Tuesday, April 30, 2013

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.

Sunday, April 14, 2013

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. 

Monday, April 1, 2013

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.