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!