Wednesday, December 30, 2015

Shine On You Crazy Diamond

Pervasive Parenting 
By Kodey Toney

Shine On You Crazy Diamond

As Christmas approaches I'm reminded of a few things. This is the season, first and foremost, to remember our savior Jesus was born. This is also the season for giving. We can't forget though that this is the season for outcasts to be celebrated.
That's right, we celebrate weird men in red suits, little people with pointy ears, and reindeer with special needs. 
Wait, what!?
Ok, let's look at this. Rudolph had a malformation of the nose which stood out from his peers. This was probably genetic, maybe environmental, though nobody really knows the cause of his rhinostereometry, it has been studied extensively and debated heavily over the years. 
What we do know is that Rudolph was an outcast, misfit if you will. His peers teased him because they didn't understand how cool he really was, or see his potential. They were just conforming to social norms and stigmas that generations before had created due to fear of the unknown. 
Therefor, he was sent off to this secluded place where he would live in solitude, or with "others like him". 
This wasn't something he could help. He was born this way. He and his parents didn't ask to have that bright, bulbous appendage attached to the end of his face, but it was a part of him. It was a characteristic that made him who he was, and he learned to live with it. In fact, he learned how to cope with it so well that he could use it to his advantage. 
The fact is, once he had someone who believed in him and saw his potential, the world found out what he could do it his special abilities was very useful. 
You see, Konner and Rudolph, or anyone with a disability for that matter, are not very different. I'm sure this was the moral behind the story by Robert L. May when he first wrote it in 1939, and that it's not a new concept. I just thought it should be mentioned again, because I can now relate to it better than when I was a kid. I think many of you parents out there can too.

The Kids Are Alright

Pervasive Parenting
By Kodey Toney

The Kids Are Alright

Tis the season for giving, and last week Jen and I had the opportunity to help out with one of our favorite projects of the year; Sensitive Santa.
While three counties in three days was a little stressful, it is well worth it for us. 
This event was sponsored by the Pervasive Parenting Center, and there are so many people that help make it possible that I won't do that here. What I want to do is just talk about some of my favorite highlights from the trifecta of festivities. 
The point of the Sensitive Santa events is to help children with disabilities not have to wait in line and go through the craziness involved in meeting the big guy at your typical mall setting. This way the kids can wander around while they wait, and approach him when they feel comfortable.
So, let me tell you about a little girl the first night in Stigler who has  vision impairment. She visited with Santa very briefly and then found the games we provided. She seemed to enjoy the games more as she worked her way through tunnels and ring tosses...and that's okay.
There was an older child with down syndrome that visited one night and was overcome with excitement when she entered the building. She let out a loud squeal and headed directly to Santa. She spent a lot of her time with him, and at one point made Santa stand up and dance with her, complete with a spin and a dip...and that's okay.
We had one little boy that is non-verbal visit. He wandered around, visited the fish tank several times, and never did warm up to Santa. Santa strategically placed himself for pictures, but the boy would not sit in his lap...and that's okay. 
There was a boy with autism that visited Santa quickly, got his pictures, and then spent most of his time watching the Peanuts Christmas stories and talking to me about Thomas the Train...and that's okay.
We had another boy who was non-verbal that didn't get a clear picture with Santa, but spent most of his time trying to figure out how the projector system worked...and that's okay.
We had a boy who has visited every year come in, sit on Santa's lap, and spend a lot of time chatting with the big guy. He felt he needed to spend his time catching up...and that's okay.
We had another boy who had to be kept from pulling on Santa's beard most of the time. He did visit with Santa and stay on his lap for pictures, but he is pretty much non-verbal. The smile on his face in the pictures tell me that he enjoyed his time with Santa...and that's okay. 
There was a little girl that was grabbing cookies, testing them, and then trying to put them back. Our helpers had to keep a close watch on her, but let her do her thing...and that's okay.
You see, this is what it's all about. Letting these kids be themselves, and letting them do whatever is comfortable to them. It's all about the kids.
Santa, at all three locations, was awesome with the kids. I can't say enough about how they, the volunteers, and the communities came together to make a great Christmas for the more than 30 kids this year. Thank you to everyone.

Shout It Out Loud

Pervasive Parenting
By Kodey Toney

Shout It Out Loud

Christmas Parades and Sensory Processing Disorder are not a good combination. The loud sounds of the sirens along with the marching bands, loud cars, radio station's vehicles blaring music, and screaming kids mixed with thousands of flashing and twinkling lights are fast track to overstimulation. 
With that being said, we packed up on Saturday night to watch the local parade. 
With the emergency vehicles leading the way, screaming and blaring in our ears, Konner pulled the hood of his coat over his head and covered his ears. The cars began short burst of siren noises and I noticed something. It seemed that they were still blasting out the noises, but I turned to look and it was Konner. He was imitating the sounds of the sirens at what seemed like the same volume level. 
This is a part of the sensory disorder that I don't understand. Any noise that is loud or irritating can be recreated at the same or similar volume of it comes from their mouth. I just don't get it. 
I'm here to tell you the sirens that came from his mouth were the same pitch and volume as emergency vehicles. That could be that I was right next to him, but it was ear piercing. 
We went to visit the Christmas train on Sunday and a truck with loud pipes came into the parking lot. It began to rack off the pipes and was scared a few people. Konner covered his ears. Immediately I heard a similar noise ringing in my ears. It was Konner mimicking the sound he had just heard. 
Again, I don't understand. How can the same noise that caused him pain be acceptable when it comes from his mouth? 
The silver lining is this; in years past these same sirens, bands, and loud trucks would have caused meltdowns. Because we continue to work with him and subject him to these noises he has learned to tolerate them. I suppose the answer to my question could be that his way of coping is to be as loud as they are.

Giving It All

Pervasive Parenting
By Kodey Toney

Giving It All

As Thanksgiving flies by, I have so much to be thankful for this year. While this is going to be my typical thank you column, it's a little different this year. I have to give thanks for something special. 
Last week I received a phone call from a mentor of mine. Ann Trudgeon from the Oklahoma Developmental Disabilities Council called to let me know that I had won the TARC Parent Advocate of the Year award. 
Let me start by saying what an honor it is to be a part of this. It is a state-wide award that spotlights people who have dedicated so much of their time to help others with disabilities. 
I was told by Ann once to not be so humble when talking about all the advocacy work that I do, but it's hard, because I know that I'm not the only reason behind this success. 
This award is not what advocacy is about. As I've always said, I'm just a dad trying to help my son, and in turn try to help others. I usually say that I'm just trying to do what I wish others would have done for me and my family when we first learned of Konner's diagnosis. However, over time I have had some great help along the way. They are the reason I've been able to do so well, and the reason I am receiving this award. 
My wife, Jennifer, deserves this award more than I do. That is the simple truth. She is the brains behind all that I do, I'm just the mouth and the vehicle that delivers it to the masses. She's usually at home taking care of the boys while I go out to help others. The things that she does with her kids at school alone deserves recognition. 
Konner is the true reason for this award. None of this would exist if it were not for him. He is the inspiration, the meaning, and my constant drive. 
Kruz is the yen to the yang in my life as s father. He shows me the other side of the coin. He keeps my life interesting, and helps me stay on my toes. 
Our families help us continue to go out and do the things we do by helping watch the boys and give us support. 
I have had so many mentors in the advocacy world. They have paved the way, and shown me how to be the most helpful and tactful while helping others. I jokingly say that Joe'l Farrar is to blame for all of this. She showed me how to advocate for Konner first, saw something in me that she believed could do something to help others, and introduced me to the Partners in Policymaking program so that I could help others. 
That is where I met the ladies from the ODDC. Ann Trudgeon, Jen Randle, Erin Taylor, and Diana McCalment gave me the tutelage I needed to think I could take over the world, or at least eastern Oklahoma. 
Wanda Felty of the Center for Learning and Leadership with her ties in eastern Oklahoma has taken me under her wing and helped prep me to be an affective advocate. 
The ladies at the Oklahoma Family Network have given me an opportunity to help others in this area with so many tools. Joni Bruce and Heather Pike in particular help, especially with encouragement. 
The Oklahoma Disability Law Center and Wrightslaw has helped give me the knowledge needed to get services for so many in this area. Kayla Bower, RoseAnn Duplan, Joy Turner, and Melissa Sublett, along with Pete and Pam Wright have been a fountain of knowledge. 
I know I've missed some, and there are so many before me like Donna and Tim Sims, Karen Nolen, Christi Taylor, and Francis Walls who paved the way. I have so much respect for these parents. 
Last is the drive behind the Pervasive Parenting Center, the board of directors. These are the people who make my dreams as an advocate a reality. Jen, Jay Falkner, Sherry Dotts, Amber Gonzalez, Shelley Johnson, Tamra Brown, Sandie Rutherford, Linda Callaway, Ashley McDaniel, Heather Loyd, and special consultants Brian Roberts and Janissa Jackson.
Everyday I pray that God uses me to help others and to do His will. He never disappoints. He is the real reason for this.

Things Get Worse

Pervasive Parenting 
By Kodey Toney

Things Get Worse

As promised, I will let you know a few things from the Autism Conference from last week that I felt were important and inspirational. One of these things is something that I think I really needed to hear from a man who is a national expert. His words of self-deprecation were actually words of encouragement for me. 
The keynote speaker in the first day was a gentleman named Dr. Jed Baker. He is the director of the Social Skills Training Project, and a leading expert in social skills and managing challenging behaviors. With that list of expertise it came as a surprise when he admitted to something that I found refreshing as a father. 
He said, "I've made the situation worse so many times." 
I've done many speaking engagements lately and in all of them I've told the audience that I'm no expert. I'm just a dad who's trying to do the best I can to help my son and in turn help others. I make mistakes. I make the situation worse. I even yell, but I try to learn from my mistakes. 
He said that there is no such thing as good or bad kids. There is only bad behavior that we need to confront. As I've mentioned so many times before, behavior is communication. How you handle that behavior is going to make a world of difference. You can make the situation worse by yelling, using frustrating verbal language and body language, or you can work to defuse the situation and use it as a lesson. 
Our first instinct in many situations, at least it is for me, is to tell our children not to do things. We get frustrated with them over it, and make things worse. 
What we should be doing, as Baker says, is checking our ego at the door. 
"It's not about you," Baker said. He went in to explain that it's about what that child is trying to get across to you with his actions. 
According to Baker we should listen to what they are saying or trying to say. We should agree with the conversation when it's warranted, and apologize when it's necessary. 
This is really good advice, and only a small piece of what was taught, but I felt it was encouraging.

Red-Headed Stranger

By Kodey Toney
 
Red-Headed Stranger
 
Jen and I went to the Oklahoma Autism Conference this weekend, and while I had fully planned on writing about the things I learned there it will have to wait until next week, because something happened on Sunday that changed my mind for me. In the past I have written about those moments when I realize that everything we have been working with Konner on over the years is paying off.
Let me rewind to about three weeks ago. Konner had been watching television when he came to me and said, “Daddy, the Peanuts Movie is in theaters. Can we go see it.”
This alone is a great thing. Konner rarely asks for anything unless he really wants it. He is the hardest to buy for on his birthday or Christmas because he doesn’t ask for much. So of course I’m not going to tell him no.
Now, we don’t go to the movies much because of his sensory issues. He doesn’t particularly care for the loud sound system, all the smells and craziness that come along with movies. We usually wait for the movie to come out on DVD and then buy it for him to watch at home. In fact, we have asked him in the past if he wanted to go to movies that we thought he would like and he would tell us that he would wait until it came out on video. 
This was different. He didn’t want to wait. Something inside him wanted to brave the sensory overload and watch Snoopy and the gang.
Since we went on a Sunday night it wasn’t very crowded. In fact there were only four families visiting this night. This kept down the noise and anxiety.
He wore a hooded shirt, and as the lights went down and the sound went up Jen told him that he could put his hood on if he wanted to. He slipped the hood over his head and kept that there to muffle the noise slightly.
I wasn’t sure that he would pay attention, but his eyes didn’t deviate from the movie the entire time. He was zoned in on stories of Charlie, Linus, Lucy, The Little Red-Haired Girl, Snoopy and Woodstock, and the Red Baron. Every time I would look over at him he was locked in on the screen.
Throughout the movie he was giving a play-by-play. He would tell about the things happening on the screen and give his own commentary. This is where I noticed something interesting that made me proud.
He said, “Charlie Brown is really acting shy about the Little Red-Haired Girl.”
I thought to myself, “Wow, he understood that Charlie is being shy.”
For those that think that this is not unusual, children on the spectrum have a tough time understanding emotions. This is something that we have worked diligently with him on for the past few years so that he can take cues from their facial expressions and body language to help him pick up on others feelings.
So in another part of the movie he said, “Charlie Brown is really mad.”
I smiled a Jen a little and she smiled back.
In one of the later scenes he commented, “Charlie Brown is really sad about…,” and went on to explain the scene. Again we looked at each other and smiled.
We were very proud that he had picked up on the emotions based on the characters and how they reacted in the movie.
When the show was over and we began to head home I asked the boys if they enjoyed the movie. They both said yes, so I asked what their favorite part was. Konner said that he liked the parts where Snoopy fought the Red Baron.
Then I asked him how he knew that Charlie Brown felt all of those emotions that he had described throughout the movie. He explained the body language and facial expressions that helped him to key into those emotions.
This is one of those pay-off moments as a parent of a child on the spectrum. This is where all of the therapies and hard work come into play. It’s really a bit overwhelming, but it’s also rewarding to know that you have been doing something right.
If you have a child on the spectrum and you feel that they are struggling with things that you think may never happen…hang in there. Keep up the good work. It will pay off.

Hold On Loosely

Pervasive Parenting
By Kodey Toney
 
Hold On Loosely
 
In the ongoing battle with idioms I thought I would share a few breakthroughs that we have had in the past couple weeks. I think these show a couple things that are associated with the miscommunication and social issues involved in autism spectrum disorder. It shows that we have to work on social cues and figures of speech. It also shows that when given some instruction you can help them understand.
I know this is something that I have talked about a lot in the past, but it has come up several times lately and I think it’s worth talking about.
Konner’s speech therapist His speech therapist Catey Doby has been working with him on this for several weeks now. She is trying to help him understand that people don’t always mean what they say. 
What made me think about this is that this morning I was trying to get him ready for school. He came into our bedroom and was talking to me. I told him he needed to get dress, and before I could finish he started to walk out of the room. I needed to get him some socks, which are in our room, so I told him to hold on for a second. As I was sorting through his socks for the right pair, I heard him say, “I’m holding on…I’m holding on…Daddy, I’m holding on.”
I turned to look and I see him holding on to the corner of the wall with both hands as hard as he could. I said, “What are you doing.”
He said, “I’m holding on Daddy. You told me to hold on.”
After I got through laughing for a few seconds I tried to explain to him that I really didn’t mean to “hold on” to anything. I told him it was a figure of speech, or idiom, and that I really just meant for him to wait while I got the socks for him.
Last week it was storming and he came in during the hardest part of the storm. He said, “Mommy, it’s really raining cats and dogs outside right now isn’t it?”
Jen replied with a bit of a laugh of amusement, “Yes it is.”
He said, “That doesn’t mean that cats and dogs are really falling from the sky though. It just means that it’s raining really hard.”
This was something that Mrs. Catey had been talking to him about. The really exciting part for us was that he understood, and he used it correctly in the moment.
I was talking about him to someone else later that week, and we were discussing that he didn’t talk much when he was younger. I didn’t think that he was really listening. I wasn’t talking bad about him, but I should have known better than to think he wouldn’t be taking in the conversation.
He interrupted, “Do you mean that I clammed up Daddy?”
It caught me off guard, and after I figured out what he meant I said, “Yes, I guess in a sense that is what I meant.”
It wasn’t the perfect use of the idiom, but he did get the gist of it, and he was trying to use it in conversation. What a breakthrough! He was, first of all, being social. He was having a conversation with us, and he was trying to understand the idiom he learned and use it in context.
We have talked about these lately, and I told him that if he doesn’t understand when someone uses these idioms to just ask. He has to learn what they mean and when he can use them properly.
Speech therapy works, and thanks to Catey Doby for helping him with social skills.

Isn't It Ironic

Pervasive Parenting
By Kodey Toney
 
Isn’t It Ironic
 
I’ve determined that my son is a computer. Ok, before anyone thinks I’m being too insensitive, let me explain. I had a bit of an epiphany today. What I should say is that Konner acts like a computer at times.
You see, autism, as we know, is a neurological disorder that affects a person’s ability to process information. More specifically, it affects the way they process language and social skills.
This is much the same way a processing chip of a computer processes the commands given by the user between the keyboard and mouse to the central processing unit or CPU. Now, I’m not a computer expert, but I know that different processors can deliver information more quickly and make the computer run faster.
What caused me to have this idea is that Konner was in the computer room this morning yelling at the computer. This is not unusual. In fact in the past couple years we have been through almost 10 computer mice, an iPad, an iPad screen and a computer screen because Konner has been pretty rough on electronics.
This is not from a lack of trying on our part to curb the situation. We have talked to him until we are blue in the face about remaining calm and taking breaks. We have grounded him, given him timeouts, and even made him wait several months before replacing the screens.
I have gone through social stories, stories written to help people better understand social skills, and tried to make him understand that it is unacceptable.
The problem is that he, like many in this technological world, want immediate gratification. He wants things to happen and happen now. He doesn’t want to have to wait for a slow processor or lagging internet. When he pushes the button he wants results quickly.
The irony is that I, as a father, want the same thing from my son. When I ask him a question I want an answer as quickly as possible. When I ask him to do something I want him to start moving immediately. I don’t want to have to wait, or for there to be a lag in results.
The way he feels when the computer is not responding the way he wants is the same way I feel when he doesn’t do things right away, but I have to understand that’s the way his brain works. I have to relax, stay calm, and wait for him to process the information. This is easier said than done, and I usually fail.
When the two issues intertwine then we really have problems. As I’m writing this, Konner is having an emotional issue involving the computer. He is upset and said that he is very angry. He is in near tears and is hard to reason with. This however is what I’m trying to do, but he doesn’t want to listen. So he is taking a break from the computer for a while, but it causes him to be more upset.
His yelling and failure to cooperate is causing me to get frustrated, and that is a bad formula for communication between the two of us. So I’m stepping back for a few minutes and we will “reset” if you will and start again in a few minutes; which is what he probably should have done with the computer and then we wouldn’t be in this situation.

I Hope You Dance

Pervasive Parenting
By Kodey Toney
 
I Hope You Dance
 
As I write this I’m sitting in a hotel room in Phoenix, AZ, at the National Parent to Parent Conference. As many of my readers know I work part time for the Oklahoma Family Network, which is the state P2P group. So, what does at P2P group do, you might ask? Well, this week I’m going to try to break that down for you and help understand how it can assist families in our area, and eventually change the future.
Before I tell about what a P2P is, let me give a little background in how I got introduced to OFN. I had met Joni Bruce, the director of OFN, when I was in the Partners in Policymaking program in 2013. She came in to present to us about the organization, and when she did I didn’t think much about it to be honest. I thought it was a great group, but wasn’t sure how to use it.  
However, as I began making regular trips to the state conferences and other events I started noticing her more, and we began talking about the things that I had been working on in our area of the state. That is when she said, “You know, this sounds a lot like what we are doing. Do you need a job?”
I explained that I didn’t, and probably couldn’t spare any time anyway. She just kept hitting me up to help them out, and finally I told her I would. It was a great decision because I have learned so much from my experience.
So, today as I’m setting in the conference welcome ceremony I picked up a few things that explain what we do. In a nutshell it breaks down to four things: support, self-advocacy, inclusion, and self-determination.
The support part is the easy part to understand. We work to help support families who are going through the same, or similar issues, as other families. This may include finding resources, being a sounding board, linking them with other families to talk to, or a variety of other one-on-one supports.
The self-advocacy is a way of helping those families, and potentially those with disabilities, advocate for themselves. It’s like the old saying, feed a man fish and he eats for a day, show him how to fish and he will eat for a lifetime. If we can show families how to find the services and empower them to stand up for their own rights they will be stronger advocates for themselves and hopefully others.
Inclusion is also self-explanatory, but we have to work to make sure that people with disabilities are being included in all aspects of life. Often we are fighting for inclusion in education. The reason is that schools seem to need more help with this idea, and our children spend most of their time there during the day. We can’t forget about other areas that we spend our time. Churches, clubs, organizations, and restaurants all have to be places where we feel comfortable taking our families.
Self-determination is a bit trickier. You see we have to garner a sense of leadership in families as well as those with disabilities. We need to help them understand that they must be the ones to change things. They are the ones going through the issues, so they have the best advice and insight on the problems.
The most important thing that they discussed giving was hope. I’ll leave you with this quote that was presented from Rob Bell: “Ultimately our gift to the world around us is hope. Not blind hope that pretends everything is fine and refuses to acknowledge how things are, but the kind of hope that comes from staring pain and suffering right in the eyes and refusing to believe that this is all there is. It is what we all need – hope that comes not from going around suffering, but from going through it.”

You Will Always Be My Boo

Pervasive Parenting
By Kodey Toney

You Will Always Be My Boo

Halloween is upon us again, and I would like to revisit some tips for parents dealing with autism during this season. These are things that I have written in the past, but I feel they are important to remember. 
The first one says: “The child who is grabbing more than one piece of candy may have poor fine motor skills.” Don’t forget that reaching into a bag full of goodies can be challenge for a child who can’t grip a pencil right, or grasp a spoon just right. Don’t scold them for having too many items. ...
“The child who takes forever to pick out one piece of candy may have motor planning issues.” It takes Konner a few seconds to process information when it is presented to him. Have patience with children. It may take them a little longer to decide, first what they are supposed to be doing, and then what they want. 
“The child who does not say trick or treat may be non-verbal.” If they can’t talk you can’t hold that against them. They are not being rude, just being themselves. 
“The child who looks disappointed when they see your bowl might have an allergy or be diabetic.” It’s always a good idea to have some alternatives for children with either of these issues. Some parents won’t even let their children go out on Halloween because of this. It’s a good idea to think about the allergies when picking out goodies ahead of time. 
“The child who isn’t wearing a costume at all might have a sensory issue (SPD) or autism.” If underwear have teeth, then a costume with lights, lots of plastic, and a mask could feel like hooks digging into their skin and face. Don’t shun a child, or become rude if they are not wearing anything. An idea for a parent may be just to put a festive shirt on instead. Something that says Happy Halloween, or just boo. 
Also, if a child wanders and invites themselves into your home, it may just be their curiosity. Konner is a wanderer and every year we have to tell him not to just walk into a house. 
These are just a couple ideas. Be nice and be patient. 
Don’t forget that Halloween is supposed to be a fun time of year for all children. Those with social and sensory issues can have a hard time with all of the mingling involved in going from house to house and talking to strangers. Please don’t make it a spooky time for them.

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 http://www.oklegislature.gov/. For my Arkansas readers you will visit http://www.arkleg.state.ar.us/.

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 doris-erhart@oklahomafamilynetwork.org or call: 405-271-5072 or 877-871-5072. The registration deadline is Friday, September 18, 2015. To register online go to: http://stiglerleadershipinstitute15.eventbrite.com 
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 www.pervasiveparentingcenter.org.
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 ktoney@pervasiveparentingcenter.org.

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.

Wednesday, August 26, 2015

Big City

Pervasive Parenting

By Kodey Toney

Big City

I took trip to the “big city” on Friday for my first meeting with the Developmental Disabilities Council. I saw some old friends and made some new ones that I think are going to beneficial in the near future. However, when I learned about what the council has done in the past I wanted to share this information, because I knew about some of these programs, but didn’t realize that the DD Council actually helped start them. Many are very beneficial to the people of our area.

The council is a Title I program set up through the governor’s office to help individuals with developmental disabilities; obviously right? However, what falls under that includes the protection and advocacy systems in the state to guard the legal and human rights of individuals with disabilities. They also help set up set up university centers for excellence in developmental disabilities education, research, and services to help provide continuing education and community services, and to conduct research and spread the information. They also collect data necessary to help improve lives of individuals with disabilities, and provide technical assistance.

One of the programs started by the council is Project Peak. This is a training and support network to help educate children on the autism spectrum. They work with the local and state agencies as well as the schools to help provide training for children in the school environment.

Oklahoma Assistive Technology Center was a program started to help families and school find the technology they need to help make a better life for those with disabilities. They would provide devices on loan and help with training to learn to use those devices to make sure it was necessary for that individual. This has shifted in the recent past, but Oklahoma ABLE Tech has taken on a similar role and is available to help with technology needs.

Dreamnight at the Zoo is sponsored by the ODDC every June. The first Friday of the month the zoo provides access to families of children with disabilities. The council funded disability awareness training for the zoo employees which is now part of new employee orientation. The zoo also works with zoos from across the country to help with access for those with disabilities.

Youth Leadership Forum is a week-long program on a college campus that helps high school juniors and senior prepare for post-secondary education, independent living, and career development. They are also taught self-advocacy and leadership skills.

Partners in Policymaking is the great program that I graduated from in 2013. This is a nine-week program designed to help self-advocates, family members, educators, and professionals better advocate for themselves and others. There are so many aspects to this one that I couldn’t possibly list them all, but they will make you feel like you can take over the world when you are finished.

Oklahoma Sibshops were also developed under the ODDC. While the program itself was developed in Washington state, the programs were nurtured by the council to spread throughout the state. This includes the one the Pervasive Parenting Center began last year. We will start back up in September to help provide families with assistance for siblings of children with disabilities.

These are only a few of the things that have the council planted the seed for. Also under their supervision was the Governor’s Conference on Developmental Disabilities, Sooner Success, and Keeping Families together.

I am truly honored to be a part of this great council, and to use it as another avenue to help others.

Serve Somebody

Pervasive Parenting

By Kodey Toney

Serve Somebody

In the news lately there has been a great deal of talk about law enforcement and children on the spectrum. I know this is not something new, but in light of a situation in Covington, Kentucky, where an 8-year-old boy and 9-year-old girl were having discipline issues and were handcuffed around the biceps by a resource officer to keep them from hurting anyone or themselves, I feel compelled to speak about this.

Let me start by saying that I have friends in law enforcement and I highly respect the work they do with the communities in the area. They put their lives on the line each day to help protect and serve and for that I am truly grateful.

I also know that when they are going through whatever training they have, whether that be Council on Law Enforcement Education and Training (C.L.E.E.T.) certification, Highway Patrol School, or some other police academy training, very little is given in the way of how to handle people with disabilities. This includes developmental disabilities and mental disabilities. They have more important things to deal with such as keeping themselves and other alive. I understand that.

However, as a parent of a child with autism I am concerned with how they will react when my child is having a bad moment, becomes a discipline issue, and begins having an uncontrollable meltdown in their presence, and they have to find a way to handle the situation. Their first reaction is to control the person and in turn control the situation by whatever means are necessary. This can tend to make the situation worse in the case of someone on the spectrum.

What I would like to propose is that all law enforcement, and emergency personnel for that matter, be trained in ways to cope with citizens with disabilities. This works on several levels. Let me start by saying that with a 72 percent increase in diagnosis of autism since 2007, and 1 in 68 being diagnosed, the number of people in society with the disorder is staggering. That is only the numbers of autism and does not include other disorders. This means that the chance of engaging a person with a disability is rising each day. So, in order to avoid a bad situation, and potential law suit, we should arm our officers with as much knowledge as possible to help protect those on the spectrum, those around them, and the officers themselves.

This isn’t just on the police departments though. The parents have the responsibility to make sure that the children are comfortable with the police. They must try to introduce them to an officer every chance they get. If you see a police officer, have your child talk to them. Make sure they are as comfortable as possible around them. Too often we paint this dark shadow on our police and make our children afraid of them. That backfires when they are lost, hurt, or in need of help and are scared to approach the police to ask for assistance.

This will be amplified when your child has been wandering and officers are out trying to track them down, or when they are having a meltdown. When the officer approaches them they will run or try to avoid the situation.

We also need to contact the local 911 and emergency dispatchers so they can add information into the systems (find a non-emergency number; do not dial 911 to do this). They can note that someone in the house may have a disability and need a cautious approach. This will work wonders in case of fires, medical emergencies, etc.

Resource officers in schools should be a number one priority since they will be the most likely to encounter a child on the spectrum.

The Pervasive Parenting Center is offering FREE training to any department willing to dedicate their time to a brief session. We will work with ways to approach someone with a disability and potentially avoid a law suit. If anyone is interested please contact me at ktoney@pervasiveparentingcenter.org.

As I said before, I think law enforcement agencies in the area do a great job. I just want them to be better prepared in case they every have the misfortune to have to deal with one of these situations. I want to help the families as well.

It's Now Or Never

Pervasive Parenting
By Kodey Toney
 
It's Now Or Never
 
This week I want to talk about something a little different. While it's not necessarily parenting advice, I feel it's important for those of us with family members on the spectrum.
A recent article I read talked about the price of caring for Americans with autism. The data presented by the Center for Disease Control stated that  the cost this year alone will be a conservative $268 billion. 
In the next 10 years that number is projected to reach $461 billion, according to findings published online in the Journal of Autism and Developmental Disorders. This is due in part by the rising number people diagnosed with autism.
I understand that the budgets are very tight, and are becoming tighter all the time. However, I want to encourage legislators to put whatever they can into something I feel could help in the long run. Before I say this I would like to preface it with a warning. I'm not a politician. I don't pretend to know the way that the world of civics work beyond a basic high school class. 
That being said, I feel that as much as possible should be put into helping with early intervention and assisting with community inclusion. That is, we should help families get the services they need in therapies, special education, transition skills, and insurance assistance. If we can help children when they are younger to receive the assistance they need to live a better life, to become productive in society, and eventually give back by having a job, paying taxes and helping others, then we can save funding in the long run to assistive living costs, caregiver costs, and long term Medicaid and other medical funding. 
We have families, especially in the rural areas, that need assistance with finding resources and obtaining the tools they will need to have an impact on society; to be productive.
Due to high divorce rates in families coping with disabilities, we have many single mothers, and fathers, raising children with little help financially. Many have to sacrifice their personal lives and even their careers in order to help care for their children. 
We also have families like mine where both parents work full time and make just enough money to be out of reach for any assistance with the many therapies necessary to help our children. 
We need better assistance for these families to help with divorce rates, insurance, respite care, and child care. 
This doesn't mean that I think other areas should suffer. We still need research and other assistance, I just feel if we concentrate on these areas it will help relieve the long-term funding. 
We can either pay now to help them become productive, or pay to assist them for the rest of their lives.

Sunday, August 2, 2015

It's Getting Better All The Time

Pervasive Parenting
By Kodey Toney

It's Getting Better All The Time

Sunday morning I woke up early, after several episodes with the snooze button, and along with the family, made the three-hour drive to Oklahoma City to celebrate the 25th Anniversary of the Americans with Disabilities Act (ADA). I'm extremely glad that I did. Besides the fact that I got to see many friends I also got to see the true spirit behind the ADA. That is the hard working advocates that make the ADA worthwhile.
Among the more than 100 volunteers and walkers there were family members, lawyers, social workers, friends, and self-advocates. These are the people that work tirelessly to make sure that themselves and others are protected by this act.
You see, this is nothing more than words on paper if we don't do our share to make sure that others are following the laws and rules set forth on that day 25 years ago when President George H.W. Bush signed it into law.
This has been a tremendous help to those of us coping with disabilities. It has given us some ground to stand on when trying to get equality in schools, work, and home. We have come a long way, but we still have a long way to go.
We still have employers who do not believe in giving a chance to those with disabilities. We have store owners and operators who don't feel they need to do what is right to accommodate those with disabilities. And, we still have educators and administrators who feel they don't need to make accommodations and changes for inclusion.
While this walk was as much a celebration of a great act put into place a quarter century ago, it is just as much a celebration of those who fight every day to make sure others are keeping up their end of things. The light keepers if you will of a beacon that started well over those 25 years ago.
It's also a reminder that we have more work to do, but as long as we have great people like those who organized and participated in this near triple-digit heat then I am satisfied that everything will continue to get better.

Celebrate Good Times



Pervasive Parenting 
By Kodey Toney

Celebrate Good Times

My classmates and I just started talking today about our 20-year class reunion coming up next spring. That made me think about what a great group of friends I had in school. I also started thinking about what a great group of people I work with now who are my friends, and what a great family I have. I wondered what it would be like if I didn't have those friends in high school. What would work be like if I didn't have those friends and coworkers, and what would life be like if I didn't see my family every day? 
This also sparked me to think what life would be like for Konner if it weren't for his friends in school. He has such a great support system with his fellow classmates. 
What will his life be like later when hopefully he gets a job?
What would life be like for any of us if he were placed in a home and we could only visit him?
These may seem strange, but a little over five years prior to my graduating high school an act was signed that helped make sure that the same life that has made me happy is readily available for my child on the spectrum. 
There were many other things leading up to the Americans with Disabilities Act that was signed July 26, 1990. As we come upon the 25th anniversary on Sunday I would like to share a brief history.
The Americans with Disabilities Act (ADA) actually got its start in 1973 with section 504 of the Rehabilitation Act.  However, it opened the door to many other great laws and regulations to help our children with special needs. One of these of course is the Individuals with Disabilities Education Act (IDEA), which states that my son, and others with disabilities, are entitled to a free and appropriate public education (FAPE) in the least restrictive environment (LRE). 
This means that Konner can, and will, get a public education in a classroom with his peers. He will also have the opportunity to live in the world at his will, and have a job if he wants. 
Now, it's a little more complicated than that, but honestly not much. 
A walk to celebrate the 25th anniversary of ADA is planned for Sunday at the Capitol in Oklahoma City. This is a great way for families to show their appreciation for the freedoms and rights that the act has allowed for everyone coping with disabilities. 
For more information contact Ellyn Hefner at 405-640-9408, or me at ktoney@pervasiveparentingcenter.org.

You're A Firework

Pervasive Parenting
By Kodey Toney

You're A Firework

With the Fourth of July weekend upon us I want to take a little time to talk about sensory issues related to autism spectrum disorder and coping with these issues. 
As many of you already know autism generally comes along with other issues. This is why it is a spectrum disorder. The comorbitity (a fancy name for multiple diagnosis) usually is accompanied by things such as Attention Deficit Hyperactivity Disorder (ADHD) like Konner, Obsessive Compulsive Disorder (OCD), Sensory Processing Disorder (SPD), or a number of other things for your child to deal with. 
The SPD is something to really consider as you make plans for Independence Day weekend. While we want to celebrate our freedoms and enjoy the fireworks displays we also want to make sure that we are not torturing our loved ones. 
Don't forget that children in the spect tend to have heightened senses. They see, smell, feel, taste, and certainly hear things differently from most. This is why sitting in a noisy gymnasium or cafeteria are painful and very difficult for a person on the spectrum. 
Most years we visit the big fireworks display the local fire department puts on in the next town over. It's s great display that lasts about 15-20 minutes usually and has many large explosions. Those bombastic pyrotechnics are louder than most over-the-counter fireworks, and are followed by a small aftershock. These things are enough to hurt a child on the spectrum and cause them to be more than a little anxious. 
I tend to try to monitor Konner and make sure that he doesn't get too anxious. His heartbeat begins to race, and of course he covered his ears. 
In the past we have tried a couple things that tend to help. We have given him headphones or ear buds to keep in his ears. Sometimes they have music running through them, and sometimes the are just there to muffle the sound. These have worked pretty well, although I would make sure they are okay with having something touching their ears. 
We have also used ear plugs. We have tried many different types, and they all seem to work well for him.
We have even used our own hands to shield the noise. 
I know these are just a few ideas, but I want everyone to be aware of their senses and not over do it for the holiday.

Breakfast Can Wait

Pervasive Parenting

By Kodey Toney

Breakfast Can Wait

When I worked in the newspaper business we had what is known as the “breakfast test”. With each article we wrote we had to ask if someone could read it while eating their breakfast. If it was too disgusting we had to then ask if it was worth the risk of grossing out the reader. Well, this week’s column probably does not pass that test, so I’m warning anyone with a week stomach to stop reading right now. This is a subject that I think is very important though for families with someone on the autism spectrum.

We will now proceed to talk about bowel movements…you were warned.

This was sparked by an article that I read last week about a girl in England that died recently from a heart attack after months of chronic constipation. The girl, who had autism, was withholding stool. She, like many on the spectrum, did this because she was reluctant to use the toilet.

For those wondering how she had a heart attack, the feces had become so impacted that it had compressed the chest cavity and caused displacement of other internal organs, according to the article.

So, how does it get to this point? Well, let me just say that we have had this issue with Konner. We monitor very closely what he does with his bathroom visits. However, if you didn’t you probably wouldn’t know much is wrong with the children. Depending on how verbal they are you most likely won’t get much complaint from them.

We have to monitor Konner very closely because there are times he is sick and it’s hard to tell if you don’t know the signs.

That being said, the bowel movements are a catch 22 of sorts. They tend to not go to the bathroom for sensory issues. They either don’t feel the sensations to have to go like most people do because of under sensitivity, or they have so much pain when they go that they don’t want to go. When this happens the real problems begin. They withhold stool so that they don’t have to go and put themselves through the agony, but they are only causing more problems. The feces begins to backup into their bowels and causes it to impact and become so big that it causes huge pain when it does come out.

With Konner we have used prescription strength laxatives, suppositories, and enemas (I’m sure when he’s older he’s going to hate me for telling all this about him, but I think it’s important). When he finally goes, as a man, I’m amazed at what comes out. I’m not going to go into detail for the sake of the breakfast test (I’m sure we’ve already crossed that like though).

I would recommend that you keep a close watch on their bathroom habits though. It can be much more of an issue than you would think. The young lady from England is a worst-case scenario, but I could see how this would happen quickly. Contact at physician quickly if you have any concerns, and if it seems to be a major issue a trip to the emergency room is not going overboard in my opinion.

I know this is not the most pleasant thing to talk about, and I apologize for anyone that I have completely grossed out, but it is something I think everyone should be aware of because it can have tragic results if not properly handled.

Independence Day

Pervasive Parenting
By Kodey Toney

Independence Day

Everyday Konner makes me proud in one way or another (Kruz does too for that matter). July 4th was no different. Well, maybe it was a little different.
I wrote last week about ways to help a child on the spectrum or with sensory issues get through a fireworks display. The funny thing was that we didn't have to use any of those things.
We had told Konner throughout the day we were going to a fireworks display, and about an hour before we left he came to us and said, "Mommy, you know how the fireworks are always so loud? Can I go stay at grandma's instead?"
Wow! What a breakthrough. This was a true Independence Day of sorts for him.
Now some reading this may think I'm crazy, but what it means for those of us with children on the spectrum is that Konner understood the problem, assessed the issue, knew it was going to be loud, and came up with a solution.
This is actually the second time in about a month that he has done this. When we went to the drive-in movie a couple weeks ago he told us he would like to stay with grandma then because it would be loud.
Some would ask, "Aren't you worried that he's not socializing and being with the family?" To a certain extent I am worried, but I know that it is better for him to be comfortable than to torture him with sensory issues.
We make him do plenty of things to test his senses and build a tolerance that these few things that he is asking us to avoid won't matter that much.
As I sat through the display and listened to the explosions that seemed like cannons at time I knew that it was a good decision. It was almost too loud for me, and I'm used to screaming guitars and loud amplifiers in my ears.
 When we went to pick him up there were neighbors shooting small fireworks next door. Those small booms were nothing compared to what we had witnessed before, and yet, the whole way to the truck he had his ears covered in agony.
I knew we made the right choice.

Tuesday, June 30, 2015

Go Ninja Go

Pervasive Parenting
By Kodey Toney

Go Ninja Go

Kruz is a huge fan of the Teenage Mutant Ninja Turtles. That's why when we heard about the live action show coming to this area we snatched up tickets. The show was held Friday night, and though Konner is not a big fan of the turtles we went as a family.
I wasn't sure if he would actually like the show. These things are hit and miss with him these days. It used to be too loud, too hot, too many lights, etc. Because we have been to several events throughout the years we have groomed him to the sensory issues.
This doesn't mean that he doesn't still have problems. It just means the issues are fewer and farther between.
You see, as I've said many times in the past, you can't cure autism. What you are actually doing is helping people on the spectrum learn to tolerate the issues that come along with autism. You have to help them understand that there will always be things to bother them. They will have loud noises, strange smells, and flashing lights. The only way to help lessen those things is to expose them to these situations. You will have to ease them in at first, and build up a tolerance.
On the way to the show I explained to Konner that we would probably have to wait in a line for a while. I told him it would be loud and there would be lots of lights and people.
The only real problem we had was that when we arrived nature called. There was a long line and people were waiting outside in the heat for several minutes. There was no way they were letting us cut through the line to take Konner to the bathroom. So instead we stood in line with Konner telling us loudly that he had to pee really bad, he couldn’t hold it much longer, and that he was going to get a bladder infection and not be able to pee ever again if we didn’t go “RIGHT NOW!” This caused a little frustration on my part, but once we made our way inside the doors He and Jen sprinted to the bathroom while Kruz and I got the tickets. 
So, as we sat there watching Kruz enjoy the stunts, fighting, and silly banter, I kept an eye on Konner. I was watching for any sign to see if he was going to get upset. I already had a plan in case he started go into meltdown mode.
However, the strangest thing happened. You see, if this had been a Thomas the Tank Engine event then Konner would have been enthralled. What I didn't expect was for Konner to get so into the Ninja Turtles. He has never shown much of an interest when we watch it at home. He doesn’t play with the action figures with Kruz or play the video games.
He was though. He paid attention to every word. He would repeat the parts they said to repeat, make the hand gestures, and answer questions as they were asked.
I never expected him to pay attention that closely. I expected him to sit there for a few minutes, get bored or frustrated, and then start kicking the chair in front of him, or around him, or behind him. 
It just goes to show that you can't predict everything. Konner surprises me just about every day. Sometimes bad and sometimes good. There is no doubt though that he teaches me something new each day, and he makes life interesting.

Right Or Wrong

Pervasive Parenting

By Kodey Toney

Right or Wrong

This parenting thing is hard…ok, so I’m not telling anyone anything they don’t already know if they have a child. I’m also not giving anyone with a child on the spectrum some crazy insight, but I have to share an incident that happened Sunday night. It involves Kruz mostly, but Konner was inadvertently drug into the situation. The problem was that he really didn’t understand what was going on, and felt like he was being punished.

Let me explain. We had been talking about taking the boys to see Jurassic World at the drive-in theater. Kruz was excited. He had been watching the three previous movies in preparation, and was psyching himself up for Sunday night. However, he decided about an hour before time to get upset over something and throw a fit. He yelled at Jen and he yelled at me. He had a full-blown fit. So…I decided to pick this as a teaching time. I know I’m probably going to be seen as a bad dad for this one by some, but I spanked him and told him he wasn’t going to get to go that night. That caused another meltdown…oh, wait, this WAS NOT a meltdown (for those who have not read my previous columns about the difference between a tantrum and a meltdown visit http://pervasiveparenting.blogspot.com and search for “I Melt Every Time You Look At Me That Way). 

As I’ve said many times before, when raising a child you have to pick your battles. That night I was in combat mode and was ready for whatever casualties may ensue.

I know you armchair parents will say, “You should have done this, and you should have done that.” As I’ve always said, children don’t come with an owner’s manual. You have to do what you think is best at the time, stick with it, suffer any consequences, and learn from your mistakes.

You will make mistakes.  Don’t beat yourself up about them. I say that only because I tend to do that. I try to do what I feel is right, and then have regrets later. I feel like my child is going to completely turn out horrible because of the things I do, but I can’t think of that. I can only do what I know and learn.

This regret came a few minutes later, not because of Kruz’s punishment, but because of Konner. He didn’t really want to go to the movie and decided to stay with his grandma. He was excited, and because Kruz didn’t get to go to the movies he didn’t get to go to the movie. He came in and I explained to him the situation and he said, “But dad, I didn’t do anything. Why can’t I go to grandma’s? Kruz was the one that was bad.”

The worst part is that he really doesn’t understand. I explained it to him, and I think that he gets it, but he really feels like he’s being punished for his brother’s actions. And, he really is. However, I was not about to give in for Kruz because of Konner. I was in the thick of this fight and unfortunately Konner was going to have to be a casualty of war.

In the end I think it worked out. Kruz learned his lesson, Konner, I think, understood what was going on, and we are going to try again for Jurassic World for another night.

If they are both scarred later down the line then I can at least tell myself that I tried what I thought was best at the time. Only time will tell.

Promises

Pervasive Parenting

By Kodey Toney

Promises

I found an article recently on Pintrest called “10 Promises Every Special Educator Should Make To Their Students’ Parents”. While there is some great information on there for educators, I think it can relate to the parents as well. I thought I would share a few of the thoughts and give some examples.

The first promise talks about not calling parents who have high expectations and advocate for their children “high maintenance”. I’m going to throw another term in here, “Cadillac mom”. They both mean basically the same thing, and to a certain extent they are not a bad thing. However, you must know a few things. A parent that asks for what their child needs is a great thing. We are our student’s biggest advocate, and as so we have to ask for what they need, but we also have to know what to ask for and what we can’t have. The problem is, with any parent, we want EVERYTHING we can get…and then some. Pete Wright talks about the education system as a vehicle. Through the Individuals with Disabilities Education Act (IDEA) we are promised a “Chevy” education. So often we ask for a Cadillac though. We are only promised what we need, no more, no less. Cadillac moms are those who ask for more than what they are promised by law. 

However, we should always have high expectations for our children. Ask for whatever you want, and if you get it that’s great, if you don’t then make sure what the law says.

The second one says that you should always presume competence. I don’t know how many times I’ve seen this working with schools, and sometimes families. They assume that because the child has a disability they can’t do something. WRONG! Never assume that just because of a label. In fact, I would challenge you to prove those assumptions wrong. If you have a child who you think can’t do something, as a teacher and parent, it is your job to make sure that you are working hard to push your child to do the impossible. You would be surprised at what they can accomplish with a little help and some encouragement.

There two promises that go together. They are to ask the parents for input on their children before the IEP meeting, and to remember that the parent is the child’s first teacher and the expert on that child. This is so important. The IEP team is just that…a TEAM. You must work together to help the child. The parent is with the child more than the parent, has known them longer, and will be with them longer in the future. It is important to get the parent’s input so they know what to look for with meltdowns. It is also vital to understand what the parent wants the child to learn. Is the main concern reading, writing, and arithmetic, or is it that the child can ask the teacher or a peer for their pencil when needed? These are both equally important for a child with a disability. In fact, it may be more important in the future for the latter.

Stop using “What is he/she going to get out of this?’ or “They’re not ready” as an excuse to not include a child in general education. This goes with the previous one. The child’s inclusion in the classroom and being around peers is reason enough for any child to be in the general education room. You never know what they are ready for if you don’t allow them to try.

There is a promise to never assume you know what’s going on at home, or blame a child’s behavior on parenting skills. You don’t know what happens in a house with a child with a disability. You don’t know the strain that puts on a parent, family, and relationships. You don’t know what it feels like unless you are in that house with them. Never assume anything.

Promise to be communicating with the child, especially on the positives. You have to acknowledge the children for their good things, more so than the bad. Always let them know that you are proud of the things they are doing well. Let them know what they could do differently when they are doing wrong.

Never assume that what works with one child works with all children. I would add that you want to try different things with a child too. If you tried something yesterday and it didn’t work then try it again today. You never know. Think of it as a bag of tricks. If one trick doesn’t work reach back into the bag.

I’ll just leave you with the last one because I think it is a great one. It may be the most important one because everyone involved needs encouragement.  “I promise to always have high expectations for your child and never give up on them…or you.”

Nighttime Is The Right Time

Pervasive Parenting

By Kodey Toney

Nighttime is the Right Time

English poet Thomas Hardy wrote, “Time changes everything except something within us which is always surprised by change.” Perhaps Hardy had a touch of autism, but I feel that this is especially true with a child on the spectrum. The concept of time has been something that Konner, and most people with autism, doesn’t seem to understand, but they have a tighter grasp on time than most.

This is a bit of an extension of last week’s column, but Konner has really struggled with the concept of time since being on summer break from school. He was so used to going to bed at a certain time and getting up at a certain time, and leaving for school, and eating, and classes, and recess, etc. all at the same time each day. Now that structure is gone and he seems lost at times.

As I said last week, Konner has been really emotional lately, and I feel in ways that has to do with his lack of structure.

In school the teachers in the past have used timers, visual schedules, and verbal cues to help transition between time periods and activities. This is a great tool for the classroom, but it will work at home as well.

I had a reader send me a message a few weeks ago that I thought was a great idea. I have to confess I haven’t tried it yet, but I think it could work well. I had talked about how Konner seems to get up early and come in to talk, or tell me about what he is going to do with the computer.

He used to actually tell us that he needed to use the bathroom. He would come in during the wee hours of the morning and say, “Dad, I need to go pee.” Then he would wait for me to tell him okay before he would go. That has luckily changed.

The suggestion from Laura Lawless was to give him a digital clock and tell him he can’t come out of his room until after a certain time, i.e. 5 a.m.

This can extend a little further into the day. You can make a schedule for the day and put down times for computer time, television time, iPad time, play time, eating, shower, bedtime, etc. These suggestions, like most, are great for any child, not just someone on the spectrum.

The longer days have Konner confused as well. He thinks it’s only night time when it’s dark outside. If it’s 6 p.m. I will say something like, “No we can’t do that tonight.” Konner will respond, “Dad, it’s not night time yet. He doesn’t understand that it is evening and almost night. In turn he doesn’t understand why we can’t do something “tonight” when it’s still light outside. Of course, Kruz has the same issue.

Last night I told Konner that it was bedtime. It was around 8 p.m., and he said, “Dad, it can’t be bedtime. It can only be bedtime if it’s night, and it can only be night if the sky is black.”

That’s not bad logic, but we’re working on it.

Keep On the Sunny Side

Pervasive Parenting 
By Kodey Toney

Keep On The Sunny Side

I just wanted to share a few stories about Konner from this weekend. Summer vacation is well underway, but that means a change in routine. Any parent of a child on the spectrum knows that this can be a difficult time. 
Konner is trying to adjust to s new routine. After spending ten months getting up, getting ready for school, going to school, coming home, doing homework, getting ready for bed, and then going to bed, you would think that just getting up and doing nothing, or whatever you want, wouldn't be a if deal. For most people that's true. Kruz is enjoying destroying the house and not having to go to school, but Konner has been a little different. He has been really anxious and emotional. He tends to worry about things that he shouldn't, like people getting upset with him, and he is on the brink of crying most day. This stems from the anxiety. I know that it is just because he's not sure about what is going on right now, and hopefully in a week or two he will calm down some. 
Much of the problem probably lies in the fact that his little brother is a pest. He tends to push him to his breaking point. Several times I have had to get on to him for hitting or pushing Kruz, even though Kruz probably deserved it. This us one of those typical brother moments, but it is adding to his frustration. 
On a lighter note, Konner came to me the other day as Kruz was just pushing his buttons. He looked at me very seriously and said, "You handle him daddy. I can't take anymore." 
I'm not sure where he gets this stuff.

Sunday, May 24, 2015

Teach The Children Well

Pervasive Parenting
By Kodey Toney

Teach The Children Well

I teach a few classes at the local college, and as I was finishing up entering my grades this week I started thinking about something. At the college level I expect more out of my students because they are no longer in high school. I tell them on the first day that I don't give grades, you earn them. I think this philosophy is true for any age, but I also think earning a grade is so much more than just the student doing their work.
All schools MUST adhere to the Americans With Disabilities Act. That means that I very often receive a letter telling me each semester that a student may have a disability and that I need to make accommodation. I do this for many reasons. I do it because I understand that this student has made an effort to attend school, and is working to better their life. I do it because I would want someone to do the same for me, and I would want someone to do it for my son. I do it because it's the right thing to do as a teacher and a humanitarian. And, I do it because IT IS THE LAW. I understand that if I don't make these accommodations after I've been sent this letter telling me I have to I can lose my job and potentially be sued.
I make these accommodation even if I don't have a letter telling me to. I understand that some of my students have special needs, but haven't requested assistance for some reason. I want to make sure that my students are learning. If they are not I try to find ways to help them learn. I'm not trying to set them up to fail. If they are showing an effort I will help them. If they are not I will try to motivate them.
I understand that people have issues. I try to work with those students and push them to do better. I feel that is my job as a teacher.
You see I feel there is a difference between a teacher and an educator. An educator can lecture, give the information to students, and let them do the work...or not, the choice is up to the student. I feel a teacher goes above and beyond for their students, all students, but especially those who have special needs in the classroom. If they need motivation or some special instruction then a "teacher" will go above and beyond.
This works on all levels of education from elementary to higher ed.
We have to help students with ADA requirements and IEPs. Not only is it the law; it is simply the right thing to do. If an educator doesn't feel that way I think they should find a different profession because they're not in it for the right reasons, to help others.
This is just my opinion.