Sunday, December 22, 2013

Carry On My Wayward Son

Pervasive Parenting
By Kodey Toney

Carry On My Wayward Son
...
I've been bringing a series of columns lately featuring the book “The Reason I Jump” by Naoki Higashida interpreted by David Mitchell. This is a book written by a teen from Japan who is on the spectrum. He gives some insight into what it's like living with autism. So let's carry on with more.
We have probably all noticed, whether on television or in real life, when people encounter someone with a disability we tend to change our tone. I think about a scene where someone is meeting a blind person and the first thing they do is start talking louder. I know this may seem silly, but it happens more than you would think. The person's hearing is not bad, in fact it's usually heightened, so why would we do this? We don't mean disrespect. We just feel like we're trying to help.
The same thing often happens when we meet people on the spectrum. This can come in many different forms, and though we think we're helping, as Naoki shows us, it actually is hurtful.
While many people may speak louder to someone with autism, one of the most common communication modifications is baby talk. We tend to talk in gibberish or speak the way we do to newborns.
In the section “Do you find childish language easier to understand?” Naoki addresses this issue. The answers he gives are not surprising if you think about it.
He explains that talking to someone on the spectrum is like talking to anyone else. Wow, what a concept! Let's treat everyone the same? Crazy idea, I know.
Let me start by saying that I never talked baby talk to kids. Besides finding it demeaning, we have to remember that children are followers. They mock what they see and hear. This can actually cause speech issues in the long run, and that's with any child, but especially someone on the spectrum.
Naoki said that he just wants to be spoken to according to his age and issues. He said in the book, “I’m not asking you to deliberately use difficult language when you talk to people with autism—just that you treat us as we are, according to our age. Every single time I’m talked down to, I end up feeling utterly miserable—as if I’m being given zero chance of a decent future.” And this is a person with low-verbal skills.
I think of my dad. He has hearing issues, so we all know to talk louder around him. However, most people don't know that, so they speak normal and he can't hear them very well. Someone usually has to tell them to speak up and all is well. This is the way we should treat someone with a disability. Until you are asked to change your communication just be natural.
The last thing you want to do is hurt someone's feelings, but often times we inadvertently do so just by trying to be compassionate. Naoki says, “True compassion is about not bruising the other person’s” self-respect"
This is something to think about

Have Yourself A Merry Little Christmas


Pervasive Parenting

By Kodey Toney

Have Yourself A Merry Little Christmas

As Christmas comes closer some of you may be scrambling to find last minute gifts. If you’re shopping for a child on the spectrum it may be a little more difficult than you think. While I would say that you should treat a child on the spectrum the same as anyone else, there are a few things you may want to consider before grabbing just any toy off the shelf.

Most parents know their children well enough that they know what to buy them for Christmas, but if you’re like me and Jen then you’re a little more confused when it comes to your child with autism. Kruz, our neurotypical child, has been very vocal about the things he wants…everything. However, when we ask Konner he doesn’t really say much. He has told us a couple things, but when we try to even that out with what Kruz wants it’s difficult.

This is not necessarily geared toward parents though. This may be for the grandparents, aunts, uncles, neighbors, teachers, etc. who are looking for some little gift for a child with Autism Spectrum Disorder (ASD) this holiday season. Many of these are just common sense for any child, but some you may not think about for children on the spectrum.

The first thing I would say is don’t buy anything with little parts. Small objects are hazards, but they may also be an issue for a child on the spectrum. Those small items can get lost easily and if they do there could be a meltdown in the works. The toy is probably useless from that point on because they will be upset about that missing part forever. Konner has had many full-blown meltdowns because he couldn’t find a toy or part, or something has broken. I can’t tell you the amount of toys I’ve either hid or thrown away just because something was missing.

Noisemakers are something I would avoid. I know you’re thinking that it is just the parent in me not wanting to listen to a toy play a song over and over, or a loud whistle or instrument. While that is partially true, the other aspect is that many children on the spectrum are sensitive to sound. These loud noises can cause irritation and are potentially more harm than good. As fun as it is to torture the parents it’s not that fun to torture the child.

Be cautious when buying messy items. If you’re looking to purchase things like finger paints, slime, or even Play Dough you might think twice. Again, while it’s partially because the parent usually ends up cleaning up the mess, you may have some children who are sensitive to touch. This is a tricky one because you want to encourage creativity with art, but if the child doesn’t like the feel of wet, slimy stuff then it could do more harm than good in the long run.

You don’t necessarily need to look at things age appropriate because children on the spectrum develop differently. Some may develop slower and some may be more advanced for their age. If you’re not sure just ask the parents.

I would also make sure that the child isn’t over sensitive or under sensitive to certain material. Some children like soft, fluffy stuffed animals, and some are repulsed by the feeling. Some children like rough, scratchy material like sandpaper, but for others this may make their skin crawl.

So what should you buy then? Think about calming items. Again, if they like soft things or rough things try to find out. Many kids with ASD like pressure, so you might look for heavier objects like body pillows, weighted lap pillows, and large stuffed animals. Visual stimulation is good as well. Projection lamps, things with motion, oil filled tubes such as the ocean wave simulators, and fish tank simulators are great ideas, especially for the younger children. Any kind of game that helps to build social or language skills is good as well. You may look at board games where they have to interact with other people or flashcards where they learn letters and numbers. Social story books are a great thing as well. Anything that will teach social cues and how to act around others will be beneficial for life.

The last thing I would say is just to know their special interests. If they are into trains, which many are including Konner, then buy train stuff. Legos, while including many small parts, are also versatile. There are Legos of all sizes so they are age appropriate, and they make Legos for everything. If your child is into Ninja Turtles, Thomas Trains, Star Wars, etc. there is a Lego set for you out there somewhere.

All of these are just ideas. Keep in mind that they are sensitive and that they are children. Don’t over think it. They’re going to be happy to have something for Christmas.

Sunday, December 8, 2013

Family Vacation


Scout Cookout


Pose


Birthday


Pumpkin patch


Cheese


Looks just like PopPop


Cub Scout Camp


Swimming


Kruz & Konner


Snow Play


Brothers


Konner's Snowy

Konner made this all by himself!!

Why Do We Never Get An Answer

Pervasive Parenting
By Kodey Toney

Why Do We Never Get An Answer

In a recent column I started talking about a book I have been reading. “The Reason I Jump" by Naoki Higashida, translated by David Mitchell, is an account of living with autism from a teen with low verbal skills. I'd like to share a couple more interesting points from this book.

One question asked was, "Why do you ask the same questions over and over?" I've noticed this at times with Konner. He will ask something like, "Where are my shoes?", and my response will be either that I don't know or maybe in your room. He will come back with the same question in a minute or two. I've often times wondered if he's even listening to my response.
Naoki gives a simple response, but it helps us understand what may be going on inside. He said, “I very quickly forget what it is I’ve just heard."
For this very reason mornings are almost always a bad experience in our house. This forgetfulness mixed with Konner's Attention Deficit Hyperactivity Disorder (ADHD) causes my patience to wear pretty thin. The fact that I'm not a morning person just amplifies the situation.
I'll ask Konner to do a simple task like, "Konner can you find your shoes?" I make sure that I say his name first so that he understands I'm talking to him. I try to make sure he's directly in front of me, and that he hears me. I'll often ask him, "Do you understand?", and wait for a response. I try to give him choices like, "Look in your room and in the computer room." 
I'll look up five minutes later and he's still running through the house back and forth screaming. 
So I then say (or yell sometimes), "Konner, what did I just ask you to do?" His response is almost always, "I don't know daddy."
Then we have to go through it again. 
Other times his memory is very impressive. He can remember things about trains, Minecraft, math, and television programs that I don't understand. I wonder sometimes if he just has selective hearing.
Naoki explains, “My memory, however, is more like a pool of dots. I’m always “picking up” these dots—by asking my questions—so I can arrive back at the memory that the dots represent.”
What this means is that as he asks a question and gets an answer he stores them away in his brain as dots. We store data in a continuous stream, like a timeline. We try to recall things as they happen by events of that day. People on the spectrum have to sort through the dots to find the information they need to remember things, and then express them verbally. Thus is probably why it takes them some time to respond when questioned. 
This is only a small look at verbal issues, but I hope it helps shed a little light on the difficulties of communication. 

Jealous Again

Pervasive Parenting
By Kodey Toney

Jealous Again

My wife, Jennifer, called me the other day and said, "Kruz just asked me out of the blue, 'Why does Konner have autism and I don't?'" 
We've always tried to explain to him that Konner has autism, but I'm not sure if he truly understands.
So, when I got home I laid down with him and Jen and tried to tell him the best I could.
Kruz is five, and is in a bit of a selfish stage. He's in that stage where if someone else has something he wants it. You know, like a toy he hasn't played with in months, but suddenly he sees someone else with it and he has to have it because he, "was playing with it!" I think he was a little jealous that Konner had something that he didn't have. 
I tried to keep it as simple as possible. However I really wanted him to realize that, while it's not a great thing, it's not necessarily the worst thing. 
So I began by explaining that God thought he needed to be unique. I know this May sound cheesy or cliche, but I really think that Konner's autism is a blessing in disguise. If nothing else it has given me a different outlook on life and disabilities. That in itself is a blessing. 
I then started to tell him the bad things that make him different. I said, "Do you know how Konner gets frustrated, screams, hits, pinches, and bangs the (computer) mouse? He does this because he is upset over things going on around him. He smells thing stronger than we do. He sees hears things we block out. Things feel different to him. His clothes itch and poke and scratch him all the time."
At this point I could see him trying to process the information. I tried to explain that these things cause him to be upset many times.
I told him how the autism also affected his thought process. He has to think when talked to, or asked a question. This is why it takes him longer to do things in the morning.
I wanted to make sure that there were some very good points too though. So I explained that Konner was better at certain things than most. I told him that he was really good with numbers and math, and that he can read better than most.
I'm still not sure he fully understands, but I do know that he has at least started to think about some, and that's a good step. 
I think it's important that siblings understand what is going on with their brothers and sisters. We just need to make sure that they are getting the good an the bad. It can help us in the long run when they try to help out or when someone is making fun of someone else with a disability they can try to step in and educate. 

Monday, November 25, 2013

Come Together

Pervasive Parenting

By Kodey Toney

Come Together

This week I had the privilege to attend the Oklahoma Statewide Autism Conference in Midwest City. This was the first time for me to attend, and I enjoyed every minute of the experience. When I attend these conferences I have several motives. The first is to learn as much as I can to help my child. The second is to gain as many resources as I can so I can share with the people of eastern Oklahoma. The third is that I can network with new people and renew relationships with people Ive met in the past so that I can continue to gain knowledge and resources for my advocacy. I achieved all of these goals this week, and would like share some information with you. 

The conference is sponsored by the Oklahoma Autism Network through the University of Oklahoma Health Science Center. This group did an excellent job of bringing in some awesome speakers and presenters with great insight into the autism world. 

Rep. Jason Nelson kicked off the day by speaking to the crowd about being reactive. Nelson is one of the leading lawmakers in the state, and is one of the greatest proponents of people with disabilities. He explained that we have to be creative in order to be reactive in helping to advocate for people on the spectrum.

The first morning we were honored to hear the great Temple Grandin address the crowd as the keynote speaker. If you dont know who Dr. Grandin is go look her up, Ill wait…she is one of the greatest assets we in the autism world have forunderstanding our childrens condition. 

The first thing that Grandin talked about hit close to home. Shes a big advocate for making children use the physical world and limit their technology. She exclaimed, “We have to get them off the video games and out of the basements.” She went on to give ways to help with this. If your child loves to play Minecraft, and Konner does, then we have to give them another outlet for that. Give them some Legos and make them play Minecraft with them. I found this to be a great idea, and while its easier said than done, the point is that we have to find other outlets for our children than just technology. Those devices like computer, video game consoles, phones, and tablets are good in moderation, but we have to find other channels for their imaginations. 

She explained that using a tablet or iPad verses using a laptop or computer is also a better choice for children on the spectrum because of the location of the words and the keyboard is better. This something Ive never even thought about, but if the child can look right at the letters as they are typed out instead of looking down at the keyboard and then up at the screen there is going to be more productivity. 

She also explained that we have to continue to force children to use social skills. One thing that parents tend to do, myself included, is have anxiety issues with going into the public with your child. That uncertainty of what may happen causes you to hate most outings. I tend to have to psych myself up. She reinforced what we all know. You child is never going to get comfortable in those places if we dont continue to put them in those situations. Take them to Wal-Mart or McDonalds, but take it a step forward. Make them order their food. Make them pay for their toy or items at the grocery store. Put them into situations where they will feel comfortable. When they get older they are going to have to do some of these things for themselves. 

These of course are only highlights of a great presentation. There are some other hot-spots of the conference that I wanted to share. 

One of the keynote speakers on the second day was Dr. Brenda Smith Myles, PhD. She spoke to the crowd about the “Hidden Curriculum: Practical Solutions for Understanding Rules in Social Situations.” This was eye-opening for me. These are the “unwritten rules” of life that we just assume everyone knows. An example Myles have was the rules of hitting on a girl you like literally and figuratively. When we are six years old we as males tend to show our affection for girl by hitting and pulling hair. A child on the spectrum might not understand this, but will either follow the lead of some other boy, or be given instruction on the proper use of hitting and pulling. This is all fine until the child becomes a teenager and has an infatuation with a girl. When you are 17-18 years old and you hit a girl or pull hair thats called assault. Now this may seem outlandish to some, but there are children on the spectrum that dont understand this “hidden curriculum” of life. We has “neurotypicals” take for granted that someone should know these social rules. 

She went on to explain that many of these rules are issues including things that could cause serious repercussions. Bathroom etiquette and dealing with law enforcement are two main areas of concern. Without proper training they could have some major consequences. I hope to hit on this more in a later column. 

There was so much information my problem is trying to cram it all into this weeks article. I tried to hit on the main subjects, and will try to throw other information into later columns where I can. I hope this gives a little insight into the great information I received at this conference though. 

Sunday, November 17, 2013

One Is The Loneliest Number


Pervasive Parenting

By Kodey Toney

One is the Loneliest Number

I’ve often said that I would really like to get into Konner’s head just once. I wish that I could have a little bit of an idea what is going on inside his head. I also talked about a book recently that I was reading titled “The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism” by Naoki Higashida, translated by David Mitchell. This truly is eye-opening. It gives you a small insight into what it is like to live day-to-day with autism.

Keep in mind once you’ve met one child with autism you’ve met one child with autism, but I think many of these things are probably pretty universal. No child is going to be same, but the things they are feeling are probably pretty constant.

I’m going to share a little from the book that I thought was interesting. I’m also going to try and relate Konner’s issues.

In one of the first sections of the book Naoki addresses the fact that most people thing those with autism prefer to be loners. He explains that “he values the company of other people very much, but because communication is so fraught with problems, a person with autism tends to end up alone in a corner, where people then see him or her and think, ‘Aha, classic sign of autism.’”

I’ve witnessed Konner many times walk over to somebody or some kid and I can tell that he wants to talk to them or play with them. He usually ends up just standing there watching, or talking about things like trains. In fact right now he is in my ear talking about trains, Edward, tenders, and track gauges. This is something that not many children his age are interested in listening to for long periods of time, but it’s what he knows and feels comfortable about.

I found it interesting that In Japan they use three characters for the word “autism”. They stand for “self,” “shut,” and “illness.” This makes it seem as if a child with autism is sick and shut-off from the world or within themselves. This couldn’t be farther from the truth. Autism is not an illness, though many people want to “fix” those on the spectrum. They are also only “shut-off” if they can’t find a way to communicate. We have to find ways to help them open up.

There is usually this misconception too that children with autism don’t feel sympathy or empathy. Naoki said that this is not true. In fact, often he is conflicted with the feeling that he is a burden to his family. He states, “If autism was regarded simply as a personality type, things would be so much easier and happier for us than they are now. For sure, there are bad times when we cause a lot of hassle for other people, but what we really want is to be able to look toward a brighter future.”

I can tell when I really get upset with Konner that is affects him. He will come to me sometimes with tears in his eyes and let me know that I hurt his feelings. Now I know that he feels these things, and that I should be more aware of getting upset with him. However, the common myth is that this is not possible. Be careful of what you say around your child with autism. Even if they are non-verbal they can hear you and understand.

Naoki addresses the question: Why do people with autism talk so loudly and weirdly? There was a Will Farrell skit on Saturday Night Live once where his character had Voice Modulation Syndrome. He couldn’t control the volume of his voice. This is what living with Konner is like. At times he talks so softly that you can’t understand him, and there are other times when he seems so loud you can’t hear yourself think. He does this without even knowing there is a problem. Naoki said, “People often tell me that when I’m talking to myself my voice is really loud…this is one of those things I can’t control. It really gets me down. Why can’t I fix it?” He goes on to explain that the sound of his own voice is comforting, but the voice he can’t control is different. “It’s more like a reflex,” he explains. “It’s almost impossible to hold it back, and if I try it actually hurts, almost as if I’m strangling my own throat. I want to be nice and calm and quiet…(I) simply don’t know how.”

Keep in mind this is coming from a child who is virtually non-verbal, and has found a way to communicate through writing.

All of this is just in the first section of the book. I hope to bring more insight to you in the future.  

Sunday, November 10, 2013

Tip of the Iceberg

Pervasive Parenting
By Kodey Toney
Tip of the Iceberg
I often include a disclaimer with my articles stating that I’m not an expert, just a father trying to learn as much as I can about autism so that I can help my child. That has been the case for the past five years, and, as I stated last week, we all need to try everything we can to help our families and others. Some may say, “I’m not an expert. I don’t know much about autism.” Here are some tips I would give to help others coping with a child on the spectrum.
1. Research: You can’t help if you don’t know what to help with. If you have a child on the spectrum you understand the day-to-day issues involved with raising a child who has meltdowns, social issues, behavior problems, and a lack of communications skills. What you don’t know often times is what causes that, what you can do to help, and what you need to look for to head off the problems in the future. You have to do the research to help. If you have a questions ask someone, or look it up. Google is a wonderful tool for families.
2. Network: You have to make contact with others. You’re not the only one dealing with these issues, and you’re certainly not the first. You have to go to conferences and support groups. The more people you meet the more resources you will find. You will find things out there that you never knew existed. Continue to add to your contact list, and you will continue to gain a wealth of knowledge.
3. Know your resources: You have lots of resources out there including therapists and professionals who can help if you ask. Don’t think you know everything and they can’t help you. I once heard someone say, “I can learn something from anyone, even if it’s what not to do.” That’s such a true statement. Don’t forget that the people who know best though are the families who have already been through it and have used the trial and error method of parenting.
4. Know where to look: Help can be found anywhere. I had a mentor tell me once not to just limit myself to the autism world. You can learn a lot from people in any disability realm. You would be surprised that they are going through many of the same problems that we are despite their diagnosis.
5. Never give up: It’s easy to feel overwhelmed. It’s easy to feel like what you are doing is not helping that many people, or that nobody is listening. Don’t get discouraged. If you help one person that’s one other person you have helped. They may go out and help two, and they may help two more. It’s the pay-it-forward thought of advocating.
6. You’re unique, just like everyone else: Don’t feel like you’re alone, but don’t feel like what works for you is going to work for everyone. Many people are going through some of the same things in their lives. You’re not much different. However when giving advice to someone keep in mind that what works for you doesn’t work for everyone.
7. Take a break: Don’t get burned out. It’s really easy to do. You have to take a step back and recharge.
8. Don’t forget why you’re doing it: The overall goal is to help others. If that’s not why you’re doing it then you need to reevaluate the situation. Self-gratification is not a good reason, but I’ve seen many people who have that as their main objective. This is never a good idea.
9. Don’t forget to practice what you preach: You can tell someone to do things and help spread the word. You can tell them to spend more time with their children and do more research. However, if you’re not doing that yourself then it’s just phony.
10. Don’t forget your own child: You have to focus on the family and your child first. That’s the main reason you got into this line in the first place. You wanted to do what was best for you child. You wanted to make a good life for them. If you are working too hard to help others that you’ve neglected your child you’re probably not focused in the right direction.
If you are interested in helping other you can contact me. I’ll let you know who to contact. If I don’t know the answer to something I will find someone who knows. The most important thing is to try.

Helping Hand

Pervasive Parenting
By Kodey Toney

Helping Hand

The Eastern Oklahoma Regional Leadership Conference was held Saturday, and it was great. We had several presenters, along with parents and professionals from throughout the area on hand to discuss issues in the world of developmental disabilities.
I was honored to be the opening speaker because I knew the conference was going to be informative, but I didn't know for sure what I was going to talk about. I jotted down some ideas ahead of time and on Saturday morning I gave it my best. What I wanted to get across was the importance of working together, and sometimes alone if you have to, to increase awareness and available resources in our area of the state.
I'll share a little of what I said with you now.

"I am a writer and advocate, but
first and foremost I try to be a good father.
"I have boys, Konner who and Kruz.
At age 3 Konner was diagnosed with autism.
"I was a journalist and enjoy research, so I began doing as much research as I could. I read books, surfed the internet, and looked for any resources I could so I could find out as much as I could to help my child get the best life he could have.
"What I found at first is that there are not that many resources in our area. But, as I did more research I actually found that the resources for the state are out there if you know where to look. That was the problem though. Not many people knew where to look, or even what they were looking for.
"My wife Jennifer and I joined a local parent group called Parents of Autism. That helped to vent, but I found out that many of these families didn’t know about the services that they could receive.
"I decided to do what I could to help educate this area, so about three years ago I contacted a friend of mine who was the editor of the Local newspaper and told her about my idea for a column. She was happy to do it. That grew into three other publications and several online sites.
But I didn’t want to stop there. So another friend, Konner’s speech therapist at the time, told me about the Partners in Policymaking program. I jumped at the opportunity to learn more about autism.
This program taught me about so much more than just autism. It taught me about advocating for all disabilities, networking, and basically just helping others.
"I came out of there thinking that I could conquer the world, or at least the disability world. In fact I got in trouble a little the first time I went in to advocate for a family at an IEP meeting.
"I recently spoke to a group of teachers here in Sallisaw, and psychology class here on the CASC campus. I have been talking to the student body each April about autism awareness. I go to any conference I can in the state to learn what is out there, network, and share that information. I want to talk to anyone who will listen.
"I’m currently working on a non-profit organization to establish a resource center in this area of the state to partner with people like the Oklahoma Family Network, NAMI, ODDC, and the Oklahoma Autism Network etc., so that we can work together to help the families around here receive the best possible care.
"You see acceptance is the most important aspect of coping with disabilities. If we can get the communities to accept us then we will have won a huge battle.
"Everyone in this room should be applauded for giving up your time to be here. We do all of these things because we see a need, and we know we have to spread awareness.
"Again, I will do anything I can to spread awareness and more importantly acceptance about not just autism, but all developmental disabilities.
"I challenge you to do the same thing."
I want to challenge all tht are reading this to do the same.

There Goes My Hero

Pervasive Parenting
By Kodey Toney
There Goes My Hero
Last week I had the privilege to speak with a group of educators at the Tommy Spear Middle School in Sallisaw. Anytime I get the chance to spread autism awareness I jump at it. But I wasn’t really sure what I would talk about until a friend sent me some information on a new book. I mixed this with another informative piece that I’ve read in the past, and I thought I would share both this week.
I got a message earlier in the week about a new book that was recently released. I found it interesting and decided to download the sample on iBooks. I read the introduction and felt immediately that I had to read the rest of the book, which I’m working on now.
“The Reason I Jump” is a book that was written by a teen who was diagnosed with autism. He wrote it to express what he feeling. The book was translated in English by David Mitchell who brought the story to the United States. I have yet to get into the main story, but I can tell you the introduction had some interesting insight into what it is like just sitting in a room for a child on the spectrum. You have to keep in mind that they are constantly on sensory overload. They cannot filter out things like the whistling of air coming from vents or the smells from a Scentsy pot.
I used the following excerpt, which I paraphrased and added some other information I had found in the past, to give the teachers an idea of how difficult it is just to sit in the room, let alone try to concentrate on reading, writing, and arithmetic.
“Imagine a room where twenty radios all tuned to different stations are blaring out voices and music. The radios have no off switches or volume controls. The lights are constantly flickering in your eyes. Relief will come only when you are too exhausted to stay awake. Colors and patterns are pouring in from all directions. They swim and clamor for your attention. The fabric softener in your shirt smells as strong as air freshener fired up your nostrils. Your jeans feel like steel wool. The floor keeps tilting like a ferry in heavy seas and you’re not sure where your hands and feet are in relation to the rest of you. You can actually feel the plates of your skull, and your head feels like it’s trapped inside a motorcycle helmet three sized too small. The air conditioning is as deafening as an electric drill. The person in front of you sounds like they are speaking into a cellphone, on a train going through lots of tunnels.”
This is life for a child on the spectrum each day. Can you understand, if only a small amount, the pain that they endure? This is why Konner is a hero to me.
I added to this discussion the “Ten Things Your Student With Autism Wishes You Knew” by Ellen Notbahm. I’ve written about his in the past, but I added some information about Konner so that maybe they could relate to the information, I will add the following link so everyone can look at ten things: http://www.ellennotbohm.com/article-archive/ten-things-your-student-with-autism-wishes-you-knew/.
In conclusion, if you want me to speak to your group, club, organization, or business I would be happy to give a presentation. I can gear the discussion toward anything related to autism, and would offer this for free. Just contact me on Facebook, or email pervasiveparenting@hotmail.com.
I hope that this can give everyone a small insight into the issues a child on the spectrum is coping with day in and day out.

I Put A Spell On You

Pervasive Parenting
By Kodey Toney
I Put A Spell On You
Halloween is upon us again, and I always write some tips for parents dealing with autism during this season. I had a picture sent to me recently that had some good advice, not just for children with autism, but other disabilities and for the others in the neighborhood who hand out the confections to the kids. I thought that I would share it with you.
The first one says: “The child who is grabbing more than one piece of candy may have poor fine motor skills.” Don’t forget that reaching into a bag full of goodies can be challenge for a child who can’t grip a pencil right, or grasp a spoon just right. Don’t scold them for having too many items. ...
“The child who takes forever to pick out one piece of candy may have motor planning issues.” It takes Konner a few seconds to process information when it is presented to him. Have patience with children. It may take them a little longer to decide, first what they are supposed to be doing, and then what they want.
“The child who does not say trick or treat may be non-verbal.” If they can’t talk you can’t hold that against them. They are not being rude, just being themselves.
“The child who looks disappointed when they see your bowl might have an allergy or be diabetic.” It’s always a good idea to have some alternatives for children with either of these issues. Some parents won’t even let their children go out on Halloween because of this. It’s a good idea to think about the allergies when picking out goodies ahead of time.
“The child who isn’t wearing a costume at all might have a sensory issue (SPD) or autism.” If underwear have teeth, then a costume with lights, lots of plastic, and a mask could feel like hooks digging into their skin and face. Don’t shun a child, or become rude if they are not wearing anything. An idea for a parent may be just to put a festive shirt on instead. Something that says Happy Halloween, or just boo.
These are just a couple ideas. Be nice and be patient.
Don’t forget that Halloween is supposed to be a fun time of year for all children. Those with social and sensory issues can have a hard time with all of the mingling involved in going from house to house and talking to strangers. Please don’t make it a spooky time for them.

In The Long Run

Pervasive Parenting
By Kodey Toney
In The Long Run
I had a question from a parent last week that really made me start thinking about something. Often times when we’re working to advocate for our child with special needs we forget the overall picture, which is to get what is best for the child.
The parent was working really hard to keep her child in a mainstream classroom, and he was starting to fall behind academically. He wasn’t performing the way that she, and the teachers, felt he could in the classroom. So I asked, with help from my wife, whether or not there were any modifications in the classroom to help. Apparently he was stemming and beginning to be frustrated.
She told me that there were no modifications because they were trying to keep him as mainstream as possible. They were really trying not to single him out from others.
I completely understand when you don’t want your child to be treated much different from any other child. The main focus is to have your child be as “normal” as possible and be like others. I’ve talked about this before, and won’t even go into the “normal” lecture, but you can look that up on my blog page. What I will say is this; don’t forget that our overall goal for our children is to have them do their best. As a scout master for Cub Scouts, I know this is their motto, and I think we need to instill this mindset in all children, but especially those with disabilities. We have to give them these tools to do their best. When we try to make them mainstream and tell them to be the cookie-cutter child that they will probably never be, we’re almost setting them up for failure. That’s not to say that we shouldn’t strive for some of these things. We should push for our child to be good in the classroom and to perform well. However, we have to remember that we also want them to learn in the classroom.
The main part of mainstreaming is for the social aspects. I’ve always said that we want Konner to be in the classroom because he’s smart enough to do the work, but we really want him to be in there with his peers. Otherwise he could end up like a loner and a recluse.
When that becomes a struggle on the cognitive side with his school work, that’s when we need to look at pulling him back a little bit and say, “Hey, you need to focus more on the work.” Konner can do the work in the classroom, but when his performance begins to struggle then we need to ask ourselves if we are doing the right thing by keeping him in there all the time. We also need to ask if we need to modify and give him some help, or those aforementioned tools to succeed.
We’re often times focused on the fight. This works for both sides. Us as parents are fighting for the child to be in the mainstream, while, not always, but many times the school is working to put the child in a classroom away from the mainstream.
We need to forget about the fight sometimes if that fight is going to affect the cognitive, educational, and academic part of the child’s life. If the child is not performing up to par in the classroom then we need to look at modifications. We need to get some help one way or another. That can be in a resource room, a special education teacher, and aide or any way we can. We need to get the child back up to the academic level that they are supposed to be performing at, or close, and then we can work again on the social aspect within the classroom. Again, the mainstream is about socializing.
Don’t be a hindrance to your child because you want your child to be in the classroom all the time. Make sure that you are doing what is right and best for them. You may be thinking that you’re doing that, but you need to step back sometimes. You need to ask yourself, “Is this what is going to help him in the long run?”

Simply The Best

Pervasive Parenting
By Kodey Toney
Simply The Best
I’ve been told multiple times in my life that God chose me to be the father of a child with autism because he knew I would be good. As I’ve said before I’m not sure that is true or not. What I do know is that it takes a team to raise him. Recently one member of our team was recognized for her diligent work with Konner, and other children.
You see when Konner started first grade we were having some trouble with him staying in a mainstream classroom. He had been through several aides (paraprofessionals) through the years, and while they were good to him, it wasn’t until Mindy Hale began working with him that we found an aide that was good for him. The difference is that some people know how to work with a child with special needs, and some know how to change lives.
Mindy has been a mainstay in Konner’s life and ours. She has made it to where he can be in a mainstream classroom, and we don’t have to worry about whether he’s struggling, or going to have a bad day. Don’t get me wrong, he still has those, but Mindy helps curve them and keep him on track.
Mindy was named the Oklahoma Department of Education’s Staff Educator of the Month for September. My wife had put her name in, not just because of her work with Konner, but her dedication to all students at the school.
The statement she sent in said: “Mindy Hale has changed my son’s life. He has Autism. He struggled from pre-K until the middle of 1st when she began to help. Prior, he was suspended several times because no one understood why he was acting out. He was moved into a special room for half a day. Mindy employed strategies to help him, including a visual schedule, a reward board and duration boxes. She helped him stay in the cafeteria at lunch, which was a problem. He is now in a regular classroom with typical peers. He is above grade level in reading and math. I no longer worry if he will be okay at school thanks to Mindy.”
Konner wasn’t the first student that Mindy to worked with as a paraprofessional. She had worked with Hunter Remy, the daughter of Diana Waldridge, and helped her in so many ways. Hunter has a diagnosis of Cryduchat Syndrome. One of the main things that she did was help Hunter walk across the stage at her kindergarten graduation. This is an event that Waldridge said was, “One of the proudest moments of my life, and Mindy was a great part of making that day come true.”
Of course it wasn’t the act of merely putting one foot in front of the other. It was everything leading up to getting that diploma that Mindy assisted Hunter with achieving.
Diana said, “I just want to say congratulations to Mindy. Also thank you for taking that extra step. Without people like you my daughter wouldn't get to be where she is today. I remember asking Mindy to be Hunter’s aide at head-start because she had been there so much for me with her taking her to therapy at the Kistler Center. I knew then that she had a calling for her in this line of work because she just had a way of being able to handle things with Hunter. I know she‘s just doing her job but she's also doing it with her heart. Thank you so much for being the person you are, and for being a great friend.”
We often forget about the support staff at schools. They blend into the background, work some of the toughest jobs, do the things that most teachers would probably not do, and make a fraction of the pay (that’s saying something when you look at what teachers make).
Mindy is more than just support staff though. She is Konner’s mentor, disciplinarian, focus, strength, calming-stem, guidance counselor, consoler, parent-proxy, educator, friend, and at times savior. She makes it possible for Konner to be as close to the other children as possible. She knows his quirks, which buttons to push, when he’s pushing other people’s buttons, when he’s about to meltdown, when he’s just being a kid, and when he needs time to himself. She makes it possible for the teacher to teach without having to redirect Konner constantly.
When presented with this award, Mindy said, “Thanks! What can I say, I love what I do, and not many people can say that. God has me right where he wants me. Thanks Jen and everyone else. I am really at a loss for words with everything. I just do what I love and helping a child that I work with or any child around is reward enough. I wish I could do more for them.”
I wish all educators had this mentality. Our world would be a much better place.
Thanks Mindy!

Bring It On Home To Me

Pervasive Parenting
By Kodey Toney
Bring It On Home To Me
One of the biggest questions I get is, “What resources are available in this area? What do you have in this rural area that will help us with raising a child on the spectrum?” There are limited resources. There are several big conferences that you can go to in either Oklahoma City or Tulsa, but you have to make the 2-3 hour drive to get there.
That is why I’m extremely excited to finally announce that a conference for anyone interested in children with developmental disabilities is coming to our own backyard of Eastern Oklahoma. This will be something that I encourage any family member, teacher, therapist, professional, or just any to attend this free symposium.
The Oklahoma Family Network, who I have discussed in the past, will be hosting this event. They are a great organization dedicated to helping families in the state find resources and ways to better raise children with disabilities.
This conference will be held on a weekend to help with the busy schedule of most families who tend to be worn thin during the week. It will be Saturday, Oct. 26 at Carl Albert State College in Sallisaw. This is going to be in the JT and Mary Jo Stites Multipurpose Student Center.
I’d like to see the placed packed. This conference will be full of great information and will be a good place to network.
You must register ahead of time by visiting the website http://ofneasternokregionalinstitute.eventbrite.com/. Don’t forget, registration is absolutely FREE! Registration deadline is Tuesday, October 22 and space is limited.
There will also be a boxed lunch provided, but it is not guaranteed if you register after the dealine.
On the day of the event, check-in will be from 9-9:30 a.m. and include coffee and snacks.
The conference begins at 9:30 a.m. and last until 2 p.m. This will be a day packed with great guest speakers.
Examples (from OFN) include: “The Importance of Family Leadership and How to Get Connected” – You will learn why effective family leadership and building relationships with other families and professionals can make a difference in the life of your loved ones with special needs and how you can ensure that they are receiving the services they need.
“Your Experience is Important – Learn to Share on Boards & Committees” – Have you ever asked yourself, “Am I ready to serve on a board or committee?” In this session you will learn the basics about the different types of boards and committees, the “dos” and “don’ts” of serving and more importantly, why your voice of experience is needed.
“Telling Your Story Specific to Your Audience” – Do you have an important meeting coming up? Maybe it’s an IEP meeting or an appointment with your loved one’s doctor, or an agency case manager. This session is designed to help you organize and share personal information in a format that promotes awareness about your family member so that he or she is receiving the services that best meet his or her needs.
“Building Relationships with Policy Makers” – Whether it is your loved one’s principal or a legislator, building relationships takes time. The presenters will talk about the importance of getting to know the people who have the power to make and change policy at the local and state level.
Information about resources from around the state will also be provided.
For more information, you can contact Doris Erhart at doris-erhart@oklahomafamilynetwork.org or call 405-271-5072 or 877-871-5072. You can also contact me and I would be glad to help you get signed up.
Mark your calendars now please, and come join other family leaders for these exciting sessions

Sunday, September 15, 2013

Maybe I'm Amazed


Pervasive Parenting

By Kodey Toney

Maybe I’m Amazed

I had a long discussion with Konner this weekend. While I have many long discussions with him they usually are about Thomas trains, track dimension, Minecraft issues, zombies, or something else that interests him, but I have no idea what they really are all about. I wish I could tell you that this conversation was different, but it really just ended up with the same subjects.

However, I was reading an article on Facebook about people on the spectrum and how their brains work differently than neurotypical people. Since Konner was sitting next to me I decided to ask him what he thought about the situation.

I said, “Have you ever heard of Autism?” I knew he had because we have discussed it before.

He replied, “Yes daddy.”
I said, “Do we know anyone who has autism?”

He said, “I don’t know.”

So I explain to him, though I’ve explained several times, that he does and that it causes his brain to work differently than others.

I then asked, “Does it take you a little while to think about questions when I ask them?”

He said yes and so I tried to explain why.  I went on to ask him other autism related questions just to see what he thought.

I asked, “Do you play with people at school or stay to yourself?” He said he stays to himself, but sometimes plays with others.

I then asked, “Do you want other kids to play with you or do you want to be left alone?”

He said, “I want other kids to play with me most of the time, but sometimes I just want to be left alone.”

I figure this stands to reason. I just want to be left alone sometimes too, and if he is overstimulated he probably doesn’t want anyone to bother him.

It was at this point that the conversation fell off on his end. I would ask him if the other kids made fun of him or if they were nice to him.

He said, “They are nice to me…did you know that Thomas and Percy are medium gauge engines…”

So I tried to steer the conversation back on track and said, “Do the kids make fun of you or are they nice to you?”

He said, “They don’t make fun of me…did you know that on Misty Island Rescue…”

He, like many children on the spectrum only want to talk about things that they are interested in, and when they are interested in them. He will go days without saying anything to anyone unless he is asked a question, and then spend an hour talking about a certain train or part of a movie that he watched. He will keep talking even if you have a conversation with someone else.

He tends to repeat the same conversations over and over again. This is part of the echolalia.

Part of the thought process issue is the fact that, according to an article on the Autism Discussion Page on Facebook, and other articles I’ve read in the past, “The brain wiring for people on the spectrum (ASD) makes it difficult to look past the detail for the overall picture. It is more focused on reading the concrete details (facts). What your see and hear, is what you get. They stay more true to the details, and analyze the facts to piece together the overall picture. Hence their thought processes can be less biased (although not entirely unbiased), and more true to the facts.”

His mind amazes me in the things it can do when he wants to, but when he doesn’t you might as well forget getting anything out of him.

 

Sunday, September 1, 2013

My Baby Wrote Me A Letter

Pervasive Parenting
By Kodey & Jennifer Toney
My Baby Wrote Me A Letter
I often have parents ask me what they can do to help their teachers understand their children more. They say, “I don’t feel like they really know my child.” We all know that we have exceptional children with great traits, but that seems to get lost sometimes when people focus on their disability. This is why doing a letter to your teacher is important.
Sometimes called a one-pager, a letter to your child’s teachers, aides, and staff members is one of the greatest ways to let them know all about your child. This gives you an opportunity to tell all the good things about your child and show them off a little. It also lets the teacher know some of the things that your child likes so that they have something to talk to them about. You can also include things that may set your child off and cause irritation.
I’m going to include the letter that Jen wrote (with help from Konner) to give to his teachers last week. I hope that you can use this as a template, and I hope that you get to know Konner a little better because of this.
FIFTEEN THINGS ABOUT ME
Hi, my name is Konner and I am in your class this year. I want you to know a little about me. I’m nervous to be in your class because it’s new and I don’t know what to expect. I need some time to adjust and then I will feel comfortable. Please don’t judge me on my first few weeks. As the time goes by, you will be amazed by the skills you never thought I possessed. I sometimes look like I don’t understand. That’s just because I don’t have the same expressions and reactions as other people. I might not look at you when you talk but that doesn’t mean I didn’t hear you. I did. In fact I usually hear more than most people. As I become familiar with your classroom I will begin to shine. A great way to speed up this process is letting me know what to expect. Written or picture schedules for the day reduce my anxiety. A five minute warning before a change of activity can help me greatly too. You are my teacher and I look up to you. I want to succeed this year but I can’t do it without your help and most importantly, your belief in me that I can do it!
1. What is my general disposition?
I go from happy to frustrated in mere seconds, so please be patient with me and in time you will be able to read me well enough to help me keep my frustrations to a minimum.
2. What am I really, really good at?
I have a really good memory and I can mimic any sound with perfect pitch. I am really good with technology.
3. What do I absolutely LOVE doing?
I love to draw on my marker board and play on my iPad.
4. What do I absolutely HATE doing?
I hate to miss recess and lunch and MERP.
5. What academics are my strong areas?
Math, Reading, and Spelling
6. What academics do I need a lot of extra help with?
Sometimes I have trouble understanding language and I need things to be said in a different way so that I know what I am expected to do.
7. Which skills would my parents really like me to work on this year?
Social skills and inappropriate behavior
8. How do you know when I’m getting frustrated?
When I am frustrated I sometimes scream, jerk, repeat the same phrase over and over, fall in the floor, slam or throw things.
9. What can you do to calm me down before the storm hits?
Ask me if I need to take a break or go to my safe area in the classroom, take a walk, redirect me to a different task, weighted vest.
10. Too late! The storm hit! What can you do to calm me down?
Take me to an isolated area away from others and try to apply pressure by hugging tightly and wrapping in a blanket. Do not talk to me until I am calm enough to focus. When I am having a meltdown I do not understand what is going on around me or what I am doing.
11. What strategies work really well to get me to do something I don’t want to do?
Reward Board, Nerds, iPad time, marker board time
12. What typically makes me laugh?
Loud noises
13. What consequences back-fire and don’t give the desired results?
Yelling at me, corporal punishment
14. I don’t like consequences, but which consequences work well for me?
Taking away my stars from my reward board, sometimes timeout from recess works
15. I would also like you to know…
I love to build things on Minecraft and I want to be a computer programmer or an engineer when I grow up. I love Thomas the Train and I talk about the different engines constantly.
This was a template that Jen found online by Jene Aviram, of Natural Learning Concepts. There is a second part to this that I will try to include next week that has an article explaining children on the spectrum to teachers. I think it goes well with the letter.
There is way more to our children than a label. They are not a tag that says, “I have a disability.” They are children like others for the most part. They just have some different attributes.

Sunday, August 25, 2013

All Shook Up


Pervasive Parenting
By Kodey Toney

All Shook Up

Last week Konner sat in class fidgeting a little. He would jerk sporadically and let out a yelp or scream every once in a while (I wasn't there, but was told so by my wife).
These are things that we have become somewhat comfortable with, and have worked with him to stop. However, when he gets over-stimulated he will do these things in frustration.
His teacher last year had some trouble getting used to it (if you can get used to that), but explained to us that for the first couple weeks or so it was something that scared her a little. She explained to me once that as she had her back to the class writing on the board, Konner would let out a loud noise and she felt like she had been shot. This is completely understandable, and yet he really can't help this impulsive nature.
Most students in Konner's grade have been with him since head start and have come to understand his disorder and the quirks that are attached. Many of them have taken him under their wing and know how to help out if he gets frustrated. For this we are blessed.
However, for many reasons, the school district had seen a huge increase in enrollment this fall. That means many new faces who have never met Konner or understand autism and the issues that come along with a neurological disorder.
So, you can imagine the surprise of the new little girl who sat in front of Konner in class last week as he began to get irritated. He started to jerk around and grunt loudly. As he did the little girl turned to see what was wrong. He continued and she felt uncomfortable. She said something to the affect, "He's kind of weird." Needless to say my wife and the counselor are going to have a meeting this week to try to explain autism to the new kids, and maybe have a refresher course for the others.
We have never tried to hide the fact that Konner has autism, but we don't try to make a big deal out if it either. However, I feel like it is something they need to know.
So, how do you explain this to children? Here are my suggestions.
Don't start with what is "wrong" or "different" with him. Always lead with positives. Tell what they can do, what they're good at, and what they like.
This is how I would begin.
"Konner is very smart. He is really good at math and reading. He is also really good at using computers and the iPad. He likes Thomas the Train, RoBlox, and Minecraft. Do any of you guys like those things?"
Then I would try to explain that everyone is different. Some people have blonde hair, some black, some brown, and some red. Some people wear glasses, some may need hearing aids, and some even need a wheel chair to move around. However we are all alike in many ways.
Konner is really good at that other stuff, but he has problems with his senses. He processes information different than most. Sometimes it takes longer for him to understand what people ask him.
Bright lights and loud noises can really bother him. Changes in the way the classroom smells or the way his tags in his clothes rub against him can feel painful to him.
When he gets uncomfortable and irritated he tends to have outbursts.

There are some good links out there to help as well.





These are just a few ways I would get started and let them ask questions. It is important for them to understand and try to help the child. You want the kids to help more than the teachers and aides. This makes them feel important, and helps your child socialize. The kids in the class will learn to accept people with disabilities, and they may just find a lifelong friend too.

Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at pervasiveparenting@hotmail.com. I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column. You can also find all columns archived at blogspot.com.

 

Sunday, August 18, 2013

End Of Summer

Pervasive Parenting

By Kodey Toney

End of Summer

As the summer comes to an end for us I want to reflect a little onKonner’s actions. He has been typical in some ways, and yet in some he hasn’t. When I say typical, I don’t mean neuro-typical, I mean Konner-typical. What we have come to expect from him over the years.

Something to understand, and most parents out there do, is that there is nothing typical in the autism world. The only thing predictable is unpredictability.

Konner has truly become obsessed with the computer and iPadthis summer. He has always had a fascination, but this summer seems to be worse than ever. If he’s not on one you can find him on the other. This is not too unusual, but the level of his obsession has increased.

Now this is a tough predicament as a parent. We try to encourage him to, and sometimes make him, do other things.The problem is, when he’s on these things he seems to be stable. By that I mean, for the most part, he is not over-stimulated. If I make him get off the device he then becomes very frustrated. Part of this is from making him get off the computer, but part of it is that the computer allows him to focus on something.

This is the very reason many experts are looking to the iPad as a device to help children with autism. On an episode of 60 Minutes I was watching recently they said that children who were given a paper with numbers on it and told to count, or point to the numbers, were typically not interested either immediately or within a minute. However, if they were doing the same task on an iPad they were more apt to be engaged.

This year Konner will have to start writing in cursive, so Jen has used that lately as a way to get him off of the electronics. He will work on it. In fact, if he’s asked he seems to want to do it. That will last for only a few minutes though; usually 10 at the most. Then he’s asking to get back on the computer.

These pieces of equipment can be very useful though. In fact there are many are being used to break the silence in children who are non-verbal. They are unlocking the secrets inside many of these children that have been quiet for so long. This is ending the frustration within them and helping the whole family.

It is also helping us all to understand autism a little more. It’s helped us know that there is more inside. My mind goes back toCarly Fleischmann who for years was relatively silent until her team found a way to allow her to speak. She has now written a book and been featured on many news shows.

This success with the technology is particularly true in younger children. I think this is attributed to a couple reasons. Children seem to take to technology faster than the older generations.Konner can do things with computers and the iPad that boggles me. They also can learn things easier at a young age. It’s said that if you try to learn a new language it’s easier at as a child. This is what they are trying to do, learn a language. If they can hear the voice say something they may be able to mimic it.

The issue with mimicking is what they are impersonating.Konner, as I’ve said in the past, likes to get on Youtube and search for things he likes such as Thomas the Train, Roblox, andMinecraft. When you do that there is no filter and people post some crazy stuff that is not appropriate for children. Konner’svocabulary has increased lately, but not the way we wanted. The worst part is that he doesn’t fully understand that the things he is saying are bad.

Don’t forget that, like anything else you try with children on the spectrum, this doesn’t work for everyone. Some children will take to it very easily, and some will not like it at all.

We can’t let our children become so attached to these devices, but we can use them to their advantage. There is a happy-medium that we are struggling to find.

Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at pervasiveparenting@hotmail.com. I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column. You can also find all columns archived at blogspot.com.