Sunday, December 7, 2014

For The Good Times

Pervasive Parenting 
By Kodey Toney

For the Good Times

We were having family over for the holiday, so we went into super-cleaning mode at the Toney house. During all the tidying Jen found a letter from Konner's aid that he had the previous three years, Mindy Hale. She had left a "List for Konner", and I thought I would share some of the information because I think it is good to know for any parent, teacher, aide, etc. most of this will be Mindy's words.
This will probably be a two-parter since there is so much info, but I'll just start at the beginning. 
"He has to have a locker on the end top! If he is in the middle it will be overwhelming and cause a meltdown." It's best for Konner if he's not crowded, pushed around, or hovered over by the other students. In fact we've tried to work out a schedule where he goes into the hall before everyone else so that he isn't overstimulated.
"He needs to have an assigned seat in every class so he knows exactly where to go each hour. He will also have a visual schedule in his locker to help." Consistency is important with children on the spectrum. He needs to know that most things are going to be the same. He also needs to know what is coming up next. 
"Konner will need supplies in each classroom: pencils, paper, colors if needed, erasers, chewies (chew toys to help him stem). A seat sack (a little sack that hangs on the back of the chair) would be great to keep them in, or a special place in the room especially for him. If he has to leave the room to get something he gets upset if he misses anything." This makes the transition from each class as seamless as possible. The less he has to carry the easier it is to move through the halls. 
Konner really does get upset if he misses anything, to the point that he has had a meltdown asking the teacher to start over. It's best to just avoid those situations if possible. 
"Konner is also going to need a safe room in case of a meltdown. It needs to be easy to get to and a place all to himself." Konner has a small space in a separate, quite room where he can go to calm down and get ready to transition back into the classroom. An important thing to remember is that this is a "safe" room. The doors should not be closed unless it's his choice or absolutely necessary. Also, don't get this confused with the discipline area. You can't give them timeout in the safe area. It sends mixed signals.
"He will also have a reward system that will need to be in place every hour. So when he has reached a goal or has received a reward he will need a little free time to do so! (iPad, computer, or marker board)" Konner has a "star chart" that he receives a sticker each time he's doing something well. He builds up those stars until he earns a reward, as mentioned before. However, if he does something negative he has a star taken away. The point is positive reinforcement though. If he's just sitting in his seat quietly the teacher should walk by and reward him for doing the right thing. If he's working on his paper like he should he earns another star. 
This is a good place to end for this week, but there is more good advice coming next week as well. I hope it helps. 

Saturday, November 29, 2014

The Old Man's Back In Town

Pervasive Parenting 
By Kodey Toney 

The Old Man's Back In Town

I'm one of those guys that thinks we shouldn't start celebrating Christmas until Thanksgiving is over. This is why I was saddened when I came home last week to find my youngest, Kruz, and Jen building and decorating a Christmas tree. That being said, I'm going to write about Christmas for Thanksgiving week. I wouldn't normally do this, but there is something coming up soon that I want everyone to know about so you will have plenty of time to plan for it. 
The Pervasive Parenting Center will host Sensitive Santa, Thursday December 11 at 6 p.m. This will be held at the Community State Bank in Poteau. 
Local parents started this a few years back because we understand that for some families with children on the spectrum the holiday season can be overwhelming. The long lines at stores can be frustrating for a child with autism. Then you only get a second or two with the big guy. This was developed as an alternative to those lines and hotbeds for meltdownsThis event is a great way for children with disabilities and sensory issues to enjoy the holiday season. 
Any parent of a child on the spectrum knows that waiting in those long lines is just an invitation for trouble. The sights, smells, and long delay can cause a sensory overload that will leave a bad impression of Christmas. Children with disabilities who attend can enjoy a quiet evening with Santa, and don’t have to wait in lines. 
Sensitive Santa is soft spoken, unlike the boisterous, jolly soul that we see at the mall. The stereotypical reproduction of the real man from the north is usually too much for a neurotypical child to handle, much less someone who is upset by loud sounds. He won’t touch the children unless they come up to him. They don’t have to sit in his lap unless they want to. 
The children are treated to milk and cookies while they wait, and someone is on hand to read a book as well. This gives them something to do instead of standing around in a long line.
Parents can arrange for Santa to have a present ahead of time so that he could pull it out of his bag when you get there. 
Sensitive Santa is open to ALL children with disabilities, not just those on the spectrum. We understand that not all children will feel comfortable around huge crowds, and it’s inconvenient to wait in line with any type of disability. 
The only thing we ask is that this is for just the children with disabilities; no siblings. Too many children can mean too many distractions. 
If you want more information, or have a child that is planning to attend, please contact me at ktoney@pervasiveparentingcenter.org, or contact us on Facebook at the Pervasive Parenting page.

Sunday, November 23, 2014

Bring It All Home

Pervasive Parenting
By Kodey Toney

Bring It All Home

Jen and I had the privilege of attending the Oklahoma Statewide Autism Conference this weekend. It's always a great conference thanks to Rene Daman and her staff at the Oklahoma Autism Network. Jen and I started the Pervasive Parenting Center to try and help bring resources to the area, and since most of you couldn't attend the conference I thought I should share what I felt were the highlights with you. This is my way of trying to bring it all home to you. 
In my commute to work each morning I listen to the Morning Animals, so it was a pleasant surprise to hear talk-show host Phil Inzinga open the conference and talk about his son and their experiences with autism. It helps to know that I'm not the only one having difficulty working with schools and raising my child on the spectrum. 
The first keynote speaker was Michelle Garcia Winner, MA, CCC -SLP. Winner has established the Social Thinking Center and helps develop social skills in students with social learning challenges. I thought her presentation was great. One of the things she talked about was how the first thing we ask about a child is, "What is their diagnosis?" Then we treat them based on that diagnosis. We should never label a child based on the diagnosis, especially when we know that no two people are alike. So she said, "Treat the child and not the label." If you get caught up in their diagnosis we can miss something. 
She also said to remember that while we're teaching our children, or for teachers their students, we get hung up on the math and reading and forget that they are not learning social skills. As an example she explained that so many times in life, we as adults are hired for our skills. We have qualifications, degrees, and references, but we are fired for our behaviors. This is one of the most overlooked parts of being a teacher because it has nothing to do with the standards that we worry so much about. 
She also explained that social behavior is just a judgment. It's all about what others deem inappropriate. We have to teach our children how people expect them to act in public so they can judge them as appropriate. I submit that we also need to help others understand acceptance in a slightly smaller standard. What I mean is...don't be so quick to judge. 
One of the breakout sessions I attended was a friend of mine, and a fellow Partners In Policymaking graduate, Ellen Hefner, who discussed a program she had worked on to help middle school students understand People First Language. There was a panel of the students who discussed how they had developed skits and performed them to the school. These skits explained how words can hurt people, and how you should make sure that you are using appropriate language. It's a learn-by-example style of program. The students said they we're surprised by how quickly the other students took to the program. I really love this idea because kids don't want to listen to a bunch of old people, but they will more likely listen if their peers say it. 
The second day was supposed to kick off with a keynote speech by Temple Grandin's mother Eustacia Cutler. However, she had an ear infection and was advised by her doctor not to travel. So as a last minute replacement Jan Moss, a mother of two adult children with disabilities, and a long-time advocate in the state, stepped in and did a great job. She told us a few stories about her children, but the lessons behind them were powerful. She told about how her son with developmental disabilities had to have heart surgery once, and the doctors told her that she didn't have to go through with the surgery. She asked, "Won't he die if we don't?" The said yes, and she knew they were saying, "This could be a better choice for him." Granted this was a few years back, but it's the way of thinking for many. She went home and hid in her bed, which I'm sure many of us have done before, and when she asked her husband what they were going to do he replied, "All we have to do is love him." 
This is the truth. Anything else I write about boils down to those words. We have to do what is best for the child. That's what I'm constantly saying, but that breaks down to just loving them. We just have to love them, each and every one. 

Sunday, November 16, 2014

Seeing Is Believing

Pervasive Parenting 
By Kodey Toney

Seeing is Believing 

Don't believe everything you hear or read about autism. There are so many myths that until you actually live with, or work closely with, someone on the spectrum you can't know for sure. One such myth is that people with autism are non-emotional or robotic in nature. While I'll admit that may seem true on the surface, you shouldn't look too far into that Sheldon Cooper style of autism. 
I can't speak for everyone on the spectrum because everyone is different. I can tell you how Konner is, and how he reacts to certain situations. 
I got a phone call this afternoon  and it came across the to screen as my wife. When I answered I was surprised that this sweet little voice on the other end said, "Daddy, I'm sorry that I kicked you." It was Konner and he was talking about something that happened earlier in the morning.
You see Konner carries feelings with him for a long time. When someone does something that hurts his feelings it can affect him for a long time. 
He also often feels remorse for things that he does because he knows the difference between wrong and right, but his emotions get the better of him and he can't help it. 
We are having trouble with him lately because he will lash out and hit or kick just because something doesn't go the way he thinks it should. While I have to admit that he may get his temper from me, he has the hardest time keeping it in check. If he says something and no one responds he will get upset and kick at them. Rarely does he actually land the kick, but he tries and that is enough to get him in trouble at school. 
He then gets upset with himself because he knows its wrong and he feels remorse. 
He will also come to me with tears in his eyes and tell me he's sorry for things he's done earlier in the day or even week. 
On the other hand, he had a homework assignment the other day that gave choices of emotions to feel in the blank. It would say something like: The boy was (excited, sad) when the puppy died. He gets really confused on these for some reason, and that is common with people on the spectrum. 
He also had to watch a video in school that the Oklahoma Highway Patrol presented about a car wreck. When the character in the crash began screaming and became hysterical Konner started laughing. He was just reacting the way he always does, but he was scolded for his actions even though he never meant anything by it, and really couldn't help it. He just doesn't process those feelings the same way. 
While emotions are confusing to him, he does feel them. He feels sad when his feelings are hurt. And he feels angry when something doesn't go his way. That's not so unusual is it?

Feel Like A Number

Pervasive Parenting
By Kodey Toney
Feel Like A Number
I receive weekly newsletters from Disabilityscoop.com, and the one I read this week scared me. It hit home with something that happened earlier this week. We had a meeting with his principal because Konner has been acting out and having discipline problems. He even tried to kick the principal and has been punished. The problem has been how to punish him when he acts out like this. Many times it’s due to frustration with his disability. I want to tell you a little about the article and how it could impact your child eventually.
The article titled “For Many With Disabilities, Special Education Leads to Jail” was eye-opening for me, but it confirms something that I have known for the past couple years. The school system is not prepared for children with disabilities, including on the autism spectrum, and in turn many of the children are on a path to destruction at an alarming rate. There has to be some help, and to be honest I’m not sure the answer, but we have to work together to make it happen.
The story starts off with an account of a 12-year-old student who was handcuffed in front of his peers and put into a police car outside of his middle school because he lost his temper and hit several teachers. This, as well as Konner’s actions with the principal, is unacceptable, but they also may be unavoidable.
I have told Konner more times than I can count that he cannot hit or kick anyone. This is a problem we have at home constantly, but I’m almost at a loss of what to do. Most of the time he is just kicking or hitting at us as opposed to trying to actually land a blow, but I know that this is also not acceptable.
What we try to do instead is cut the behavior off ahead of time if possible. If Konner is showing signs of frustration or stemming then we know that a meltdown could be right around the corner. This is when we try to make him calm down and remove him from things that could cause him to have a blow-up.
Children with disabilities, especially autism and Attention Deficit Hyperactive Disorder (ADHD) are impulsive though. This is why we have a problem with cutting off the action.
According to the article, one out of every three children in the juvenile justice system has a disability. These can include emotional disabilities such as bipolar disorder or learning disabilities like dyslexia. Some research even shows numbers as high as 70 percent.
According to data from the Bureau of Justice Statistics, a majority of adults in prison have a disability. More alarming is the fact that this number has grown 700 percent since 1970. This number will continue to rise if we don’t find a way to reach out to these children and help them early. That is our job as parents, advocates, and educators.
I don’t know what to attribute this to, though some experts look to the school systems for blame. I think it’s a combination of the systems as well as the parents. The parents often times don’t work to help the schools understand their children’s disability. Many don’t even take the time to understand it themselves and stay in denial because it’s easier than being proactive.
The schools often find it difficult to help the child and find it even easier to just send them out of the classroom instead of working with them to be included.
According to the article, many schools just “lack mental health care, highly qualified special education teachers and appropriately trained staff. Federal law requires schools to provide an education for kids with disabilities in an environment as close to a regular classroom as possible.” The law also says that a child cannot be dismissed for something that is related to their disability. This gets very complicated, but is helpful in certain cases.
Again, I don’t have all the answers, but I have believe that educators and parents need to work together as hard as they can to help our children avoid being statistics.

Love Is A Battlefield

Pervasive Parenting
By Kodey Toney
Love is a Battlefield
There's an old saying that you may not win the battle but you can still win the war, or something like that, but as a parent I’ve learned that with kids you have to pick your battles in order to win the war.
This is especially true with a child on the spectrum. When trying to deal with a child’s behavior issues there are many factors that can be involved in those actions. Sensory issues and communication are probably the top two influences. Let's not forget that behavior is communication. If you have a child showing behavior problems they're probably using that to communicate, and usually those stem from sensory issues.
So when we want to address these problems there are a couple factors that I always try to look at first. This doesn't mean that I always do the right thing. It just means that I try to think, “Is this a battle I want to pick now or is it something that can wait?”
I think time is one of the biggest factors. Do I have time to actually address this issue, and do it calmly? Is trying to pick a battle in the middle of Walmart, or at a restaurant where you're already stressed, a good place to start this? The answer is probably not. You want to pick these battles, usually, when you're at home and you have time to calm yourself and the child, and explain what the problem is and why they shouldn't be doing it. An example is, if your child is stemming by putting their shirt in their mouth, and stretching it out, or getting it all wet with spit, is making them stop in the middle of a restaurant the best time to deal with that? You should probably wait until you're at home and you can explain why that is a problem. 
The next factor would be safety. Is what this child is doing a safety issue for them or someone else around them? If it is you need to address it immediately and make sure that nobody is going to be harmed. If not you may want to wait until later time. If your child is stemming by banging her head against the table or hitting himself in the face then you definitely want to stop this immediately. I know this seems like a no-brainer but in some cases parents may feel like they need to let the child go rather than bring attention to themselves. Remember in that situation that your child's safety is way more important than what other people around you think.
The next thing is questioning whether the lesson is worth teaching at the time. For instance, if you are in a situation where the lesson is important right then and there is a good teaching moment I would say go ahead with it as long as it's not bothering anybody else, and sometimes that doesn't even matter. If your child is going to learn an important life lesson then it's best to teach in the moment. Konnor used to get upset if anybody opened the door for him, so trying to work on that at home is not a good place. He didn't mind anybody at home getting the door for him but if we were out in the public and decided to walk into a restaurant and someone opened the door he would get upset, so the only real place to work on that was when it was actually happening.
I think the final factor is exhaustion. Everyone knows it’s hard raising a child with or without a disability. However, when raising a child with a disability sometimes you're just too tired to fight, so you just let things go. I don't see a problem with that, again as long as nobody is being injured. Sometimes it's best to just wait and pick that fight when you're a little bit more prepared mentally and physically.
As I've always said I'm no expert, but then I'm not really sure anybody is when it comes to raising a child, especially on the spectrum. It's just a trial and error thing. We have to try things and sometimes they work sometimes they don't. In this case I hope what I'm doing is giving a little bit of insight and advice on to my philosophy of coping with the small battles. In the end hopefully we can win the war which is making our child a little bit more prepared for life.

Northern Exposure

Pervasive Parenting
By Kodey Toney

Northern Exposure

This past weekend was family reunion time for us, so we all packed up and made the trek to Kansas City to visit our folks from up north. On our way I noticed something in the backseat that gave me my inspiration for this week's article. 
We started on our drive and everything was going well when about two hours in I looked in the backseat to check on the boys. All I can see is Konner's torso sticking out from under a blanket. I ask, "Konner, what are you wearing?" 
He replied, "Nothing, I don't really like clothes." 
I had to laugh a little as I realize that he is under the covers naked. I found out later that he had underwear on, but it's still funny. 
You see, he really does, like a lot of kids on the spectrum, hate clothes. One of the first things he does at some place he's comfortable is strip down to his undies. This is probably because of sensory issues. Children with autism tend to have sensory processing problems. This is where the filters on their senses are either lessened or heightened depending on the child. 
I feel this is also depending on the thing that is touching them. Seams and tags on clothing can feel like teeth biting into you, according to John Elder Robison, the author of "Look Me In The Eye". This is why they come off as soon as we walk in the door. 
As I mentioned before, Konner was under a blanket in the backseat. He always carries a heavy blanket around the house with him. He stays buried under it most of the time. Konner loves pressure, and the pressure from a weighty comforter seems to calm him most of the time. He also leaves heavy coats or jackets with hoods on if he can. 
The other day I was dropping him off at my mom's house for her to watch him. It was early in the morning and she was still in bed. She asked if he wanted to get into bed with her and he said, "I can't get into bed with my pants, and shirt, and shoes, and socks on." He really just wanted to strip down and used that as an excuse. 
On the road trip I figured, he wasn't hurting anybody, and he wasn't exposed to the world, so I had no problem with it. After all comfort is important.