Monday, June 26, 2017

Backwards Down The Number Line

Pervasive Parenting
By Kodey Toney
Backwards Down The Number Line
I've recently been in meetings with parents who were looking for more than they need. They were looking for a different diagnosis, or magic number. When it got down to it I realized they were just looking for what is best for their child, and they were afraid they wouldn't get the services they needed without it.
As I have said in past columns, I understand. I don't blame either parent because I too have searched for answers to help Konner because I thought it was what's best for Konner, when all along he already had what he needed. We just had to work with the school to get those services.
Without going too far into detail, I will try to explain the situations because I think it will help others.
One particular meeting included a parent who was pushing hard to get an IQ test for her son. Despite the fact that he had scored low on two, she was looking for a higher score.
Ok, this is where I'm going to say that I personally don't put much merit into IQ tests. There are so many factors involved in the testing process that can skew the results. The child could be tired, having a bad day, or just not cooperating. There are tests that are designed for verbal and nonverbal people. This is why Konner has scored around a 70 and a 131 on two different tests.
Therefore I had to give my opinion in the meeting. An IQ is just a number. It has nothing to do with the child's actual abilities. You see the mom new that the child was smarter than the number given to her. The truth is, so did the school. They were giving him the services that he needed to succeed in school, and ultimately in life. Mom was afraid, as most would be, that they would only see the number, and not the ability.
A similar situation happened at a different meeting. A mom, who had twice been to have evaluations for her son was still looking for answers. She was searching for a diagnosis that wasn't there, but she really was just worried that without it her son would not get the services that he needed to succeed. That too is a legitimate concern.
What should happen, and most of the time does, is that the school should look at the child, evaluate deficits, and use strengths to build on those weaknesses.
Numbers and labels are only used to get services. After that they don't matter. I've yet to meet two children with any diagnosis that needed the exact same services. Everyone is unique. That is why schools should design an Individualized Education Program (IEP) just for the child. That's what it means after all. It is individualized, meaning for one person, not one diagnosis.
If the school is not doing this then please contact me. I can advocate for your child in the school and help get the services needed.
You can email me at

Let's Do It

Let’s Do It
Pervasive Parenting
By Kodey Toney
Every Father's Day I reflect a little bit on what it's like to be a father, and talk a little about what it that means to me. I like to talk about my past influences, my dad, my grandpas, and all the father figures I've had in my life.
This Father's Day is no different. What I have figured out though, and that amazes me, is how often people tell me, “Well you're a great father. I don't know how you do what you do.”
This is something that the moms of kids with disabilities hear a lot as well. We are told this constantly.
“I don't know how you do it. You are a blessing.”
This is something that I’ve brought up in the past, but I think it is something to go back on and reflect a little bit.
I usually just tell people, when they ask how I do it, “I just do it!”
I think if you ask any parent, with a child with a disability or not, they would say the same thing. Single parents, parents with six-plus kids, any parent. They just do it. They don’t have any other choice. Sure there are things that are a little more taxing when you have a child with a disability, but it's really not that much different. You just pull from somewhere deep inside, and find ways to fix the problem. You soldier on.
Sure, I fail sometimes. Sure, I have to psych myself up some days, but I don't know any different. I just know that I was taught to be a parent. I know there are a lot of dads, and moms for that matter, out there that gave up their children. I really don't understand how you do that, but I know that it’s not the way I was taught. So, I just do it.
I want to say that I wouldn't have it any other way. One of the most important things, if not the most important thing that I do in my life, is being a parent. It has me going in 100 different directions that I never thought I would go in, and it's the most rewarding as well. It can also be the most frustrating but I love my two boys. I love watching them grow and make strides in life.
So, as I reflect a little more I want to say this in conclusion, Happy Father's Day to all you fathers out there. Thank you for all that you do. Also, happy Father's Day to all you mothers out there that have to be father's.
And to those of you who are thinking about being a father, I say just do it!

Take Me Out To The Ballgame

Pervasive Parenting
By Kodey Toney
Take Me Out To The Ballgame
I keep talking about how we must push children with autism into uncomfortable situations if we ever want to help them overcome or build a tolerance for their sensory issues or social awkwardness. This weekend Jen and I took Konner, and Kruz, on a sensory adventure. We took a trip to Kansas City for a Royals game and to visit family. The game was an overload, but he did very well.
Despite the fact that Konner has no interest at all in sports, we decided this should be a family outing. It was pretty hot, and that alone was enough to set Konner's fuse, but he endured well and really didn't complain too much.
He did have to use the bathroom every couple innings, but I'm not sure if that was a real need, or an excuse to get up and move. He was obviously bored most of the time.
Around the eighth inning he decided he needed to use the restroom again, and since Jen had gone before, it was my turn. As we headed up the stairs he began to ask me questions about the game. This is the first time that he had really shown interest in baseball, so I gladly helped him out. He wanted to know how many strikes there are in an inning. I explained that it was complicated, but that there could be as many as 18. He, being quick with math, figured out that it would be nine per side for six outs in the inning. I was very proud, and a little excited. He then worked up that there were a possible 27 strikes left in the game. I had to do some math in my head, he's way faster that I am, but I came up with the same figure. Being both proud of his math and the fact that he was taking an interest in baseball I praised him.
 "That's very good Buddy," I said.
He quickly said, "I hope it goes fast. I'm ready to leave."
Deflated I realized he only wanted to know because he was ready to go. He'd had enough of the game and was trying to calculate his exit.
However, he didn't know that the second round of sensory torture was just around the corner. On Friday nights the Royals have fireworks after the game. Konner hates fireworks because the noise hurts his ears.
When I told him we were staying for the fireworks he said, "Oh no! Please no! Can we just go back to the hotel.
During the fireworks he said with fingers in his ears, "This is loud, too loud."
Now it may seem to some that we were torturing Konner, and I suppose on a small scale we might be, but understand a few things; this isn't new to him. By that I mean, we've eased him into this. We have slowly, over the years, built up a tolerance for loud noises and places. We also are working to make these situations better in the long run.
I know this, if the Royals game was too loud we will not be taking him to a Chief's game, once the loudest stadium in the NFL.
I asked him at the end of the night what his favorite part of the game was he said, "When the innings were over. The end of the game."

You're Gonna Miss This

Pervasive Parenting
By Kodey Toney
You're Gonna Miss This
It just hit me today another breakthrough we've had with Konner that I've probably missed and am just now noticing. It's because over the years it has just evolved and become something I wouldn't have thought of if Jen had not pointed it out to me.
When doing trainings with parents and educators I talk about parallel play. This is one of the signs we look for in children on the autism spectrum.
This is when children walk up beside their peers and begin to play with the same toys, but never really interact with the person next to them. They may even go so far as to imitate them, but rarely ever talk to them.
The example I give is when Konner was in head start he would walk up to a little girl playing at the block station. You could tell that he wanted to interact with the girl, but there was no way he was going to actually talk to her. He would mock her motions and build similar things.
There is a common misconception
With children on the spectrum that they want to be alone. However, this has been proven to be untrue. They just lack the social and language skills.
So that brings me to today. I was listening to a conversation in the next room with Konner and Kruz. Konner actually asked Kruz if he would play with him. I know this may not seem like much to some, but looking back at eight years ago he would have never asked anyone to play with him. Heck, he could barely talk then.
He came in the other day and asked if I wanted to play trains with him. I of course did, because I know this is something that he couldn't do before.
It wasn't really that big of a deal at the time because he has been doing it a little while, but it snuck up on me. To think I almost missed it.

Thinking Out Loud

Pervasive Parenting
By Kodey Toney
Thinking Out Loud
I want to talk a little bit about a new concept, well new to me; it’s actually an old concept, that people on the spectrum lack. I hope that this helps you understand a little about why we should never assume things, especially with those with autism.
Theory of mind (TOM) is the concept that I’m talking about. I first heard about this, or at least the first time I remember hearing about it, was when the Pervasive Parenting crew traveled to Oklahoma City for autism screening training. Liz Moore, with the Oklahoma Autism Center, mentioned it in her presentation. Last week we held a training on autism behavior, and I decided to throw it into my presentation, so I had to do a little research. It is an interesting concept.
TOM is defined as the ability to attribute mental states, beliefs, intents, desires, and knowledge to oneself and others, and understand that other have beliefs, desires, intentions and perspective that are different from one’s own. Ok, so to simplify that, people on the spectrum often lack TOM and think that what is in their mind is what is in your mind. If I’m thinking of the color red then you are thinking of the color red.
For all you phycology buffs out there, this actually can trace back to Descartes’ Second Meditation. However, Simon Baron-Cohen really dove into this in 1985 when researching autism.
One test that helps explain TOM is the Sally-Ann Test. For those of you not familiar with this, the presenter has two dolls, one named Sally and one named Ann. He explains to the person taking the test that Sally has a ball and a basket; Ann has a box. Sally decides to go outside to play, so she places the ball in her basket. While she’s gone outside, Ann decides to take the ball and place it in her box. Then he brings Sally back in from outside and asks the person with autism where Sally will look for the ball first. The test results show that around 75 percent of the people tested with autism said that she will look in the box because they already know where the ball is. However, Sally should look in the basket because that is where she had left it.
It's an interesting concept that because in the child’s mind they know that the ball is in the box that is where Sally should look first.
For the record, I tried the test on Konner and our new intern Nick, both on the spectrum, and they both passed the test. They said basket.
I found a great video blog (vlog) on Youtube called Agony Autie, which features a self-described “30 year old Autistic woman, reaching out to others on the spectrum and their parents, carers & society in general.”
She gives a unique perspective in that all people should actually be more detailed in their words to people on the spectrum. Otherwise, they don’t understand how you really feel or what you are really trying to convey.
This is why idioms, sarcasm, and figures of speech are confusing to those with autism.
This is something I will continue to research, but it has been interesting so far. I hope it helps a little. Oh, and here is the link to the video:

Say It Again

Pervasive Parenting
By Kodey Toney
Say It Again
I think this week we'll explore the annoying side of autism. This isn't the sad or disheartening things that can come along with a diagnosis of ASD, rather the get under your skin until you pull your hair out side of things. This comes with echolalia.
I've talked about echolalia in past columns, but I will try to explain it in a nutshell. I'm raising a human tape recorder. Jen and I watch our every word because Konner will mock everything. In fact he's so good at it he sounds eerily like us sometimes.
For those of you thinking that all kids repeat things, let me explain that he says them verbatim, and sometimes for weeks at a time.
According to a site I was researching lately echolalia serves a communication purpose for the child, and it’s not just a way to try and frustrate people, it can help you to see it from the child’s point of view. This is probably true. Usually, and in the past, Konner has seemed to use this uncontrollably. It's almost as if something has taken control of his body and he just does it.
However, lately he has really enjoyed mocking me and his brother.
As we know, children on the spectrum have a hard time with emotions. This can get them in trouble at times as they mock or laugh when someone is crying or hurt. As Kruz has hit a stage where he gets mad and cries, this has been amplified in our house. Of course mocking Kruz when he cries makes him mad and he cries and yells more. Then Konner mocks more, and it's a vicious cycle.
He's also started doing this thing where he mocks the most annoying parts of shows or videos that he's been watching. He will pick the highest pitch, or the most irritating phrase and say it in rapid-fire style for as long as you let him. When I tell him to stop his answer is always the same. He responded by letting me know that someone else said it first. For example; "But Spongebob said it," "But Patrick said it," "But Kruz said it." That phrase, "But ___ said it," haunts me in my dreams at night.
I decided to show him how annoying it was by mocking him, and of course now he mocks me saying it; "But Spongebob said it, but Patrick said it, but Kruz said it."
I used to tell him that he could say it one more time and then he was done. That actually still works sometimes, but lately he's been repeating out of spite. I know this because I said the other day, "Konner you're just doing that to irritate me."
He replied, "How did you know?"
I guess one thing, good or bad, is that it makes you rethink everything you say.

Why Can't We Be Friends

Pervasive Parenting
By Kodey Toney
Why Can’t We Be Friends
Last week I had the opportunity to attend the 2017 Oklahoma Special Olympics Summer Games. While this was my first trip I had heard from so many that it was an amazing experience. They were not wrong. It was something that I hope I have a chance to attend many more times throughout the years.
We got involved in Special Olympics a couple years ago when we were looking for something for Konner to do to get him out of the house and away from the electronics. My wife, Jennifer, entered him into the soccer program with the Poteau Special Olympics. Tanna and Randy Weaver, along with Barbara Leonard, were so good to him and made sure that he was taken care of while on and off the field. We saw their compassion for the athletes, and we also saw our first glimpse into what it was like to be involved in Special Olympics. All of the athletes were competitive, but also very supportive of one another.
Jen has many students at her school that she thought would benefit from Special Olympics and decided that she wanted to start one in Panama. She talked to the Weavers and they were super supportive of the decision. In fact they have been with us (I say us, Jen is the boss, I’m just here for support as an assistant coach) through everything so far to help with paperwork, and even gave great advice during our first trip to the State Games.
Jen worked hard with the athletes to get them prepared for track and field events as well as bocce, although I had to figure out bocce.
A few short months later we were on our way to our first State Games with five Panama Olympiads. It was a great trip even though the weather didn’t cooperate with us, and we didn’t get to compete in the running competition.
We came home with two gold medals, one silver (Konner), a fifth and a sixth place ribbon in the softball throw competition.
I was looking forward to the running because I know that all of our athletes would do well, but mother nature had other plans, and because of the storms they were cancelled.
However, one of the best displays of what this competition is about happened in the breezeway of the stadium when we were waiting for the rains to blow through. Most of the athletes, coaches and volunteers were herded together under the bleachers, and while waiting a group from Bartlesville had started playing a game where they sit in a circle, chant a rhyme, and clap hands in a circular motion. Everyone around started getting interested as those participating began to get into the game. They became louder and louder. Some of the other athletes asked if they could play, and soon we had members of teams from Bartlesville, Mustang, and Panama all playing along. They were making friends and supporting each other. This is what it is all about. There were many fun times and memories made through the three-day event, but this may be my favorite.