Tuesday, June 30, 2015

Go Ninja Go

Pervasive Parenting
By Kodey Toney

Go Ninja Go

Kruz is a huge fan of the Teenage Mutant Ninja Turtles. That's why when we heard about the live action show coming to this area we snatched up tickets. The show was held Friday night, and though Konner is not a big fan of the turtles we went as a family.
I wasn't sure if he would actually like the show. These things are hit and miss with him these days. It used to be too loud, too hot, too many lights, etc. Because we have been to several events throughout the years we have groomed him to the sensory issues.
This doesn't mean that he doesn't still have problems. It just means the issues are fewer and farther between.
You see, as I've said many times in the past, you can't cure autism. What you are actually doing is helping people on the spectrum learn to tolerate the issues that come along with autism. You have to help them understand that there will always be things to bother them. They will have loud noises, strange smells, and flashing lights. The only way to help lessen those things is to expose them to these situations. You will have to ease them in at first, and build up a tolerance.
On the way to the show I explained to Konner that we would probably have to wait in a line for a while. I told him it would be loud and there would be lots of lights and people.
The only real problem we had was that when we arrived nature called. There was a long line and people were waiting outside in the heat for several minutes. There was no way they were letting us cut through the line to take Konner to the bathroom. So instead we stood in line with Konner telling us loudly that he had to pee really bad, he couldn’t hold it much longer, and that he was going to get a bladder infection and not be able to pee ever again if we didn’t go “RIGHT NOW!” This caused a little frustration on my part, but once we made our way inside the doors He and Jen sprinted to the bathroom while Kruz and I got the tickets. 
So, as we sat there watching Kruz enjoy the stunts, fighting, and silly banter, I kept an eye on Konner. I was watching for any sign to see if he was going to get upset. I already had a plan in case he started go into meltdown mode.
However, the strangest thing happened. You see, if this had been a Thomas the Tank Engine event then Konner would have been enthralled. What I didn't expect was for Konner to get so into the Ninja Turtles. He has never shown much of an interest when we watch it at home. He doesn’t play with the action figures with Kruz or play the video games.
He was though. He paid attention to every word. He would repeat the parts they said to repeat, make the hand gestures, and answer questions as they were asked.
I never expected him to pay attention that closely. I expected him to sit there for a few minutes, get bored or frustrated, and then start kicking the chair in front of him, or around him, or behind him. 
It just goes to show that you can't predict everything. Konner surprises me just about every day. Sometimes bad and sometimes good. There is no doubt though that he teaches me something new each day, and he makes life interesting.

Right Or Wrong

Pervasive Parenting

By Kodey Toney

Right or Wrong

This parenting thing is hard…ok, so I’m not telling anyone anything they don’t already know if they have a child. I’m also not giving anyone with a child on the spectrum some crazy insight, but I have to share an incident that happened Sunday night. It involves Kruz mostly, but Konner was inadvertently drug into the situation. The problem was that he really didn’t understand what was going on, and felt like he was being punished.

Let me explain. We had been talking about taking the boys to see Jurassic World at the drive-in theater. Kruz was excited. He had been watching the three previous movies in preparation, and was psyching himself up for Sunday night. However, he decided about an hour before time to get upset over something and throw a fit. He yelled at Jen and he yelled at me. He had a full-blown fit. So…I decided to pick this as a teaching time. I know I’m probably going to be seen as a bad dad for this one by some, but I spanked him and told him he wasn’t going to get to go that night. That caused another meltdown…oh, wait, this WAS NOT a meltdown (for those who have not read my previous columns about the difference between a tantrum and a meltdown visit http://pervasiveparenting.blogspot.com and search for “I Melt Every Time You Look At Me That Way). 

As I’ve said many times before, when raising a child you have to pick your battles. That night I was in combat mode and was ready for whatever casualties may ensue.

I know you armchair parents will say, “You should have done this, and you should have done that.” As I’ve always said, children don’t come with an owner’s manual. You have to do what you think is best at the time, stick with it, suffer any consequences, and learn from your mistakes.

You will make mistakes.  Don’t beat yourself up about them. I say that only because I tend to do that. I try to do what I feel is right, and then have regrets later. I feel like my child is going to completely turn out horrible because of the things I do, but I can’t think of that. I can only do what I know and learn.

This regret came a few minutes later, not because of Kruz’s punishment, but because of Konner. He didn’t really want to go to the movie and decided to stay with his grandma. He was excited, and because Kruz didn’t get to go to the movies he didn’t get to go to the movie. He came in and I explained to him the situation and he said, “But dad, I didn’t do anything. Why can’t I go to grandma’s? Kruz was the one that was bad.”

The worst part is that he really doesn’t understand. I explained it to him, and I think that he gets it, but he really feels like he’s being punished for his brother’s actions. And, he really is. However, I was not about to give in for Kruz because of Konner. I was in the thick of this fight and unfortunately Konner was going to have to be a casualty of war.

In the end I think it worked out. Kruz learned his lesson, Konner, I think, understood what was going on, and we are going to try again for Jurassic World for another night.

If they are both scarred later down the line then I can at least tell myself that I tried what I thought was best at the time. Only time will tell.

Promises

Pervasive Parenting

By Kodey Toney

Promises

I found an article recently on Pintrest called “10 Promises Every Special Educator Should Make To Their Students’ Parents”. While there is some great information on there for educators, I think it can relate to the parents as well. I thought I would share a few of the thoughts and give some examples.

The first promise talks about not calling parents who have high expectations and advocate for their children “high maintenance”. I’m going to throw another term in here, “Cadillac mom”. They both mean basically the same thing, and to a certain extent they are not a bad thing. However, you must know a few things. A parent that asks for what their child needs is a great thing. We are our student’s biggest advocate, and as so we have to ask for what they need, but we also have to know what to ask for and what we can’t have. The problem is, with any parent, we want EVERYTHING we can get…and then some. Pete Wright talks about the education system as a vehicle. Through the Individuals with Disabilities Education Act (IDEA) we are promised a “Chevy” education. So often we ask for a Cadillac though. We are only promised what we need, no more, no less. Cadillac moms are those who ask for more than what they are promised by law. 

However, we should always have high expectations for our children. Ask for whatever you want, and if you get it that’s great, if you don’t then make sure what the law says.

The second one says that you should always presume competence. I don’t know how many times I’ve seen this working with schools, and sometimes families. They assume that because the child has a disability they can’t do something. WRONG! Never assume that just because of a label. In fact, I would challenge you to prove those assumptions wrong. If you have a child who you think can’t do something, as a teacher and parent, it is your job to make sure that you are working hard to push your child to do the impossible. You would be surprised at what they can accomplish with a little help and some encouragement.

There two promises that go together. They are to ask the parents for input on their children before the IEP meeting, and to remember that the parent is the child’s first teacher and the expert on that child. This is so important. The IEP team is just that…a TEAM. You must work together to help the child. The parent is with the child more than the parent, has known them longer, and will be with them longer in the future. It is important to get the parent’s input so they know what to look for with meltdowns. It is also vital to understand what the parent wants the child to learn. Is the main concern reading, writing, and arithmetic, or is it that the child can ask the teacher or a peer for their pencil when needed? These are both equally important for a child with a disability. In fact, it may be more important in the future for the latter.

Stop using “What is he/she going to get out of this?’ or “They’re not ready” as an excuse to not include a child in general education. This goes with the previous one. The child’s inclusion in the classroom and being around peers is reason enough for any child to be in the general education room. You never know what they are ready for if you don’t allow them to try.

There is a promise to never assume you know what’s going on at home, or blame a child’s behavior on parenting skills. You don’t know what happens in a house with a child with a disability. You don’t know the strain that puts on a parent, family, and relationships. You don’t know what it feels like unless you are in that house with them. Never assume anything.

Promise to be communicating with the child, especially on the positives. You have to acknowledge the children for their good things, more so than the bad. Always let them know that you are proud of the things they are doing well. Let them know what they could do differently when they are doing wrong.

Never assume that what works with one child works with all children. I would add that you want to try different things with a child too. If you tried something yesterday and it didn’t work then try it again today. You never know. Think of it as a bag of tricks. If one trick doesn’t work reach back into the bag.

I’ll just leave you with the last one because I think it is a great one. It may be the most important one because everyone involved needs encouragement.  “I promise to always have high expectations for your child and never give up on them…or you.”

Nighttime Is The Right Time

Pervasive Parenting

By Kodey Toney

Nighttime is the Right Time

English poet Thomas Hardy wrote, “Time changes everything except something within us which is always surprised by change.” Perhaps Hardy had a touch of autism, but I feel that this is especially true with a child on the spectrum. The concept of time has been something that Konner, and most people with autism, doesn’t seem to understand, but they have a tighter grasp on time than most.

This is a bit of an extension of last week’s column, but Konner has really struggled with the concept of time since being on summer break from school. He was so used to going to bed at a certain time and getting up at a certain time, and leaving for school, and eating, and classes, and recess, etc. all at the same time each day. Now that structure is gone and he seems lost at times.

As I said last week, Konner has been really emotional lately, and I feel in ways that has to do with his lack of structure.

In school the teachers in the past have used timers, visual schedules, and verbal cues to help transition between time periods and activities. This is a great tool for the classroom, but it will work at home as well.

I had a reader send me a message a few weeks ago that I thought was a great idea. I have to confess I haven’t tried it yet, but I think it could work well. I had talked about how Konner seems to get up early and come in to talk, or tell me about what he is going to do with the computer.

He used to actually tell us that he needed to use the bathroom. He would come in during the wee hours of the morning and say, “Dad, I need to go pee.” Then he would wait for me to tell him okay before he would go. That has luckily changed.

The suggestion from Laura Lawless was to give him a digital clock and tell him he can’t come out of his room until after a certain time, i.e. 5 a.m.

This can extend a little further into the day. You can make a schedule for the day and put down times for computer time, television time, iPad time, play time, eating, shower, bedtime, etc. These suggestions, like most, are great for any child, not just someone on the spectrum.

The longer days have Konner confused as well. He thinks it’s only night time when it’s dark outside. If it’s 6 p.m. I will say something like, “No we can’t do that tonight.” Konner will respond, “Dad, it’s not night time yet. He doesn’t understand that it is evening and almost night. In turn he doesn’t understand why we can’t do something “tonight” when it’s still light outside. Of course, Kruz has the same issue.

Last night I told Konner that it was bedtime. It was around 8 p.m., and he said, “Dad, it can’t be bedtime. It can only be bedtime if it’s night, and it can only be night if the sky is black.”

That’s not bad logic, but we’re working on it.

Keep On the Sunny Side

Pervasive Parenting 
By Kodey Toney

Keep On The Sunny Side

I just wanted to share a few stories about Konner from this weekend. Summer vacation is well underway, but that means a change in routine. Any parent of a child on the spectrum knows that this can be a difficult time. 
Konner is trying to adjust to s new routine. After spending ten months getting up, getting ready for school, going to school, coming home, doing homework, getting ready for bed, and then going to bed, you would think that just getting up and doing nothing, or whatever you want, wouldn't be a if deal. For most people that's true. Kruz is enjoying destroying the house and not having to go to school, but Konner has been a little different. He has been really anxious and emotional. He tends to worry about things that he shouldn't, like people getting upset with him, and he is on the brink of crying most day. This stems from the anxiety. I know that it is just because he's not sure about what is going on right now, and hopefully in a week or two he will calm down some. 
Much of the problem probably lies in the fact that his little brother is a pest. He tends to push him to his breaking point. Several times I have had to get on to him for hitting or pushing Kruz, even though Kruz probably deserved it. This us one of those typical brother moments, but it is adding to his frustration. 
On a lighter note, Konner came to me the other day as Kruz was just pushing his buttons. He looked at me very seriously and said, "You handle him daddy. I can't take anymore." 
I'm not sure where he gets this stuff.

Sunday, May 24, 2015

Teach The Children Well

Pervasive Parenting
By Kodey Toney

Teach The Children Well

I teach a few classes at the local college, and as I was finishing up entering my grades this week I started thinking about something. At the college level I expect more out of my students because they are no longer in high school. I tell them on the first day that I don't give grades, you earn them. I think this philosophy is true for any age, but I also think earning a grade is so much more than just the student doing their work.
All schools MUST adhere to the Americans With Disabilities Act. That means that I very often receive a letter telling me each semester that a student may have a disability and that I need to make accommodation. I do this for many reasons. I do it because I understand that this student has made an effort to attend school, and is working to better their life. I do it because I would want someone to do the same for me, and I would want someone to do it for my son. I do it because it's the right thing to do as a teacher and a humanitarian. And, I do it because IT IS THE LAW. I understand that if I don't make these accommodations after I've been sent this letter telling me I have to I can lose my job and potentially be sued.
I make these accommodation even if I don't have a letter telling me to. I understand that some of my students have special needs, but haven't requested assistance for some reason. I want to make sure that my students are learning. If they are not I try to find ways to help them learn. I'm not trying to set them up to fail. If they are showing an effort I will help them. If they are not I will try to motivate them.
I understand that people have issues. I try to work with those students and push them to do better. I feel that is my job as a teacher.
You see I feel there is a difference between a teacher and an educator. An educator can lecture, give the information to students, and let them do the work...or not, the choice is up to the student. I feel a teacher goes above and beyond for their students, all students, but especially those who have special needs in the classroom. If they need motivation or some special instruction then a "teacher" will go above and beyond.
This works on all levels of education from elementary to higher ed.
We have to help students with ADA requirements and IEPs. Not only is it the law; it is simply the right thing to do. If an educator doesn't feel that way I think they should find a different profession because they're not in it for the right reasons, to help others.
This is just my opinion.

Ready or Not

Pervasive Parenting
By Kodey Toney

Ready or Not

We had several deaths in our town in the past couple weeks including one of a little girl same age as my youngest son Kruz. This brought up something that I had discussed among some friends at a conference recently, and I think it's something that every parent of a child with a disability really has in the back of your mind. I will warn anybody that's reading this today that this is going to be a bit of a grim article, but it's something I think that needs to be discussed.
Death I feel needs to be addressed because everyone thinks about it and it's one of those heavy thoughts that can consume you if you let it. For a mother of a child with a disability this is somewhat of a catch 22. The question that I had with this group of friends was, "Is it better for your child to die before you or you to die before your child?"
To many I know this seems like a simple question. However, it's probably one of the most complex questions you will ever have if you have a child with a disability.
The question in more detail is, do you want your child to die before you so that you know that they're in a better place, and there's no worry about what life is going to be like if you're not there to take care of them. That question just brings up more questions. Who will take care of them? Where will they go? What will they do? 
However no one wants their child to die. 
I know this seems like a horrible subject, and no one wants their child to die but I bring it up because it's something that has become very prominent in the media lately. I have read several stories about parents, especially moms, who have become so consumed by caring for their child with a disability and worrying about what will happen to them that they become extremely depressed. That depression become so serious that it turns to death. That sometimes include the parent and/or the child.
I'd like to say that I'm no expert. I'm not a counselor, psychologist, or psychiatrist. I've also never dealt personally with depression or had any of the feelings that come along with it. However, I know signs and I do know the outcome to be very serious, so I wanted to encourage anyone who may have any thoughts to seek help. Find a counselor, find a psychiatrist, call a hotline, do something to get yourself some help. Always try to give yourself some "you" time. I know how hard that is but I think it's important that , 1. Remember that your child is the most important thing in your life, and you are the most important thing in your child's life. You have to do everything you can for them to keep them safe and give them a better life. You are doing the best you can. I know there are times when it may not seem that way, but as long as you're putting forth every effort that you have to try to get your child services, therapies, and resources then you are working to make that child's life better.
2. Take care of yourself. If you don't have the oxygen mask on first you can't help your child; it's that simple.
As for the initial question, I don't know the answer, but I know this, and it's just my opinion, I would never want to see my child die. I don't know what's going to happen after I'm gone or After Jen's gone. As much as I hate to say it the responsibility will probably fall back on Kruz. We have to work now to put in place anything that we can to help when that time comes.