Lead Follow or Get Out Of The Way

Pervasive Parenting 

By Kodey Toney

Lead, Follow, or Get Out Of The Way

Part of my daily job is teaching kids about peer pressure and how you can be pressured into doing things that everybody else is doing. Most people think of the negative peer pressure, but there's a positive peer pressure as well. That's one that a lot of people forget, but if we see other people to do things sometimes we are pressured into doing those things as well. Those can have a lasting effect on people’s lives. 

I was reminded of this as I was reading an article this morning by Mayim Bialik who played Blossom in the early 90s, and is now Amy Farrah Fowler on the Big Bang Theory. She talked about her father and how he was a high school teacher when she was growing up. He taught drama, and she said that he often would do plays and theater productions. When he did he would invite kids from the special education classrooms to come in to participate. She said she witnessed this and knew those kids had the time of their lives doing this. She also witness the patience and passion that her father had for helping people with special needs. 

As she attended college she found herself doing her thesis for her doctorate. She decided to use the topic of people with special needs and their Obsessive Compulsive Disorder tendencies as her theme. She knew that she wanted to work with people who had special-needs because of what she had witnessed with her dad. She had come to understand how special these kids really are, and that doesn't mean their diagnosis. 

I think there are several lesson from this. One of the most important lessons is that we can teach by example. This is where I want to plead to my teachers and educators. The kids that you are teaching see what you're doing. They can see if you really care about the students. They can see if you don't. They see when you help others and especially see how do you cope with those with special needs in your classroom. If you treat them with respect and show them love, compassion, tolerance, acceptance, and patience those watching you are going to mimic your actions; first immediately and then throughout the rest of their lives. 

I think many teachers forget that they're not just teaching reading, writing, and arithmetic. They are also showing students how to be good people. They are teaching life lessons. 

The second thing that they're learning is that people with special needs can do a lot of things most people think they can't. They just need a little guidance, a little motivation, a little nurturing, a little acceptance, and most importantly encouragement to know they can. Sometimes you are the only ones in their lives that will give them this self-confidence. 

When you have a child with special needs you need to push them. Often times they learn to adapt to being cared for as opposed to finding their independence. We need to help them to help themselves as much as possible. Don’t forget that we are preparing them for life. 

 

 

 

Keep It Together

Pervasive Parenting 

By Kodey Toney

Keep It Together 

I recently attended the Joining Forces Conference hosted by the Oklahoma Family Network. I've already explained how happy and fortunate I am to work for this group. They do wonderful things throughout the state. This conference was no exception. I wanted to share a few highlights of the day with everyone.

Heather Pike, administrative director, opened the day with an African proverb that I hadn't heard before. It says: "If you want to go fast, go alone. If you want to go far, go together." If you really think about this one there are so many ways to interpret it, but I think the main thing is that we need to work together to help get farther in our life goals. Whether that be for ourselves or our children, we can get a lot further if we have help and let others assist us. 

That was what this conference was for me. The the was "Joining Forces for a Good Life." It was a great networking opportunity for me, and I got to meet some great new contacts as well as talk to old friends about new ideas.

Sheli Reynolds, PhD., from the University of Missouri at Kansas City Institute for Human Development led the activities for the day. Her presentation was about how to set a LifeCourse for your loved ones and follow it throughout their many stages in life. 

One part of the discussion was about death and how long your family member has to live. This is a tough one for many. One of the parents at the table said that their biggest fear was that they would have to bury their son. However, the alternative is just as frightening. If we are here at least we know our children are being taken care of, but if we're gone we have to trust others. That's a difficult thing to think about. 

Reynolds said, "if I don't have hops it's hard to get out of bed in the morning." If we don't have a positive outlook on our lives and the lives of our children then it makes it tougher to function each day. You have to continue to think about the good things in life, no matter how hard that may be.

Reynolds was talking about how we have to work to make our children as independent as possible. I've talked about this before, but our ultimate goal is to eventually get rid of the paraprofessional or aide. If she's any good she will work her way out of a job, which is what we want. Reynolds said, "it's going to be hard to get a girlfriend and eventually a job with a para by your side." We have to be working to let the child do as much for themselves as they possibly can. 

"If we start in kindergarten segregating a child how do we expect them to have a job or manners later in life?" Reynolds was asking how a person that is not around those situations can learn from their peers? 

This is something I've talked about before as well. I think as much as possible the child should spend time with peers. Are there times when they need to be pulled aside for certain things? Sure, but only when necessary. We don't need to send a child down the hall just because you don't want to deal with them, or because they're not acting like everyone else. They'll never learn how to act like everyone else if you keep send them away from everyone else. Praise the others when they do good things. This will show "all" the children what you expect, especially those with disabilities. 

In all, this was a great conference and I learned so much. I hope what I've passed on will help.

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.

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.