Maybe I'm Amazed

Pervasive Parenting

By Kodey Toney

Maybe I’m Amazed

I had a long discussion with Konner this weekend. While I have many long discussions with him they usually are about Thomas trains, track dimension, Minecraft issues, zombies, or something else that interests him, but I have no idea what they really are all about. I wish I could tell you that this conversation was different, but it really just ended up with the same subjects.

However, I was reading an article on Facebook about people on the spectrum and how their brains work differently than neurotypical people. Since Konner was sitting next to me I decided to ask him what he thought about the situation.

I said, “Have you ever heard of Autism?” I knew he had because we have discussed it before.

He replied, “Yes daddy.”
I said, “Do we know anyone who has autism?”

He said, “I don’t know.”

So I explain to him, though I’ve explained several times, that he does and that it causes his brain to work differently than others.

I then asked, “Does it take you a little while to think about questions when I ask them?”

He said yes and so I tried to explain why.  I went on to ask him other autism related questions just to see what he thought.

I asked, “Do you play with people at school or stay to yourself?” He said he stays to himself, but sometimes plays with others.

I then asked, “Do you want other kids to play with you or do you want to be left alone?”

He said, “I want other kids to play with me most of the time, but sometimes I just want to be left alone.”

I figure this stands to reason. I just want to be left alone sometimes too, and if he is overstimulated he probably doesn’t want anyone to bother him.

It was at this point that the conversation fell off on his end. I would ask him if the other kids made fun of him or if they were nice to him.

He said, “They are nice to me…did you know that Thomas and Percy are medium gauge engines…”

So I tried to steer the conversation back on track and said, “Do the kids make fun of you or are they nice to you?”

He said, “They don’t make fun of me…did you know that on Misty Island Rescue…”

He, like many children on the spectrum only want to talk about things that they are interested in, and when they are interested in them. He will go days without saying anything to anyone unless he is asked a question, and then spend an hour talking about a certain train or part of a movie that he watched. He will keep talking even if you have a conversation with someone else.

He tends to repeat the same conversations over and over again. This is part of the echolalia.

Part of the thought process issue is the fact that, according to an article on the Autism Discussion Page on Facebook, and other articles I’ve read in the past, “The brain wiring for people on the spectrum (ASD) makes it difficult to look past the detail for the overall picture. It is more focused on reading the concrete details (facts). What your see and hear, is what you get. They stay more true to the details, and analyze the facts to piece together the overall picture. Hence their thought processes can be less biased (although not entirely unbiased), and more true to the facts.”

His mind amazes me in the things it can do when he wants to, but when he doesn’t you might as well forget getting anything out of him.

 

My Baby Wrote Me A Letter

Pervasive Parenting
By Kodey & Jennifer Toney
My Baby Wrote Me A Letter
I often have parents ask me what they can do to help their teachers understand their children more. They say, “I don’t feel like they really know my child.” We all know that we have exceptional children with great traits, but that seems to get lost sometimes when people focus on their disability. This is why doing a letter to your teacher is important.
Sometimes called a one-pager, a letter to your child’s teachers, aides, and staff members is one of the greatest ways to let them know all about your child. This gives you an opportunity to tell all the good things about your child and show them off a little. It also lets the teacher know some of the things that your child likes so that they have something to talk to them about. You can also include things that may set your child off and cause irritation.
I’m going to include the letter that Jen wrote (with help from Konner) to give to his teachers last week. I hope that you can use this as a template, and I hope that you get to know Konner a little better because of this.
FIFTEEN THINGS ABOUT ME
Hi, my name is Konner and I am in your class this year. I want you to know a little about me. I’m nervous to be in your class because it’s new and I don’t know what to expect. I need some time to adjust and then I will feel comfortable. Please don’t judge me on my first few weeks. As the time goes by, you will be amazed by the skills you never thought I possessed. I sometimes look like I don’t understand. That’s just because I don’t have the same expressions and reactions as other people. I might not look at you when you talk but that doesn’t mean I didn’t hear you. I did. In fact I usually hear more than most people. As I become familiar with your classroom I will begin to shine. A great way to speed up this process is letting me know what to expect. Written or picture schedules for the day reduce my anxiety. A five minute warning before a change of activity can help me greatly too. You are my teacher and I look up to you. I want to succeed this year but I can’t do it without your help and most importantly, your belief in me that I can do it!
1. What is my general disposition?
I go from happy to frustrated in mere seconds, so please be patient with me and in time you will be able to read me well enough to help me keep my frustrations to a minimum.
2. What am I really, really good at?
I have a really good memory and I can mimic any sound with perfect pitch. I am really good with technology.
3. What do I absolutely LOVE doing?
I love to draw on my marker board and play on my iPad.
4. What do I absolutely HATE doing?
I hate to miss recess and lunch and MERP.
5. What academics are my strong areas?
Math, Reading, and Spelling
6. What academics do I need a lot of extra help with?
Sometimes I have trouble understanding language and I need things to be said in a different way so that I know what I am expected to do.
7. Which skills would my parents really like me to work on this year?
Social skills and inappropriate behavior
8. How do you know when I’m getting frustrated?
When I am frustrated I sometimes scream, jerk, repeat the same phrase over and over, fall in the floor, slam or throw things.
9. What can you do to calm me down before the storm hits?
Ask me if I need to take a break or go to my safe area in the classroom, take a walk, redirect me to a different task, weighted vest.
10. Too late! The storm hit! What can you do to calm me down?
Take me to an isolated area away from others and try to apply pressure by hugging tightly and wrapping in a blanket. Do not talk to me until I am calm enough to focus. When I am having a meltdown I do not understand what is going on around me or what I am doing.
11. What strategies work really well to get me to do something I don’t want to do?
Reward Board, Nerds, iPad time, marker board time
12. What typically makes me laugh?
Loud noises
13. What consequences back-fire and don’t give the desired results?
Yelling at me, corporal punishment
14. I don’t like consequences, but which consequences work well for me?
Taking away my stars from my reward board, sometimes timeout from recess works
15. I would also like you to know…
I love to build things on Minecraft and I want to be a computer programmer or an engineer when I grow up. I love Thomas the Train and I talk about the different engines constantly.
This was a template that Jen found online by Jene Aviram, of Natural Learning Concepts. There is a second part to this that I will try to include next week that has an article explaining children on the spectrum to teachers. I think it goes well with the letter.
There is way more to our children than a label. They are not a tag that says, “I have a disability.” They are children like others for the most part. They just have some different attributes.

All Shook Up

Pervasive Parenting
By Kodey Toney

All Shook Up

Last week Konner sat in class fidgeting a little. He would jerk sporadically and let out a yelp or scream every once in a while (I wasn't there, but was told so by my wife).
These are things that we have become somewhat comfortable with, and have worked with him to stop. However, when he gets over-stimulated he will do these things in frustration.
His teacher last year had some trouble getting used to it (if you can get used to that), but explained to us that for the first couple weeks or so it was something that scared her a little. She explained to me once that as she had her back to the class writing on the board, Konner would let out a loud noise and she felt like she had been shot. This is completely understandable, and yet he really can't help this impulsive nature.
Most students in Konner's grade have been with him since head start and have come to understand his disorder and the quirks that are attached. Many of them have taken him under their wing and know how to help out if he gets frustrated. For this we are blessed.
However, for many reasons, the school district had seen a huge increase in enrollment this fall. That means many new faces who have never met Konner or understand autism and the issues that come along with a neurological disorder.
So, you can imagine the surprise of the new little girl who sat in front of Konner in class last week as he began to get irritated. He started to jerk around and grunt loudly. As he did the little girl turned to see what was wrong. He continued and she felt uncomfortable. She said something to the affect, "He's kind of weird." Needless to say my wife and the counselor are going to have a meeting this week to try to explain autism to the new kids, and maybe have a refresher course for the others.
We have never tried to hide the fact that Konner has autism, but we don't try to make a big deal out if it either. However, I feel like it is something they need to know.
So, how do you explain this to children? Here are my suggestions.
Don't start with what is "wrong" or "different" with him. Always lead with positives. Tell what they can do, what they're good at, and what they like.
This is how I would begin.
"Konner is very smart. He is really good at math and reading. He is also really good at using computers and the iPad. He likes Thomas the Train, RoBlox, and Minecraft. Do any of you guys like those things?"
Then I would try to explain that everyone is different. Some people have blonde hair, some black, some brown, and some red. Some people wear glasses, some may need hearing aids, and some even need a wheel chair to move around. However we are all alike in many ways.
Konner is really good at that other stuff, but he has problems with his senses. He processes information different than most. Sometimes it takes longer for him to understand what people ask him.
Bright lights and loud noises can really bother him. Changes in the way the classroom smells or the way his tags in his clothes rub against him can feel painful to him.
When he gets uncomfortable and irritated he tends to have outbursts.

There are some good links out there to help as well.

http://www.youtube.com/watch?v=wES6ZeoDaUs&feature=youtu.be

http://www.youtube.com/watch?v=ID9tB0fyG7U&feature=youtu.be

http://www.slideshare.net/fittingtogether/everyone-is-different-powerpoint-3526067

These are just a few ways I would get started and let them ask questions. It is important for them to understand and try to help the child. You want the kids to help more than the teachers and aides. This makes them feel important, and helps your child socialize. The kids in the class will learn to accept people with disabilities, and they may just find a lifelong friend too.

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.

 

End Of Summer

Pervasive Parenting

By Kodey Toney

End of Summer

As the summer comes to an end for us I want to reflect a little onKonner’s actions. He has been typical in some ways, and yet in some he hasn’t. When I say typical, I don’t mean neuro-typical, I mean Konner-typical. What we have come to expect from him over the years.

Something to understand, and most parents out there do, is that there is nothing typical in the autism world. The only thing predictable is unpredictability.

Konner has truly become obsessed with the computer and iPadthis summer. He has always had a fascination, but this summer seems to be worse than ever. If he’s not on one you can find him on the other. This is not too unusual, but the level of his obsession has increased.

Now this is a tough predicament as a parent. We try to encourage him to, and sometimes make him, do other things.The problem is, when he’s on these things he seems to be stable. By that I mean, for the most part, he is not over-stimulated. If I make him get off the device he then becomes very frustrated. Part of this is from making him get off the computer, but part of it is that the computer allows him to focus on something.

This is the very reason many experts are looking to the iPad as a device to help children with autism. On an episode of 60 Minutes I was watching recently they said that children who were given a paper with numbers on it and told to count, or point to the numbers, were typically not interested either immediately or within a minute. However, if they were doing the same task on an iPad they were more apt to be engaged.

This year Konner will have to start writing in cursive, so Jen has used that lately as a way to get him off of the electronics. He will work on it. In fact, if he’s asked he seems to want to do it. That will last for only a few minutes though; usually 10 at the most. Then he’s asking to get back on the computer.

These pieces of equipment can be very useful though. In fact there are many are being used to break the silence in children who are non-verbal. They are unlocking the secrets inside many of these children that have been quiet for so long. This is ending the frustration within them and helping the whole family.

It is also helping us all to understand autism a little more. It’s helped us know that there is more inside. My mind goes back toCarly Fleischmann who for years was relatively silent until her team found a way to allow her to speak. She has now written a book and been featured on many news shows.

This success with the technology is particularly true in younger children. I think this is attributed to a couple reasons. Children seem to take to technology faster than the older generations.Konner can do things with computers and the iPad that boggles me. They also can learn things easier at a young age. It’s said that if you try to learn a new language it’s easier at as a child. This is what they are trying to do, learn a language. If they can hear the voice say something they may be able to mimic it.

The issue with mimicking is what they are impersonating.Konner, as I’ve said in the past, likes to get on Youtube and search for things he likes such as Thomas the Train, Roblox, andMinecraft. When you do that there is no filter and people post some crazy stuff that is not appropriate for children. Konner’svocabulary has increased lately, but not the way we wanted. The worst part is that he doesn’t fully understand that the things he is saying are bad.

Don’t forget that, like anything else you try with children on the spectrum, this doesn’t work for everyone. Some children will take to it very easily, and some will not like it at all.

We can’t let our children become so attached to these devices, but we can use them to their advantage. There is a happy-medium that we are struggling to find.

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.

School Days

Pervasive Parenting

By Kodey Toney

School Days

It’s school time again, and I know that every year I write about this, but this is such an important, and critical, time of the year that I feel I should give some tips every year. This is a pivotal year for Konner as well. He is heading into the third grade this year and this will be the first year that he moves between classrooms. This could be trouble, we’ll have to wait and see. He’s also going to have two different teachers, and we’re not sure how that’s going to work out yet either.

Here are some ways that I have been trying to prepare him, a little at a time, for the new school year. I hope this may help you.

The first thing I’m doing is talking to him. Brilliant, right? Every chance I get I’ll ask him if he’s ready to start school back. I’ll also ask who may be in his class. This is to remind him that all his friends that he had last year will be there too. I then try to explain the fact that he’s going to have to move to different rooms this year, and that he will have a locker, and two different teachers. I try to do this a couple times a day, just in passing to get it into his mind what he can look forward to.

We all know that children on the spectrum are creatures of habit, so the more I can let him understand what he may expect the better the school year may start.

We also are fortunate that his aid will be back with him this year. This is a blessing for us. This may be the one constant for him this year.

Every year we anticipate the first two weeks to be hectic. Until he can get into the groove of life in a different environment it’s going to be crazy.

I think the fact that he has to switch rooms is the one thing that scares me the most. He is going to have to find the rooms and get the right books. I know that he will have help from his friends, but again, for a while it’s going to be crazy.

One thing that I suggest, and we try to do this each year, is to go visit the teachers and the rooms ahead of time if possible. This will be something you will have to work out with your teachers and the school. We are at an advantage on this one since Jen works at the school, but I will say that most teachers go in a week ahead of schedule to get their classrooms in order and are usually willing to work with you if you just ask.

If you are going to have a special place in the room for them to go when they get over-stimulated it is a good idea to go over that ahead of time with the teachers as well. You can work out a time to go in early and set up the place, make sure that they are comfortable with where it will be and how to use it, and just get to know the teacher yourself too.

Establishing a relationship with your child’s teacher is key to a good school year. You have to let them know what you expect, and then get some feedback on what they need from you. Make sure that you go over the communication notebook if you have one. Let them know any medical issues ahead of time. Give them all the contact information in case they need anything.

This is just another year, and if it goes like the others it will be strange at first, but will go smoothly after a couple weeks. Either way the key is to work together with the faculty and staff.

Quality Control

Pervasive Parenting
By Kodey Toney
Quality Control
When I'm looking for topics to write about for my column each week I have gained ideas from several different areas. Songs, facebook posts, and everyday stories have been sources for ideas lately, but this week I found one in a classic book. I was reading David Copperfield by Charles Dickens when I came upon a passage that I found very inspirational in a slightly different way.
For those of you unfamiliar with the story I'll give a small rundown; Copperfield was orphaned, abandoned, built a life for himself, was adopted by an aunt that at first didn't want him, but then wanted to help him improve his life. I won't go into many other details, but it was a good book about overcoming obstacles and persevering in life.
That is not exactly where I found the inspiration though. I was reading a portion where David was going to marry a woman, and though he loved her he knew she wasn't what he had in mind for his wife. She was different than what he had imagined because she wasn't as intellectual. He expected someone he could have more of a conversation with, or that would do more around the house.
Then his aunt said something that I think we all could use in our lives; especially those who have children with special needs. She said, "It's your duty to judge her by the qualities she has, and not by the qualities she may not have. Try, instead, to develope these qualities in her. And if you cannot, then simply do without them."
What great advice for someone with a child on the spectrum. First of all it is our DUTY as parents to find the qualities in our children that they possess. We have a duty as a parent to care for our children. This is what we MUST do. We decided to when we decided to bring this child into the world, whether by accident or by choice.
Find the good and ignore the bad. We understand we have a child with special needs. We know they can't do everything that other children their age can...yet. However, we know what they can do, and most of the time these things are extraordinary. Excentuate the possitives.
The things they can't do...yet, we have to help them in any way we can to develope these qualities. It again is our duty to do so. Therapies, diets, research, talking to others, resources, and anything else we can find to give our child a chance is what we need to provide for them.
Then, if we cannot do this; if for some reason this is not possible for them to develope these things in life, then we just accept that and find a way around it. If our child cannot tie their shoes then we find velcro shoes. If they can't talk to us then we find another way to communicate.
Dickens was a great writer, and I'm not sure this is what he had in mind when he wrote this passage, but I felt this was one of the strongest things I had read in a long time. Hope it helps.

We Built This City

Pervasive Parenting

By Kodey Toney

We Built This City

This week the family packed up for a long overdue trip to Kansas City to visit family. We've taken this trip before, but it had been two years since we had been there last. While there we decided to visit a couple places we had not been before, and I thought I would share one of those experiences with you. 

One of our first stops was Legoland Discovery Center. This is great place with a couple small rides, tons of Legos to play with, and a 4D movie. The boys really enjoyed the place, and considering the 90-plus degrees outside we all enjoyed the air conditioning. 

All of this is crammed into a relatively small space though, and that combined with a large number of people was a recipe for overstimulation. 

We decided to watch the movie, which was okay, but Konner has never really like the 3D glasses and things jumping out of the screen at him. This was no different, and every time something seemed to jut out at him he screamed and kicked. He got pretty uneasy until he finally just took the glasses off. The mist of water and wind blowing on him didn't really help matters much. 

We decided to let him go into the play area to work off some of that anxiety. It helped some, but it was full of kids too. 

We moved on to an area where kids could create vehicles and race them on a track with others. The area included several bowls of Lego parts that you could mix and match to make the perfect car. The problem was that there is no order to where the parts were. Konner couldn't find the parts he was looking for, and some boys were picking through the same bowl as him. This is when he started screaming. 

Now this wasn't the worst meltdown we've ever had, but it was loud. He kept screaming and Jen kept calming him. After what seemed like a long time, but was actually only about five minutes, she finally convinced him to move to a different area where we decided to eat. This did little to calm him because he just kept thinking about what he was doing and that he didn't get to finish. 

One thing about Konner, and I assume many on the spectrum, is that once they begin a task they want to finish it. If they are disrupted it can cause meltdowns.

We saw this early last school year when he had centers where students get a certain amount of time before they have to love to another area. If he wasn't done in the one are he would get upset or have to finish what he was doing. 

We convinced him to leave and promised to by a Lego set so he could build his own race car. 

This was really the only major issue we had, and a visit to the aquarium next seemed to help calm him. 

The moral is this: crowds, noise, and daunting tasks are not a good combination on vacation.

Sent from my iPhone