Sunday, February 23, 2014

Shot To The Heart...

Pervasive Parenting
By Kodey Toney
Shot to the Heart…
One of the questions I get most as I’m out advocating is, “What do you think causes autism?” I usually have a “canned” answer. You know, one that tries to appease while not offending anyone. It is so controversial that I usually shy away and say, “I’m not really sure, there could be so many things, but I do know that my son has been diagnosed so I’m focused on helping him.”
However, the debate rages on, and one of the most blamed culprits seem to be vaccinations. Throughout the years the mercury-laden Thimerosal has taken the brunt of the accusations for autism. Though there have been questionable tests throughout the years from all sides of the coin, a recent website has brought some interesting facts to light for the public to see. My wife found the site somehow and sent it to me. Unlike most sites about Thimerosal, actually has some data and proof to back up many of the accusations. If nothing else it is worth looking into.
I didn’t just read the article and then regurgitate the information. I did some further investigation to make sure that their facts were legitimate. While some was questionable I will say that most of it was dead on.
I’m going to share a little bit of the information with you and let you draw your own conclusions. I will say that this is pretty one sided, and I will only put in the points that I felt were interesting. Look at this as a book report of sorts.
In the 1920s Eli Lilly Corporation began working on the mercury compound Thimerosal. By 1929 they had a patent and began using it as a preservative for medicine. Among these medicines were vaccinations. This was all implemented despite the fact that the company had very little testing on humans, and that testing was not actually successful.
When the compound was first put into use in 1931 the problems with autism shortly followed. The first 11 children diagnosed with autism were born between 1931 and 1938.
As the number of vaccines required by the federal government increased so did the number of cases of autism. Also, the number of studies involving Thimerosal increased, and none mentioned in the article seem to be positive. There are also videos of legislators asking if there is any actual evidence as to whether these chemicals can help preserve the vaccines and no one could answer with a yes.
In the 1970s more vaccinations begin using Thimerosal, and by the early 1980s an 18-month old child would have 125 micrograms of mercury in their system. This is bad enough for an adult, but when you’re pumping that much of a toxic element into a tiny body you’re going to see some issues.
As you could predict, the Center for Disease Control (CDC) begins to see the number of children diagnosed with autism increase in the early 80s.
As the number of studies begin to show that the mercury is not safe the number of safety precautions for the pharmaceuticals begin to surface. I’m not going to get into the political side of this, but there were some fishy things happening within congress. In 1986 the government passed the National Childhood Vaccine Act which states that the pharmaceutical companies cannot be sued for injuries occurred by vaccines, and the federal government will have to pay out of tax money for lawsuits.
The vaccines are increasing by the 1990s and so are the diagnoses. In January of 1991 there are more than 200 micrograms of mercury injected into the small bodies of children by the age of 18-months. The number of children diagnosed with autism increased from 1 in 1000 in 1980 to 1 in 150. This trend continues today and we now have 1 in 50 diagnosed.
There is way more evidence than I could possibly fit into this week’s column, but I think the point has been made. I highly recommend that you read this information. There are way too many coincidences for this to be just happenstance. Especially when most children begin to show signs shortly after that 18-month mark when they receive the Measles, Mumps, and Rubella (MMR) shots.
I’m in no way saying that we shouldn’t vaccinate our children. I think it is a great thing, but we need to take a look at what’s in our shots before we inject them into our children.
This is just a little something to consider.
Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column. You can also find all columns archived at

Sunday, February 16, 2014

Morning Desire

Pervasive Parenting

By Kodey Toney

Morning Desire

As I’ve expressed in the past, mornings with Konner is a difficult task. First of all I’m not a morning person. I, like many, have to have some time and coffee to wake up. This paired with Konner’s lack of concentration makes for a bad combination. When I’m asking him several times each morning to get his clothes on, take his meds, put on his shoes, fix his hair, and work on getting his backpack and coat together it gets to be really frustrating to tell him things several times. So when I began reading another section in the book “The Reason I Jump” by Naoki Higashida, translated by David Mitchell, things started to make a little more sense to me.

I was recently reading from another source that children on the autism spectrum usually have more than one diagnosis. This is called comorbidity. For instance, though they are diagnosed with pervasive developmental disorder-not otherwise specified (PDD-NOS) they may also have sensory processing disorder, anxiety, obsessive compulsive disorder (OCD), or attention-deficit hyperactivity disorder (ADHD). The last one is the one that causes my stress in the morning.

Naoki Higashida, a teen with autism who is non-verbal, has written about why he doesn’t do what he’s told right away. He states in his book: “There are times when I can’t do what I want to, or what I have to do. It doesn’t mean I don’t want to do it. I just can’t get it all together, somehow. Even performing one straightforward task, I can’t get started as smoothly as you can.”

So what takes a person with autism so long to process the information? Well, without getting too far into the science of the brain, it just takes them longer for the information to reach the part of the brain that processes the information, and once it does they then have to make their brain do what they want it to. Unlike a neurotypical person this can be harder because of the delay in thought.

Naoki explains it a little better than I can though. He says:

1.      “I think about what I’m going to do.”

2.      “I visualize how I’m going to do it.”

3.      “I encourage myself to get going.”

So if this procedure is processed quickly then they can get the task done quickly, but if it is not it may take longer. The longer it takes the more frustrated all involved become.

Naoki goes on to say that there are times when his body won’t let him act on the task at hand. It seems as though he has no control of his body. “My whole body, except for my soul, feels as if it belongs to somebody else and I have zero control over it,” says Naoki.

Can you imagine the frustration a child on the spectrum must feel in these situations? Just putting on your socks or shoes is daunting to them.

Throw in the ADHD and low patience from a father and you have a recipe for morning disaster. The worst part is that we have Konner on medicine for his ADHD. However, in the morning it has worn off and he is in full hyper mode. He has also disengaged from the attention mode. This is a non-morning person’s worst nightmare.

There are some things that I try to do to help with the situation. One thing that I have begun is to put clothes out the night before. I don’t always do this, but I find that the days I do tend to run much more smoothly than the days I don’t. I also found that if I get up earlier I can have a little more time to wake up, I can lay clothes out and find shoes and backpacks if I haven’t done that the night before, and I can even have a cup of coffee if I want to. I know it means that I have to get up earlier, but in the long run it seems to make a big difference.

These are just a few ideas, and I’m not sure if anyone else has these problems, but I have to imagine I’m not alone.

For more information on this and other subjects I’ve written about in the past make sure to check out Pervasive Parenting at This has all my columns I have written and you can do a search for what issues you might be having.

Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column. You can also find all columns archived at

Sunday, February 9, 2014

Let It Be

Pervasive Parenting
By Kodey Toney
Let it Be
A couple weeks ago Jen and I went to the Wrightslaw Conference in Edmond. This is the second time we attended the event, and I’ve talked in the past about it, but I will briefly tell about it again for new readers. Attorney Pete Wright speaks to families, educators, and other professionals about education law. He gives advice and tips to help parents navigate the world of education and Individualized Education Plans (IEPs). Something he said at that conference gave me an idea of what to discuss this week. It’s about labeling children with disabilities; especially those with autism.
Wright stated that most schools have the same mentality when it comes to coping with children on the spectrum. They think, “Give me a label and I’ll give you a place to put them.” Most of the time it’s, “Oh, he has autism we’ll send him to this room. Wait, he can’t speak? Well, we’ll send him over here. Oh, but he can speak he just has behavior issues? Well, then he needs to go over here.” Often they don’t even give the children a chance to perform in the mainstream classroom before just sending them away.
This is unfortunately a grandfathered concept that we have to break in order to give our children the best possible education. Why is this? Because the mentality has always been to do whatever is easiest for the school and not what is best for the child. The system has felt this way for years and they have to find a way to vacate that mentality.
It’s no wonder parents are afraid of labeling their child. When we label them they are usually sent away like the misfit toys. Nobody wants that for their child.
This very thing happened to a child I was advocating for last year. The school felt that the child, because he was non-verbal and had behavior issues, could not conform to the classroom. The problem was that because he had communication issues he had behavior issues. These things cause concern for him being in a classroom and disrupting the other children as well as lashing out at others. While these are legitimate concerns, it takes someone working with him to find ways to communicate to lower the behavior problems and in turn helping him to work better in the classroom.
Think about this: If you were in a foreign land and really needed to talk to someone about finding something as small as a bathroom, or as big as the airport, but you couldn’t speak their language how would you feel? Angry? Scared? Frustrated? Defeated? This is how these children spend their lives and they need an interpreter to help catch their flight and use the restroom.
Labels have good and bad qualities though. In order to get the services needed to help your child improve and succeed you have to have a label. However, if you label them it gives administrators something to use to “place” the kids and put them away from their peers.
We argued at one IEP meeting, in the early years, about whether or not to label Konner as having autism. One of the ladies in the room kept saying, “You don’t want to give him that label. You don’t want to put autism on his IEP.” Our response was always, “Yes we do. If we don’t we won’t get the services that we need to help him.” In fact she argued that she didn’t think he had autism despite the evaluation from a clinical psychologist sitting in front of her proving otherwise.
I’ve always said that we have been fortunate that Konner has been in the mainstream classroom from the beginning, but I know that many others have not because of their diagnosis. The fact is that many teachers don’t know how to handle having them in their classroom. Most have not had to and feel that they don’t have to. Others feel they could probably cope if they had an aide, but the school can’t afford to hire one. And there are others who feel that having a child in the classroom with a disability will take away from the education of the other students. I have discussed this in the past, and won’t hit on too much, but I will say that I feel everyone involved benefit in the end from having a child in the classroom; especially on the social side of things.
What we have to do is find a way to not “label” a child, but give them an identity to help them get further in life. We have to find their voice to help them be themselves and not their diagnosis.

What's My Age Again

Pervasive Parenting

By Kodey Toney

What’s My Age Again

I saw a video on Facebook this weekend that made me really think. There was a girl who was flipping through a notebook explaining that her brother, who was diagnosed with autism, had been bullied and made fun of a lot lately. This ridicule was to the point that it actually pushed him to think thoughts of suicide and unworthiness. The kicker is that this child was only 10 years old. The other problem was that it wasn’t just his peers who were making fun of him and calling him names. According to his sibling, he had adults, yes grown people, telling him some awful things.

Social problems are one of the major issues involved with autism. We understand that the children on the spectrum have problems talking with and socializing with others. This stems from communication problems. If a person has a problem with getting their thoughts across and vocalizing those thoughts then they are less likely to want to converse with others. This is amplified if every time you talk someone makes fun of you; especially adults.

There’s another quote that I saw that I thought was pretty strong. It said, “I’m not anti-social, I’m pro-solitude.” Sometimes this is true in most people, but I think that the “loner” label is inaccurate. What we’ve learned is that children with autism are not anti-social. They’re also not anti-social. They just need some help and coaching to allow them to be more comfortable with communicating with others.

People on the spectrum want to have friends. They want to talk to others, and they obviously want to be accepted by their peers. If they were loners and didn’t care then this young kid wouldn’t have problems with someone talking about him. He wouldn’t be contemplating leaving this life.

We have to look at ways to make everyone feel accepted. When I say everyone I don’t just mean those with disabilities, but this is a great place to start.

This is why I think we need more peer-mentoring programs. We have to allow these children to learn from others who are patient and understanding. It will allow those children to connect with children who have disabilities and understand their problems. It’s a win-win situation.

We obviously need to get the adults involved as well. Some of the best mentors in a child’s life are their teachers. This is why a teacher should step in and try to make a difference. If they have one person to make them feel like they can do well in life they are more likely to succeed.

Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column. You can also find all columns archived at