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.