Sunday, August 7, 2016

Give It All You've Got

Pervasive Parenting 
By Kodey Toney

Give It All You've Got

I can't say thank you enough for everyone that helped to make the Art For Autism event a huge success, so I won't. Not that I'm not appreciative of everyone. That goes without saying. It was great, and it was because of so many people; artists, buyers, board members, etc. I just don't want to leave anyone out, so I'll just say thanks to everyone for helping us raise more than $1800, and leave it at that. 
You see, I want to point out that even though there are always fund raisers, and there is always someone looking for more money, I can tell you from a director's standpoint that the feeling we get as a non-profit when people spend their hard-earned money for a cause you feel so passionate about is overwhelming. 
There are so many things out there to give money to, and many are great causes, so when you decide to provide more help for families in the area that are living with disabilities it really means a lot to me. That is why I don't take it lightly. The board of directors and I work hard to make sure that the money stretches as much as possible, and that it actually goes to help people. 
If you are wondering what we use the money for I encourage you to visit our website (www.pervasiveparentingcenter.org) or our Facebook page and watch the "Year In Review" video. 
You see I don't really want to say thank you because thank you is not enough. 
I encourage you to donate. If not to the Pervasive Parenting Center then to something that you believe in. Find a good local cause and give. It is truly appreciated.

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."

Kick A Hole In The Sky

Pervasive Parenting 
By Kodey Toney 

Kick A Hole In The Sky

Konner has been grounded this weekend. He decided to throw a little fit (not a meltdown) and kicked the door going into our laundry room. The end result was a small hole at the bottom of the door. Jen grounded him for a few days from his electronics which include his iPad and laptop. 
Some of you already know what a huge ordeal this is for Konner. This consumes much of his time; perhaps too much. Nevertheless this has caused him much agony and pain this weekend. He hasn't been able to play on Roblox and talk to his "friends" on there. This has caused him the most problems. 
He has a game called My Boo where he has to take care of an alien-type creature. He has to feed it, bathe it, and play with it or it will get sick. It's really good to help teach responsibility on a small scale. He has been really concerned that his boo is going to be sick if he doesn't get his iPad back soon. 
Of course there is also Minecraft and that annoying Talking Tom cat. 
The good part if this is that he has come to talk to us more. He's had more time since he hasn't had his head stuck in the electronics. While most of our conversation consist of him telling us how much he wants or needs his devices back, or which thomas train he wants the next time we go to the store, we have had some conversations about how to act better and his philosophy on life. 
He's also asked several times if there is anything he can do to get it back, and has even attempted to clean his room several times. Those tries have all fallen short since he gets bored quickly and decides "It's too hard" (please read that in the most whiny voice you can muster).
Another benefit has been that he has crawled into bed with us several times. He stands on the end of the bed, walks all the way to the head until his feet at nearly stepping on our heads, and the wedges his way in between us. This is a little annoying at times, but it's also kind of nice since he doesn't do this often. He's not much of one to cuddle, so this is a little different. 
In all this punishment has had its ups and downs, but in the long run it has been a pretty good experience for us all. He has even played trains and cars with Kruz some.

When I Pain My Masterpiece

Pervasive Parenting
By Kodey Toney

When I Paint My Masterpiece

This week's column is going to be a little different as I want to tell you about an upcoming event that can help families in this area.
Running a non-profit like the Pervasive Parenting Center can be very rewarding. Helping with trainings, conferences, and advocacy can also be expensive.
This is why the center will be holding an art auction on Saturday July 30 at the Donald W Reynolds Center in Poteau.
This came about as a way to raise funds for the many things we try to do to help families in the area. As a quick recap, I'll mention a few things we've done in the past couple years. We have donated money to local special education departments to help with supplies. We hold Sensitive Santa for children with sensory issues each December in LeFlore, Sequoyah, and Haskell counties. We have helped give out s holarships and have awarded Teacher if the year as well as Paraprofessional of the Year awards. In addition we provide free trainings to local educators, professionals, and family members. We also have Sibshops for siblings of children with disabilities and parent support groups.
With all of these events we are always searching for funding, so when my wife suggested an art auction a few months ago we jumped at the idea.
There are so many great local artists that have provided quality pieces of art for this event. There is a little something for everyone at different price ranges. We have works of all sizes and all tastes. There are some folk pieces, abstracts, impressionistic works, and even pop art. There are mostly paintings, but also photograph prints.
We have local musical act Haulin' Oates to provide entertainment for the auction.
While we're calling this Art for Autism the funds will be used to help local families with all disabilities.
The event will begin at 6 p.m.
Please make plans to attend.

Let's Get It Started

Pervasive Parenting 
By Kodey Toney 

Let's Get It Started

This week I want to revisit parallel play. This is something that is very prominent in children on the Autism Spectrum. 
This may be a good time to mention something that most parents already know, but there is a chance there is someone reading that doesn't understand. Those on the spectrum usually lack social and language skills. Those are the signs that a doctor looks for when evaluating someone for autism. 
It only stands to reason that when a child with ASD tries to interact there is a some confusion. They're never quite sure what to do, unless they are taught, so they will mock, or mimic the children around them. While they do many of the things that their peers do they never actually engage with them and interact. 
I first learned about this when Konner was in head start. Konner would go up to someone in the block station, watch them, mock their actions, but never talk to them. 
Though Konner has learned to interact better, I noticed Sunday that he still has some of those characteristics. We were at his cousin's birthday party and all of the other kids were throwing water balloons. Konner stayed beside me and paced a little, but I could tell he wanted to play with the other kids. I told him to go grab a balloon. He went to the basket and watched for a few seconds. Then he elbowed his way in and grabbed a balloon. He watched a few kids and then threw one and hit a little boy in the face. While this was a little rough I knew he was just trying to do what the others were doing. 
While he does interact way better than he did seven or eight years ago he still has some issues. We're working on it though.

Look Around

Pervasive Parenting 

By Kodey Toney 

 

Look Around

 

I talked a couple weeks ago about Konner’s pacing and how it was a form of stimming for him. I want to explore that a little bit more this week.

Have you ever noticed how sometimes dogs will work their way around a new house or new room smelling everything? They have to make sure that they know all about the new room and the people. They explore every corner, every inch, and every smell of that room. They want to make sure they're safe and there's nothing there to harm them. Now I'm not saying children on the autism spectrum are dogs, but I notice when Konner gets into a new space he paces constantly. This pacing is actually him exploring every inch of that new place. It happened in the condo in Florida, it happen every year in the new classroom, it happens in new stores or places we visit, and it happens on playgrounds.

I recently assisted the Youth Leadership Forum in Chickasha presented by the Oklahoma Developmental Disabilities Council. This is a summer camp for young adults preparing for post-secondary education. Students with disabilities from all over the state were there to become better prepared for the transition into college, technical school, and life. While there I noticed many of the kids that I suspect had autism doing the same thing in the room that Konner does. Some of them would get up and walk around, pace little bit, and move throughout the room. I suspected this could've been because I was a stranger, and maybe I made them a little uncomfortable. It could have been that they were with a lot of different people that they really didn't know well. However, I noticed too that they were exploring the entire space. The room we were presenting in was attached to a separate game room, and they would wander into the other room and come back. Of course they could just like silence of the adjoining room since the one we were in tended to get a little noisy at times. Either way they were pacing as a way to stim. They are just trying to get comfortable with their environment.

We sometimes have the instinct to make them stop. The pacing and exploring can be a little uncomfortable for others in the room. Kids can intrude on others’ space very easily. They can get into your bubble fast.

After a while this typically dies down as the child becomes more familiar with the surroundings and is comfortable with the situation.

I always enjoy when I assist with other kids with autism. I get to see how “normal” my child is compared to others on the spectrum. I also like when parents came to me and tell me that Konner sounds just like their kids. It helps me understand that I'm not alone.

Jump, Jive an' Wail

Pervasive Parenting 
By Kodey Toney 

Jump, Jive, an' Wail

We went to my in-laws' house the other day to take the boys swimming. They had just gotten a trampoline, and the boys were ready to play on it. We had a trampoline ourselves a couple years ago, but a storm decided to twist it up and throw it across the road. I had forgotten how much he liked jumping on it. 
So while the rest of the family was in the pool Konner was bouncing around. Then he would stop for a few minutes and lay on it before popping back up and jumping some more. 
So why the infatuation? It probably stems from an issue common in children on the autism spectrum. Many kids have a hyposensitive vestibular system. 
The vestibular system is in charge of coordinating movement and balance based on the position of our heads in space. This is something that can cause vertigo in people, and when it is hyposensitive then kids will lose a sense of where their hands and feet are in to relation to the rest of their body. 
According to the website Snugvest.com: "A hyposensitive Vestibular person require(s) more movement sensory input than what is neurotypically average in order to feel comfortable.  Also, they may constantly feel the need to spin or twirl around, run around in circles, jump up and down, and may have no fear of heights at all.  An individual with a hyposensitive or hypo-reactive Vestibular System is under-stimulated and is constantly searching for certain movements to fill that absence.  As a result, on the outside they may seem hyperactive, fidgety or simply overflowing with energy at all times."
When Konner is at recess at school he will spend much of his time on the swing set. He loves the feeling of pushing back and forth over and over again. This is probably because he can actually feel his extremities better. 
This is why many occupational therapists will have swings or toys that spin children. 
Snugvest also listed activities that I thought I would add. These include: bouncing (eyes are trained to refocus with the head, jumping, running, and hopscotch. 
These are also things that the paraprofessional at school has used to help calm Konner when he is becoming overstimulated.

Poker Face

Pervasive Parenting 
By Kodey Toney

Poker Face

As many who read in the last column will know we spent last week in Florida on vacation. You would think that the "Happiest Place on Earth" (Disney World) would leave the boys with smiles on their faces, and while they did have a great time most people couldn't tell from the pictures that we had posted on Facebook. 
The funny thing is that every picture posted had someone comment about Konner not having fun. His expressions, much like his inability to read emotions well, are tough to figure out. Every school picture we have shows him with an expression that kind of looks like he's scared. I think they look good, but I've had people say that it is unnatural. 
So, as we were snapping pics with Mickey Mouse, Goofy, the Minions (Konner's favorite), and many others the photographer would prompt the boys to say cheese. Konner would contort his face and come up with this happy-yet-surprised look. 
I could tell he was very excited about the trip, and enjoyed many rides. I would ask him his favorite things and he would tell me, and he has been talking about it since we've been home. 
The moral of this story, or column if you will, is that children on the spectrum are hard to read. They have a hard time with emotions, but some think it is just reading them. We have worked with Konner on reading emotions since he was diagnosed. We try to help him read other's expressions. 
One thing people forget about is trying to help them express their own emotions. We make Konner look at himself in the mirror when he gets upset or frustrated. We have also taken pictures of him when he was happy, sad, excited, etc. we used those to help him understand emotions as well. 
They say you shouldn't judge a book by its cover. This is true I guess for pictures of Konner too.

Road Trippin'

Pervasive Parenting 
By Kodey Toney

Road Trippin'

When raising a child on the autism spectrum, sometimes the most irritating things are the most rewarding when you look a little closer. 
I have talked in the past (check out past articles at http://pervasiveparenting.blogspot.com/search?q=Vacation&m=1) about how being a "normal" child at times can be one of the happiest moments for a parent. When your child lies, which can be rare, it's actually kind of nice because they are so literal or factual to a fault. Of course with Konner he will immediately tell me that he lied, but it was the attempt that counts.
I began revisiting this idea as we were in the car driving to Florida this weekend. We were on our long trek when Konner and Kruz began getting on each other's nerves. This is not unusual at all. In fact it happens all the time at home. 
Even though it annoyed me to no end in the confines of a mid-sized SUV after several hundred miles, after thinking it out I had to appreciate that they were just being "typical" siblings. 
My mind began to drift back to the mid 1980s and trips from Kansas City, Mo. to Shady Point, Ok. And back. My sister and I used to hang out in the back seat of whatever vehicle we might be riding in, and I would do anything I could to get a reaction out of her. After all this is what little brothers do. The slight difference between Konner and my sister is that he is a powder keg about to explode into a meltdown at any second. Sure, she might hit me when I pushed her to the breaking point, but she wouldn't turn into a glassy-eyed monster with uncontrollable violence and screaming induced by overstimulation. 
As strange as it seems to many parents, and as annoying as it is at the time, it's kind of nice to have these little typical moments in life. 
Also, it's nice that we can just take a vacation. There were times when he was younger we didn't know if it was such a good idea, but we have built up his tolerance enough that we can take him pretty much anywhere we want to go.

Walking The Floor Over You

Pervasive Parenting 
By Kodey Toney

Walking The Floor Over You

Konner is a pacer. He tends to pace quite a bit, and I used to think it was just when he was getting overstimulated. However, recently I have noticed that he also does it when he is bored, thinking, and in a deep conversation. 
I began to think about this recently when I was lying down watching a Kansas City Royals game. I was deep into the game, and it was beginning to get exciting when Konner decided he needed to tell me something. 
Now, I don't turn him away usually when he decides to talk to me. I'm just happy that he is talking. As I've said in the past, we were told he might not talk, so anything he wants to say I try to let him. 
The problem is that he, like many on the spectrum, talk only about what they want to, and tend to dominate the conversation. That wasn't the worst problem though. The problem was that he was pacing while he talked. So, as I'm trying to enjoy the game I have a head flashing through the screen. Left to right, then right to left, and back again. I didn't know what to do. I tried to tell him to stop pacing, but that's like telling a smoker to stop smoking. It's probably not going to happen, and would cause some physical and mental side affects. 
Lucky for me it was later in the night, and Jennifer was quick enough to ask him if he wanted to take a bath. It worked, he moved on, the Royals won, and we were all happy. 
This is not unusual though. As I said, many on the spectrum pace. It is usually a sign we use to determine if someone is on the spectrum. Then it becomes a sign of overstimulation. When I see Konner do this I usually start looking for ways to calm him. Over the years though I've learned to recognize the difference between the two. The key is the level of frustration in his face when it's going on. 
These are just some observations I hope will help.

Think About It

Pervasive Parenting 
By Kodey Toney

Think About It

Konner has a very strange way of thinking about things. It's a very practical way of thinking, at least for his interests.
I have discussed in the past his love for computer programs. One of his favorites is Roblox, which allows him to build trains and other aspects of the island of Sodor from Thomas the Train. On this game there is an administrator that makes sure everyone stays in line and does what they are supposed to. They also develop the game and build different worlds to play on. 
So, when Konner came to me a couple weeks ago and said, "So, God is like the admin of the world," I had to stop and think about it. 
"Yes, I suppose that's right," I said back. 
In his mind he had associated Gods watchful eye and development of the world with the administrator of Roblox.
This may seem so simple to some, but it caught me off guard. I appreciate that he listens to us when we talk about God, and that he can relate that to his interests. 
So tonight we are sitting in the living room and Konner said, "Are the dead people in heaven co-admins to God?"
This question stems from the fact that there are co-admins, or other people that assist with keeping things in order on the game. 
I thought this was a very good way of thinking about it. 
He uses association when thinking that most people probably don't. This comes from the fact that he, like most on the spectrum, are concrete thinkers. Everything has to be relatable to their interests. This is why they dominate conversations and must talk about their interests with little regard to others' interests. 
Teachers sometimes use this to their advantage in the classroom by using their interest in the lesson. An example would be using trains in a lesson on subtraction to keep the interest of a child in the class that has autism. 
As a parent you can use this same approach to talk to your child about something important. As long as you relate it to something they like.

Had a Bad Day Again

Pervasive Parenting 
By Kodey Toney

Had A Bad Day Again

I talked a couple weeks ago about how Konner was doing well with meltdowns, and I think I jinxed it. We have had a couple lately, and though they haven't necessarily been full-blown versions, they have been concerning. 
Yesterday (Saturday), he was so overstimulated that I could tell he was about to boil over. I arrived home from being gone to training in Oklahoma City for two days, and everything seemed pretty calm, but quickly the tide changed. 
Konner came into the room with tears in his eyes and beg and screaming about a Troublesome Truck. For those of you unfamiliar with the world of Sodor, this is a toy from Thomas the Train. He had been playing with it earlier in the day and lost it. 
He started screaming one of his famous lines, "I can't find the Troublesome Truck! It's not anywhere, and wherever I find it I'm going to break it!"
He says this anytime he can't find something, but oddly enough he never wants to actually break it when he finds whatever he is looking for. 
The desperation of his current emergency caused me to get up and begin searching his room. You see, he and his brother are what some people call man-lookers. Now I don't like this term because I am a man and tend to search thoroughly because if I don't we have a meltdown. 
I searched all through the room and was having a hard time finding it. To make things more difficult Konner was in my ear screaming the entire time. I'm somewhat ashamed to say that it caused me to begin to lose my temper because I could concentrate with the screaming, but then this happens often. As I've said in the past, I'm not the perfect dad, but I try to be. 
After about ten minutes I said, "Konner forget about it. It's not that big of a deal, and we will find it."
He just kept repeating that it wasn't anywhere and he would break it. 
I finally found the train car wrapped in the five huge blankets he has on his bed, and thought the problem was solved...wrong!
He started crying and screaming, "I wanted to forget about it! I wanted to forget about it!" 
This caused me to get more frustrated, and then we both had a meltdown, well he had a meltdown and I threw a fit. 
We calmed him from that, but I could tell he was still a bit of a powder keg about to go off at any second. 
He was playing quietly about an hour later when he came into the room again crying uncontrollably and started talking about when he was in the first grade and Mrs. Diamond answered a question that he wanted to answer and it upset him again. Keep in mind this happened four years ago, and something about this episode still comes bubbling up today. In fact this story upsets him often. 
He then went into a rage about throwing his lunch box earlier this year and he was upset even more. 
He was crying uncontrollably, spitting, and really having a pretty good little meltdown. We finally calmed him by applying pressure, but it made for a long frustrating afternoon. 
There is no way of stopping or detecting some meltdowns, and they happen so quickly you just have to try to stay calm, which I did not, and not make the situation worse. Then talk out what caused them afterwards so you may head them off in the future.