I Love Warriors

Are people sick of hearing about autism yet? I’ve been at this almost 5yrs now and still I couldn’t tire from it, then again I’m not really given that option am I. Sure those of you that aren’t affected by autism in some way (not many of those left I’m sure) are wishing for people to shut up about it already, more so I’m presuming that people are sick and tired of hearing about vaccines. Oh how I wish we could just shut up and that there was no need to be swamped by these things at every corner but it’s just not happening. So who is at fault? CDC for sticking to their ‘it’s genes, better diagnosing and more awareness’, giants like Autism Speaks that bring in millions and ignore families affected or the health system for continuously ignoring the problem.

There is a light though and it’s with all those warriors screaming and pushing for answers, solutions and action. These people eat studies for breakfast, perform therapies in their home as good as or better than the trained ones making the big $$$ and are ready for the next moment to arise when they can make some big change. Things may seem to die down a bit in the autism world but these people are constantly working, trying to change an unchecked system that has become detrimental not only to these children but to everyone.

Days like today show how on top of things these people are. First off I’d like to say that we know what the true numbers really are, if you hunt around you can find a few studies that look into more current autism rates and can give you an average estimate of 1 in 34 children. Not 1 in 34 boys, but 1 in 34 Children. But for now we have to look at published findings. Everyone (within the circle) was well aware of the CDC putting out a study to give a new autism incidence number. The thing about these people is that they know how to read studies and have probably been through hundreds already. It’s not surprising that this was easily torn apart, the study was complete bullshit and if anything was a slap in the face to families with autism everywhere. So all day a flood of information poured into the network concerning this and I cannot commend these people enough for their hard work and dedication but I am still left to ask this horrible question…..is it enough?

Is the message really getting out there to the people it should or are we just passing the information around to people who already know? I’m sure some are reached; I can’t say that all this effort is in vain but I think we really need to start thinking bigger. There really are a lot of people in this, just today an idea was brought into fruition in a matter of hours and here is one of the results of that. I could scroll through pages of people posting pictures of their children and it has only reached a small group of people. Looking at not just this but also previous endeavours, shows not only the amount of people affected and willing to speak out but also the sheer amount of determination in these people to make change.

So yes I can admit that the message is getting out there but it isn’t fast enough. 1 in 88 officially and that number is; children over 8, only taken from 14 states and the continued falsity that this is genetic and because of better diagnosing and blah blah aren’t you all sick of it already? I’m speaking to you autism families, autism fighters, aren’t you tired? An understate to say the least I know. How many hours spent researching, debating, learning therapies, learning treatments and fighting for a better life for these kids have been spent from you all? All for what, so that most still have to pay out the ass for therapies, so that treatments that actually work are not covered or even being considered, so that more parents have to hear ‘your child will never speak’ or ‘you will have to institutionalize’ or ‘your child will never feel any emotion for you’ or ‘the research has already been done’ when it’s all just not true!

We need to think bigger, grab people’s attention, make a huge impact and inform people, fully inform them. It would be nice if doctors knew the signs of a vaccine reaction and reported it every time, unfortunately this isn’t just going to happen. We need to inform the everyday individual and we need to do it oldskool J

Now hear me out before making any assumptions please.

Although we are big enough, we just cannot drop our lives to do some huge rally to demand change and even that may not be enough. With the time factor in mind I think a more Guerrilla approach is needed and would add to the impact already being made in a huge way. We can’t make time for change but we can take the time we are already using to do it.

Confused yet? I am getting to the point I swear. So there are a few things the vast majority of us all do; groceries, shopping, school, doctor, craiglist/kijiji, read the paper, go to work, just plain old walk outside. Yes the internet is an amazing resource for information but have we seriously forgotten about the old ways? Where are the days of posters on poles, notices at the corner store and flyers in mailboxes? I can’t say it’s all lost because those No Shots, No School, Not True, billboards are amazing and I do know of a few people who hand out info sheets but still it’s not big enough. So what if all of us got together and put out brochures, cards, flyers, take out ads to put information in and put things where everyday people can see. It is an easy endeavour to tack up a poster on the corkboard when visiting your local grocery store, even bigger would be dropping off a pile at the local doctor’s office or hospital waiting room. I have a few ideas on some things but would really love any input or ideas from others.  Our kids aren’t getting any younger and neither are we, we can’t wait for change to happen or for someone else to do it, we need to step it up and get the message out there. We have all this information that isn’t getting out there. I could walk up to 100 people in town and none of them will know the autism numbers, nor will they know it is treatable. Average people need to know the precautions they can take, they need to know that all is not lost, they need to know about organizations like autism speaks and above all they need to know what mainstream isn’t telling them.

So please consider this idea and hopefully in the near future I’ll be posting happy details about the project. Until then, live long and prosper ….and to you warriors, rest easy tonight, you all have done an amazing job.

jabwatchdog@live.com

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It’s Not Something You’re Simply Born With

Oh Autism Speaks, how you annoy me so. I haven’t seen you in my news feed for awhile but today you have graced me with your presence. This is what they put out today and surprise, surprise it’s another piece on genetics. I have to state first of all that this illusion of prenatal testing is ridiculous. We have not pin-pointed a gene or any way to determine whether a child has autism shortly after birth or prenatally. Even though this article states that it has a test for autism, please be aware that this is just a money grabbing scheme. They know a few genes that they have pin-pointed-among the hundreds of other ‘multiple variations’ that have been claimed- that not only occur in those with autism, but those also with other disorders and regular people. If you took 100 people without autism, you will find these noted genes among them. They don’t have autism, so claiming that this test is anything but a giant ploy is ludicrous. Please know that even if they do find ‘something’ they have no treatments. They have therapies and medications that turn your child into a zombie. There are actual treatments that you can spend your money on and they will actually help as opposed to $1,500+ for them to tell you, yes here it is, now let’s make you pay for intensive therapies and pump your kid full of anti-psychotics. Go ahead if that is how you want to do things but I honestly feel sorry for the child. I have spent an immense amount less than that and in 2yrs my son has made tremendous progress, but I’m also not one to look for that easy way out, the one pill cure all that most of these parents are blindly dreaming about. It is not gonna happen; this is far too complex a disorder for a simple quick fix solution. The only quick fix is stopping the increasing number of children affected, but since no one is looking at the actual cause and too focused on genetics, this isn’t happening any time soon.

The very first line tells all, about the motives behind this organization and general researchers of autism.

“A burst of research into the genetics of autism has given scientists insight into the basis for the disorder. Now, some companies aim to capitalize on these findings by developing DNA screens that might one day provide a diagnosis at birth”

Do any of you actually believe that this research is about helping people? Look up the word ‘capitalize’ in the dictionary. This is all about $$$$. Do you honestly believe that the Down syndrome test, which is ‘offered’ repeatedly during the prenatal process, is just there because they care? They make money off of every test done and then for that second test they make thousands more. Do you think sticking a needle into your womb is free just because you don’t see the money coming out of your pocket?

Ok enough of that, you get the point. It’s all about making the dough and maybe as a side effect a possible few kids and families may be helped, but I doubt it.

“That specifically targets the developmental disorder, searching the genome for either irregular CNVs or single-nucleotide polymorphisms (SNPs) that could explain the symptoms.”

So what specific genes are named in autism because last I heard there were 100s of different possible combinations, with absolutely no chromosomal abnormalities? Are they just looking for irregular or duplicate genes and claiming autism? Can they no grasp the fact that SOMETHING has to affect these genes, these bits of DNA to change?

“These tests are not giving any answers and they are costing thousands of dollars “a microarray costs, on average, $1,500, and that’s without the bells and whistles such as doctor visits and additional gene sequencing”

These researchers are making millions looking at an end result.

“Therapies—a market that UK-based research publisher Global Data expects to top $5 billion in the US in 2018”

Why not do something productive in terms of genes and test children at birth and then after regression? Test the difference between parents who believe that their children were born with autism and those who watched their children regress after numerous vaccines.

Then this load of malarkey “These abnormalities remain difficult to detect until a child is around four years of age or older”… Really cause myself and other parents can tell you differently and correct me if I`m wrong but aren`t most children diagnosed around 18mths-2yrs old after nearly a year of actively trying to get a diagnosis. Isn`t that part of the whole vaccines don`t cause autism argument, that children are diagnosed right at the time of vaccines?

They go on and on about treatments and yet they only mention therapies. There is a huge difference and yet still many, many people –even professionals- still use the two interchangeably.

“The diagnostic holy grail is a molecular test that can pinpoint the disorder at birth to hook children into therapies straightaway”

Yes and yet after all this money spent you still have nothing, absolutely squat really. How long did it take to find out the problem with Down syndrome? If it were strictly a genetic problem, we would have no problem finding it. Before I move on I absolutely have to point out the horrific fact that our health system is absolutely burning itself alive. We can test for Down syndrome so why can’t we figure out why it’s happening? It’s like with vaccines, instead of actually addressing measles or any other, we use our ‘prevention’ methods and cross our fingers that it works and no one ever gets said disease again because we have no clue what to do when that happens. Wow we are truly f**ked, seriously over half of these parents have no idea how to take care of sick children. Look at how many are hospitalized due to dehydration…DEHYDRATION…seriously wtf, we should be teaching people what to do when they or their children become sick instead of focusing every ounce of energy into prevention and if that fails; more prevention. Here take this vaccine and you’ll never have to worry about your child getting sick ever again. Yes I am fully aware that this is not word for word what they are saying; I am however equally aware that this is the mindset people are getting because of the message that is being delivered. Don’t believe me, look at the flu shot. Beside the fact that we’ve seen the studies showing this vaccine to be pointless in preventing the flu and only reducing symptoms by %4, the message is ‘don’t wanna get sick and miss work, school etc. Get the flu shot, save your life and others’. So people go on down to Walgreens, the grocery store or wherever they are putting these disgusting stands and get their shot with full thinking that they are not going to get sick. A few days late they have the full blown flu and have absolutely no idea what to do because all they were told was get this and don’t get sick; no one says what you should do if you actually do get sick cause no one gets sick anymore because we have these wonderful magical vaccines right?

So moving on to thee best part of the article…
“We think that 80–90% of what causes autism is really the genetics. But pinning down the genetic cause of autism has been difficult. Known mutations comprise fewer than 20% of all cases of ASD’s”

These guys really have alot of nerve don’t they? They can only find known mutations –none specified, hell -none is ever specified- in less than 20% yet they, in basically the same sentence they try and claim that 80-90% of what causes autism is genetically based. It will take you a hundred years and you still won’t be able to prove that statement, that very poor assumption. If you just look at the increase you will see that 80-90% of what causes autism is ‘outward influence’ and if you close your eyes really, really hard…….you can hear the doctors whisper in your ear that it’s all genetics, you parent are to blame with your poor genes and choice in poor gened mate because he read an article somewhere 5 yrs ago.

Oh but my uncle, grandfather, parent or other has it, I think. Interesting that you can now diagnose everyone including Bill Gates to fit this idea laid out before you. Instead of nodding your head and thinking fondly of the quirky uncle on your mom’s side, why don’t you actually take a look? Maybe it’s all malarkey, maybe just maybe they came into the same situation as your child and what causes their autism is the same. Who the heck is to say, certainly not me because while my family – both side- are insane, quirky, do things other people would never have the balls to do type of people, none have autism, none flap their hands when they get excited, all of them speak and they do not have anything close to the physical issues my son has. Now I’m not saying that every autism is like my sons, not every child has autism because of vaccines- since the issue is much deeper than that- but I certainly am saying that no child is just born with genes like theirs unless there was exposure to something during pregnancy.

I also do love- not- how they pup every one up with ‘autism is caused by genes’ when they have this;

“Found in less than 1% of individuals with ASD. But this mutation alone isn’t the final word on an autistic diagnosis. Some people with the 16p11.2 deletion or duplication have no or few autistic symptoms”

So in short normal speak: you have squat. No wait, in fact, you have even more questions like why does this make sense to warrior parents and not you guys

“And many rare variants associated with autism present schizophrenic, epileptic or bipolar symptoms instead,”

Hmmm maybe they have the secret recipe? No I think they have just been doing a better job than you guys with far, far less money than you have at your fingertips. They know that autism and the above are not strictly psychiatric disorders, they know that these are things that can affect the whole body and that these are things that you are not simply ‘just born with’.

It’s actually quite sad when you think about it, all these people, families, loved ones told that this is the way things are and there is nothing that can be changed. Now we know that it is possible to have hope, that we can make lives better for these people. Take the ‘Gardisil Girls’ for example, there seemed to be no hope and yet when treated for the cause- or as much as we know at this point- these girls get better. The same type of treatment that is helping thousands of children with autism and that can help thousands more.

This is a false hope “A microarray screening for CNVs pinpointed the probable genetic basis for Lily’s autism”… the beginning of the article mentions this little girl as though they were going to reveal the secret to this genetic test that would diagnose at birth, yet now with proper wording you see that it is all just an illusion. They are hoping to come across one child –or group of children- that will unlock it all for them and we know that isn’t going to happen. These children have different causes and are each affected by so, differently and to such extremes it is hard to categorize them under the same diagnosis. One thing stands ever simply though. There is a cause. In this day to continue to doubt that is to pull the blinds shut and let the world move on without you; because we are. Children are recovering. They are not cured, because we can only do so much and we don’t have the money to research this properly. We can only continue our work while we watch millions spent on areas of research that are not helping a single child or family. Not one. Not ever.

And you wonder while all the warriors are pissed off.

“Despite extensive data collection and genomic screening, these microarrays can only identify an associated genetic abnormality in 8–25% of known clinical cases of autism, depending on whom you ask”

So even if we take their highest calculation of 25%, we still have that amount of children with a genetic abnormality that does not point to autism because this abnormality exists in other diagnoses and also regular everyday people. Still let’s throw them a bone and say good job, pat on the back for you. You took $1,500 from this family all to either confirm there suspicions, get tested earlier for therapies or….what? What treatment can you put together from this information? Earlier therapy, sure that’s a good thing I cannot disagree with however, even with those few extra months or years of therapy, you are only going to get so far. What these people aren’t saying out loud is that this test is not foolproof. Imagine taking your baby in, spending this money and getting back a positive result only, your child doesn’t have autism. Maybe there is no harm in that situation, but imagine the time and money spent, not to mention what impact this or any type of diagnosis has on a child. Then what of the other 75% that may be tested and will be told that their child is fine, only to later receive a diagnosis of autism.

I have to note that this article is truly annoying in that they keep relating to finding these ‘genes’ as the cause.
“But we’re still left with 75% of kids who still have an unknown cause.” No correction, you are STILL left with 100% of kids with an unknown cause and 25% of children that have similar gene abnormalities, which may or may not be related to autism.

“Despite the relatively low diagnostic yield, CNV-probing chromosomal microarrays are the recommended genetic test for autism by the American Society of Human Genetics and the Boston-based Autism Consortium”

Of course they are what else do you have? After how many years and how many billions of dollars, what have you come up with? After say ten years and possibly a million dollars –I am estimating extremely high- parents and others have come up with treatment plans and centers that are actually giving kids back their lives. – In a functional respect- They have also started centers for therapies, groups and so many things that actually help.

I’m so glad that they mentioned Fragile X in here because it’s another hot button issue for me. A gene doesn’t spontaneously break; I’ve talked to parents of children who have been diagnosed with Fragile X after a vaccine reaction. Same story; healthy child, meets milestones then regression day after vaccines, only this time it shows on a test as Fragile X. Saying that Fragile X is the cause is again, absurd. What happened to this gene and other genes is an end result. Our genes reflect our state and are impacted by such. Saying that this is the cause leads people to think ‘oh its genes, nothing we can do’ when that is not true. These kids could actually be getting treatment that would make their lives easier and instead they are basically left in their own world and struggling when it doesn’t have to be that way.

“Most of the time, mutations associated with autism are formed de novo in the autistic person.”

I would love to see where they got this from and until I do, I call BS on this. If this were true to the degree that they are stating it, then there would already be prenatal testing and autism wouldn’t be such a hot topic as it is.

Thinking that it is strictly genes is very detrimental to families. There will be few families willing to have another child based on the information being spat and the risk of inheritable autism. The whole family is missing out when it does not have to be so. I took what I know about autism –my sons specifically- and I made a prevention plan when I got pregnant again. My daughter doesn’t have autism and maybe it is just a coincidence, but apparently so are children dying 30min after receiving a vaccine. Who am I to claim truth when I have no money to do research to back up my claims, yet neither do they. Even ground for now I guess, let’s move on.

“Even at the end of the day, the complete genome sequences of 10,000 autistic diagnoses still won’t be able to predict definitively what the detailed clinical outcome will or won’t be,” says Scherer. For that reason, experts emphasize the necessary role of clinical geneticists, like Schaaf, to help interpret the data and make it clear that genes aren’t the be-all and end-all”

*Applause* And even if it was 100% foolproof, it still would not help us with prevention or treatment. It still will not help these children or their families

Finding the cause in genes in order to diagnose earlier or prenatally; is a waste of time, money and resources

We need to know the cause in order to find the cure. We need to stop looking at everything but the obvious.

Let’s open the box and see what’s inside

Withdrawals and other fun stuff that go with GFCF

GFCF is not cheap in anyway and there is not much variety. I’ve been excited to come across new foods that say gluten free, but alas they usually contain casein. I was going out of my mind trying to figure it all out. My son was such a picky eater and I mean picky. He had maybe 3 foods he would eat at the point that we started and I worried so much that he would just refuse everything and start to starve. But I knew what these foods were doing to him and I couldn’t let that go on anymore. I had to go back to basics. Fruits, veges, meats and snacks from scratch. Not easy and it takes so much patience to work through trying all these foods to find ones that your child will eat. It’s slow going and you will constantly be worrying if they are getting enough, if they will constantly refuse to eat anything but ‘restricted foods’.

It will get better and it does get easier. The worst and –I say this with all the love in the world- most annoying part of it all is the withdrawal. They may get angrier, stim more, cry more, self injury more and when you get down to the nitty gritty, they will hunt out ‘restricted foods’ like a crackhead looking for a fix. I am not kidding. My kid hounds me when I eat bread and goes for playdoh or any not so edible thing that has gluten or casein in it. I’ve heard of kids licking the newly polished floors because they can literally smell the gluten in the wax. I’ve heard so many stories of children eating things, you would not imagine had gluten or casein in it. You have to be on constant watch; daycare, school and just being at someone else’s house could inadvertently cause an ‘infraction’.

A really good tip if you are on your way. Approximately 6hrs after an infraction you will start to notice signs. This has helped me countless times when trying to figure out what food he was ‘reacting’ to, when I started to see him ‘react’ I counted back about 6hrs and would find out what he ate. I removed the food and no more ‘reactions’.

Now on to the good stuff. If everything goes accordingly –the diet works for your child, you have made sure to remove all ‘restricted foods’ –you may not see the same improvements if you are doing a slow diet- you will start to notice some or all of the following: Less/no – headbanging, self injurious behaviour and hitting, pinching, biting of others. Less – meltdowns, headaches, stimming, stomach pains and waking up in the middle of the night screaming/crying. More – eye contact, focus, speech, awareness, interaction and imaginative play.

Now remember, you could see results right away or they could take a few months. Gluten and Casein are in many, many things so it’s good to recheck what your child is eating when you are implementing this ‘diet’. Also Remember that it’s not just about gluten free, casein has the exact same effect. Good Luck.

GF/CF Getting Started

I’m sure at some point you’ve heard something about the ‘autism diet’, touted sometimes in such extremes as the miracle cure or a load of crap. As usual, somewhere in the middle is the truth. We can get right down to the science of it later but for right now let’s talk a little more personal.

Now first off, there are a few things that need to be made clear.

This may not be right for your child

You don’t have to go all hardcore about it to start

You can do tests to decide beforehand whether to start

Things will get worse before they get better

So first thing, you need to determine is whether this is right for your child. Take a week and really watch your child, there are a few things you should be watching for. WARNING: this can get a little gross.

Does your child have many, very few, or regular bowel movements?

Does your child rarely have a solid poop?

Does your child’s poop have a very rancid odor, is it very often runny, is it ‘acidy’ – burns the skin on their bottoms?

Does your child’s urine have a very strong smell?

Is your child underweight and/or have a bloated belly? (an example would be, like the children shown on those feed the children infomercials)

Does your child have a limited number of foods they will eat?

Does your child eat an abundance – a lot of or only – these foods; Pasta, milk, cheese, breads, cereal – basically any obvious milk/bread foods – an example would be a child that drinks say 10+ glasses of milk per day and only wants to eat pasta and cheese

If this is your child it would be worth it to give the diet a try. You can work at it slow or go cold turkey, but please remember that your child WILL go through withdrawals. I believe the bigger the cut out, the worse the withdrawal can be. So it could look like doing this is making it worse but please give it some time, this is a good sign. You can start out small and just remove drinking milk and then move on to removing bread and pasta. We did a trial run to know for sure after seeing all the symptoms for our son. After a week of just taking drinking milk out of his diet, he started to look us in the eye again. Not everyone will be this way but the more you take out the more results you will see and seeing is believing.