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.