Wednesday, February 27, 2013

Count Me In

Pervasive Parenting
By Kodey Toney
Count Me In
At our recent Partners in Policymaking meeting we met a man named Dr. Patrick Schwarz, PhD. Patrick is like a solar flare of energy. I just knew that at some point in his presentation he was going to explode, but he only threw out little balls of excitement here and there, making you wonder when it was going to happen. I wanted to share a few of the things I found interesting from his presentation.
First, let me share a little background on Dr. Schwarz. According to his website Dr. Patrick Schwarz is a dynamic and engaging professor, author, motivational speaker and leader in Education (Inclusive Education, Special Education, General Education, Educational Leadership) and Human Services. He is a professor at National-Louis University, Chicago. Patrick’s company is Creative Culture Consulting LLC.
His presentation was about Successful Inclusive Education. He explained that inclusion in the classroom is possible with all individuals, though it will take work and dedication. Much of his information was presented from his many years in the education field in the classroom, special education classroom, and many other hats he has worn including a parent.
His perspective on separate rooms for those with disabilities is that they shouldn’t exist. Children need to be with their peers regardless of need. His example was: “What are they going to do when they get out? If you have a child in a school for the deaf, what are they going to do, go to deaf Wal-Mart?” This makes sense to me. I’ve recently said that children on the spectrum need the interaction of their peers to help them reverse their introversions. They typically do better with the language and social skills because they can learn from those around them. Children with autism like to mimic those around them. If we are trying to bring them out of their shells then shouldn’t we put them in a room with others who are extroverted?
He explained that the best place to teach someone about life skills is in real life situations. For example; if you have a child that is learning about money, it is better to put them in a situation where they actually use the money to buy something as opposed to making them sit in a classroom and count out money for an hour. If you want someone to learn how to make breakfast, then they should learn when it is time to actually make breakfast and not at 10 a.m. after they have already eaten.
Another great quote was: “The only way to get out of prejudice is by education and inclusion.” This is so true. We can teach our children to accept others by including others. “When we put our children in special education classes at a separate lunch table, that is no better than Rosa Parks.”
If there is a doubt that this can work because of a language or social barrier, Dr. Schwarz used Ellis Island as an example. There were so many different nationalities coming through immigration. They didn’t speak the same languages. There was social awkwardness. However, it all worked out. They found ways to live and communicate together.
He explained that this was not going to happen overnight, and that there would be set-backs. If a child does something to get kicked out of the classroom you would have to have a plan to reintegrate. There will be issues, but it will work out in the end. Konner is great example. We have worked with him so much in the past five years, and we have work left to do, but I can remember a teacher saying that he would “never conform to the classroom.” Well, he still needs some work, but he’s come a long way, and is doing well. He only needs a little redirection, and there are a few times he needs sensory breaks, but for the most part, he works along with others and does very well. I’m convinced that he wouldn’t have been if he had been in a special education classroom.
As a parent, if you want your child to be in a regular classroom, and I hope you do, it will take some work, but you can make it happen.
I think the most interesting thing I learned from Schwarz was a new way to look at a disability. He explained that it was like an attribute. We look at people with different characteristics and tend to label them that way. Some examples would be someone with red hair, glasses, freckles, a big nose, etc. These are all things that a person is born with that makes them unique, like everyone else. So we don’t describe someone with glasses as “Gladys who is nearsighted. “ If we have to use a description we say something like, “That’s Gladys. You know, the one who wears glasses.” This is an attribute. Schwarz described the people as, “Johnny who has autism as an attribute.” I thought this was such a cool way to describe someone. If you need to explain; if it is important to the story then you just need to say that this disability is an attribute. I think I’ll start using this one.
This was one of my favorite presenters at the Partners in Policymaking class. Don’t forget that they will be at the Parents of Autism meeting at Carl Albert State College in Poteau on Thursday, Feb. 21. The meeting will start at 6 a.m. For more information contact me.
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.

Meet You There

Pervasive Parenting
By Kodey Toney
Meet You There
The number one problem I always see is the lack of resources for people with disabilities in our area. I always have parents question me about what is out there, where to go, and who to talk to about services for their children. I’ve been talking for the past few months about the Partners In Policymaking program and all the great information and resources they have provided me with. Two ladies from this group will be coming to Poteau to provide info, answer questions, and fill out applications for the program.
So who is eligible and why should you come to this meeting. If you, or someone you know, has a disability you should attend this meeting. This program is for anyone interested in helping others. This includes parents, family members, self-advocates, and professionals who work with people with a disability. It will make you a better advocate for services and rights.
This will be part of the Parents of Autism meeting February 21. The meeting will be held at 6 p.m. at the F.L. Holton Business Center at Carl Albert State College in Poteau.
This isn’t just for parents of children with autism. The program is designed for: Parents of children with disabilities; adults with disabilities; and advocates for persons with disabilities. There are people in the class with, or who have children with, Cerebral Palsy, Downs Syndrome, and a number of other issues. There are also special education teachers, church representatives, government employees, and in the past legislative members.
“The diagnosis doesn’t matter. The age of your child doesn’t matter. How much education you have doesn’t matter. What matters is that you are ready and willing to change the world,” states the brochure for Partners in Policymaking.
Partners learn how to work with public officials and professionals to promote change in public and private systems that support people with developmental disabilities and their families. Some of you might remember that in January I presented a mock bill to a group of state representatives. This was a great opportunity for me to learn the workings of the state law-making process, and was a good chance for our representatives to get a chance to hear our concerns.
If you become a partner you will receive training from national experts, resources including books, and participate in role playing experiences with local, state, and federal levels of advocacy.
This program is great for anyone wanting to better the future of their child with a developmental disability, or the future of others. It has been a great experience and I hope everyone will attend the meeting to listen to what these ladies have to say.
This meeting is open to everyone and is free.
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.

Monday, February 11, 2013

What was I thinking

Pervasive Parenting
By Kodey Toney
What Was I Thinking?
Children with autism tend to be a little on the literal side. This is no secret, but I want to share a story this week of something that happened to us recently. I think this shows a few lessons in dealing with children on the spectrum. You shouldn’t jump to conclusions, make rash decisions, and should always investigate a little closer to understand the meaning behind some things that you hear.
I’m giving this to you third-hand, so some of this may be paraphrased a little, but you will understand the idea.
I got a call at work from my wife last week and she said, “Miss Kandace (his aid who was taking over the class for the day since Mrs. Williams was out) caught me in the hall today and said, ‘Konner said he wanted to kill me today.’”
Now, I began to feel weird inside at this point. You see, I’m head of campus safety at the Sallisaw campus of Carl Albert State College. I have had hours of training on dealing with threat assessment. I knew what this statement could mean. I was thinking, “Ok, on top of everything else that we have to deal with now I’m going to have to get therapy for Konner because he’s threatening his teachers.”
She said that she then walked down to Konner’s classroom and began to question him.
“Did you tell Miss Kandace that you were going to kill her?” she asked.
“Yes mommy,” he replied. “And I know how I’m going to do it too. I’m going to make her stop breathing.”
Wow, now I have a pre-meditated murderer on my hands. This is getting a little scary at this point. I began wondering where he came up with this. Was it television? Was it something he was watching on the computer? He really only watches Thomas and plays Minecraft, but who knows with either of those? With Youtube you never know what they could be watching. We try to limit that, but it could be that he snuck something by us.
“Why would you say that?” Jen interrogated further. She was looking for some explanation for this irrational behavior.
“The other kids were around Miss Kandace and she said, ‘You guys are killing me. You’re too close I can’t breathe.’”
At this point things really started to come together. I began to see what was going on.
Then Konner added. “It’s my turn. I want to make Miss Kandace stop breathing.”
This was one of those “wow moments” in parenting a child on the spectrum. It really made me think about what was going on in his mind. Konner wasn’t trying to intentionally hurt anyone. In fact, he was doing something we’ve been pushing him to do for years. He was trying to be like everyone else. He wanted his chance to be close to Miss Kandace like everyone else. He wanted to make her lose her breath like the other students. The killing part was just him mocking her desperation cry; “you’re killing me.”
He’s no more sadistic or malicious than any of his peers. In fact he loves every one of his teachers and aides. So much so that he wants to show his affection the same as everyone else in his class. This brings new meaning to loving someone to death.
While he gave everyone a little scare he also gave us all a lesson in understanding the way his mind works. Don’t be too eager to assume the worst without first asking questions. I am as guilty as anyone this time, but I will think twice the next time.
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 3, 2013

The Power of Equality

Pervasive Parenting
By Kodey Toney
The Power of Equality
We recently celebrated the birthday of Dr. Martin Luther King Jr. As that day rolled by some enjoyed their day off from work and school while others moved on as if it were just another day. I began to think about what Dr. King was really trying to accomplish before his life was tragically cut short by bigotry and fear.
While King may be happy with the way things have played out in recent years I’m sure he would not be satisified with the amount of prejudice that still exists in the world. Let’s not kid ourselves, there is still racism toward African Americans in the world. The issue lies in other cultures and groups as well.
That same fear and ignorance is seen in the disability world. I’ve written several times about the civil rights of those with developmental disabilities. This is something that became more apparent when I was presenting by “mock” bill to the state legislators recently. The bill was actually introduced in recent years to the state congress but got lost in the shuffle of bureaucracy.
The reason behind this bill is what was shocking to me. It seems that in the 1930s the government was working to help increase employment for military veterans with disabilities, so they put into place an act that would allow employers to hire these men first and receive a tax cut and incentive plan. This was a great idea at the time. Along the way there was a section added that would allow employers to also hire individuals with developmental disabilities with the same perks.
This sounds like a good plan, however, many of those would be, and still are, employed for less than minimum wage. You see, the act has a clause where employers can be hired with a certificate from the Department of Labor for sub-minimum wages. This has its ups and downs, but the real problem is that some people are being exploited. Employees can be paid as little as one penny per hour. This is rare, but it is possible.
I’m only giving this as an example of the inequality still being shown in the world.
Dr. King had a dream, and, while much of that dream has come to light, there is still a lot that continues to be a visionary fantasy. We are still looking for equality in the classrooms and throughout our schools, in healthcare, and in employment.
I found it fitting that President Obama was sworn in using Dr. King’s bible as well as one used by Abraham Lincoln. Especially appropriate is the fact that this is the 150th anniversary of the Emancipation Proclamation, and the 50th anniversary of the March on Washington where King delivered his speech on the steps of the Lincoln Memorial.
Lincoln believed that “all” men were created equal. While he was borrowing from the Declaration of Independence, it is that search for fairness that we, as parents of children with disabilities need to continue to strive for in this nation.
I’m not trying to downplay the plight of African Americans and the tragedy they have had to overcome. I’m trying to explain that there is not equality in the world, despite what many want to believe. We have to work to change things for the future of our children and others struggling.

Make A Stand

Pervasive Parenting
By Kodey Toney
Make a Stand
I have a huge fear. My fear is that someday Konner will be in middle school. I know that sounds strange, but if we think back to middle school we can remember how rough that time was. There was awkwardness all round. If you hadn’t grown into your feet yet, you had too much acne, or you were a little too lanky for your body people would make fun of you. Nobody was exempt from the ridicule. It was just a rite of passage. Even the “cool kids” in your class were being made fun of by the people older than them.
I know it’s going to happen, and sooner than I care to think, but I just know that this will be worse for him than others. If I’m being honest, and I feel most of you were too, I was guilty of making fun of people throughout middle school.... Not because I really believed what was coming out of my mouth, but I thought that if I didn’t I wouldn’t be cool, and I would be the one made fun of instead.
So why am I telling this. There are several reasons I guess. Number one is that I really feel guilty lately for things in the past. I can’t think of any one incident that happened where I really made fun of anyone, but I know that I did, and I’m guessing that the person that I made fun of probably remembers. He/she will probably remember for the rest of their lives. If that is the case then I want to apologize.
These days I when I watch a movie that makes fun of someone with a disability I don’t really laugh anymore. I just think, why do people think that’s funny? Why did I think that was funny?
I want others to know that you are not alone if you have done this. Like me, you can help to change things. You can step in to help others with disabilities. Be the voice that stands up for those who can’t stand up for themselves. Advocate for others. Help them out in any way you can.
Perhaps the most important thing is that you talk to your children. Let them know that they shouldn’t make fun of others. They should stand up for others as well. They shouldn’t let others bully anyone else. This is where so many of the problems in our schools these days stem from. Explain to them that further down the line this will affect a child tremendously, but if a child with autism knows that they have someone who respects them enough to stand up for them it will help their self-esteem.
Don’t forget, most children with autism have social issues. If we show them that they have a friend then it will help them.
It’s funny how things change. You think differently when it’s your child that has a disability. I’m not sure now if there are many people I know who don’t know someone with a disability in their family or close to them.
Let’s not forget that everyone is a person. We are human. We have feelings. We need to show compassion to everyone. Don’t ever feel like they don’t understand you, hear you, or care what you say about them. It is simply not true. Don’t forget the golden rule in life; it goes for everyone.

You’ve Got To Fight For Your Right

Pervasive Parenting
By Kodey Toney
You’ve Got To Fight For Your Right
When I remember back to civics class in high school when we learned about the executive, judicial, and legislative branches of government, never did I think that I would use that information again. However, this weekend at Partners in Policymaking I received a crash course in legislation. This was way more in-depth than anything I was taught in school.
Our guest presenter Sandy Ingraham was awesome. She knows more about the Oklahoma legislature then most people I’ve met. She helped guide the class through the process of presenting a bill and helping get it passed through the powers that be in Oklahoma City, and it was not only insightful, it wasn’t boring.
This was all an effort to help us prepare for Sunday when we had to present mock bills to four State Representatives. This was nerve-racking, but awesome. It was just another great experience that I had during this program.
“So what does this have to do with being a parent? Why would this affect me? “ you might ask. As a parent, as I’ve said many times, you are your child’s best advocate. Your voice is very important to get the resources your child needs. Think about their future. What happens now can affect their future.
Most would say, “Well I can’t make a difference. I don’t like politics. They won’t listen anyway. They’re just going to do what they want to.” The four representatives that we had the privilege to present to took time out of their Sunday to assist us in the process. That means they do care about what is best for your child and others with disabilities. They are not alone. They are also human. It’s not about politics. It’s about getting what is best for you, your children, and others like you.
One of the main things each representative told us was to contact them. They don’t know what your concern is if you don’t call. If you have a problem with healthcare, services, resources, or anything that may be an issue with your child call your representative or senator. This is why they are there. This is why we elect them into office.
They all agreed that meeting with them in person is better, so make an effort to see them when they make stops or come to local events.
Know what issues could affect you and your child. Know your stance on it, and then contact your legislators to let them know why you feel that way. A great website to check in Oklahoma is This will give you any information you need to contact them and find out what issues are happening in the state. Each state will have a similar site.
The representatives we talked to told us that there is no way to know all that is going on in each bill. This is why you should call them and let them know there is a particular bill that you feel strongly one way or another about. They may not have been aware of it, and need some insight into the pros and cons.
According to Ingraham, if they don’t know about a bill they are most likely to vote no for it. There are several reasons for this, but one is that if they are confronted by a constituent they can just say that there was some wording that wasn’t right in it, or that it was in the wrong committee. If you have contacted them then they know the issue and can research their stance on it.
Of the five “mock” bills that we presented to the committee members, they were impressed enough with two of them to actually look further this week into introducing them in the upcoming session in some form. Even though neither was my group’s bill, it was awesome to sit back and watch my fellow classmates enlighten these members of the state congress on issues that can help people with disabilities in Oklahoma, and perhaps eventually the U.S.
One thing I would recommend is that you have your ducks in a row before you contact them. Think of questions that they will ask. If you don’t know the answer to the question tell them that you will get back to them on it, and make sure that you do.
Also, they suggested that you never make anything a partisan issue. This only complicates things.
I want to say a special thank you to Rep. Jon Echols, Rep. Jason Nelson, Rep. Ben Sherrer, and Rep. Jeannie McDaniel for their time and knowledge, and to the Partners in Policymaking staff (Ann Trudgeon, Diana McCalment, Erin Taylor, and Jen Randle) and mentor Ashlee Jayne for all their help and knowledge. They all made the experience less painful.
Again, you are an advocate for your children. However, you can also advocate for the thousands of others in the state that may have the same issues as you. Make sure that your voice is heard.
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.

Bang Your Head

Pervasive Parenting
By Kodey Toney
Bang Your Head
Jen and I have fallen in love with the hit show Big Bang Theory. The show is funny and well written, but one of the main reasons we adore it so much is because some things hit a little close to home. When it was suggested that we start watching this show, after the first five minutes I looked at Jen and said, “We’re raising a Sheldon.” Now, I understand that some may find this as a strange comment, but I think it’s a great thing.
For those who don’t know; Sheldon Cooper is a loveable, yet annoying, scientist who is demanding and stubborn. Ok, so Konner isn’t really any of these yet, but some of Sheldon’s characteristics are similar.
In a recent interview with Jim Parsons, the actor who plays Sheldon, he said that the creators of the show have told him the character does not have autism or Asperger’s. The creators themselves have also confirmed that they were just writing the character to have his own personality.
Let’s take a look at some of the traits that Sheldon has in common, or at least I think so, with Konner. These are also behaviors that stand out in people on the spectrum.
Sheldon, as many know, has an above average IQ and is a brilliant scientist. Ok, Konner hasn’t made any discovery of string theory recently, but he did have, as the doctor said, “A genius IQ.” I hope that he uses this to become a gifted scientist someday. If not, maybe he can use his autism super powers for some sort of good. After all, Konner is very good at math.
Sheldon has obsessive or repetitive routines and rituals. One such quirk is that he has “his” seat. This is a specific spot on the couch that is his. He also has certain weekly schedules and menus. Konner does not have this “spot” in our house. In fact he doesn’t really care where he sits. Most of the time he just paces or walks around. He does have routines though that he goes through. Like Sheldon, there are certain things that he has to do, like taking a bath before bed. Anytime his daily routine is broken it make for a bad time for awhile. He also has to eat the same thing, or type of thing, for lunch. He has to have Lunchables everyday at school.
Sheldon is socially awkward and has trouble communicating with others. There is usually a lack of sarcasm. I always say that this is a bit of an irony with Konner since I have sarcasm dripping from every word I say. Konner doesn’t understand my jokes most of the time. This is not to say that he’s not funny. He’s actually very funny in his own right; he just doesn’t use sarcasm.
Dr. Cooper also has sensitivity to sensory information, such as light, sound, texture, and taste. Konner has all of these. Texture and sound are his two major issues. He has trouble when there are loud sounds or too much going on in the room. Like most people on the spectrum Konner has an issue with clothes. Just the other day Konner was squirming around and saying that he hurt all over. He was wearing something new that he had received for Christmas. All the way home from wherever we had gone he was complaining that his body hurt. As soon as we got home he ran in the house and said, “Can I take my clothes off my body hurts?” The new clothes and whatever they were made of were bothering him so much it hurt.
In addition (Jen reminded me of this) Konner doesn’t like for anyone to help him with things. There was an episode where Sheldon is in an academic competition, but doesn’t want anyone else to answer questions. This is much like Konner.
I enjoy this show very much, and I admire the character of Sheldon. I think that he has shown the world that it’s okay to be different. Embrace what makes you who you are, and don’t change that for anyone. I hope that my son does grow up to be like Sheldon. If nothing else it is an entertaining ride. Bazinga!