Special Needs Feed

If You Want to be on the Mailing List:

 

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Yes, I am starting a list for those who want to be in my new membership group – the one for people who are serious about building alternative systems to the one that is falling down around us. (See below. Also, I forgot to mention in that post, both protection and justice. Those need new systems too, and will be part of our discussions.)

If you'd like to be on this list, please just email me. You can find my email at the "email me" link to the right of this post - or... right here: BretigneATgmailDOTcom.

And welcome aboard!

 

 


An Announcement

 

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I've been saying for years now that the most important thing we can do – those of us who care about liberty and about having a free society to live in – is to build the foundations of that society now. Not to complain about the increasingly authoritarian society we find ourselves in, but to build its replacement.

For me, this is especially true in the realm of what most of us call "social services": Caring for the most vulnerable, education, and health care. (For some background as to how the state has stifled private solutions in these areas, see my video on Sanctuary Jurisdictions for Medical Freedom.) And, as I just got home from five weeks in the hospital with our daughter, dealing with her seizures, the need for solutions here is especially fresh for me.

Now, halfway into 2021, and amid the wreckage that has been wrought – in healthcare, in education, and in the lives of the most vulnerable among us – this focus is needed more than ever. For me, that means that it is time to stop talking and start building.

So I am going to be putting my podcast on hold – not stopping it entirely, but I will no longer commit to producing an episode each week. If something comes up, and especially if it is directly related to what I am building, then I will put out the occasional episode. The same goes for my writing and blogging generally.

What will I be doing instead? A few things, starting with creating a small, Private-Membership-Association school, and with laying the groundwork for a self-sustaining home and community for those with intellectual disabilities that require them to have support and care throughout their lives.

There will be many pieces to this larger project, including healthcare, therapy, vocational training, and hopefully the incorporation of elder care. Ultimately, we will be looking for other like-minded entrepreneurs to partner with us.

And of course, these projects are part of a much bigger picture. I'm not the only one who realizes that this is what we need to be doing. All over the world, people are looking into and starting intentional communities, Private Membership Associations, and other structures for carving out spaces where people can live as they choose. There has long been a need for this, but after the sudden (it wasn't really all that sudden) takeover of our lives by authoritarian overlords, the need has become urgent.

So we need to be talking with each other. I don't mean that we all need to agree about precisely what our solutions will look like, or even have a shared grand vision. Only that we share the core principle of human liberty, and a desire to connect, support each other, share ideas, and in some cases collaborate.

To this end, I will be starting a membership group for people who are serious about building free societies. If you have created, or are looking to create, a PMA, a mutual-aid society, a "sanctuary for freedom" city, any kind of alternative healthcare or health insurance project, an organic food co-op or network, homeschooling co-op, or are serious about creating any kind of alternative support system and/or society that respects individual liberty, then this might be the group for you. 

Basic membership will be free. Later, I will probably add a paid membership option, for things like webinars with people with expertise in these areas, and maybe training sessions. I will keep everyone posted as it develops, and should have something in place by mid July. 

Finally, thank you to everyone who has been listening to "What Then Must We Do?" I promise the podcast will be back full-time, at some point in the future. For now, though, I need to focus on building.


Tom Finally Got Me

 

I've been avoiding joining Tom Woods' online group of supporting listeners for years now. Not because I have anything against Tom Woods, I don't - he is one of the best, and most prolific, advocates for liberty, and one of the few sane voices (sadly, even among libertarians) in these crazy times. But I didn't want one more reason to spend time on social media. I've been doing a good job of cutting back on that and didn't want to fall off the wagon.

But today I saw this, from his daily newsletter:

Someone introduced himself to my private group, the Tom Woods Show Elite, this week with the following:

"Last year my daughter Abigail was born a few days before the lockdowns started in Massachusetts. She was diagnosed with an incredibly rare genetic disorder called CHARGE syndrome (a little less than 1 in 100,000), which has a 40% survival rate. Once the lockdowns kicked in it was literally illegal for me and my wife to see or be by our preemie daughter, who was convulsing in painful uncontrollable spasms for months, and on the brink of death.

"Eventually the lockdowns "relaxed" so one of us could visit our daughter once daily for a generous two hours. I cannot put into words how traumatic it is to have a daily conversation with your wife about who gets to spend the potentially last day ever with your baby girl. Thankfully she survived after multiple surgeries, but is blind (compared to death that is a blessing). However, developmental services for special needs children in Massachusetts have been deemed a "nonessential service."

"We have been lucky to have secured some in-person OT visits with our daughter, but it has been criminally illegal in our state to have critical in-person visits with developmental specialists to help our daughter overcome challenges associated with her disabilities. She is months behind and will face permanent developmental delays because of the lockdowns set forth by our lovely Republican governor.

"I joined this legendary group to share my personal COVID tragedy, which is unfortunately one of millions, to a sympathetic group of like-minded individuals. I'm finishing up my public health PhD at [institution removed by TW], and am a political science professor at a state school up in Massachusetts, so I'm sure you can imagine how I'm surrounded by COVID doomers 24/7. Tom Woods literally gave me the strength to look death straight in the eye last year and overcome it, so I will be forever grateful."

 

Many of you know that our daughter also has a rare genetic condition - although not as rare as this one. Our daughter has Dup15Q, and when she was born, she spent several weeks in the NICU and a few more in a less intensive ward. It was several days before my husband talked me into going home to get some sleep, and I still feel guilty for any of that time that I didn't spend holding her. I can't even imagine what these parents had to go through - only, I sort of can.

One of the main reasons I've stayed on FaceBook has been my special-needs parent groups. As awful as FaceBorg is, it is a great platform for groups (as long as those groups aren't about the things FB's masters don't want you to talk about.) But I have a really hard time visiting those groups now. I have a very hard time looking at the pictures my friends and others are posting of their developmentally disabled children wearing masks. Or bragging about how they just gave their - already neurologically compromised - child the Covid-19 vaccine. 

These are people I love. And I love their kids. And I feel that there is nothing I can say that will make a dent in this. That I just have to watch as so many families "trust the experts" and go along with the madness. And I just can't watch it. 

So I'm heading over to Tom's group - on MeWe of course. Maybe you'll want to join me there.

Oh, and some of you also know that even before the pandemic nonsense, I had been working on a plan for developing independent, mutual-aid-style homes and communities for those with special needs. If anything, the pandemic has rendered this even more urgent, and requires thinking about it on a much much bigger scale. I've put together a (draft) video presentation that lays the groundwork for my solution - and it's not only limited to special-needs care. There are practical ways for us to build free societies now, and we need to start doing that.

You can check that out here (remember, it's just a first draft.)

 

 


Update: I'm Taking a Short Break

 

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Just a quick update: A couple of days after Christmas, we had to take our daughter into the hospital because she was having non-stop seizures. I'll have more to say about that, but for now I'll just say this: It was heartening to be reminded that there are legions of really good, competent, caring and hard-working people stuck inside an increasingly dysfunctional system. It is long past time for a change to that system, and when we change it, it won't only be for us–the consumers of healthcare–but for them, the producers, too. 

Anyway, we were there for 12 days, her seizures are mostly under control now with some powerful meds, one of which comes off in a few weeks, and the other one hopefully soon too. Then we need to come up with our next plan.

Needless to say, I haven't been blogging or podcasting during that time, although I have been taking lots of notes, and I've got lots of guests planned. I'll be catching up on things over the next couple of weeks, but should get my next episode–my first one of 2021–up near the end of January.

Until then, thanks for listening and for reading, I'm still posting a bit on Twitter (mostly things for myself, to go back and look at later), MeWe, and (once it's up again) Parler. And if you're feeling crappy about where things are right now, just go and watch some J.P. Sears. Oh and read Annabel Pickering & the Sky Pirates. It's not just for kids you know.

And don't feel crappy. Because 2021 is going to be an amazing year for freedom. You'll see.

 

 

 


Dog-Eat-Dog Statism for Special-Needs Families: You’re Either at the Table or You’re on the Menu

 

PD non-commercial - dog fight

Image: Non-commercial use

 

I wrote this six years ago, but I think the issues I raise here are more relevant than ever:

 

I wouldn’t have expected a conference on therapy for children with autism and related disorders to have much to say about politics, but in a country where the state’s tentacles reach into pretty much every aspect of human life, I should have known better.

My daughter is developmentally disabled and I am pursuing more child-centered therapies for her than the more widely recognized ABA (Applied Behavior Analysis) method, so last fall I attended the DIR Floortime Conference on Floortime, a more play-based form of therapy.

As soon as I walked in, I was struck by two phrases: “Parent Choice” and “Advocacy.” I was pretty sure that “Parent Choice” wasn’t going to mean what I hoped it would mean. So I asked someone who was wearing a big button with the phrase on it, and found that indeed, “Parent Choice” in this context simply refers to having the “choice” to force your insurance company to pay for alternative therapies in addition to the more established ABA method.

The issue revolves around a bill that was passed in 2011, SB 946, that mandates insurance coverage for developmental therapies to treat autism and Autism Spectrum Disorder. However, either due to the way the bill was written or to the way it has been interpreted – and with much thanks to the ABA lobby – the insurance codes only apply to ABA therapy and not to alternatives. So now the DIR/Floortime lobby is rallying to change that. Of course, as someone who doesn’t believe in forcing other people to give me anything, I couldn’t support this kind of “choice”, but I just smiled and moved on.

As it turned out, the guest of honor at the conference’s gala dinner was Dr. Louis Vismara, senior policy consultant to California Senator Darrell Steinberg, the author of SB 946. Dr. Vismara spoke on the first morning of the conference and assured parents that he would work hard to get the problem fixed so that parents could also force their insurance companies to pay for Floortime therapy. There was much applause.

There were other concerns too. Some parents had felt the effects of state budget cuts and had to struggle to get the services they needed for their children. Dr. Vismara sympathized with these concerns and stressed the importance of being active in “advocating” for their children. He said that, in the world of public policy, “you’re either at the table or you’re on the menu.”

He ended his talk by urging parents to get involved in the political process, and to contact his office with any practical proposals. “If a specific problem is identified and there is a solution”, he said, then that solution has a “strong chance” of being implemented.

I had identified a specific problem and had a solution in mind. So at the end of his talk, I went up to him and asked him about it.

 

Read the rest here.

 

 


Why FB's "Fact Check" of Mask Harm Claims is Utter Bullsh*t - Addendum to "Why I Won't Be Putting Masks on my Kids"

 

Fact check - Wearing_face_masks_does_not_cause_hypercapnia_or_affect_the_immune_system_-_Health_Feedback


So I've just seen that Facebook has "fact checked" the claim (made in my most recent post) that "Wearing face masks can cause carbon dioxide toxicity; can weaken immune system." (I've written elsewhere about why Facebook's "fact checkers" are not really fact checkers.)

Here's why this is bullshit:

1. From the "fact check": "While it is true that hypercapnia can be life-threatening, the claim that it can be caused by wearing face masks, either surgical masks or respirators, is unsupported and runs contrary to existing evidence..." It goes on to claim that healthcare workers "...wear both types of masks for long hours at work without reported impacts to their work performance."

In my post, I cited two studies showing that wearing N95 masks can cause hypoxia, with headaches being the primary symptom revealed by the studies. If the "fact-checkers" want to claim that they are only going after claims of "hypercapnia" and not "hypoxia", then that would be utterly disingenuous. It is clear from the evidence I provided that wearing these types of masks does create serious health problems, whether because of oxygen deprivation or excess CO2 levels. 

2. The "fact checkers" go on to assert, quoting an article in Forbes:

Take surgeons, for example—during long procedures, they wear surgical masks for hours with no ill-effects on their carbon dioxide levels. Having a surgeon with an altered mental state would not be in the best interests of either the patient or the surgeon and thankfully, this simply does not happen.

This may be true, I don't know, as I haven't looked into studies on CO2 levels for surgeons using masks. However I did link to a study that looked at the impact on oxygen levels among surgeons wearing masks, and it showed that oxygen levels were indeed adversely affected by the masks.

3. They go on to say: 

"The claim that wearing masks would weaken the immune system is also unsupported by scientific evidence. Prolonged wearing of face masks can cause problems such as discomfort, skin irritation, and even pressure ulcers[3], however immunodeficiency is not among the problems caused by prolonged face mask use."

This is complete horseshit.

In my post, for example, I cite two studies showing that wearing N95 masks can cause hypoxia among healthcare workers. I also link to studies showing that hypoxia enahnces immune suppression, that hypoxia negatively impacts Th1 function, and that "hypoxia-driven immunosuppression" contributes to creating favorable environments for cancer cells. Also, tangentially related (not necessarily related to immune function), a study showing that continuous cloth mask use was correlated with higher infection rates than was "standard practice" mask use (non-continuous).

So yes, immunodeficiency absolutely IS among the problems caused by prolonged face-mask use, you criminally dishonest pieces of manure.

I'm sure there is more, but I'll stop there.

...except for this last point. The fact checkers say, at the very end:

"A much more likely cause of hypercapnia and asphyxia that the general public should be aware of is covering one’s face with plastic. Because plastic is not porous enough to allow for quick air exchange, unlike face masks, it poses a genuine suffocation risk as cases in the past have demonstrated, and warning labels on plastic bags are used to remind people of this risk."

And I get why they had to say that. 

Because anyone who is stupid enough to take Facebook's "fact-checkers" seriously, is also stupid enough to put a plastic bag over their head and expect it to protect them. This is actually the most responsible piece of information in the entire article.

 

 

 


WTMWD #27: Celeste McGovern: Why we should be very concerned about a Covid-19 vaccine

 

 

 

I speak with writer Celeste McGovern about the efforts to create a vaccine for Covid-19. McGovern has been writing about vaccines for many years and recently wrote a piece outlining some of the major problems we should expect to see - and in some cases have already seen - with the coming Covid-19 vaccines.

Celeste's article is here.

What Doctors Don't Tell You is here.

Some of the groups Celeste mentions:

Vaccine Choice Canada

Children's Health Defense

Also: the Informed Consent Action Network


WTMWD #16: Kerry McDonald on Homeschooling and the "New Normal"

 

 

 

I speak with Kerry McDonald, unschooling mom and vocal advocate of homeschooling, about how governments may have inadvertantly sparked a homeschooling revolution, and about what homeschooling families can do to continue giving their children "old normal" lives.

Kerry McDonald is a Senior Education Fellow at FEE and author of Unschooled: Raising Curious, Well-Educated Children Outside the Conventional Classroom (Chicago Review Press, 2019). She is also an adjunct scholar at The Cato Institute and a regular Forbes contributor.

Kerry's research interests include homeschooling and alternatives to school, self-directed learning, education entrepreneurship, parent empowerment, school choice, and family and child policy. Her articles have appeared at The Wall Street Journal, Newsweek, NPR, Education Next, Reason Magazine, City Journal, and Entrepreneur, among others. She has a master’s degree in education policy from Harvard University and a bachelor’s degree in economics from Bowdoin College.

Kerry lives in Cambridge, Massachusetts with her husband and four children.

You can sign up for her weekly newsletter on parenting and education here.

 

 


Beach-Ball-Pushing Legislator Reveals Ignorance About Autism

 

 

 

California Assemblywoman Lorena Gonzalez came under fire recently for her insensitive treatment of parents opposed to SB 276, the latest attempt to tighten restrictions on medical exemptions for vaccines required for school attendance. ("I'm not letting people go into testimony about their children's medical conditions or perceived medical conditions..." )

Two days ago, she further embarrassed herself with this tweet:

 

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...to which one person replied:


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Again: Gonzalez is one of the politicians seeking to give the state the power to make medical decisions for other people's children. 

 

 

 


To the British Government: Stop Screwing Over Sick Kids

 

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At a time when the rest of the world is coming to realize just how destructive, deadly, and counterproductive the War on (Some) Drugs has been, the British government is still seizing medicinal cannabis from children who need it. Well done, British government, well done. Maybe you can go back to torturing people in mental institutions too?

Emma Appleby's daughter Teagan has been using CBD to treat her seizures, with great success. Teagan has the same genetic condition that our daughter (seen above) has, Dup15Q Syndrome, and like our daughter, suffers from difficult-to-control seizures. I posted about their story earlier this year, when the CBD oil that they had purchased in Holland (because they were unable to get it in the UK) was seized from them at customs - EVEN THOUGH THEY HAD A PRESCRIPTION FOR IT!

Some background: In November of last year, "cannabis-derived medicine" became legal by prescription in England, Scotland and Wales. But that doesn't mean that the NHS will offer prescriptions for every kind of medicinal CBD product. As The Guardian reports:

Although several cannabis-based medicines have been prescribed by the NHS since it was legalised in November, full extract cannabis oils – which campaigners say are both more effective and cheaper – remain unlicensed and do not appear to have been given to patients.

However, they are available privately and a number of patients have gained access in that way.

The Applebys were finally able to get a private prescription for the oil that was helping Teagan, after having it seized at customs the first time they tried bringing it in from Holland. However she was then told that she would need an import license, which she could not afford.

Teagan's mom has since found someone who can import the oil legally, but just this week she was told by the doctor giving her the prescription that he will no longer be able to do so.

Miss Appleby says this likely means the request for NHS funding has been turned down.

"I haven't had confirmation yet, but I think it's for that reason the doctor is not prescribing any more," she said.

"This is a massive blow because they sounded quite confident the individual funding request (IFR) would go through and that she could have a prescription on the NHS."

It means the family must continue to find £2,500 every month to pay for the medication from abroad privately.

Emma currently has enough CBD oil to last for about another five weeks, and has found another doctor who can offer her a private prescription. But the price tag is exhorbitant (it is about TEN TIMES what we pay for our daughter's CBD oil in the US!). After her current batch runs out, she doesn't know if she will be able to afford more. Before starting CBD, Teagan was having as many as 300 seizures a day. Her improvement since starting CBD has been dramatic. Now though, she does not know what she will do:

"If she loses this medication it will kill her," she said.

"She was so poorly last year, I didn’t think she was going to come out of intensive care.

"It's improved her life so much - I can't go back to how she was."

As an aside: Emma Appleby could very likely have gotten the CBD in through customs, as some other parents do, had she kept quiet about it and not set out to make her story public. But she did make it public, and she did it for a reason: In order to help other families who are having a hard time accessing the medication that can help their children.

If you want to help Emma, and Teagan, in their battle to secure what should be easily available for all families, you can do so here

 

 


Daily Log: Report From FEECON 2019 - Part 1

 

FEECON2019 w Michael Strong & Magatte Wade

 

So I almost didn't make it to FEECON 2019. The first part was entirely my mistake. (Or, as some might put it: The expected consequence of my not being fully skilled in navigating life in a police state.) I had just recently been approved for "TSA-Pre" status - I know, I was as surprised (and honestly, a little disappointed in myself) as you are. And what I knew, but then forgot, was that I had to bring my passport with me when traveling, because my TSA-Pre status and my passport are both in one of my names, while my driver's license is in another. I knew this. I just forgot. 

What that ended up meaning was that I got to spend several more hours in - NOT the worst place in the world (that title is reserved for a small hotel in Wuhan) but close to it. The Los Angeles International Airport.

Here's what was interesting about that: Every single person I interacted with there was lovely. Which really messed with my head. Because here we are being treated like cattle by the TSA, people who can literally molest us with impunity, here we are being sniffed by bomb-sniffing dogs, told we can't even carry a water bottle through security... and everyone seems really comfortable with it. 

There's obviously a very very dark side to that, and I've written about that elsewhere. But there is also a positive side, and it is this: Human beings are very very resilient. We are capable of tolerating a lot of crap. And while tolerating crap is not a good practice in life, it can be a strength. What I think I saw at LAX (again, NOT the worst place in the world), was people being strong enough to still be decent and happy, even in the face of all this crap. And the truth is probably that a great many of them don't even see it is crap. That by itself is both kind of nice and deeply horrifying.

The second thing that almost prevented me from getting to FEECON was that, as I was figuring out whether I was going to get on another flight with a name change, or have my husband bring my passport to me, I found out that our daughter's feeding tube was stuck! Our daughter has a feeding tube (long story), and sometimes it gets stuck for a short while and we can't get anything through it. Usually it resolves within 15-30 minutes, a few times it has gone as long as two hours. This time it had been more than four hours. 

This is a huge problem, because while she can eat by mouth, she won't usually take her medication by mouth, or all of the water she needs to have. Her caregivers had tried everything we knew to get it to work, I had spoken in depth to both her dietician and a nurse, to get ideas for getting it unstuck, and still it wouldn't budge. So, after my husband arrived with my passport, I realized that I wasn't going to be able to go to FEECON after all, at least not today. Maybe I could catch a flight out in the morning. So, we started the long drive back from LAX to Burbank.

Then, about ten minutes away from the aiport, we get a call - the tube is un-stuck! So we turn around, I run back in, catch another flight, and make it to Atlanta!

By the time I get to the hotel, it's around 1:00am. I am bleary eyed and wobbly from travel, and go check in - only to be told that I'll be on the 17th floor. Ordinarily, this would be just fine. But this particular hotel happened to have been designed by someone with a sick, sick, mind. It's one of those hotels that is open in the center, so when you're at the bottom and you look up, you see stacks and stacks of railings. When you go up to the top and look down, you want to scream and scream until all those railings stop spinning and your stomach comes back down from the top of your skull and you can just go and cry in a corner somewhere.

Oh, and the only elevators they have are glass. 

So that's how my trip started. I'll post more tomorrow - maybe I'll even talk about the conference.

Oh, and that's me with Michael Strong and his wife, Magatte Wade - both rockstars. After talking with Michael especially for many years now online, it was great to finally meet him. 


 


Daily Log: Unbelievable Asshattery from the UK, and My Little Girl's Second EEG

 

EEG still

 

This is my little girl, when we first discovered that she was having seizures. This was her second EEG, which we did at home. I've never posted pictures of her on my blog before, or on social media at all outside of parent groups. But I've decided to now, for reasons maybe I'll go into at some point.

Aeriel has had seizures since she was somewhere between nine months and a year old. She has had one nearly-two-year period of being seizure free (we don't know why), and another brief seizure-free period of a couple of months. She is now - knock serious wood - seizure free again, and I don't know how to describe what a relief that is. And also, is not. Because we are always aware that they could come back at any time. But to go for days and days and not see a single seizure, when she had been having dozens every day - is pretty awesome.

CBD has helped her, but it didn't entirely get rid of her seizures. We finally found a med that has knocked them out (for now), but she is also on CBD. And seeing how much it has helped her, it just enrages me more than I can say to see what is happening to families like Teagan's, in England, where they have now had the cannabis they had to go overseas to procure seized from them at customs FOR THE SECOND TIME. And after getting a prescription for it.

Here is the story:

The mother of a severely epileptic nine-year-old girl has had medical cannabis seized at an airport for the second time, even though she had a private prescription for the medicine.

Emma Appleby was accompanied on her trip to the Netherlands by Labour MP Tonia Antoniazzi, who has campaigned for greater access to medical cannabis.

Although several cannabis-based medicines have been prescribed by the NHS since it was legalised in November, full extract cannabis oils – which campaigners say are both more effective and cheaper – remain unlicensed and do not appear to have been given to patients.

However, they are available privately and a number of patients have gained access in that way.

“There seems no end to the stress and trauma of trying to access the medical cannabis that I have proved beyond doubt transforms the life of my daughter Teagan,” said Appleby, who was carrying a month’s supply of medical cannabis oil worth about £2,500.

“I am exhausted and shattered but I’ve seen how this medicine transforms my daughter’s life. I have to find a way forward. The NHS just won’t prescribe. This is unforgivably cruel and unfair.”

...

 

Teagan has the same condition our daughter has, Dup15Q syndrome. Her mom is on some of my FaceBook parent groups. So their story particularly hits home for me. But I am outraged over anyone being forcibly prevented from accessing treatments that might help their children. (Or, as I have posted elsewhere, being forced to use medical treatments against their will.) Here's the kicker, from the article:

A government spokesman said: “It is unlawful to import unlicensed cannabis-based products for medicinal use to the UK without a Home Office importation licence.

“There is an established regulatory system which enables the importation of these products to the UK via pharmaceutical wholesalers, so they can be dispensed to UK resident patients prescribed these products by a specialist doctor.”

He added: “Border Force has a duty to enforce the law and stop the unlawful import of controlled substances into the UK.”

 

And that's it. The law is the law, and there's no questioning it, or questioning those who enforce it. It's as if the Nuremberg trials never happened. As I've said a million times, and as I'll keep saying until I'm blue in the face, this is not civilized behavior. And a society that demands obedience to bad laws is not a civilized society. 

And I just wonder what it's going to take for enough people to wake up and stop tolerating this crap. To stop believing that the people with the guns and the prisons have some kind of legitimate authority over our lives. That they get to decide what medical treatments your child may have or may not have - or must have. What the hell is it going to take?

 

 

 


Six-Year-Old Victim of the War on (Some) Drugs


This is Charly's story. Charly was six years old and had the same genetic condition that our daughter has. Her parents were treating her seizures with THC, but had to drive across state lines to get it, and could not get any advice from doctors on dosing, because the gang that runs the state they live in said they couldn't.

What the news report below doesn't say is that, after Charly had passed away and her mother had called 911, the gang members who showed up threw the family out of the house so they could search it for THC.

If anyone ever wonders why I despise the violent gang known as the state with every fiber of my being, please stop wondering that now. If you wonder why I refer to the monsters who enforce its laws as monsters, you can stop wondering that too. And if you want to help prevent more needless deaths like Charly's, one of the most important things you can do is to stop rationalizing and supporting predation and violence when it wears a uniform.

 

 

 

 

 


Charly's Voice Must Be Heard

 

Tree-nature-rock-sunlight-leaf-stone-monument-statue-sadness-symbol-autumn-religion-cemetery-christian-tombstone-death-close-up-grave-sculpture-memorial-angel-graveyard-art-temple-gravestone-headstone-carving-grief-mourning-spirituality-1271484

 

I don't usually post things I haven't read, but I'm making an exception here. I literally cannot read this. I started to, and I can't. But I do know what happened, and I want others to know about this.

Charly was six years old when she passed away two weeks ago from seizures. She has the same condition our daughter has. The family called 911, and when the police came, the mother mentioned that they had been using THC to treat her seizures. Which is illegal in their state.

Instead of behaving like actual human beings, the officers forced the grieving family out of their house so they could search it for THC.

If anyone ever wonders why I refer to the monsters who enforce these laws as monsters - please stop wondering.

If anyone ever wonders why I detest the state with every fiber of my being - please stop wondering.

This is not just about the war on drugs. It's not even just about the state (although it largely is.) It is about our humanity. It is about blind obedience to authority, and it is about how so very many of us have sacrificed our humanity and our souls to an institution. There is no way any of us living in this time get to look back at any other period of history and shake our heads in disbelief. History is us. And we should be ashamed.


Charly's mother has asked that her story be shared widely. Here it is.

(Image public domain.)

 

 

 


Christmas in the Darkness

 

St lucia

 

 

It feels hard to get into the Christmas spirit this year. It did last year too. In fact I’m starting to think that unless you are a small child, getting into the Christmas spirit is not an easy thing to do, and that it only gets harder with time. This year seems especially dark. In my own circle of friends, family and acquaintances, I can’t even count the number of losses and other tragedies that people are going through in this season.

I know many people who have lost a parent or even a child during the past year. A friend on FaceBook is watching his father die; another came home on Christmas Eve to find that his wife had left him, taking their children with her; a cousin who suffers from PTSD from years of service as an EMT first responder may face jail time because he waved a gun in the air at someone trying to cut him off on the freeway; and only two days ago parents of a young woman with our daughter’s genetic condition lost her to seizures and other complications. I can’t even imagine how that family is going to get through today.

I do remember our own terrible Christmas, only two months after we had lost our baby son at 39 weeks, one week before he was due, to a cord accident. I felt smashed into a million pieces, barely even present, held together only by the people around me. The thing is though, it wasn’t a terrible Christmas. We spent it at my sister’s B&B in Minnesota, our whole family, and it was actually a fun time. It was the year my husband wrote The Rules of Christmas and to this day I am astounded that he had both the presence of mind and the good humor to write it. But he did, and I somehow had the presence of mind and good humor to find it hilarious. I still look back at that Christmas with happy memories. It was a bright spot in a very dark time.

And I kind of think that’s what Christmas is about. Whether you celebrate it as a Christian or as a pagan (I’ll leave other traditions to those more familiar with them), what we are celebrating is not the fact that we have perfect lives in a flawless world and we couldn’t ask for more. What we are celebrating is the bits of light, wherever they are and however small, in a world that we know is filled with much darkness. For Christians, that “light” is the birth of Jesus and the promise of eternal salvation. But as an outsider looking in, I also believe that it is the promise of achieving the kingdom of heaven here on earth and in that sense is not so far removed from the pagan celebration of light in the material world.

Maybe, as we become adults, and as we become more intensely aware of the suffering, the loss, and the evil in the world, it does become harder to celebrate Christmas. That doesn’t make it less important to celebrate it though. It makes it more important. One of the only ways we have to fight the darkness is to recognize the light, celebrate it, and do what we can to encourage it. The light may come in the form of a massive sunburst or it may be a tiny pinpoint. This morning, for me, it was the video of another young girl with our daughter’s condition, defying the predictions of experts from long ago and reading aloud from a book.

The relentless brutality of the world isn’t going to stop for our celebrations, yet we still celebrate. That’s the whole point.

 

 

 

 


Where Hope Grows

 

I'm looking forward to seeing this:

 

 

 

Says Mike Porath:

 

As a parent of a child with special needs – in our case, a daughter with Dup15q syndrome – it’s often hard to explain to others how our family dynamic works.

Yes, our daughter has challenges, but she also brings so much good out of us and those around her.

“Where Hope Grows” shows how a young grocery clerk with a pure heart impacts those around him. Oh, and he happens to have Down syndrome. The film did such a nice job of showing the person, not the disability.

When I got home, I emailed my friend Milan Chakraborty, who produced the movie. There was a specific line in the film I really liked, and I couldn’t remember quite what it was. He wrote back:

“I don’t know it exactly, but it goes something like this…

“You look around (a cemetery) and on every tombstone you see two dates. A birth date and a date of death. You’re guaranteed those two dates. But in between those dates is a dash. It’s what you do with that dash that counts. Make your dash count.”

...

I encourage you to take an hour and a half to go see this film while it’s still in theaters. No matter what you may be dealing with in life, watching this film will help you turn your attention to what really matters – making your dash count.