Saturday, February 21, 2015

Let's Work Together

Pervasive Parenting 
By Kodey Toney

Let's Work Together 

I remember it was either 1998 or '99 and I was a young journalist with the Poteau Daily News. I have always been a bit of a trivia junkie, so when they asked if I wanted to be on a team for the Special Olympics' Trivia Night I jumped at the chance. This was the first year for the event, the theme was Hawaiian, and we won. It was one fun night, and I will probably remember it for the rest of my life. 
I participated in a couple more, and each year was just as fun. I wasn't really thinking back then about how I was helping raise funds to help kids with disabilities. 
Fast forward about 15 years...
When the Pervasive Parenting Center board members were looking for a fund raiser last summer someone brought up the Trivia Night. Two of the board members had been involved in the past and knew that the Special Olympics had abandoned the event recently. We contacted Special Olympics and asked if they would mind is taking over. It was agreed and we decided on March 7th as a date. We made arrangements to hold the event at the Community State Bank, who have been gracious in helping us out.
It came as a surprise when we started advertising that the Special Olympics group in Poteau have a bingo night scheduled that night. It was never intentional to schedule these two together. We would never do anything to take away from the Special Olympics. We both are working for the same purpose, to help people with disabilities.
This is why I'm asking everyone to help out. I know that trivia is not for everyone, just like I know that bingo is not for everyone. I would ask you to pick one you like though and attend that night. It's not as much about the organization as it is the overall purpose, to help others. 
Special Olympics will be holding their event at the Bob Lee Kidd Civic Center beginning at 5:30 p.m. It will be a carnival style bingo. The funds will go to help with experiences for the athletes to attend several events throughout the year. For more information on this event you can contact Tanna Weaver at (918) 647-9231
The Trivia night will be held at the Community State Bank in Poteau. The registration will begin at 6 p.m., and the game begins at 7 p.m. Teams of 6-10 members will cost $100 to enter. There will be a Zombie Apocalypse theme, and teams will not only be competing for a trivia trophy, but also best dressed. There will be a prize for best dressed individual as well. 
The funds raised will be used to help families in eastern Oklahoma including LeFlore, Sequoyah, and Haskell Counties. 
If you are interested in entering a team you can get a registration form at the Poteau Daily News or Clip Joint in Poteau, or Carl Albert State College in Sallisaw. You can contact me at ktoney@pervasiveparentingcenter.orgor (918) 658-5076.
Either direction you go I hope you will decide to help out one of these great programs. I feel like we are working for the same purpose.

Early Morning Riser

Pervasive Parenting
By Kodey Toney
 
Early Morning Riser
 
I talked last week about Konner waking up at the same time each day. That's only partially true. He wakes up about the same time, and lately it's been even earlier. 
As stated time after time, children on the spectrum are usually on a schedule or routine. Konner is no different, but lately it seems that he's waking up even earlier than usual. 
Lately he's been getting up around 4:30 every morning. This in itself is bad, but Konner also likes to come into the bedroom and tell us that he's awake and ask us if he can go play on the computer. I rarely have a problem with him playing on the computer, so I'm not really sure why he asks every morning. In my mind he does it to make sure that we're awake. Let me make something else clear, Konner is not a quiet person, especially at 4:30 in the morning.
With his ADHD, and the meds have worn off at this point, he's usually jumping around on his tiptoes flailing his arms saying, “Daddy, daddy can I go play on the computer…can I play on the computer!”
Now I'm not a morning person anyways, so this just drives me crazy most mornings. Depending on what morning it is I'll tell him either to go try to go back to sleep or just go get on the computer. Sometimes it's easier to let him than to have him come back every five minutes and ask again and again and again and…well you get the point.
I tried to explain to him that on the weekends we like to sleep in a little bit. In all honestly we haven't been able to sleep in since he was born almost 10 years ago. However, this Sunday he came in it was 4:30 in morning and he said, “Daddy can I play on the computer,” very loudly. “I replied very quietly and with a little frustration, “Konner, we're trying to sleep. Please be quiet. He said, “Daddy, I know you guys like to sleep in on Saturday.” I had to laugh a little bit and tell him to go ahead and get on the computer. He had his days mixed up, but he was trying to understand that others need to sleep. I’m not sure why he doesn’t.
He also comes back in every 15 minutes or so to let me know what’s going on within the game he’s playing. So when he’s awake I’m awake. I may try to go back to sleep, but I can’t.
The problem with all his early-mornings is that he wants to go to sleep early now. Instead of his regular 8 p.m. shower and then bed and go to sleep he goes and lays down at 7 p.m. and he may go to sleep without a shower. I've been trying to keep him awake at night thinking maybe it would help him get up a little later too. So far that hasn't worked.
As I said last week, it helps with getting ready for school during the week.
All of this is part of the reason that I've been getting up on Sunday mornings and sitting at the kitchen table, which is just off from the computer room, drinking my coffee and listening to him on the computer it's not the worst problem in the world. And sometimes it has it's perks.

Sunday, February 8, 2015

Easy Like Sunday Morning

Pervasive Parenting

By Kodey Toney

Easy Like Sunday Morning

So often with kids on the spectrum we tend to focus on the negative issues and forget about the positives. I know that sometimes it may seem like there aren't any positives, but you have to look past the issues to get to the good stuff. I hope to explain this a little bit more in this week’s article.
I was thinking about this as I was trying to get the boys ready for school this morning. In the past couple weeks we've had a lot of trouble with Kruz getting up and get his clothes on even though I have everything laid out and ready to go. I want to explain how much easier it is sometimes with Konner. This may not be true for all children on the spectrum.
As I've said before we're all creatures of habit. It's just human nature. That's why it's so hard to break habits. Once we get in the routine we don't want to get out. That being said, children on the spectrum are all about routine. We know this and that's why if you change up anything the entire balance of the world seems to be completely out of whack. 
This may seem like a bad thing, but sometimes it can be a blessing in disguise. For instance, Konner gets up every morning about the same time. Now this could be bad if you're trying to sleep in, but on schooldays it works out well. You see he’s usually before the rest of us, has eaten, and is either playing on his iPad or the computer. All I have to do is lay his clothes out and tell him to get dressed. I may have to redirect him a couple times, but then he's ready to go get his medicine and fix his hair. Then he's ready before I am.

It's Kruz that I have to fight with every morning just to get him out of bed, and then get him in the living room, and then get his pants on, and then get a shirt on, and then get his socks on…well, you get the point.
It’s the same every night. Konner gets in the shower at the same time. When he gets out he knows it's time to get ready for bed, and he'll usually go crawl in bed by himself. 
With Kruz it's completely different. We have to fight just to get him in the bath tub. Then we have to fight to have him get dressed, to dry off, to go to bed. It seems like everything is a constant fight with him.
I don't want to seem like I'm picking on Kruz because I love the little guy, and he makes our life pretty interesting. I just want to use that as a contrast to what we deal with in Konner. He’s pretty easy-going most of the time. You just have to stick with the routine. Don't change things up. Don't frustrate him and you won’t have very many problems. 
As I said I know this is not true for all children on the spectrum but I think it is for most.

Room To Grow

Pervasive Parenting
By Kodey Toney
Room to Grow
I just got off the phone with a parent seeking advice for her son’s Individualized Education Program (IEP). I felt the information was interesting, so I’d like to share a little bit with you.
She was telling me that she was going to work with the school on possibly changing her son’s IEP, but has some questions. Her son has in the IEP that states he should be pulled to see the special education teacher if the classroom teacher feels that it is necessary. The child seems to be falling behind in some of his classwork and the parent is concerned.
The first thing I would want parents to understand is that the IEP is a specific “contract” with the school. What is in that IEP has to be followed, however you must be careful how things are worded. If the IEP says that the teacher can send the child when she feels it is necessary then she doesn’t have to send the child at all. However, if it states that the child should be sent twice a week to work on something specific such as math or reading then the teacher and special education teach must send the child.
This parent didn’t do this, but I have seen so many times that parents don’t want their child to go to the resource room, or special education room because they are afraid of what people will think of their child. They don’t want their child labeled as “special education”. One case I can think of is that a child was having medical issues that caused them to have seizures. The parent wanted the teacher to know this in case of an episode, but didn’t want to put the child on a 504 (which is helpful for children with medical issues) because she would have to do that with the special education teacher and didn’t want everyone knowing what was going on with the child or the child to be labeled “special education”. The problem is that the child isn’t with the child all the time. The gym teacher, playground teacher, and anyone else that comes into contact with that child should know about their diagnosis so that they can help in case of an emergency. Don’t forget that your child’s safety, education, and future are more important than your so-called label that you might find embarrassing.
The reason to have the child in the resource room is more one-on-one time. Specific instruction is very good for any child, but especially for a child on the spectrum.
If the child is telling you that your child doesn’t need this…but does need this, you need to make sure that everyone is on the same page. If you don’t think what they are saying is right I would encourage you to do a couple things. The first is to do your research. Make sure that you look things up, on a credible site, and check multiple sites. There are many places out there to look up classroom information for children on the spectrum. You can check the Pervasive Parenting Center’s website at www.pervasiveparentingcenter.org for links to resources.
If you still have questions contact other families that have been through the same or similar things. This is where support groups and resources come in handy. The Pervasive Parenting Center support group meets every third Thursday. Again, you can check the website for dates, or contact me for more information. These are good places to vent and share information. The Oklahoma Parent Center and Oklahoma Family Network are also good resources for this.
Don’t forget that nobody knows your child better than you. You spend more time with them and know what is best most of the time.
Don’t let them talk you into anything that you feel uncomfortable about. If it seems like a bad idea then don’t do it. Do what is best for the child.

Say It Loud

Pervasive Parenting

By Kodey Toney

Say It Loud

I would like to talk a little bit more this week about Konner’s vocalization. Last week I wrote about how he was talking to the computer and how that is a form of socializing. One of the main things that tend to define a child with autism of course is the lack of social skills and verbal communication issues. I want to talk a little bit about a couple of things that occur typically in children on the spectrum. 

One of the main things is that if they are verbal they will usually talk at someone as opposed to talking to them. For example, Konner will talk all day long about Thomas the Train, Roblox, or Minecraft, but if you want to ask him about how his day was he usually gives short answer like, “It was okay, It was good,” or just, “Fine.” If he's in the middle of a conversation and you try to change the subject he may veer off for a split second, but then he's going to go right back to the initial conversation. For instance, if he was talking about Roblox and he said, “I built a Thomas today on Roblox, and he was going to Napford Station, and he was talking to Gordon, and Gordon ran off the tracks,” and then I interrupt with, “Konner how was your day today?” He would say, “Fine…but then Harvey came along to fix the tracks, and then Gordon took off…” and he would never even skip a beat.
I try not to discourage any kind of communication. I must be honest though, while I am extremely proud and happy that he can talk, sometimes the ongoing conversations about these things tend to be a little boring and I lose interest. However, I try to never let him know. If I’m doing something else and he comes in the room I may be listening to the side and just say, “Uh Huh…yes…that's interesting…that’s cool Buddy.” You’ve got to understand that after about 20 minutes it starts to get a little crazy, especially when he’s just repeating most of it. Of course my wife would probably tell you that this is the way I listen to her.
I do try to ask questions here and there so that he does understand that I am trying to listen. It's just a way to help him with the socializing skills. Every once in a while you may jump in and say, “Hey you know a lot of people may want to talk about something different,” or explain the situation to him in case he needs to use it in a situation outside of the home.

I've talked about echolalia before, but this is another issue for children on the spectrum. I think it is worth revisiting. Echolalia is a tendency to repeat things constantly. Most children will repeat things, but for a child on the spectrum sometimes that repetition can go on for days and even weeks. They will pick a favorite phrase or saying, something that they watched on TV or heard on the radio, and they will constantly repeat it over and over and over and over and over and over and…well you get the point. While this is annoying it also can be disastrous depending on what they are trying to repeat. This is why we try to filter what Konner watches, and listens to. His most recent repetition involves a little saying and then at the end of it is a squeal/scream. It's like nails on a chalkboard. One thing that we have is explain to him, “Okay Konner you can do this one more time and then we're done.” Typically this works. Not every time, but most of the time. This may be worth trying if you have a child that is doing the same thing. 
Any parent with the child that is nonverbal will tell you what I'm about to tell you. Any talking is good. Yes it may get to be old. Yes in may get to be annoying, but you should encourage it. You should help them use it as a learning experience teaching social skills as much as you can.

Roll With It

Pervasive Parenting

By Kodey Toney

Roll With It

I was sitting in my kitchen Sunday morning drinking a cup of coffee and reflecting on the training I had just gone to for the Oklahoma Family Network when I heard a noise in the computer room. Our computer room is just off of the kitchen/living room area, and this is where Konner is most of the time. Kruz and Jen were still in bed so I just sat there and listened to Konner talk to the computer. This may seem strange to some, but to me it’s awesome.

You see, as many have read before, we were told long ago that Konner wasn’t supposed to talk. I understand now that what the specialist was saying is that many children on the spectrum are non-verbal. However, when a parent is told that their child will never talk it scares you. You question how you’re going to communicate with your child. You wonder how life is going to be from this point on. I can tell you from friends who have non-verbal children that first and foremost it’s not the end of the world. It does make life more difficult, but you find ways to adapt and communicate. You see words are not the only form of communication.

We have been fortunate that Konner is very verbal, to the point that sometimes he’s loud, but that’s just fine…most of the time.

So, when I was sitting there listening to him talk to the computer about his Thomas trains I was happy. He was also not supposed to have an imagination, but his is very much alive and vivid. He talks about Percy, Henry, Bill and Ben, Gordon and all the other characters from the television show.

He is very good on the computer and plays a game called Roblox. This apparently has a way of developing your own characters and creating scenes from the show, which Konner does very well; to the point that others have come to his Roblox site to borrow his parts and ideas.  He has created things on the Minecraft that my older nephews are amazed at sometimes.

I like the fact that he is talking to the computer. I know some would look at this as a strange problem. Maybe he has some other issues, but I see it as a way to increase social skills. Yes, I know it’s not the same as actual interaction with others, but if he can have a conversation with the characters on the screen, and he develops his own screens too, then he’s working on those skills.

I think anything that helps a child use their imagination, social skills, and increase their intelligence, especially in a technological world, it can’t be bad. I don’t want him on the computer all the time, and am as guilty as anyone at using this as a crutch to help me have a second or two of my own. Jen and I try to get him to use other means of entertainment, and he is outside a lot in the summer.

  If you can find a niche that helps them explore any of these avenues I say just run with it. Everything in moderation, but find something that they like and use it to your advantage in helping them.

I'm A Traveling Man

Pervasive Parenting 
By Kodey Toney 

I'm a Traveling Man

As I was reading through my Twitter feed today I came across a tweet by a self advocate that said, "I have a difficult time navigating this world, but if you shield me I won't have the coping skills to thrive." This reminds me of an important lesson that I think is worth revisiting. So many times I have parents say things to me like, "She needs to start school, but I'm so afraid to let her go. I know it's me and she'll be just fine, but I can't stand the thought of leaving her there."
There is nothing wrong with being a little over protective, especially with children on the spectrum. As I've said in the past, I will not apologize for doing my job as a parent. However, there does need to be a little space. 
I like the wording that this woman uses. She doesn't say that this is to survive, she says to "thrive". You see, we have to let our children have those experiences, good and bad, and then nurture them throughout to make sure they know the right and wrong. This is true for all children. It's like the first time you took the car out on your own. I'm sure your parents were freaking out, but the more you did it, the better you got, and the more natural it felt for everyone. You may have run out of gas, or had a minor problem, but it made you smarter and better in the end. 
If it's still a problem then ease into it. Take your child to school and sit in the room for the first time or two. Try not to interfere with the teachers and just watch. Gradually you can feel more comfortable with them being in the room alone. 
You have to give them independence In order to make them better in the long run. 
Jen had a professional tell her recently that we needed to make sure that we did things with Konner and go on trips, that we didn't need him to just stay home. She proudly said, "We do." We go on several trips each year and Konner has gotten so much better at traveling over the years. We go on some pretty long trips too, and it's almost second nature to him now. It hasn't always been that way, but because we continued to do things with him he learned how to cope and thrive. 
I think this is good first-hand advice that I wanted to share. As always, I hope it helps.