Sunday, October 18, 2015

Kick A Little

Pervasive Parenting

By Kodey Toney


Kick A Little


Last week we got up extra early to head out to Owasso for Konner’s first ever soccer game. This was his first sporting event ever actually, this is because he’s never really been interested in sports. We’ve never really pushed him into anything he didn’t want to do because we don’t want him to be too uncomfortable. We always ask, but he usually says no.

So, when we heard about Special Olympics having soccer we asked if he was interested. I was a bit surprised at first when he said yes, but then I was a proud. He was to a point where he decided on his own that he wanted to try something new, something athletic, something social, and something that does not include electronics. This may also be because Kruz is playing this year.

I was still a little concerned a few weeks ago when we showed up for the first practice.  I knew that this was the first time Konner had been out of the house for any athletic activities. Ok, he does things in P.E. class, but let’s face it, soccer is not the easiest sport to play. You have to run…a lot.

When we had arrived to the first practice I was watching closely and tried to walk out on the field the first time he got frustrated. This was when his coach Barbara Leonard told me that he is fine and that I could go sit down. I decided to let her handle it and watch from afar.

Let me stop now to explain to those who don’t know about how Special Olympics works, because I didn’t prior to this experience. The athletes, who have disabilities of some sort, work with partners who are their typically developing peers. This is such a great show of inclusion. Everyone is equal. In fact, if anything the partners are at a disadvantage because they are not allowed to dominate the games. They are there to encourage the athletes and help them do their best on the field.

With that being said, we drove to Owasso for the 12th Annual Statewide Special Olympics Oklahoma Soccer Competition Wednesday. Konner has a tendency to fall down when he gets frustrated, or tired, so him staying in the game long seemed a stretch, but he played about as much as the other kids did. When he did get in the partners and coach were on the field helping to pass the ball to him and encourage him to score.

Once he got hot and tired he told his coach that he was too tired to play and just wanted to help her coach, so he spent most of the second game on the sidelines helping Barbara.

The sportsmanship is far above anything else I’ve ever seen. During the games I saw a little boy with noise-cancelling headphones being encouraged by his peers to kick the ball into the goal. I saw a little girl holding her ears with her hands, but she was led to the goal to score. I also saw opposing teams parting like the red sea to allow children with walkers and crutches to kick the ball to the goal and score.

I can’t say enough about the girls who worked with Konner to help him be a better athlete and person. Allison Matos and Hanna Weaver were great with him. They didn’t get frustrated with him when he decided to throw himself on the ground and have a fit, or when he would wonder and whine in the hot sun. They just worked to help keep him on task and tell him how good he was doing. The same goes for Barbara and Tanna and Randy Weaver, who work so hard to lead all the athletes and keep the Special Olympics going in this area. It is a great organization.

I would encourage any parent to try to push your kids to join if they are interested. Even if you don’t think they can do it, which I was skeptical, do it anyway. Make them get out of their comfort zone. You don’t have to torture them, but any social and athletic gathering will help them.

Positively 4th Street

Pervasive Parenting

By Kodey Toney


Positively 4th Street


I’ve discussed in the past that Konner has Attention Deficit Hyperactivity Disorder (ADHD) in addition to autism. The fun part is that our youngest, Kruz, was also diagnosed with ADHD a little over a year ago. That means that mornings in our house are twice as hectic. However, we have worked with a specialist to get medication for them that seems to help during the school day.

Jen found an article to help with ADHD in the classroom. I’m going to share some of these to try to help. You can use this information for all children though, not just those with ADHD or autism.

When you have a child with ADHD they can be impulsive and aggressive. These children usually don’t think about their actions before they act. According to the article, they can’t self-regulate or modify behavior. They don’t think about future consequences. It takes years of patience and persistence to successfully change this.

These are things that I lack as a father, so I’m usually at wits end with my boys. As I’ve said before, this is especially hard for someone who was raised by a father who was strict with the way we had to act. Looking back, I probably had ADHD. I can see it in Kruz, and have to remind myself that he probably had the same issues with me.

So what can we do to help curb these issues?

The first suggestion is behavior cards taped to their desks. Many teachers I know use behavior cards or some version of this.

I think the second suggestion is one of the best for everyone involved. They recommend using a daily schedule on the board or wall. Each time you finish a task or subject then you erase them from the board. This allows the child to feel a sense of control, but you have to let them know if there are any changes ahead of time.

The next is something that I’ve talked about many times with children on the spectrum. Routine is such an issue that warnings before transitions are a must. You should give a five minute warning before changing subjects, moving rooms, or just moving on to another task. This will let the child know that they need to either finish up quickly, or that they won’t be able to finish. It’s just good for all children.

They say you must have a plan ready in case something sets these children off. Let them have a special job to make them feel more in control and stay focused. They recommend a “monitor” or “coach” as a special job.

One thing that I liked about this article is the discipline section. It says that, “While ADHD is an explanation for bad behavior, it is never an excuse. ADHD may explain why Johnny hit Billy, but ADHD did not make him do it.” They have to understand their actions and suffer the consequences.

It says that discipline should be immediate, short, and swift. If you wait until later to discipline the child they will not completely understand. They need to be reprimanded immediately so that they understand within close proximity to the action.

As with any child, you have to provide immediate positive feedback and attention when they are doing good things. You have to give them positive reinforcement. If they constantly hear about the bad things they are doing they are going to start having self-esteem issues. They need to know that they are doing good things to know what you expect from them.

Rules posted are important. Again they have to know what you expect from them. We have even posted rules in our house before for Konner, and as I write this I think we need to post more for both boys.

A point system is good. Konner has a behavior punch card at school. Every time he does something positive he earns a punch. When the card is full he gets a reward that was agreed upon earlier in the week. This has worked well. Many see this as a bribe, but it’s actually positive reinforcement. A Bribe would be something we give him to stop or change an action that is actually happening. This can be done with pennies or stickers as well, but never take away a point.

I hope this gives a little insight into a child with ADHD.

Make A Change

Pervasive Parenting

By Kodey Toney

Make A Change

Several organizations banded together last week to bring a very informative conference into the area. The Joining Forces Institute was held to help families learn better ways to work within your community to help your child achieve a good life. There were several aspects to this event, but one that I want to hit on a little this week was how to partner with your legislators.

I know to many the thought of talking to politicians is just mind-numbing. We wonder, “Why should I even talk to them, how do I approach them, how do I even get in touch with them, and what good does it do?” All of these are valid questions, but I encourage you to talk to them.

Let me try to explain a few of these questions the best I know how.

Many legislators are very busy trying to understand the laws and many bills that are passing through their offices every day. They take the time to vote on the aspects that they feel compassionate about, and vote for or against the things that they feel will most affect their constituents, or at least that’s the theory.

So how do they know what to vote for? You! You are the voice that can let them know what is important to you and your family. They will not know what problems you have, or what your views on a subject are if you don’t let them know. They have several organizations, businesses, and institutions that lobby to them, or feed them their insight, every day. However, they rarely get calls from everyday citizens like you and me. When they do it is most likely to complain about something or to find answers to questions they could find within their communities.

What they really need is your insight on how the laws and regulations, or lack thereof, affect your everyday life. They want to know whether what they are going to pass is good or bad for your family. They really do want to help the largest amount of constituents with the things that will make lives better.

If there are not bills or laws already on the books to help then their job is to create those regulations if they feel it is important to the citizens of this state. They need your input to help guide those laws. We have to let them know that the budgets that they are cutting for healthcare providers are affecting the way we live our lives. It is disturbing the level and amount of care that we are receiving for your loved ones with disabilities. They have a tough job when dealing with these decisions, but will never know what it will do to you if you don’t tell them.

So how do you approach them? This can seem intimidating at times, but you have to remember that they are just humans like you and me. In fact, they are our neighbors. They live in the same communities and share the same services. They shop at the same stores that we do. Just talk to them like you would anyone else, but be quick and to the point. Understand that they have limited time. They need to know about you, your family, and what concerns you have in less than five minutes. We were taught in Partners in Policymaking to do a two-minute punch. Let them know all they need to in two minutes or less.

Getting in touch with your legislators may be easier than you think. All states have a list of their elected officials that include biographies and contact information. In fact, Oklahoma’s site is For my Arkansas readers you will visit

What good does it do? Well, you would be surprised. As I said before, most legislators have no idea that certain things are available, that certain problems are affecting you, and that they can make the changes to help if you don’t talk to them. Don’t think that someone else is going to tell them. They are probably thinking the same thing you are, “Someone else will tell them.”

Be proactive. Be the change.

ABC It's Easy As 123

Pervasive Parenting

By Kodey Toney

ABC It’s Easy As 123

Parent teacher conferences were held last week, and I made the journey to talk to Konner's teachers. While we did discuss some behavior issues I wanted to share the news of his grades with everyone. He made all As except a B in reading. 

This may sound like I'm bragging, that's because I am. I am very proud of his progress academically. 

I do want to discuss that B though. Reading may be a difficult subject for a child on the spectrum. 

Konner has no problem reading the words. His recognition of words and sounding them out is on an extremely high level. 

It's the comprehension that gets him. 

This is not surprising when you think about it, especially at the fifth-grade level he's at now. 

They are starting to get into literary works which include the things that really stump him like metaphors, similes, and idioms. The figures of speech cause his literal brain to work overtime. He doesn't understand most of them, and what he does understand he has to slow down to try to make himself process the silly expressions. 

This really came to light tonight as I heard Konner read from a series called the My Weirder School series. It's a great series that includes titles like "Mrs. Lane Is a Pain!" And "Mr. Burk is Berserk!". They include many little quips and figures of speech, but they tend to explain them as they go along. 

For instance, the main character named A.J. exclaims that someone is pulling his leg, but follows that by explaining that he's not really pulling his leg because that would be silly. “It’s just a figure of speech,” he explains.

He also talks about being as tired as a one-armed man hanging wall paper.

These little things seem small to us because we use this language every day, but it's these little things that cause children on the spectrum to have lower grades in comprehension. Again, they take everything so literally that they have a hard time understanding those lines. One line like this can throw an entire story off, or take up more time in processing the story. When many of the test they take now days is on a computer and it’s timed it makes things harder for these literal processors.

When reading with Konner I try to stop on some of these lines as we go along and ask him what it means. I then try to explain it if he doesn't understand. This little coaching can go a long way in helping a child in the spectrum understand literature better.

I Wish I Were Special

Pervasive Parenting

By Kodey Toney

I Wish I Were Special

This weekend I was away at training and Jennifer posted a conversation on Facebook between her and our youngest son Kruz. After inquiring about why he didn’t have an IEP, Jen asked him if he knew what and IEP was. He didn’t, but after a brief explanation he said, “For kids with ‘special abilities’ like Konner?” That was a proud moment for us as parents. It’s the perfect way to explain things. The way he sees his brother is the way I wish society would see him, and all people with special abilities.

This coincided with the training I was attending at the time. We were discussing the difference between micro and macro change. Micro is the change within the person while the macro is a change with society.

While it may seem easier to change one person, the person with a disability, that is not the truth. It would be much easier to change the perception of the world as a whole than to change the child. If we can change this then it will be better in the long run.

Many of you may be asking, “Is this guy crazy?” The answer is, probably so, but let me explain.

Perception is the only truly disabling factor of my child’s life. The real question should be this; how do you see my son, or someone with a disability? Do you see them as a problem or do you see yourself as a solution? Do you see their diagnosis as hindrance or a burden to your everyday life? Is the fact that you have to change your everyday routine to accommodate his issues a problem for you, or is it something that you find happiness in because you understand that you are helping him to achieve a better and more successful life? Do you think, “This is something that will help him, and in turn help others in the future?”

The Problem is not the person with a disability, but the assumptions we as a society have about his disability. That same old, “here’s his label…oh here’s what he can’t do,” mentality.

You see, Konner has autism. That is not going to change. That is his special ability. No amount of pushing, medication, therapies, or wishing will change that fact. He will have autism for the rest of his life. He’s not going to outgrow it, get over it, or snap out of it. It’s a part of who he is, and always will be.

However, with your help, he will learn to cope and tolerate the symptoms. He will learn to become more comfortable in the classroom setting, in school, in a work space eventually, and in society. He may even learn to accept the ignorance and stigma against him.

You may see me as a pushy parent. I may see you as a person that doesn’t want to help. You may see my child as a burden. What we should do is look past all of that to see what we can do to help the child.

Author Margaret Wheatly said, “It’s not differences that divide us. It’s our judgements about each other that do.”
You can be part of the solution or part of the problem. Until we change society’s views of people we will never truly make a difference. If you are reading this, the solution starts with you. I challenge you to make a change today. Change the way you see people. Instead of saying, “Oh that person can’t do this,” ask yourself and perhaps the person, “What can you do?” “What do you like to do?” “What are you good at doing?”

At six-years old, Kruz gets it.

She Ain't What She Used To Be

Pervasive Parenting
By Kodey Toney

She Ain't What She Used to Be

When I was a kid I can remember listening to the radio in my parents' car. If we weren't listening to Alabama or Don Williams on the 8-track player then it was the local country station in Kansas City. Every so often we were lucky enough that a familiar voice would come on. One distinct radio personality that was known throughout the land to tell amazing stories...Paul Harvey. 
For those who don't know, Mr. Harvey would come on the radio and deliver "The Rest of the Story" in a way that only he could. 
He would start by giving the person's name, but in a real cryptic way. He would only give a "real" name, so if the person was known as Theodore then he would refer to him as Ted, or if it was James then he would say Jim. He didn't want anyone to know too much about this person, but to draw their own conclusions from the story alone. This was a very unbiased way if delivering a great story about someone we all know, without revealing too much at the beginning. 
Then, at the end, he would unleash the big news, and everyone would have that "ah-ha" moment. 
I didn't understand the stories at the time, but thanks to the internet I've revisited many of those old stories (yes I know I'm a nerd). They really are not what they used to be, they are better. There is great information and inspiring tidbits that can help you feel better about yourself. 
As I was listening to one recently about a man that swam the Hudson River, non-stop, for six days and nights to get from Albany to New York City, I thought to myself, "This is how we should look at people with disabilities." You see this task in itself was impressive, but it wasn't until the end that Paul let the audience know that the man lost his legs in an accident. 
Those details aren't necessary to let us know how amazing this guy was, and it's not important to the story...that is until it is important for everyone to know. 
When talking about someone with a disability, you only need to reveal that they have a diagnosis if and when it is important to the overall story.

Free Falling

Pervasive Parenting
By Kodey Toney
Free Falling
One thing I try to do, whether it be with this weekly article or advocacy with the Pervasive Parenting Center, is to help families in the area find the resources they need to help their children get the services they need. There are some upcoming events I want to share that I think could help in these areas. 
On Thursday, September 24, the Oklahoma Family Network along with the PPC, Kibois Community Action, and several other organizations (there are too many to name here, sorry), are hosting a Joining Forces Conference in Stigler at the Kiamichi Technology Center. This is a FREE one-day conference open to all parents, professionals, and educators. There will be sections on how to work with others to make sure that you are receiving the services needed. It will help you learn how to organize and share personal information to promote their needs. It will also help you share your experience to help make a difference in the community, and how to work with others to form a relationship to help make changes. 
This conference will include a free lunch. Money for childcare and mileage are available as well. 
For more information, you can Contact me or Doris Erhart at or call: 405-271-5072 or 877-871-5072. The registration deadline is Friday, September 18, 2015. To register online go to: 
That evening, from 4 pm until 7:30 pm we will host the Sibshop at the Kibois Community Action building in Stigler. This is a fun time for siblings of children with disabilities to have some time to themselves. This is open to any sibling and is FREE. It will include dinner, games, and crafts. For more information contact Jennifer Toney at 479-462-7508. You can register for this online at
On Thursday, September 17, the Pervasive Parenting Center's Parent Support Group will start the first of three FREE Care/Communication Notebook Trainings in our area. This one will be co-sponsored by the Oklahoma Family Network, and will be held in the F.L. Holton Business Center, room 811, at Carl Albert State College in Poteau. This is the first of three trainings to be held in the area. We will also have them in Sallisaw and Stigler in the upcoming months. These will include supplies to get the notebooks started. The notebooks will help when keeping up with medical and educational information on your children. For more information on this training contact me at

Angry Again

Pervasive Parenting
By Kodey Toney

Angry Again

In the past few years I have tried to catch up on some of the "classics" in popular culture. This includes reading some great books that have come to be those "you've-never-read-that" type of books. I've also tried to see some movies that are in the top 100 of all time. While these are not always my cup of tea, I do find some that I think, "This is why it's a classic." 
So when I finally watched the 1959 movie "12 Angry Men" this week I truly loved it. It's a great story, great cast, and still relative today. 
Some of you are probably thinking, "Great review, but what does this have to do with parenting a child with a disability?" I kept thinking as I watched this movie how much it related to the issues we have everyday as advocates for our children. In fact it reminded me of an Individualized Education Program (IEP) meeting. 
For those who have never watched this movie, it's about a jury that deliberates, and only one man believes that the kid on trial is innocent. He slowly begins to present evidence to change the other juror's minds one at a time. Things get heated, there are stubborn jurors that are harder to convince, but as they learn more and more about the situation at hand they realize how close-minded they have been, and change their minds. 
As they talk, remember this was filmed in 1959, they use words like "these people" and "I've known a couple that were okay". While they were talking about the social and racial status of the defendant, I think this nails the mentality of many of the people if sat in IEP meetings with. This includes educators and parents. They have that same mentality that I've talked about in the past. We assume that a child with autism, or any disability, cannot function in a mainstream classroom before we even try. The problem is that our minds are already biased, so even if we try to work with them in the classroom we're not trying to find the positives to allow them to stay with their peers, we're already looking for reasons to move them to a secluded classroom. This erks me to no end. That is not the least restrictive environment that the law talks about. 
As Juror #8 Henry Fonda says, "Prejudice always obscures the truth." How profound. When you enter that room with prejudice you are not looking for truth. You are only looking for evidence to prove your point. 
We should be looking for every reason to keep a child in the classroom, not discriminate and sentence them to a lifetime of seclusion. We have to work to convince the team members one at a time that our children can function in the classroom.