My Cup Of Tea

Pervasive Parenting

By Kodey Toney

My Cup of Tea

The Toney family decided to go on a mini-vacation. We packed up the little car and headed south to Arlington, TX for two days at Hurricane Harbor and Six Flags. All vacations are adventures, and I’ve shared many through the past two years, but I decided to share a couple little things from this one as well.

Let me just say that, for the most part, this was a pretty uneventful time in the autism world. What I mean is that Konner did really well throughout the trip and has adjusted to traveling long distances in a vehicle. This is probably because we do it so much. I know that the thought of taking a trip for a long period of time is like slamming your head into a wall, but if you do it over and over it gets better. At least for us it has.

That’s not to say there weren’t times that were bad, but overall it was good.

When we got there we spent the day at Hurricane Harbor; a water park with many attractions including slides, pools, and kids’ areas. Konner, like many with autism, love the water, so this was a great outlet for him.

After an hour or so in the wading pool areas we decided to go down the Lazy River. This is a circular canal in which the water flows in one direction and carries the swimmers around the park. We didn’t get a tube to float on at first. We just wanted to see how he would react. He loved it. The whole way around he was jumping on his tiptoes and letting the flow carry him a few feet. He was belly laughing the whole time. We returned later with a tube and it was equally as fun.

The water park was a huge hit and Konner had a blast.

The next day we went to Six Flags. Konner wasn’t feeling very well, but he soldiered on and did well; at first. As soon as we entered we found a ride that is similar to the teacup ride at Disney World. This is where you get inside a cup shaped vessel and as the ride spins you can make the rotation greater by turning a wheel in the middle.

He wanted to ride it, so we stood in line for a short while (let’s face it this is not the most popular ride in the park). While in the line he was sitting on the floor, hugging on me and Jen, and stemming. I knew that if we did this very much the day was going to be long.

Once we got on the ride though he loved it. As I’ve written before, many children on the spectrum love the feel of twirling. It works their extremities and helps their sensory issues. Konner is no exception. The more I spun the cup the more he liked it.

We tried one more ride and the wait in line was hot, grueling, and restless…and I’m sure Konner felt worse than I did.

We decided to look into one the Fast Passes that they offer to get to the front of the line fast, but after seeing a nearly $200 price tag we decided to tough it out.

However, as I wrote a year or so ago many of the parks have a guest service policy that helps people with disabilities. So I decided to put my research to work and practice what I preach. The lady that worked there was great.

I explained that my son had autism and wasn’t doing well with the crowds. She asked me how many people were in the family and I told her four including Konner. I filled out a form and they put a bracelet on him. At each ride we just went up the exit and were on the next ride going. It was a great deal.

Kudos to Six Flags, and any other park, for offering this service.It is a life saver. I highly recommend it.

So Konner used his new-found freedom to ride the teacups over and over. We would try to get him to ride other rides and he just kept gravitating toward this same ride.

When we tried to get him to ride the train, which he loves, he didn’t want to ride. I asked him several times and he kept saying no. When I asked him why he finally said that the whistle hurt his ears. We all but forced him to get on it and he really didn’t want to ride, but Kruz did, and so did the rest of us. He suffered through, but kept his ears covered the entire time.

All in all this was a good trip. That’s something I haven’t been able to say often.

My Name Is

Pervasive Parenting

By Kodey Toney

My Name Is

Konner has a program on his iPad where he can make stories, add photos, and come up with his own creative mini book. I get them occasionally because he can send them in an email for everyone to read. When he first put this app on his iPad he was taking pictures left and right and sending out stories like crazy. It’s a great outlet for his imagination.

Though I don’t receive nearly as many stories as I used to, a random narrative will show up in my inbox and be a good littletreat for me. However, as I was dropping Kruz off at my mother-in-law’s the other morning she asked me if I had seen the one he had sent recently. I told her I wasn’t sure because I get them every once in a while and tend to forget about them some (not that I don’t love them or appreciate them). When she showed me the new story it had several pictures of cats, dogs, and other animals, and in the middle was a picture of him. I’m not sure what the other pictures said, but what his said hit me in one of those ah-ha moments.

He had written, “My name is Konner, and I can do anything I want to do!”

Wow!

This goes back to a couple weeks ago when I wrote about giving a child a chance before you count them out. If a child thinks he can do anything then who are we to tell them any different?Why should we burst their bubble?

Ok, I’m not really sure of his state of mind when he wrote this. Sure, he could have just been mad at me or his mom and was saying, “I can do what I want. You’re not the boss of me.” I honestly don’t think that was the case, but let’s just say that it was his mindset. At least he’s being independent.

Why do we, as adults, tend to look at a child with a disability and assume that they are never going to make it in the real world on their own? I’m not saying that I feel this way; in fact my whole view on this has changed recently. I’m saying typically that is the consensus.

I was in an IEP meeting with a family just the other day when I was told that a child could not perform in the mainstream classroom. He is nonverbal, and has behavior issues. Theseissues stem from the lack of communication. Cognitively the child was up to par.

I had to step back and ask, “Have you given him a chance? How do you know he won’t do well?”

Sure he’s going to have struggles. Sure there are going to have to be modifications. Sure he’s not going to be quite like the other kids, at least not at first.

Were you the best bike rider when you first got on a bicycle? Did you have to have training wheels or someone hold onto the seat for you? I did.

Given the right tools, the right teachers who really care and want to help, and some structure I feel any child can do well with their own peers.

We were told the same thing about Konner when he first started school. He would not conform to the classroom. He’s not going to be able to handle it in there with everyone else.

I’m sure glad we didn’t listen to those people then. Four years into it and I’d say he’s doing pretty well. He’s not where we want him to be just yet, but he’s come a long way from where we started. That’s all we can ask for is to keep moving ahead.

Why must we continue to have this mindset? Of course there are some cases where this may be true, but until we try how do we know? We have to change this attitude.

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.

 

 

The Impossible Dream

Pervasive Parenting

By Kodey Toney

The Impossible Dream

I’ve written in the past about Dr. Patrick Schwarz. I met him in the Partners program and we were fortunate enough to be given a copy of his book From Disability to Possibility: The Power of Inclusive Classrooms. This is a great book about how everybody should be included in not just the classroom, but the communitygeneral.

I’m only a chapter into the book and there are so many cool things that I feel I should share.

The forward itself opens up with a different way of looking at things. As I’ve said in the past, one of the biggest problems with inclusion in the classroom is that teachers don’t like change. They are busy. I understand that. It’s difficult enough working under their time restraints and budgets to do what they do. So when you throw a child with needs into the mix, and expect the teacher to make special copies and work around his/her schedule it makes it that much harder.

Teacher Kylene Beers, a friend of Schwarz, wrote the forward to this book. In that section she told a story about a parent who had come to her prior to the school year and began demanding thather child have large print for everything, and everything had to be copied in black. This was the days of ditto machines which only copied in purple. She also wanted anything that she did on the overhead projector, which she seemed to use for most of her lecture, to be in black, large type. Beers explained that this would all be difficult, and the mother said, “For whom? I presume you mean it will be difficult for you. Well everyday is difficult for Ben (the child).”

You see, often times we are so caught up in our own world of troubles that we forget to think about what the day is like for those who have other struggles.

This is why, as Beers goes on to say, inclusion is as much for the teacher as it is for the student. The more we learn about these children and what they need the more versatile we can become as teachers. If we adjust for one, it could be good for two or three.

She also shared a quote that I thought was great: “The more you change the way you look at things, the more the things you look at change.” Instead of looking to the students as a burden you need to look at them as a learning tool. As teachers we often think we know more than the students, when in reality we are learning every day.

The number of students in a classroom with disabilities is increasing. Like it or not, as a teacher you will have to deal with a child eventually that has a problem. According to the American Institute of Research (per the book); the number of students identified as having learning disabilities grew 242 percent from 1979 to 1997.

As Schwarz states in the book, “We need to honor the learning opportunities that people with diverse educational needs bring forward, not just label, berate, and isolate them.”

I’ve talked in the past about the value of inclusion in the classroom. We have to allow children with diverse abilities to work, play, and interact together. Schwarz validates my thoughts in the first chapter. He says that children, not just with disabilities, need to learn from people different from them, “especially in light of the increasing cultural, social, and intellectual diversity in their own communities.”

So why is this so important? Well the obvious answer is that our children deserve it, but the long-term goal is that we can help change the way the world looks at people with disabilities. “The first step in reform is changing attitudes,” said Schwarz. If we can change the way the schools, students, and teachers look at these children then we can potentially change their lives.

Let me explain. As I’ve said before, I don’t remember students with disabilities in school. They were in another room and we didn’t interact with them. That was not because I didn’t want to; it was just not done. Schwarz says that segregation begets segregation. Once we segregate in school we think this is the way to be in the working world. Our children have to have jobs eventually.

I state a week or two ago about people saying, “You are such a saint.” Schwarz said that people who say these things didn’t have people with disabilities in their classrooms or neighborhoods.

Think about it. If we are around someone long enough we learn how to adapt to them. We learn to accept them for who they are, and it doesn’t even affect us that they may seem “different”. If we live with people with disabilities everyday then there will be no differences.

“We need to undo this prejudicial lack of education and experience by including individuals with disabilities in all walks of life, from womb to tomb,” states the book. “We need people with disabilities in our neighborhoods and communities, in our workplaces, stores, restaurants, and movie theaters. And an inclusive school community is the place to start.”

This is something to think about.

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.

 

I Won't Give Up

Pervasive Parenting

By Kodey Toney

I Won’t Give Up

Often times we look at parenthood as something we do to protect our children. I suppose that is what it’s about for the most part, but there is something about letting our children try something that helps them in the long run. We have to let them attempt things. If they don’t try we will never know if they can do it or not. Simple right? 

There is a quote that says: “It is a mistake to suppose that people succeed through success; they often succeed through failures.” This makes so much sense to me. We’ve all failed at something and have learned more from that than from our successes. 

In my last weekend of Partners in Policymaking (I graduated last weekend!) we had a panel of speakers talk about several things, but one that really hit me is a lady who spoke of getting too much help. She, an advocate with a disability, said that she served on a board and some of the people involved were trying to do most of the work for these individuals with disabilities. When it got to be too much she finally had to tell the advisors to stop. “You’re helping us too much,” she said. “Give us a chance to do it.” Her point was that the others were just there to advise and make sure that they didn’t fail. They weren’t there to do the work for them. 

How many times have we looked at our children and thought, “We’re going to do it this way, because he can’t do it the way everyone else does.” We don’t even give them a chance to fail. 

In that sense we just become enablers: “One thatenables another to achieve an end; especially: one who enables another to persist in self-destructive behavior by providing excuses or by making it possible to avoid the consequences of such behavior.” Do we really want our children to head down a self-destructive path? That’s never what we set out to do, but if we don’t allow them to figure things out for themselves we, and they, will never know their potential. 

An example of this is a recent discussion my wife and I had about Konner going to the third grade next year. The problem is that the students have to change classes for the first time. Konner, like many, doesn’t do well with transition, and the concern is that if he has to change classrooms several times then he’s not going to do very well. We were discussing whether or not we should keep him in a single classroom, or only allow him to change once during the day, etc. My question was, “Why don’t we let him do what everyone else would do? What would he do if he didn’t have a diagnosis?”

I don’t know if he can do it or not. I honestly think it isprobably going to be an issue, but if we don’t allow him to try we’re doing a several things that could affect him further down the road. First, we’re singling him out and making him different from others anyway.This of course is never what we want to do as parents.The second is that we’re showing him that we can make things easier for him. The third is that we’re counting him out before he even gets a chance. 

I think with children on the spectrum we need to do the “normal” thing until we see they can’t do it like everyone else. Then if we can modify it to help them we should. After all of the possibilities have been exhausted we can find an alternate to what they’re doing. Don’t just give up on them before they even get started. You will probably be surprised. Konner surprises me all the time. 

We have to work with them. We have to be there to help them when they don’t succeed, and praise them when they do well. 

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 atpervasiveparenting@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. 

Start Spreading The News

Pervasive Parenting

By Kodey Toney

Start Spreading the News

I was asked to speak this weekend at the “Walk a Mile in My Shoes” autism walk in Stigler. I was honored to be asked, but wasn’t sure what to talk about. I mean, what do you tell a bunch of parents who are working hard to spread autism awareness? You see the problem I tend to have is feeling that I don’t have much to share sometimes. I sometimes forget that there are parents who are just starting out as autism warriors.

So when one of the organizers said, “Many of these people around here no nothing about autism,” I thought, “Wow, how can that be?”

Confirmation of this was earlier in the week when I held a workshop at the college to spread awareness. There were more than 30 students there to listen to my presentation about the basics of autism. I would say that 70 percent of the crowd new little or nothing about the disorder.

I asked if they knew someone with autism and about 10 raised their hands. That’s about a third of the group.

I tried to explain to this audience, and the crowd at Stigler, that this was growing so rapidly that even if you or your neighbors don’t know much about it, everyone soon will.

“We have to continue to spread the word,” I said in Stigler. “We have to let others know what an issue this really is.”

I continued to explain the statistics to them. For those of you who don’t know, the Center for Disease Control recently released that 1 out of 50 now are diagnosed. That’s up 72 percent from a few years ago and up from the 1 in 88 just last year. Only five years ago it was 1 in 110, and in 1980 it was 1 in 1,000. These numbers are going to continue to rise and when they do everyone in the world will be affected.

It’s already more prominent than juvenile diabetes, childhood cancer, and pediatric aids combined, according to autism speaks.

It’s become such a part of my life I forget that not everyone is aware of this issue. I want to challenge everyone who reads this to help spread the word. If you come up to someone in conversation you may sneak in these facts.

I applaud the ladies who put on the autism walk again. They did a great job in raising more than $1,600 for the Oklahoma Autism Network. They also opened the topic of conversation to a community who is relatively new to the cause.

It’s a big deal; whether the rest of the world knows it yet or not.