It's Hard To Be A Saint

Pervasive Parenting
By Kodey Toney
It’s Hard To Be A Saint
We had a great speaker last weekend at the Partners in Policymaking class. Michael A Mayer, PhD, spoke to the class about behavior or and communication with children with disabilities. There are many points he made throughout the morning, and I will try to write about them in future columns. This week I want to share something that he talked about called Saints vs. Experts.
So many times when dealing with a child on the spectrum I hear people say things like, “Wow, you’re a saint,” or, “Man I don’t know how you do it. I couldn’t deal with that.” When I hear this I appreciate their confidence, but there are many problems with these statements.
1. I’m no saint. In fact probably far from it.
2. It’s something you only know when you are faced with it.
As a father, or a person for that matter, I’m not a saint. I make mistakes. I yell at my children. I tell them to do the wrong things. I don’t have the necessary patients that it takes to deal with children most of the time, and I don’t know all the answers so I make things up as I go. I’m no different than most. I tend to let them play on the computer or iPad more than they should. The list could go on and on, but you get the point.
What I do is work hard to give my children a good foundation. This is why I do all the research. I read books. I surf the internet for answers. I work close with my local parent support group. I take a trip to Oklahoma City one weekend every month. It is the whole reason I started this column.
That doesn’t make me a saint. It makes me a parent who wants the best for my child.
I can’t say that every parent would do that. Trust me, I’ve known many parents who have left with children who have no physical or mental disabilities. I don’t know what their issues were, but I do know that I love my children enough to work hard to be a parent. It is work. It’s very hard work. For those parents out there who are single-parents; you are closer to saints then I ever will be.
The only difference between me and those other parents who don’t’ have a child on the spectrum is that I have to do well. I have to deal with my child’s meltdowns. I have to deal with bowel problems and OCD tendencies. I have to deal with IEP meetings and delays in speech. I have to deal with these things because if I don’t I fail. If I don’t I won’t be giving my child the best life he deserves.
That is the only difference.
This was not my choice. It sometimes seems that people want to say, “Oh, god gave you this child because he knew you could handle it.” Maybe so, but it was not my choice. That may seem harsh to some, but as I’ve said in the past, I wouldn’t change Konner. I wouldn’t do anything to make him different because this is what makes him who he is as a person. But, I wouldn’t have asked for a child with autism. This is why so many people are in denial when they get the diagnosis. You never ask for it. You never think it will happen to you. When it does though, and once you get into the parenting issues and get past the shock, you realize that it’s one of the greatest things that could have happened.
It doesn’t make me a saint that my child has autism. It does make me a better parent and a better person. If Konner hadn’t been diagnosed I would still believe that people with disabilities are just poor, helpless people. I would still believe that Asperger’s was just a funny word. I would still think of those loner kids as weird. And, I would still think that parents who deal with children with disabilities are saints.
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.

Don't Question What You Know

Pervasive Parenting

By Kodey Toney

Don’t Question What You Know

Imagine with me if you will…You are sitting in your car and frantically you are trying to reach the airport before your flight leaves. You can see the airport in the distance. It’s a couple miles away to your right, but you’re not sure how to get there.

You know that you have to exit 101, but as you approach exit 101 there is a 101a, 101b, and 101c. You are in the right hand lane of a busy three-lane interstate and they all exit left. You swerve hard through traffic and make it to the exit, but as you depart the freeway you are caught in a bottleneck. You also realize that exit 101a takes you to the left side, and the airport is on the right. You see it sneaking out of your rearview.

You realize the problem and try to find a place to turn around, but there are “No U Turn” signs everywhere.

This is just a sample of the frustration that a person on the spectrum feels with simple everyday tasks.

I’m always looking for ways to understand Konner’s thought process. What makes him frustrated? What causes him to yell and scream? What causes him to lose control?

When our presenter at a recent Partners class, Michael Mayer, gave a similar analogy I felt this was a great way of looking at his vexation. Who wouldn’t feel aggravated if they were in this situation several times a day?

The smallest tasks can send Konner into a tailspin sometimes. This is because he doesn’t always understand the questions asked or tasks given to him. He has always struggled with who, what, when where, and why questions. This is something we’ve worked on, but it still bothers him. I try to restate the questions, but sometimes I get frustrated too.

An example of this was a couple days ago I asked him, “Why did you hit your brother?” He said something to the effect of, “I don’t know.” Typical right? Well the truth is he really didn’t understand the question at first. So I continued to ask, “Why did you hit your brother?” Again he said he didn’t know. This continued for a minute or two until I got frustrated. He finally said, “Dad, why do you keep asking me that?” Once I redirected my question and said, “Did Kruz do something to you?” He then told me what I wanted to hear.

It’s all about the way you ask.

Think outside the box.

Walk A Mile In My Shoes

Pervasive Parenting

By Kodey Toney

As many know this is Autism Awareness Month, and if you’re looking for something to do to help support and spread awareness the answer may be a short walk away. One local group has decided to raise awareness and funds to help support the cause in our area.

Walk A Mile In My Shoes/Autism Awareness Walk is being organized by a group of ladies from Haskell County. This is the first year for the walk, and will be held in Stigler Saturday, April 27 at Roye Park. The walk will start at 2 p.m. There is donation of $10 per family to walk. There will be ribbons and bracelets for participants. Pre-registration begins April 16th at Miss Behavin’ Children’s Boutique in Stigler.

One of the biggest things I complain about with autism is the lack of awareness, resources, and funding for rural areas such as eastern Oklahoma. This is part of the reason I started this column, have pushed to help the Parents of Autism group, and have attended the Partners in Policymaking program. I feel there is so much we can do for this area.

This is such a great idea to help with that effort, and I applaud the coordinators of this event. Ashley Fenton, Amanda Cariker Sutherland and April Lantz (along with others I’m sure) have pooled their efforts to do something to help bring that awareness to this region and support those families coping with autism.

All donations from the walk will go to AutismOklahoma.org, and those donations stay in Oklahoma. Anyone who can’t make it, but would like to donate can drop their checks off at Miss Behavin’, or contact me and I can take them the day of the event.

Everyone is encouraged to wear blue shirts.

As a side note, I was driving through Oklahoma City Friday night and noticed that Devon Tower (the tallest building downtown) was lit up in blue. Thought that was awesome. There were a couple others with a blue tint as well.

There have been several in the past few years throughout the world that show support by illuminating their structures. Some of the coolest for me include the Leaning Tower of Pisa, the CN Tower in Toronto, the Superdome in New Orleans, Florida State Capitol, CBS Headquarters in Los Angeles, the Great Pyramids in Giza, Egypt, the Sydney Opera House in Australia, Christ the Redeemer in Brazil, and Table Mountain in South Africa. There are many more beautiful pictures on the Light It Up Blue site: http://www.lightitupblue.org/Markslist/waysToLight.do?pageId=361.

I hope that all of you will attend the walk later this month. Whatever you do, do something to make sure everyone knows and understands the significance of this disorder. 

Shout It Out Loud

Pervasive Parenting

By Kodey Toney

Shout It Out Loud

April is here and so is Autism Awareness Month. Of course, as I’ve always said, everyday is autism awareness day at our house, but I want to encourage everyone to spread the word; especially this month. Put in your blue porch lights, change your profile pictures, educate yourselves and others, and wear your shirts and ribbons.

I’m amazed at how many people still know very little about autism despite the growing numbers of those diagnosed. The new numbers suggest 1 in 50 now are diagnosed. The real numbers that scare me are those who are not diagnosed. That means there are many children who are not receiving the therapies that they need, and there are parents who are still in denial.

I recently did a poll on facebook to ask what people thought of when they hear the word autism. I asked to be candid and open up because I think many people get the wrong idea if they’re not around someone on the spectrum. I’m going to share a few with you.

One “friend” said, “I can tell you when (I first found out), in my mind I thought that meant he was going to need our help for the rest of his life. That he wouldn’t be able to do things for himself. That he would pretty much be handicapped.”

A former teacher said, “(Those) that I met are so different yet they have taught me to see how unique each of them are. When I heard the word autism I thought of the term ‘uncontrollable’, but that was far from what it was. Each of these children taught me about themselves; whether it was through their actions, words touch, or even their dislikes. My experiences have been (educational). I'm so happy I got to know them. I'm excited to watch them grow up to become adults.”

My grandmother posted: “We took on the responsibility of our great granddaughter before we knew she (had autism). It was a relief to us to finally have a word attached to her problems. We had heard of autism for awhile as we have three babies affected. But (we) never had to actually deal with it ourselves until she came to us. Now we know what to expect and are learning every day how to cope. Believe me at our age it is a struggle sometimes, but her beautiful smile and sweet actions between meltdowns make it all worth it. We have always tried to never judge families with "problem children”, but this has really opened our eyes to things we may have wondered about before.” Konner’s grandma Judy wrote: “I remember the call. For a moment I cried. I suspected autism but of course didn't know for sure until the diagnosis. Knowing what was wrong was an important tool that we needed as his family to head forward in helping Konner to be the best that he could be. I'm so proud of my grandson. He is an amazing young man. I hope every parent that

finds yourself in this situation will work swiftly at getting your child the help that they so desperately need. Be their voice! Step on toes if you have to.”

My mother said, “Konner has taught me how to be calmer, how to love, how to be there when he needs us, even if he just wants to talk. He can make you cry, laugh, and hug. I love Konner with all my heart. He is a very loving and special child in more ways than anyone will ever know. I too cried and refused to believe. Then I (started to) worry. I wouldn’t (trade) him for anything in the world.”

“A mother of three girls from Spiro, one on the spectrum, said, “I was terrified when we went to the doctor and was initially discussing Emma's sudden ‘regression.’ The doctor asked me what I thought might be going on and I burst out in tears and said ‘autism!’ I was beyond terrified. I thought autism meant that I would never have a relationship with my daughter; that she and I would never be able to connect as mother and daughter, and I was fearful that I had failed her and would continue to fail her because I didn't know a lot about this disorder. It has been almost seven years since Emma was diagnosed and I am proud to say that she destroyed all of my initial preconceived notions of what autism was/is/or ever will be again. She is just like any other eight-year-old little girl. She has her own personality. She has a mind of her own. She knows what she wants and how to get it. She is not ‘dumb.’ In fact, she is quite intelligent. What I'm trying to say is that she is an eight-year-old kid. Period! Yeah, she has quirks and "issues" because of Autism and she has challenges still to overcome, but don't we all in some way, shape, or form? I just want EVERYONE to not be afraid of these kiddos or the challenges that may come along with them, give them a chance. They will most likely melt your heart and change your life in a way you never thought possible. Autism is not a scary thing anymore for me. Granted, we've been immersed in Autism for almost seven years now. What's scary now is how others react when you say you have a child with Autism. Don't pity me or my daughter. Look at her and see how far we've come, I promise, it will amaze you.”

One woman responded: “I have worked in daycares with (children with autism) before. I've learned that you just need a different approach with them than other children. I also learned that (these) children are also very smart.”

“My first thought is that autism means, here is a person who processes sensory info somewhat differently than I do, and uniquely to other (people with autism),” said one person.

Another stated, “Unfortunately special because even thou God made them that way they still have a chance to live life. I have a niece that is special and she never ceases to amaze me.”

“Special. One with special abilities and needs,” said another.

One frustrated parent posted, “Just wish God had given us a handbook .Love him so much very interesting.”

“I think quiet and withdrawn from strangers and family too, and a special child at that.”

One of my favorites, “In one word - misunderstood! From the child's perspective it must be frustrating that people don't understand ‘your’ normal. On the flipside, (there’s) the frustration of not knowing how to ‘act’ so you don't cross any lines that might trigger a reaction and feeling bad because you wouldn't do that for anything! I think we all need to be educated, knowledge about anything can be our greatest ally.”

An old friend posted, “I feel bad when I hear a child has autism mainly because of the stereotypes placed on them. Also I feel bad for the majority of ‘normal’ people who are uneducated and classify it as mental retardation when it’s a neurological disorder.”

“It wasn't what I expected,” said another. “The world makes it out to be different than what it is. I truly learned from being in children’s’ church with Konner. I (saw) a very loving and smart boy.”

I found this to be interesting. This shows many different people from different sides of the spectrum giving their thoughts. Hope this helps in some way. 

Beacon in the Night

Pervasive Parenting
By Kodey Toney
Beacon in the Night
Had a fellow “Partner” send me a link to a website that I hadn’t seen before. I decided to check it out and am glad I did. This site has some great stuff for anyone interested in learning more about autism. Parents of a child who has recently been diagnosed or a veteran to the autism world will find something they need on this site.
Autismbeacon.com is well organized and features a ton of information for people looking for help from either end of the spectrum.
On the left-hand side of the site there are user-friendly buttons to help navigate the pages. They include everything from Advocacy & Awareness, autism basics, Career Development for Educators, Therapists & Other Autism Professionals, Communication, Diet & Supplements, Employment & Vocational Support, Learning Materials, Sexuality & Relationships, Toileting & Feminine Care, and Technology. These are only a few. If there is something in particular you are looking for chances are you can find it here. Each has sub-headings to help find exactly what you’re looking for in the category of choice.
I thought I would share some things that I found most interesting.
There’s a section called Animal & Autism which includes some great articles on animals and their relation to the disorder. There are articles on service dogs and common pets, but the one I found most fascinating was the article on teachers using guinea pigs in the classroom. According to the article: “Children who played with guinea pigs rather than toys were more talkative, made more eye contact and displayed a more positive attitude, according to a study.” Pretty cool information.
There is a very educational section on bullying. This one deals with the growing effects of bullying on those with autism. It includes tips, laws, and recent stories about dealing with harassment.
The section Autism & the Arts seemed right up my alley. This included stories on plays about autism, acting classes helping children with autism and their social skills, art classes offered for children with autism, and others. My favorite of course was the many links to how music affects those on the spectrum. There is a particular link to the “7 Autistic Singers Who Will Blow You Away”. There are some very talented singers, some famous but most not, who are featured. All of these are inspirational and worth the watch.
Another motivating section is the one on Celebrities & Autism. This includes people who have overcome the obstacles of autism to become famous, or famous parents with children on the spectrum.
The section called Kudos includes success stories and videos. One particular is a child on the spectrum who recently joined Katy Perry on stage at the “Night of Too Many Stars” to sing Firework. There are also articles on people advocating for children with special needs and charity events.
I’ve only hit on a few of the great links and stories included on this page. This is a wonderful tool for anyone wanting to know more about autism. Please check it out.
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.

Stick To Your Guns

Pervasive Parenting
By Kodey Toney
Stick To Your Guns
The end of the school year is quickly approaching, and with that IEP season is upon us. If you are not looking forward to your Individualized Education Program I hope to give some quick facts to help you through.
I’ve written some columns in the past with more in-depth advice on dealing with IEPs (see my blog at http://pervasiveparenting.blogspot.com/). This will be just a quick refresher course. I had some help with this one from my wife, Jennifer.
The number one thing to do is have a plan. I know this sounds obvious, but as Jennifer pointed out to me, it’s kind of like car shopping. You go in with a price that you want to pay, and stick with it. There is going to be some negotiation, possibly, but you have to know what you want and be firm with that. For example; if you want your child to have modified testing times then you need to make that clear, and make sure that they don’t talk you out of it. When you walk out of the meeting make sure it’s written in the IEP.
Nobody knows your child better than you. You spend more time with them than even the teacher and students. You have figured out what makes your child tick. Let them know why you want it, and then don’t back down.
Don’t forget it’s a group effort though. They call it a team for a reason. You have to work together to get what is best for your child. Don’t forget that this is why you are ultimately there. Don’t let pride, stubbornness, or vindication get in the way.
Remember the golden rule. You wouldn’t want anyone else questioning your abilities to be a parent, don’t question their ability to teach. I’ve found that if you discuss why you want something, and talk to the team in a civilized manner you will get more out of the meeting. The “more flies with honey” approach.
Know the laws. I know this one is difficult, but if you don’t know what you can and can’t have then you will never know what to ask for. There are a couple places to find this information. Wrightslaw.com is a great site to help with many of the legal issues you will come across. They have advice and resources to assist with finding the laws that govern special education. The following web address formt he Oklahoma Department of Education (http://ok.gov/sde/parent-and-family-resource-page) will help with resources for Oklahoma residents in coping with special education. The last place I will mention is the Oklahoma Disabilities Law Center (http://oklahomadisabilitylaw.org/). This group can help with all kinds of disability rights. Research each site if you have any questions, and don’t hesitate to contact them if you don’t find the answer online.
Don’t sign if you aren’t satisfied. You never have to sign the IEP until you have everything that you want included inside. If the wording is not right, don’t sign. If it’s not exactly the way you wanted it, don’t sign. One thing to be cautious of is that they haven’t written something inside. If they say, “We’ll add that in later when we type it up,” don’t sign. I’m not trying to say that the educators are trying to sneak out of providing a service. What happens is that these people are human. They are very busy, and you are one of many on their case load. If they don’t write it down in the IEP right then, it may be a day or two before they actually type this up for their file. At that time they could have, and probably have, forgotten all that was supposed to be added. Ask for it to be written in now and typed in later. If it’s not, don’t sign.
Remember though, if you don’t sign they don’t have to provide services.
The last thing I’m going to say is, don’t take no for an answer. I know this seems harsh, but if they say, “We don’t have the funds,” they have to find them; or at least give it a good shot. If it is something reasonable, and necessary for your child’s education they have to provide it as long as it is feasible.
If you have any questions about IEPs and what you may or may not be able to get for your child please feel free to contact me. If I don’t know the answer I will find someone who does.
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.

Moon Dance

Moon dance

Last week I talked about a book I was reading for the Partners in Policymaking class. It was one of two that I was assigned. The second was A Smile as big as the Moon by Mike Kersjes, with Joe Layden. Just like The Short Bus this one was full of great lessons and information that I felt I should share.

Kersjes was a high school football coach who doubled as a special education teacher. He eventually led a misfit band of students in the special education program to become the first group with disabilities to attend the Space Camp program in Huntsville, Al. The process to mature these students into potential astronauts led to many great moments, as often times the teacher became the student.

This story showed me what I suspected all along; the goals for students with disabilities are limitless if someone fights hard enough and believes in them. They all just needed a little encouragement and eventually freedom to perform on their own.

Without telling the entire story I'm going to give some of the highlights of the account from a parent's perspective.

One of Kersjes' favorite quotes in the book was from Albert Einstein which read: "Imagination is more important than knowledge, for knowledge is limited and imagination can encircle the world."
What a great thought. Often, children on the spectrum, or with other disabilities for that matter, are limited by their IQ. They are seen for the number on a piece of paper. In our schools we have become so reliant upon those numbers that we forget to see what lies deeper within a child's mind. The one point that is drilled home in this book is that children with disabilities have other strengths to compliment their weaknesses.
One student was a great artist, the other was really good at putting together models, and another was a good public speaker. The challenge is not finding away to "fix" their issues, but to unlock their other assets.

Kersjes made sure the students understood where he stood on this subject by pointing out the quote every year and stating, "I don't care about your IQ. I don't care about your standardized test scores. We're all equal here, and we're all going to work together, and imagination is going to play an important role in how well you do." If only all education professionals felt this way.

When fighting to get his children into the Space Camp program, which is sponsored by NASA, he listened to a keynote speaker, whom later he would have to convince to allow his children into the camp.
The speaker stated that he: "...hoped to improve NASA's education program for all mankind." Kersjes explained that he hoped "mankind" included children with special needs. "After all, he said 'mankind'. He hadn't said 'for all brilliant people', or 'all geniuses'."
Kersjes used this in his favor when talking with the lecturer. This was a great example of the equal rights that I have been talking about lately.

Of course Kersjes' idea of a genius was questioned later in the book when a fellow coach asked him his definition of the word. He stated, "A genius is someone who is very intellectual, very smart, gets a grasp of things quickly." The other coach says, "A genius is someone who takes something that's complicated and makes it simple."

In context of trying to teach children with learning disabilities how to understand rocket science this is a great statement. However, this is what I feel should be addressed everyday in classrooms. We have to adjust our way of thinking to accommodate others' style of learning.

There is a point toward the end of the book where the group is at Space Camp and has an argument among themselves.
As one student storms out the door, Kersjes decides to go after him. Two of the other boys stop him and say to him, in a very calm manner, "Coach, we don't need you anymore." This was not said in a hurtful way. It was actually to explain that they were at a point in the process where they had been trained enough, and had become such a close team that they didn't need the coach to settle their disputes.

I've always explained that this is the way that I feel about having an aide in the classroom. This is the way it's supposed to be in life. You teach your children well enough that they don't need you anymore. They are comfortable enough in the classroom that they don't need the aide anymore. It's bitter-sweet, but a great moment when it's all said and done.

I won't give anymore of the story away, but I will say that the team was successful. The group matured from a combative group of eccentrics into a close-knit team.

I recommend this book to parents, teachers, and especially special education teachers. It will open your mind to the potential of children with disabilities.