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.


Pervasive Parenting
By Kodey Toney
I like to listen to podcasts when I’m on long drives around the state. One I recently started is called Autastic. This is one created by two comedians in California about their family members who are on the autism spectrum. One has a son on the spectrum, and one has an adult brother. They are trying to make light of autism, and sometimes that is necessary.
I’m only part of the way into the first one, so it’s too early for a review of whether I like it or not, but I will say that just their first explanation of why they do this, and their look into their loved ones echoes what I’ve said in the past, but it’s worth repeating.
They were talking about what each one wanted from their relative, and both said the same thing, though I think this explanation was the best.
“My dad always said that he wanted my brother to be a tax payer,” said one of the hosts. “I think that is the best way to say it.”
I agree, as did the other host about his son. What I always tell people is that the idea is to have your child lead the best life possible. For most that means to be contributing members of society. That means that they can have a job and do something every day.
Most people I’ve met with disabilities have just been happy to work. That’s a general statement, and I’m sure not 100 percent accurate, but for the most part it seems true.
I want my son to be able to hold a job when he gets old enough. That is why we are working with him now on social skills and etiquette in school and other public setting. When he gets older we will work on skills more related to work, but for now we have to start at the bottom and work up (this is also Temple Grandin’s philosophy).
This is the “you have to walk before you can run” idea of working with children on the spectrum.
I use the same ideas when talking to parents about communication skills. If you have a child that can say one word, let’s say drink, then when they want something to drink don’t just give it to them when they point at it. Make them actually say the word. After they get that down then make them add a word like, “Want drink.” If they get that then continue to add until you have a complete sentence.
No, I’m not crazy, and it can be difficult at times, and I always say pick your battles. If they are having a bad day you don’t want to force them to say things. However, if it’s a good day you may want to push them a little more. They have to be pushed beyond their comfort zone in order to continue to progress.
I hope this gives a little insight into the future of your child. And, as I said to a parent recently in an IEP meeting; the only limitations your child has are the ones that he/she and you as a parent puts on them. Don’t assume that your child can’t do anything, no matter who tells you.

Headed in the Right Direction

Pervasive Parenting
By Kodey Toney
Headed in the Right Direction
Konner and Kruz recently received some sunflower seeds to plant and they have started growing in a pot on the front porch. It has been really good for Konner because he has been taking care to make sure that they are watered and growing. They have been going for about a month now.
Yesterday he came in to the house, ran to our bedroom and said, “Dad, our flowers have grown so much.” He was so excited that he has seen so much progress on something that he has worked so hard to grow.
In almost the same breath though, strangely, he said in a frustrated tone, “They will never get really big.” His patience is about to get the best of him.
“No matter how much sunlight, no matter how much I water them, no matter how much I talk to it (he has read that if you talk to them they will grow so he talks to them), they will never get bigger,” he continued. “It’s going to take three months!”
He wants them to be ten feet tall tomorrow. He doesn’t quite understand yet that things take time, and as long as you take your time, and nurture them they will continue to grow until they reach at potential.
The funny part is that I see this in the parents that I work with some times. They feel like their child is not progressing fast enough. They want so much more.
One thing I ask for when trying to determine where a child is in school or with therapies is testing. I want to see all of the testing they have had through the years. The more the better for me. I want to compare where they have been from the beginning, and see how it stands up to where they are on the most recent. As long as there is an upward slope on those scores then there is progress, no matter how small.
The problem is that parents want everything to happen overnight. I get it. I was, and am, the same way. I want my some to progress as quickly as possible. The thought becomes, “If he gets therapy twice a week for 30 minutes, and it is working then I want him to get it four or five times a week. That will make things happen faster right?”
The answer is, most likely no. In fact, a couple things happen. The child is most likely going to get burnt out on constant therapy, the parent is going to get tired as well, and the child will shut off to learning new things.
That’s really not the way therapy is designed. It’s actually supposed to be something that a therapist works on, plant a seed in the child’s head, and then the parent should be asking questions and using those techniques at home and in real life settings to help the child develop outside of the therapy setting.
The therapy is the seed, the parents are the water and sunlight. If you take care and nurture them, you will see progress. Don’t forget, that no matter how little, any progress is still progress. As long as they are not regressing then you are headed in the right direction.

I've Been Really Trying Lately

I've Been Really Trying Lately
By Kodey Toney
This is part two from my visit to the Tulsa Autism Conference a couple weeks ago.
I think most everyone has been to church on Sunday morning when you feel like the preacher has chosen his sermon just for you. You get a little uncomfortable and start squirming in your seat just because you feel the pastor is talking directly to you. This is exactly how I feel each time I hear Dr. Jed Baker Speak.
Baker is a behavior specialist that works with all age groups, but particularly he has many books and programs for transitioning-aged students with disabilities.
I was fortunate to have an opportunity to speak with him in between sessions and he was very helpful and approachable. We talked about a new program that we are working on with the Pervasive Parenting Center that we want to begin in the summer to help with transition and social skills.
However, when he started speaking in the conference it was back to church for me. He started pointing out everything that I’m doing wrong as a father. Let me stop and explain something that I have said several times, I am not the perfect father. In fact, I am far from it.
I talk to parents everyday about ways to work with their children to help with behaviors, and ways to be better parents. However, when it comes to everyday parenting with my sons I sometimes forget those things. I guess that’s why I always say I’m not an expert. I get caught up in the moment and forget all of my training that I’ve been through. I yell, and I make situations worse which breaks the first rule that Dr. Baker brought up.
He stated, “If I can be chill I can help you be chill.” This is great advice and makes so much sense, and in the middle of my rants with the kids I often think this to myself and then I get upset with myself. I know better.
If we can keep our composure when our children are already overstimulated and on the verge of a meltdown then we can help them to stay calm. Your child can feel your frustration and feelings, even though we think they don’t fully understand emotions, they know when you are upset.
Which brings us to his next point. He said we don’t want to put out fires after they have been spread. We want to help prevent fires. I am always telling parents, educators, and professionals that the main focus for meltdowns or behavior is to stop it before it starts. I know that is easier said than done, but for the most part we are just looking for stemming behaviors or signs and then trying to find the reason behind the behavior.
If we can see that a child is starting to pace then we know there is a reason. If we can find the reason then we can start to deescalate the situation.
The refreshing part of his session was when he talked about going to the grocery store and his children act up, he’s dragging them down the aisle, and they are being loud and people think, “Aren’t you the behavior specialist?” It makes me feel good that I’m not the only one that is supposed to know better and still has problems.
Just remember, if you do your best, and you understand that you may have made things worse, then you can at least understand and try to change things the next time. I really do try to make things better the next time.

Caught Up In You

Pervasive Parenting
By Kodey Toney
Caught Up In You
This weekend I had the opportunity to travel to Tulsa with Jen and Terry Yarbery to listen to some of the best advocates in the business. While I've seen both that I will talk about here before, I always learn something new each time I see Dr. Temple Grandin and Dr. Jed Baker speak. Most would probably know who Grandin is (if you don't look her up, she is very inspirational), but Dr. Baker might be a little lesser known.
This may be a two or three-parter as I try to share most of what I found interesting.
I want to share a little information from them that I feel is important. Some of it maybe something I've said before, but sometimes just having a refresher course is nice.
Dr. Grandin expressed several times, "Don't get hung up on a diagnosis." This is great advice that I try to tell parents all the time. Autism is different than many other disorders in that it presents itself differently in each person.
"Treat the symptoms," said Grandin, "don't treat the label."
This too is great advice. I always talk about building up a tolerance of the symptoms. If you have a child that has sensory processing disorder then you are going to work on ways to help them cope with flickering lights, loud noises, and strange touches. Of course even that is different in each child.
Temple said, "You have to stretch them. Don't throw them in the deep end."
This means, ease into things. Don't just push them into a large noisy crowd and say good luck. You are just asking for a meltdown.
My example is always what we have done with Konner in the cafeteria. We started by letting him stay until we can see him begin to stem or get irritated. Then the next day we pushed him to stay a little longer. Just keep adding time and building the tolerance.
She explained that you should always give instructions instead of saying no. This works for all kids by the way. If you are going to say no or stop then they may not understand why you said that, or what they are supposed to do. An example would be, instead of telling a child to stop when they are kicking the desk in front of them, tell them to keep their feet on the ground. This may sound too simple, but it helps them understand what to do. Sometimes just saying “stop” makes things more complicated. They will have to stop and think about what he is doing and which part he needs to stop.
I'll stop here for this column, but be back with more in the next about Dr. Baker, and some other interesting programs.

The Advocate

Pervasive Parenting
By Kodey Toney
The Advocate
Last Monday was Autism Day at the Capitol in Oklahoma City. I had planned to attend myself, along with Terry Yarbery that works with me, but something in me thought to ask Konner if he wanted to go. I felt like this would be a great opportunity for him to start thinking about self-advocacy, and it was a great chance for the legislators to meet him and put a face with a name. I am constantly talking about him, but to be able to actually talk to him and see him is really eye-opening sometimes. They get to see what a great kid he is first-hand.
So I asked Konner if he would like to go, giving him the choice of opting out if he wanted, and to my surprise he said yes. He wanted to actually spend the day with Dad and drive to OKC.
Then I asked if he wanted to wear an autism t-shirt, or a shirt and tie. Again, to my surprise, he said he wanted a shirt and tie. So, Jen went out and bought him a blue shirt and tie. This of course meant that Dad had to wear one too though, but I found the closest matching one I had and we dressed nicely to meet the legislators.
I then emailed the local representatives and senators and ask for a meeting and possible photo opportunity. Though I didn’t hear from all, I had a majority of them respond back.
On the way up I was prepping him in the car. I was asking him what he was going to say, what he wanted them to know about him and autism, and explaining that he had to be on his best behavior and no yelling. He’s in an angry stage lately and I just knew the first thing he would do is scream at one of them. What we finally settled on was that he would say, “Hi, I’m Konner,” when we met someone, and shake their hand. I would just see how the rest goes as we went along.
For the most part everything went extremely well. Konner did great, and other than a minor setback in Rep. Rick West’s office he was pretty amazing.
Rep. West was the first member we visited, and he was very gracious to us. He welcomed us in, Konner introduced himself, and as they started to talk about Thomas the Train, which I thought would be perfect, Konner became agitated. This is because he was going to say something, and forgot. This frustrates him all the time at home. Terry began calming Konner and took him into the hallway for a walk. I used this as an opportunity to explain behavior therapies and early intervention strategies to Rep. West. As the photographer arrived Konner threw himself in the floor, and we had to get him calmed again. Just as the picture was being snapped Konner said that he remembered what he was going to say, and everything was peaceful from that point on.
Next up was Rep. Ed Cannaday. Rep. Cannaday and I have known each other for a few years now, and this one went extremely well. Mr. Cannaday even took Konner to the House Floor and let him sit in his chair while we took pictures.
Rep. John Bennett welcomed us as well. We had a great visit about healthcare and autism matters, and as we left he even gave Konner a bible.
Sen. Mark Allen was the final stop on our day. While we had to wait, I appreciate that he took the time and even left a committee meeting to have his picture taken with us. He was very nice to us.
I just want to say thanks again to all the members that we were able to talk to that day. Thank you for taking time out of your busy schedule and being so hospitable to myself, and most importantly Konner.
It made for a good day for me, and Konner had such a great time that he will remember for a long time.


Pervasive Parenting
By Kodey Toney
As I write this on World Autism Day I am reminded of many things that I've learned, said, and thought over the nine years since Konner's diagnosis. I'm going to share some of them this week. For some this will be like a flashback episode of your favorite sitcom. For others hopefully it will just help you better understand autism.
I feel that on this Autism Awareness Day I should share something that I say often when I'm talking to groups or at trainings. It's nothing that I really came up with on my own. I always tell people I just regurgitate the things that I've learned from my mentors, but I feel it's important and my philosophy if you will.
The Center for Disease Control says that 1 in 68 children in America are diagnosed with autism. That's up from 1 in 88 a couple years ago, 1 in 110 when Konner was diagnosed in 2007, and 1 in 1000 in 1980. That is a 72% increase since 2007, and more than 200% since 1980. More than 1.5 million Americans are affected. According to Autism Speaks, that is more than are affected by diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome – combined. These numbers are staggering, but it means that we are very aware of autism. I would bet that everyone reading this knows someone with autism.
It's no longer about awareness; IT'S ABOUT ACCEPTANCE! We have to accept children, adults, and everyone with autism for who they are. We have to love them for their quirks. That's what makes them who they are. We have to help them be who they are, and stop trying to change them into who they are not.
That is something that I share at trainings and speaking engagements because I think it best describes why I do what I do, and my philosophy on advocacy.
I have heard this gem since day one, and I'm reminded each day, as I meet new kids and adults with autism, just how true it is. The famous, "Once you've met one person with autism you've met one person with autism." While they have similar characteristics they are all different, and they are all awesome in their own ways.
"Autism is not the end of the world, just the beginning of a new one." Man, this couldn't be more true for me. Nine years ago I would have never seen myself in the role I'm in now. I was working on being a rock star on the road, but as they say, if you want to hear God laugh tell him your plans. God has shifted my life in a whole other direction, and I can't be happier than doing what I'm doing now. I owe it all to God, Konner, and my wife.
And finally, "Autism is not a tragedy, ignorance is." I feel personally it has gotten better over the years. I don't know if that is because I have learned enough to combat the ignorance in the world, or that people are becoming more aware and accepting, but I do know that it seems more people are on board with the differences in our children. There is still a lot of work to do, but that's pretty cool.

Take The Highway

Pervasive Parenting
By Kodey Toney
Take The Highway
I usually try to keep up with what’s going on in the world of autism, and one of the best out there to follow on social media is Ellen Notbohm. She is an author of some great books, and a champion for all with autism. This morning I saw a post that she made that made me stop to think a little, and so I wanted to try and hit on my opinion a little.
Her post was as follows: “Can we please be done with "high-functioning" as a way of describing a child with (autism)? Every (autistic) kid I ever knew was functioning at the highest s/he was capable of at that point in development, and every one of them was capable of more ("higher") given appropriate supports, encouragement and opportunities. Meaningless comparatives help no one, not the child nor anyone trying to formulate how best to help the child. As I am quite fond of pointing out, watch how low-functioning I am in that boring, boring meeting after a large lunch.”
Great points in there. While I agree completely I will counter a little.
I always tell parents that I hate labels, but they are necessary when they are necessary. What that means is, we don’t need to point out disabilities unless we have to in order to get services. That is the only time it is required to point it out. Think of it this way; why don’t we say that someone is near-sighted. We know they have a vision impairment because they have glasses. We don’t need to tell someone that a person is in a wheelchair. That is obvious.
So, we shouldn’t have to point out autism, although I will say that it is not visually as obvious as other disabilities. However, stick around long enough, and know what you are looking for, and you will see the apparent signs.
With that, then Notbohm is correct. We don’t need to say high-functioning or low functioning. They are functioning the best they can. It is our job to make sure that they are operating at full capacity, and then increasing that to push them further in life.
If for some reason you have to let someone know; let’s say you are on the phone and they ask where your child is on the spectrum, they can’t see them to tell the signs, and they are trying to evaluate for some strange reason, then you can tell them what level they may be functioning at on the spectrum.
Remember, this is a spectrum, so there are many levels. Every child is different after all. You should probably just let them know what they can do, and what they are NOT YET CAPABLE OF and leave it at that. Yes, I put that in all caps because I want people to understand that the only limitations on a child are the ones we set for them, or they set for themselves. Otherwise they can do anything they want to with the proper tools and encouragement.

The Dreamers of Dreams

Pervasive Parenting
By Kodey Toney
The Dreamers of Dreams
I had the privilege to attend a local performance of the musical Willie Wonka. The group of children and young adults were great, and while the lead performers were awesome, two of the budding thespians stood out to me. Now perhaps it's because I'm a little biased and I know their stories, but I wanted to point out how great Mrs. Gloop and Mr. Salt were.
The fact that anyone, especially a child, would get up in front of a crowd and perform, let alone sing is in itself a great feat. However, when you realize that these two are on the autism spectrum it makes things even more remarkable.
Just a few short years ago either one would have had a hard time holding a conversation with a stranger. I know because I've been fortunate to have observed them both from afar.
Res is the son of a good friend and board member of the Pervasive Parenting Center, Regina Smith. I had him in Cub Scouts, and he would talk, but that was very limited. However, on stage Sunday afternoon he not only spoke, he sang and made the acting motions; not just standing there reciting lines.
The same could be said for his co-star if you will, Alea Gonzalez. Alea has come so far, and is a wonderful self-advocate. So much so that she was recently appointed to our board of directors alongside her mom Amber.
For me, Alea stole the show. The German accent both in speaking and singing was a hit, and her comedic timing was great.
I have read before about how there are theater programs working with children on the spectrum. They can help with social skills and interaction. I have now seen this in motion and think it's a great idea.
I want to say thank you to the directors and anyone behind the scenes that helped make this possible for all the children, but especially for helping these two shine on stage.
Oh, and a special hats-off to the parents. Well done!