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.

Friday, May 6, 2016

Who Did You Think I Was

Pervasive Parenting 
By Kodey Toney 

Who Did You Think I Was

Konner, like many on the spectrum, loves his electronics. He plays Roblox on his laptop or the desk computer, he plays Minecraft on the computer or iPad, and he watches and makes videos on the iPad. This is not unusual I know. Most parents I have talked to tell me that their kids are a wiz on the electronics. 
I've even talked in the past about how he will get around the parental guides must of the time because he's so smart. I've also talked about how Temple Grandin always says to get them off of the electronics and doing things with their hands, which is easier said than done, but we do try. 
However, Konner has started something new lately, and I have to be honest with you it drives me nuts. He is very impatient, as I'm sure I have mentioned before, especially when it comes to the electronics. His brain works faster than the processor sometimes I guess, or at least that's what I tell myself. When things don't go fast enough he gets upset, and has been known to break iPad screens, enumerable computer mice, computer screens, and a couple keyboards. 
Now we have rules that when he gets frustrated he has to take breaks, and if he actually hits an electronic then he is grounded for the rest of the day from all electronics. 
So, Konner has learned this and tries to keep his anger hidden. He gets angry and mumbles under his breath, but it is not well hidden. If I'm in the next room I can hear him and will call his name. When he hears this he has started asking, "How did you know? How did you hear me?" 
This drives me crazy. I have explained to him that I have ears and can hear things. He's just trying to manipulate me, but he acts as if it is amazing that I would hear him basically yell at his computer under his breath. 
He's gone so far as to lightly hit the computer, and when I actually see him do it he asks me how I knew. 
The funny part about this is that he doesn't lie about it. He will tell you if you ask, but rarely does he lie anyway.
I'm happy that he is at least trying to calm himself...well at least most of the time he does. 
Hopefully this is just another phase that he is going through, and he will be over it soon.

One Day At a Time

Pervasive Parenting 
By Kodey Toney 

One Day At A Time

I was looking through my "On This Day" feed on Facebook and noticed a post from 2010 that made me think a little. I had posted what can be deemed now a desperation call for sympathy by most, but what I felt at the time was meant to educate the masses. The post said simply, "Meltdowns suck!!!"
This is still a true statement, but when I posted it six years ago I wanted everyone to know it, and then understand they are not the only ones going through tough situations. 
Konner had obviously just gone through a really bad meltdown, but by that I mean his eyes had glazed over, he was staring through people, screaming uncontrollably, probably hitting himself and possibly others. 
He was tired and having a long day, which means we probably had several events to attend, and he was way overstimulated. 
I had tried my famous "Konner Sandwich", a move where I lay him down, put a blanket or pillow on top of him, and then apply pressure by laying on top of him with as much weight as he can handle. It usually works pretty well, but this time it did nothing. I remember trying the burrito method as well, where you wrap him up in a blanket real tight. 
I bring all of this up because I found it interesting. The fact is, we've had some meltdowns recently, but I would say they are extremely mild. I can't remember the last time we had what I would classify as a major meltdown in well over a year. 
As I've said before this is one of the most helpless feelings you will ever know when your child is in so much physical and mental pain, and there is nothing you can do about it. 
So why has Konner been relatively meltdown free? I can't say for sure, but I feel it's because we have exposed him to things that cause his overstimulation. This may seem cruel, but what you have to do, in a sense, is build up a tolerance. You have to teach them how to build up an immunity, if you will, to those loud rooms, bright lights, strange smells, and scratchy touches. I'm not saying to torture your children. Start slow and keep pushing them until you see the frustration, back off for a while, and then do it again. It's not easy to do. You will experience crazy meltdowns along the way. But, when you can take your child out in public with only small outbursts or none then it will be worth it.

Peaceful and Serene

Pervasive Parenting 
By Kodey Toney

Peaceful and Serene

Well, it's that time of year again. April, as many of you know, is autism awareness month, and April 2 was National Autism Awareness Day. The old saying I share every year of course is that everyday is autism awareness day in our house.
With that I would like to share something with everyone. If you have ever heard me speak in public then you have most likely heard this, but I feel it is worth repeating and will continue to say it until becomes true. 
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. 
This sounds very much like one of my favorite prayers, the Prayer of Serenity: God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference. 
The good news is that the numbers have not changed. CDC recently released a study that said things are still at 1 in 68. 
The Pervasive Parenting Center is holding an Autism Walk on Saturday April 16 at Jay Reynolds Park in Sallisaw from 10 a.m. until 12 p.m. We will have free food provided by Armstrong Bank, inflatable toys and games for the kids provided by Sequoyah County Times, Oklahoma Family Network, and Discovery Therapy. 
We want to invite everyone to come out, take a lap or two around the park, celebrate those with autism, have a good time and visit with us.

Pride, In The Name Of Love

Pervasive Parenting
By Kodey Toney

Pride, In The Name Of Love

Let me tell you the story of the little engine that could. This isn't the classic story by Watty Piper that tells of the small engine who uses positive thinking to make his way up a large hill...but then maybe if kind of is. This is the story of a child with autism, that would rather sit around playing video games and computer programs than playing sports, but found himself so overcome with excitement that he far outran his competition during a track and field event.
Now, I'm a huge proponent of the fact that winning isn't everything, especially when it comes to Special Olympics, but I've got to be honest it's great seeing Konner run hard and get excited about winning. I'm just so proud of his effort.
He's not athletic, at least he's not into athletics. He played soccer, and enjoyed it, but had more fun standing on the sidelines helping coach.
Jen started a couple weeks ago with him and started having him run from point A to point B. He did fine, but I'm not sure he was trying his best. He just wanted to run a few times and go inside to get back on to the computer. They also worked on the softball throw, and while he did ok with this he again wasn't really into it.
I tried talking to him a couple days before. I explained things in a language I thought he would understand. I told him he needed to act like he was Spencer from Thomas the Train and go faster than all the other trains. He had to stay on his track (in his lane) and keep going until he made it to the station (the finish line).
So when the actual competition came around Konner showed up amped up and ready to go. He was jumping around when he got there and told me that he was going to race the wind and his shadow. He couldn't sit still and decided to warm up. He took off down the track and kept running until the kickoff. I thought he would be tired by the time he had to race, but he was fine.
His name was called, and he gf to the line, turned the wrong direction, and had to be redirected. When the whistle blew to start the race Konner got a bit of a late start because he was covering his ears, but that was only a split-second and then he was off. He moved quickly down the track, but slowed as he was passing the other runners because he kept looking back at them. Then something kicked in and he sped to the finish line and won first place. He then placed second in the softball throw.
He had a fun day, and did his best, and it was a great experience for him and me.
Even if he hadn't won I would have been proud of him, but because he ran as fast as he could and did his best it made me very proud.

Always Late

Pervasive Parenting
By Kodey Toney
 
Always Late
 
March 5th is the annual day of awareness to help “Spread the Word to End the Word”. The “r” word that is. Ok, I hate saying it, but for some of you who are wondering I’m talking about the word retarded, or retard. That being said, as I seem to always be late to the party, mostly because I’m a procrastinator, the Pervasive Parenting Center will host its own Ban the "R" Word day for our area on Thursday, March 24.
This time we have a legitimate reason to be late though, we have been working with local schools, community leaders, clubs, and organizations to create four videos showing support against the use of the “R” word. We ask that people go onto social media cites and share the videos with everyone you can, wear your "R" word shirts if you have them, and if you don't have one just wear red to show your support. Most importantly refrain from using the word and please encourage others to use a different word as well.
I’d like to include an excerpt from a past column to help explain my stance on the use of the word:
These are words just like slurs of yore that were used in a derogatory way to describe African Americans, Mexican Americans, Italian Americans, and other groups throughout history.
The sound of it sends rage, sadness, and tears through the individuals with disabilities that talk about it on several videos I researched for this project. Nobody should be made to feel this way, especially not with words that first of all are used with the wrong meaning, and second are unnecessary in any way.
Working at a college it’s not uncommon for me to hear someone say, “That’s retarded” as I walk across campus. It’s become a familiar phrase in American speech. Calling someone else retarded is commonplace with most of our younger generations. People spit it out without thinking about the negative connotations associated with it. It has even been used in the past to clinically describe people with mental illness.
However, no matter how it’s used it should be found to be offensive.
The sad part is when the adults are the ones actually using the word and don’t even realize they are hurting anyone’s feelings. In fact, there are times when it is used because it has been accepted for so long to actually describe a disability.
I often hear people talk about the world being too politically correct. That’s not the problem though. As I always tend to tell people, I call it humanely correct. What we are trying to do in this society, or should be as parents, is fight for equal rights. It is a civil-rights issue. With the rapidly increasing diagnosis of children with autism the issue of rights is going to grow.
You can view the videos on the Pervasive Parenting Center Facebook page, or on Youtube by searching “Pervasive Parenting Ban the ‘R’ Word”.
R-word.org has some great information, so I recommend checking it out. Read old articles at http://pervasiveparenting.blogspot.com/.
Thanks to Scotty Morrison, Jay Falkner, Jennifer Humphreys and Carl Albert State College’s Scholars Program, Tanna Weaver and the Poteau Special Olympics, Barbara Leonard and Gore Schools, B.J. Barnes and the Poteau Fire Department, LeFlore County Roller Derby, LeFlore County Sheriff’s Department, CASC Police Department, Heavener School’s Drama Department, Hillbilly Vegas, Panama High School FCCLA, and anybody else that I forgot that helped out with the projects.
Please spread the word to end the word!

Stand Up


Pervasive Parenting 
By Kodey Toney

Stand Up

In the ongoing saga of HB2962, the Autism Insurance Reform bill, the bill passed the house floor last week with a vote of 76-20. This was a huge step in helping families in Oklahoma who have a loved one on the autism spectrum. But there is still a ways to go. 
The bill passed relatively easy through the house, but not without opposition. I know that the representative that debated the bill was only playing devil's advocate, but I feel that his argument was weak. While Rep. Jason Nelson did a great job with his rebuttal, and I admit I know very little about politics, I wanted to point out a few flaws that were missed. 
The gentleman, who I will leave unnamed because I'm sure he was just doing what he felt was right, made a comment along the lines that, and I'm paraphrasing, "We can't force insurance companies and business owners to provide services. We have an obesity problem, but we wouldn't make the local Quick Trip only carry organic or healthy foods. There are many head injuries caused by bike wrecks, but we wouldn't force bicycle manufacturers to put training wheels on all bikes."
While I admire his effort it is completely unrelated to autism insurance reform. What we are really talking about is discrimination. We are not talking about something that is controllable. Obesity and head injuries are, though difficult, controllable. We can eat healthy, exercise, wear helmets, attach our own training wheels, and avoid those things (I'm only comparing these because he did). 
Autism us uncontrollable. By that I mean, our children did not do anything to inflict this upon themselves. It's not something that happened because of an injury. It is a disorder that just happens. We don't know why. 
It is also something that the insurance companies already cover in 43 other states, and could easily cover here, but because they don't have to they will save a little money at the expense of your child's future. 
If it were 60 years ago, we would be talking about not allowing insurance based on the color of someone's skin. This is something a person can't change. It's something they are born with, the same as autism. 
We are looking at a civil rights battle here; a discrimination issue. 
Understand something, with the change in the bill to only allow services up to nine years of age (it's a little more complicated than that, so read up on it), my son will not even be covered. He will unfortunately fall through the cracks of this bill, but I'm still pushing for it anyway because it will help so many others. 
I sent emails to all 101 representatives telling Konner's story, and I plan to send 48 more to each senator in the state. I encourage everyone to do the same. At the very least contact your local senator and tell them your story. 
This is not about controlling businesses. This is about standing up for the rights of people in Oklahoma!

Forget About It

Pervasive Parenting 

By Kodey Toney

 

Forget About It

 

I sometimes forget that Konner has autism. I know this may sound strange to some, but it is true. It has become such a part of our life that it is our norm. It's only when his autistic tendencies disrupt our lives that I am slammed back into reality and remember that it can be a burden. 

That may seem harsh to some to call it a burden, but let's face it, sometimes it is. When you have to put everything you're doing on hold because of a meltdown or an OCD moment it is an inconvenience.

In these moments don't forget what they must feel like. Don't forget that this thing that consumes them has taken over their body. They can't help their actions. 

As I've said many times in the past, autism is just one of Konner's characteristics. So when he came in my room this morning to tell me a story and he was jumping around and flapping his hands while doing so I almost missed it. I almost forgot that he has this "disorder". 

I had to smile as my mind grasped the oddities that come along with autism; the things we have become so used to. These are the signs that parents look for when they are trying to find out what is "wrong" with their children. These are the same things that I feel make him who he is. 

Sure there are some bad aspects to this disability, but there are some great ones too. 

This is what allows him to concentrate on a subject until he's nearly obsessed. It is the same thing that allows him to be able to design and develop trains on his computer, excel at math and reading, and have a great memory about the things he loves. 

It is a part of who he is, and it has become a part of who we are as a family.

Workin' Together

Pervasive Parenting 
By Kodey Toney

Workin' Together

I've been blessed and overwhelmed with the outpouring and collaboration lately in the work we've been doing in this area, and the area of disability advocacy. 
We have many irons in the fire right now, and the burden is lessened thanks to the help of other organizations and community leaders. 
This is not a brag session for me, or a way to advertise our events (ok, maybe a little), but it is a way to show how important community is to helping a cause. It is also my way of saying thank you for working with us to help the families in this area living with disabilities. 
I was contacted a few weeks ago by Lundy Kiger, one of the community figureheads, and asked if the Pervasive Parenting Center would be interested in a donation of a half-side of ground Angus beef to be used for a fundraiser. I accepted and we began selling chances to win the 170 pounds of meat. When I discussed this with our board of directors they decided that we should split the funds to help the local Special Olympics, a group that we have begun to work closely with because of our mutual interests. 
We had been talking with Randy and Tanna Weaver with Special Olympics about some ways to collaborate our efforts anyway, but one thing we began working on last week was a formal dance for people in this area with disabilities. We are planning "A Night to Remember" which will be held April 23, in Poteau. The dance is open to anyone age 14 and up. More details are available on our website. 
There were many groups joining together at the Capitol lately to help pass the Oklahoma Autism Reform bill. In fact, there are too many to mention, but their efforts helped get the bill past committee with a 6-4 vote. There is still a long way to go, but it's a good start. 
Developmental Wings is a well established organization in the area that works to provide therapies to children with autism. They provide equine, music, and art therapies, as well as others. After Meeting with Michelle Qualls Long recently we have decided to combine our efforts to provide a family therapy night in Roland on March 24. This was something we felt would benefit the parents and the children at the same time. She will work with the kids while I run the parents through the basics of the Individualized Education Program (IEP). 
We also are planning a walk for April 16 in Sallisaw for autism awareness/acceptance. When I started calling around for help with this Darren Garner at The Mix 105.1 and Eric Riggs at Armstrong Bank jumped on board to help out. These are just two of the businesses in the area that are committed to helping out the community, and it is greatly appreciated. 
This doesn't event touch the many family members, including Pat James who helped bring the family night together, and our many board members who work tirelessly to make these things happen. It makes me so proud to belong to these communities. 
If you would like more information on any of these upcoming events please contact me at ktoney@pervasiveparentingcenter.org.

What Might Have Been

Pervasive Parenting 
By Kodey Toney

What Might Have Been

Have you ever left a situation, especially a tense one, and felt like there were so many things you should have said? Or, you remember things that just left your brain in the heat of the conversation? This is what it was like last week when I traveled to the state capital to advocate for House Bill 2962. The Autism Insurance Reform Bill. 
I traveled to the city to meet up with, an estimated 150, other advocates to speak with representatives about how important this bill is to the future of our children, and our state. 
There were so many advocates that I couldn't possibly name them all here, but I do have to say that Tara Hood and Judith Ursitti helped lead the pack. When I arrived I visited with Rep. James Lockhart and Rep. Ed Cannaday to discuss where we stand with the bill, and they both seemed very optimistic. 
I then went to the meeting room and met up with some parents, who happen to be co-workers, Angela Donley and Marsha Berg. We, along with father, advocate, and radio show host Phil Inzinga, went through the capital visiting with representatives. Inzinga, who co-hosts the Morning Animals Show on sports radio stations throughout the state, has been a great advocate for his son and many others on the spectrum. 
Our first stop however left us wondering what had just happened to us. I won't name any names, but one of the floor leaders invited us in, listened to us very respectfully, and then left us feeling like a child who had just left the principal's office. He let us discuss our issue, but when I made the mistake of saying that my wife was a teacher, just to make a point about our income level, he went on a tangent about the state of the education system in Oklahoma. We thanked him for his time, tucked our tails, scratched our heads, and left. 
Fortunately the other people we met with were not quite as intense. 
When I left I had wished that I could have explained that the number of children diagnosed is constantly increasing. This means that if we don't get a handle on this now we are just going to have a larger problem in the future. After all, the future is what we're talking about. 
This is a step toward further acceptance in this state. In addition to the importance of assisting people with autism in making a better life for themselves, it shows that we are willing to accept them for their disability as equals. As it is we are secluding them based on their disability. 
I know that the insurance companies, if they haven't already, will fight this tooth and nail so they don't have to spend money. What I would like to remind the insurance companies, and members of congress, is that this is not about their livelihood it's about the lives of the ones we love. That to me is more important.

Question Everything

Pervasive Parenting
By Kodey Toney 

Question Everything

I'm a bit of a nerd. I love trivia, especially music trivia. I watch Jeopardy every day. I teach a music history class at the college and have a trivia section with my students, and even quiz people at work. I'm not great at it, but it's fun.

This is why I'm excited about the second annual Pervasive Parenting Trivia Night coming up on March 5. This is something that we took over last year after the Special Olympics stopped a couple years back. It's a great night filled with trivia, fellowship, costumes, food, and fun.

Unfortunately I don't get to play, but I love watching everyone else participate.

The event will be held at The Community State Bank in Poteau, OK to raise funds for the Pervasive Parenting Center.

I want to invite everyone to attend.

This year’s theme will be 80s Movies, so each team can dress as characters from your favorite 80s movie (costumes are optional).

The event will start at 7 p.m., with registration beginning at 6 p.m.

Funds raised will go to the Pervasive Parenting Center and will be used to help families in the area coping with disabilities.

There will be 10 rounds of questions varying in category, but most will be 80s themed.

Price to participate will be $100 per team. The teams can include from six to 10 members. Prizes will be given for 1st and 2nd place teams as well as best costume as a team and as an individual.
There will be free food and drinks for participants.

We work so hard to help the families of this area coping with disabilities find resources to help make life better. The funds raised from this event can help us continue to bring trainings, conferences, resources, and programs to this area.

Entry forms can be picked up and dropped off at the following establishments: Poteau Daily News, Clip Joint, and Carl Albert State College in Sallisaw. You can also register online at: https://www.eventbrite.com/e/pervasive-parenting-trivia- night-80s-movies-tickets-20085511305
 
The deadline for registration in Friday, February 26.
 
Checks should be made payable to Pervasive Parenting Center and can be given on the night of the event, or mailed to PO Box 574, Panama, OK 74951.
 
For more information, contact Kodey Toney at (918) 658-5076 or ktoney@pervasiveparentingcenter.org

Tuesday, February 16, 2016

HB 2962, Autism Insurance

Pervasive Parenting
By Kodey Toney

HB 2962, Autism Insurance

With the legislative season underway in Oklahoma there are several bills of interest to me, but one that particularly has my attention. This is something that I think will impact the future of my son, and other families coping with autism. This is why I have brought it to the attention of not only my legislators, but the legislators in my area.

I would like to share a little bit of what I let them know, because I truly feel that House Bill 2962, which will help families receive insurance for the services needed to help their children succeed in life, will be beneficial to the future of our families and Oklahoma as a whole.

I will paraphrase the letter that I sent to the legislators:
At the age of three my son, Konner, was diagnosed with autism. I began advocating for my son and in turn other families in Oklahoma to help find resources.

We receive therapies through our schools such as occupational, speech, and sometimes physical therapies, but the funding there is limited, and the hour or less we receive per week is not enough. So, we seek additional therapies.
 
The problem is that, because our insurance that we work so hard to pay for through our jobs as educators, does not cover these necessary therapies because insurance companies do not have to provide for autism in the state of Oklahoma. This is also true for Sooner Care recipients.

There are additional therapies that have been scientifically proven to help children with autism, and other related disabilities, improve their quality of life.
 
Among these is the Applied Behavior Analysis (ABA) therapies that help children with behavior issues, due to their disability, perform better in the classroom, work environment, and in public. However, due to the lack of insurance requirements we don’t have easy access to these treatments.
 
Autism Speaks only lists thirteen ABA therapist locations in Oklahoma, and those are concentrated in the metro areas. The lack of therapists in this state is due partly to the fact that they cannot bill the insurance companies for their services.

We are one of only five states that are still not seeking autism insurance reform.

Thanks to the therapies that my son is receiving he has reached milestones that we were told he would probably never see. However, he has a long way to go if he wants to lead a happy and productive life. Our goal for Konner is the same as any other parent I suppose.
 
We want him first and foremost to be happy and healthy. Then we want him to live a life where he is a productive citizen. We want him to be able to be a part of the workforce and give back the way we do.

The insurance that we are seeking can help him with this goal. It can help him cope with his deficits in the language and social skills that it will take for him to complete school, go on to higher education, and eventually hold a job in the workforce.

However, without these therapies he could fall into the cracks that we have seen all too often with children with disabilities. He would become dependent on the state and federal system for funding to help with his disability.

The insurance reform will be a huge step in many areas of the state on several levels. It will help with humanitarian goals by providing a better life for our more than 600,000 citizens who have a disability. More than 200,000 of them are without work.

We could increase our workforce in the future in several ways. One would be to create more jobs with the insurance reform. If you allow this modification you will see an increase in the number pursuing the certification in the state for ABA and other therapies.
 
This in turn can increase programs in higher education, jobs, revenue, etc.

In the long run, by providing those with autism a way to cope with the symptoms of their disability and learn how to function in a classroom, working, and public environment, then we can help them to become more productive citizens.

In short, we can provide this insurance, and spend a little money now to help create more revenue in the future and a future for our family members, or we can continue to do what we have and pay for disability related services and funding for the rest of their lives.

I am extremely grateful to Rep. Ed Cannaday and Rep. James Lockhart for signing on as co-authors for the bill. It shows their progressive nature in helping families in our area of the state.

I encourage you to contact these and any other member of congress to express your thoughts on this bill.

The Way You Do The Things You Do

Pervasive Parenting

By Kodey Toney

 
The way you do the things you do

 

I spent Friday in Oklahoma City with the Oklahoma Developmental Disabilities Council working on the upcoming state plan and going over budgets, among other things. This made me think about a few things. They asked me to fill out a biography for an upcoming change to their website. As I was working on this I started thinking about some things that we have done over the past couple years with the Pervasive Parenting Center. I would like to share some of these things in case many of you were unaware of what we have to offer in this area.

I think much of what we have done started with parent support group meetings. This is something that we started to help families share information, stories, resources, and just have a place to feel like they were “normal”. We try to hold these monthly, and began last year rotating them from each county. During these meetings we do anything from just talking things out and sharing our problems to trainings. In the past we have trained on subjects including care/communication notebooks, autism basics, IEP basics, and people first language.

In March we are working with Developmental Wings, which is another great organization in our area, to provide services for the children with autism during our regular meeting. This will be held in Roland this time, and plan to move around as well. Developmental Wings helps with therapies including art, music, and equestrian for children with disabilities. Check out their website at www.developmentawings.com.

Each month we also hold Sibshops. This is for the siblings of children with autism. This helps them have their day to feel like they are important, which of course they are. They usually have to be drug around to the meetings, therapies, and other assorted appointments. They have to grow up faster than they should. This is a way for them to have a fun day just for them.

We have been working with Special Olympics, and hope to continue that work in the next year. They are a wonderful group of people working with kids to help them become good athletes and great people. It’s an awesome program for kids like Konner who were shunned from playing school sports from the school coaches, but he has people who believe he has potential with the Special Olympics. You can contact Tanna or Randy Weaver on facebook for more information.

We work to provide conferences and trainings in this area including inclusion in the classroom, autism training, and people first language for any school, business, organization, or individual that is willing to listen. These are free. Just contact me for information.

If families are having issues with an IEP, we will work to help advocate for the child. This is anything from just looking at it to see if you are getting things you need, to making sure that the goals are productive for your child. We can also advocate in the IEP meeting if necessary, but try to give you the tools to advocate in the meeting for yourself first.

More than anything we are just here to help give families a place to find what they need. If you need resources we will find them if we don’t already know them. If you need someone to ask for advice we are here. If you just need to talk, we are here too.

I always tell people, I’m just here to help. I’m trying to provide a service I wish I would have had a few years ago when we first found out about Konner’s diagnosis.

 

You can check our facebook pages and website for dates and times, or just email me at ktoney@pervasiveparentingcenter.org.

Friend Like Me

Pervasive Parenting
By Kodey Toney
 
Friend Like Me
 
If you have been on Facebook lately you’ve likely seen an app, meme, survey…I’m not sure what it is, but if you push the button it gives you a little anecdote about your experiences on the app. It says something about how you push the like button, or don’t post pics of your food, etc. At the end it says “Be like Kodey.” These are amusing, but I found a meme related to this app and autism that I had to share, because I feel it sums up the disorder and what is necessary to help those on the spectrum. I would like to share it here, and break it down with my opinion.
Here is what it says, I’ve substituted the name Jim for Konner though:
“This is Konner,
Konner has autism,
Autism is incurable,
Konner will grow into an adult with autism,
With the right support Konner will grow into a fine young man,
Whatever his abilities may be,
Be Konner’s Friend”
I think this is great for parents, professionals, and any advocate to understand.
Let’s start with the fact that Konner has autism. That’s a fact. There is a piece of paper from a professional that states that based on tests and observations. This is something that you have to accept in order to help a person on the spectrum, whether you are a parent, educator, professional, or self-advocate. If you deny this then you are not helping.
Autism is incurable. It is treatable, but there are no cures. You can’t take a magic potion, alter a diet, or take a pill and it all goes away. The person will always have autism. They will find ways to cope with the symptoms, tolerate the issues involved, and have a better life, but it will always be a part of them. I like to think of this as a characteristic.
They will grow into an adult with autism. This is why it is so important to work with them early to get the therapies and supports they need to learn how to tolerate these issues. The faster we do this the better chance they have of being a productive part of society. With this they will grow into fine young people.
This is true no matter what their abilities may be. If they are high-functioning, moderate, classic symptoms, verbal, non-verbal, or limited communication they still can find something they can do to become productive. They just need the supports and people believing in them.
This is why it’s important to be Konner’s, or anyone else on the spectrum’s friend. It is important for people to care enough to take those on the spectrum under their wing, help mentor them, show them the direction they need to go, and just be a friend. We as a society perform better when someone believes in us, and help us.

Cuts Like A Knife

Pervasive Parenting

By Kodey Toney

Cuts Like A Knife

With a $900 million deficit in the Oklahoma budget one of the largest areas to be hit is the education department. This is nothing new, and it will continue to be an issue. While this is not the only area to be cut or affect those with disabilities, it is a vital category that I want to address. This is because it has come to my attention more than twice this past week with questions from parents and educators.
The issue is that administrators all across the state are looking for ways to cut budgets. One Tulsa news station ran a story about Inola Schools reducing their workforce in janitorial and food prep areas. They are working on cutting any of the “lower level” jobs. While these are very important, and any layoffs are a bad situation, the one that perked my ears up was the cut in paraprofessionals in many local schools.
I had a message in my inbox last week from a local parent asking me if they could take her child’s para due to the budget cuts. This gets complicated, but let’s take a look at it for a second.
The short answer is…maybe. Ok, that’s pretty vague and not what most want to hear, but you have to understand a few things first.
1.       If it’s in the Individualized Education Program (IEP) that your child requires a paraprofessional then they cannot cut this without violating the IEP. Don’t forget that this is a binding contract and this would be a violation of the Individuals with Disabilities Education Act (IDEA). If your school has agreed that your child needs someone to assist them throughout the day, and it has been signed off on in the IEP then they cannot retract that, at least not without a meeting to discuss and agree upon with the entire team. Though there is slightly more to this, in a nutshell this is the way the law reads.
2.       Make sure what your IEP says. If it says that the child must have a para for the entire day then that is what they are required to provide. However, if your IEP only states that the child requires a para to help with bathroom breaks and at recess then that is all they have to provide. It is only as specific, or not, as it is stated in that IEP.
3.       If it is not in the IEP, and your child has a general paraprofessional for the classroom that they are in then the school can terminate that service as they see fit.
This of course is not what is needed. The children need as much assistance as they can get throughout the day to help with certain aspects of their education. Don’t forget though that they only need to provide what is necessary. The child needs to learn to be interdependent not dependent on the para. They need to be working to do as much for themselves as possible without assistance, and the para only intervenes when needed.
If I’m looking for a silver lining then there are parts of this that could be a good thing. If it was not in the IEP, and your child loses their aide then this could help them become more independent. After all, as I’ve always said, the job of a paraprofessional is to work themselves out of a job, and make the child less dependent upon assistance.
If you are concerned that this is what I would suggest is checking the IEP to make sure what is specifies as far as a paraprofessional is concerned. If it doesn’t say that it is a full-time position then I would call an IEP meeting and see if you can get it added. The problem is that right now it’s going to be difficult to get the schools to include this if they are trying to cut budgets.
If you need assistance any aspect of this, you need someone to look over the IEP, need someone to advocate in the IEP meeting, or have any questions don’t hesitate to contact me at ktoney@pervasiveparentingcenter.org.

My Shiny Teeth

Pervasive Parenting
By Kodey Toney

My Shiny Teeth

Going to the dentist can be terrifying for anyone. The uncertainty and possibility of pain lurking in the shadows of every exams room is enough to make the biggest man cringe with fear. For a child on the spectrum, or with sensory issues this is turned up a notch or two. 
This week Konner and I made the trek to the dentist to have a cavity taken care of on Wednesday. This wasn't as bad as most would think. In fact at times it was funny. 
Before I get into the story of our visit I want to explain a few things. Konner did very well going this time. He didn't get too anxious, although there was a little fear, as you will see, but it's because we have worked with him over the years. One of the biggest problems with most visits is that uncertainty that I talked about before. So, one of the best things to do is to talk to your child. Walk them through the process the best you can, and let them know step-by-step what will happen. 
I began this step with Konner on the car ride there. This is because we forgot to tell him the night before, which is not a good idea, but as I said he's been going for a while and already has a good idea of what is going to happen. 
So we arrive and as we come in the door I notice Thomas the Train on the television in the waiting room; score! He was happy about that and it put him at ease a little. When we are called back he was asked to lay down. I sensed a little apprehension, so I helped him, but he knocked the hose that fits over your nose for the gas onto the floor. That was okay, but the assistant had to clean it off, so when they put it over his face he caught a huge smell of cleanser and he didn't like that at all. In fact the whole time he was on the table he was upset about the powerful smell. 
He began to look around and asked, "Are there any little jack hammers?" The nurse answered no and then asked, "Where did you hear that from?" He of course answered some cartoon on Facebook. He was reassured that there where no jack hammers.
He then began to give a play-by-play of Thomas playing on the ceiling. The assistant told him he would have to stop talking and close his mouth so he could breathe in the gas and relax.  He then complied and continued his story with his mouth closed. 
He decided to try to talk the entire time the dentist worked on his tooth. 
In all he did very well though, and was ready to head back to school afterward. 
A little preparation will help. Is it fool proof, no. It has taken some time over the years, and lots of preparation.

Dear Friend

Pervasive Parenting
By Kodey Toney

Dear Friend

Dear Diary,
For Christmas Konner received a diary that he asked for and began chronicling his daily life importances. The problem is that he tells about everything that he writes in it. In that same spirit I have decided to write this week's article in diary form. 
I really appreciate that Konner wants to write down his thoughts and keep up with what he feels is important. I just wish that he wouldn't share all of those ideas with his little brother.
By the way, his little brother is your typical brother. Even if Konner didn't tell off on himself, Kruz sneaks into his room and finds it to read. I mean, I'm really proud that he can read so well, but I wish he would leave Konner some privacy. 
However, I'm glad that in many ways they are "typical" siblings. 
Diary, this break has been pretty typical, but there have been a few things that have been a little different. Konner has been very agitated and aggressive in ways. He has been yelling and screaming, and I haven't been able to get things under control. On top of the outbursts he has been having tantrums (not meltdowns), and he has been really whiny lately. I guess this can be expected during Christmas break. After all, his routine is thrown off completely, and his little brother has been annoying him to no end. 
I just hope that it doesn't make going back to school too bad for him, but it probably will. I really hope that his teachers and classmates understand and work with him.

Between A Rock And A Hard Place

Pervasive Parenting 
By Kodey Toney

Between a rock and a hard place

I was reading an article lately that had a list of advice for parents and I thought I would share some of it with you and how it relates to our family.
"Your child will teach you more than you will teach them." These seems to be more true every day of my life. Whether it be patience, tolerance, acceptance, or how to be a better person, I learn something from him all the time. He has taught me more than any textbook or research.
“You have no idea how much potential you both have to exceed your expectations.” Looking back seven years ago I would have never thought I would have been where I am as a father or advocate, and I owe a huge amount of it to Konner. He continues to be my driving force. However, if I had listened to many experts, professionals, and other who were trying to give us advice on Konner he wouldn't be where he is today. We were told so many things that he was not supposed to be able to do, but we didn't listen and kept pushing him. 
“You are not weak when you get angry and upset.” This is one I struggle with daily. I probably sound like a broken record to my regular readers, but I want so badly to be a good father that when I lose my temper and yell, or do things to make the situation worse I feel like I am failing as a dad. You have to understand that it's not easy to raise any child, but especially not one with sensory issues and I stand meltdowns. You will loose your cool, you just have to control yourself the best you can if you expect to control the situation. 
“It’s a lot harder (living with autism) than it looks. It infiltrates every crevice of your life and affects every minute of every hour of every day. It’s right there when you wake up in the morning and doesn’t stop challenging you until bedtime (and doesn’t stop even then). Try as you may you will never get away from it. When you get alone time it will consume you. When you try to sleep it will overtake your brain, and when you think you have control it will prove you wrong every time. 
“You and your child have nothing to be ashamed of.” You both are who you are. You can't change your child, so don't be ashamed. Embrace who they are, and even celebrate if you want to because they are awesome. Everyone else can just live with that. 
These were just a few things that were discussed, but I feel they are very important to remember. You have so much to be happy about. Your child is special, different, quirky, funny, smart, and about a hundred different superlatives roled into one great little package.