been challenging as of late. The Dudeling is struggling in kindergarten and has started on Concerta. At age eleven, the Munchie is now a preteen, and with her intellectual delays, it comes out in meltdowns and shrieking outbursts and flay my nerves. The baby (the “Kidlet”) is fine, but he’s been fussy the past couple of days. Maybe new teeth, but who knows? Don’t get me wrong–I adore the kids, and actually, the Dudeling has had a great week and a half at school. I’ve been emphasizing how great that is. Same when the Munchie comes home on green. It’s just that the negative is easier to see right now. That’s on me, not the kids.
Besides all that, there’s the fact that there are a lot of sucky, nasty people in the world. There’s a lot of ignorance (much of it willful) in the world. And there’s a ton of injustice. That’s where the OCD gets me. I want to fix things or see things get better, but I have no control over that.
It gets hard to remind myself that the crappy days are temporary. Good things happen, and good people exist. But geez, some days, it’s hard to remember all that.
I’ll be fine, but seriously, I need a good day.
THAT OLD BLACK POT
That old black pot and depression days
Went together like the ocean waves.
You didn’t go to the store back then,
And to waste a soup bone was considered a sin.
You grew what you ate and cooked what you got,
And it all came out of that old black pot.
There was cabbage, collards and turnip greens,
Okra, squash and string beans,
Black-eyed peas, onions and tomatoes,
Fat back, gravy and mashed potatoes.
The men rolled logs and plowed the fields
And prayed for rain that the crops might yield.
They picked the cotton and pulled the corn,
Built a shed for a calf newly born.
Oh, but the strength these men have ‘got,’
And it all came out of that old black pot.
Update 27 January 2013:
Here is a list of newly-aquired links containing science-based information about vaccination. Several subjects are covered. Autism, ingredients, efficacy, and so on. After that list is the original post from 09 August 2013. Thank you!
Please do share this and feel free to reference this page when you need information either for your own research or to help educate people about vaccination.
AMERICAN ACADEMY OF PEDIATRICS information packet “Vaccine Safety: Examine the Evidence”: http://www2.aap.org/immunization/families/faq/vaccinestudies.pdf (This is an EXCELLENT source!)
ANGRY AUTIE (a blog by a person who is autistic) article: http://angryautie.wordpress.com/2013/09/18/the-definitive-reference-debunking-vaccine-autism-myth/
ANTIANTIVAX – Covering the different vaccinations, costs of vaccine-preventable disease (VPD), and more: http://antiantivax.flurf.net/
CHOP’s (Children’s Hospital of Philadelphia) Vaccine Education Center: http://www.chop.edu/service/vaccine-education-center/vaccine-safety/
INSTITUTE OF MEDICINE of the National Academies article: http://www.iom.edu/~/media/Files/Report%20Files/2013/Childhood-Immunization-Schedule/ChildhoodImmunizationScheduleandSafety_RB.pdf
I SPEAK OF DREAMS refutations to the list of papers that supposedly support the anti-vaccine hype: http://lizditz.typepad.com/i_speak_of_dreams/2013/08/-those-lists-of-papers-that-claim-vaccines-cause-autism-part-1.html
MARTIN’S PRIBBLE (a cool blog with really smart people who understand their vocations), special guest post by a psychologist, “The Psychology of Vaccine Denial”: http://martinspribble.com/2012/06/the-psychology-of-vaccine-denial-by-holly-aka-fearblandness/
NPR article “Must Science Murder Its Darlings?”: http://www.npr.org/blogs/13.7/2014/01/26/266784786/must-science-murder-its-darlings?utm_content=socialflow&utm_campaign=nprfacebook&utm_source=npr&utm_medium=facebook
POPULAR SCIENCE article “How to Argue with the Anti-Vaccine Crazies: A Guide”: http://www.popsci.com/science/article/2013-07/popsci-guide-anti-vaccine-claims
SKEPTICAL RAPTOR (a science-based site): http://www.skepticalraptor.com/vaccine.html
>>More to come as time allows. I do have three kids, one of whom is a sometimes-fussy baby!<<
I’m just providing a list of new links I’ve found. Better than conspiracy-based pages. If you still don’t like Forbes, WSJ, NYTimes, American Academy of Pediatrics, or medicine/research-based links, I can’t help you. But I ask you at least consider it. People are quick to jump to anecdote-driven websites and so on. Here’s the list:
2011, August: Vaccine Cleared Again as Autism Culprit
Article discusses other possible vaccine issues. Balanced piece. Excerpt:
Many children injured by vaccination have an immune or metabolic problem that is simply made apparent by vaccines. “In some metabolically vulnerable children, receiving vaccines may be the largely nonspecific ‘last straw’ that leads these children to reveal their underlying” problems, the report stated. (Bold emphasis mine.)
Autism Facts from the American Academy of Pediatrics
They have a Q&A about vaccines, many commons myths and questions about autism, and so on. They discuss the increase in diagnosis (awareness and better diagnoses, for one), that it likely begins before birth, and so on. Very interesting with links to more information. They also explain why measles, mumps, rubella, etc., aren’t “harmless.” There is a lengthy section addressing Andrew Wakefield’s 1998 paper, as well. Excerpt:
- Increasing evidence indicates that autism is determined while the baby is still in the womb, early in the pregnancy.
MMR/Measles Vaccine from Johns Hopkins
Many, many useful links. Excerpt:
- Lack of Association between Measles Virus Vaccine and Autism with Enteropathy
In a rigorous study, investigators from three institutions found no differences between children with autism and gastrointestinal disorders and control children who had gastrointestinal disorders, but not autism. There was no difference in the results of testing for measles vaccine virus in the intestine or with the timing of MMR and the onset of gastrointestinal disorders.These findings disprove the original hypothesis about measles vaccine and autism and refute an earlier study by one of the investigators. Parents should be confident in giving their children MMR as recommended by numerous experts and advisory groups.Horning M et al. “Lack of Association between Measles Virus Vaccine and Autism with Enteropathy: A Case-Control Study. PLoS ONE 2008;3(9):E3140. link to article (08/2008)
That’s all for now. I’m trying not to get spastic about it. For now, anyway, but as a mom, this stubborn resistance to science is driving me nuts. People will use Big Pharma’s solutions to fight cancer, lower their cholesterol, and so on, but then they turn around and scream at Big Pharma accusing it of trying to make money by hurting their kids. Confirmation bias, cognitive dissonance, whatever you want to call it, this trend is dangerous and frightening.
In the meantime, you can bet everyone in my house is vaccinated against pertussis (whooping cough). We have a baby due in October, and there have been outbreaks locally. Outbreaks directly attributed to the refusal to vaccinate. Babies have died. Now we’re afraid to take this baby out of the house until two weeks after he gets the dTAP vaccination at eight weeks of age. Nice world, ain’t it?
I posted the following in response to another mom whose child hasn’t been vaccinated since he was nine months old. He is autistic, and while she’s trying to listen to science, she’s still worried. I’m not going to link to that post because I don’t want this to be an attack on her in any way. I have a lot of respect for her. So I offered my general overview. Now I’m sharing it here. I didn’t link to specific sources because, frankly, they’re out there and easily found. I’ve linked to them in other posts. Anyway, here’s my response:
* * * * *
Many, many reputable studies have shown that vaccination has nothing to do with autism. For example: My daughter is autistic. My son and I have Asperger’s. I do not blame vaccination. We keep to the recommended schedule. The autistic spectrum can be traced in my family from mild to significant for generations. Before routine vaccination.
It is perfectly normal and even expected for there to be a reaction to getting a vaccination. It’s what’s supposed to happen. Not every person will get a fever or react, but some will. When your immune system is working, that’s what happens. Continue reading
Driving along today, I got angry that someone wouldn’t let me over as my lane was ending. She even looked over and yelled something at me. My best guess is something like “You knew that lane was ending!” I didn’t do anything wrong. She was just furious I dared to want to get over.
My reaction was to think some nasty words at her that I couldn’t say in front of the kids. Out loud, I said she wasn’t nice. As we trundled down the road, a thought whispered into my head: Wish peace on her. That felt weird. I wanted to be angry. I had the right to be angry. But…I was angry. Well, I can’t say I was perfect, because I took a bit of sinister delight in getting over in front of her a few miles later (safely, of course). But I did let go of the anger. And that made my day a bit less sucky.
I decided to use Fine Art America to start selling prints of my photos and art. This is mainly a post for links so you can find some neat things.
Pages I’m sponsoring:
Of course, feel free to explore the site. I hope you’ll consider my work, but if it’s not to your taste, there’s sure to be something else you’ll love!
I keep this reference sheet handy for those moments when I want to add a little something extra to what I’m typing. At the end, I’m also sharing an image with Facebook-specific codes for fun little extras!
HOW TO MAKE SYMBOLS WITH KEYBOARD
Hold down the Alt key, and type the numbers you see, but USE THE NUMBER PAD! Do not use the numbers across the top row of your QWERTY keyboard.
Alt + 0153….. ™… trademark symbol
Alt + 0169…. ©…. copyright symbol
Alt + 0174….. ®….registered trademark symbol
Alt + 0176 …°……degree symbol
Alt + 0177 …±….plus-or-minus sign Continue reading
Being on the autistic spectrum comes bundled with a lot of things, even if you’re considered to be “mildly” Asperger’s (or “high-functioning autistic”). One of those is SENSORY DISORDER. I capitalized it because that’s a big one.
Compared to many, my sensory issues are still mild. But when I’m stressed out or sick, those sensitivities are amplified. Right now, hearing and smell can drive me crazy. I can’t stand hearing people breathe, eat, or (in poor Xife’s case) blow their noses. Especially if there’s a sharp vibration. Those sounds are extremely agitating, even though the people who make those sounds can’t help it. Like right now, Xife is locked away in the guest/baby room blowing the heck out of his nose. He can’t help it, and I feel really bad about it, but it’s like fingernails on a chalkboard times five. If he wasn’t down the hall behind a closed door, it would be times fifty. Imagine someone scratching the soft inner side of your forearm with that fingernail over and over and over. The first few times, it’s okay. Then it’s irritating, then it gets to where you’re sure there’ll be blood, and you desperately need it to stop. Lucky for me, it just gets to the agitating level, and I can be a grownup and find a way to deal. Not so for everyone.
I’m not sharing this to embarrass Xife . I really do feel bad that he’s sick, and I don’t want to be agitated at him. Unfortunately, stress plus hormones have made this particular sensory issue twice as bad as it might be normally. This is a part of having a sensory disorder. And this is a MILD version of it. There are people have severe SD, and that one noise would cause more than agitation. Meltdowns in young kids who haven’t learned coping techniques comes to mind.
So there’s a small window into my world, and an even smaller window into what it’s like for someone who constantly has to deal with nerve-grating sensory issues. This is a random sharing, as autism and sensory disorders happen to be on my mind at the moment. I’m dealing fine with this particular event (I’m just annoyed and able to be nice to him about it), but it’s not always like that for me, and definitely not like this for others who are anything but “mild.”