Monday, December 29, 2014

All I Want For Christmas

Pervasive Parenting 
By Kodey Toney

All I Want For Christmas 

This week Jen was wrapping presents and realized that we had a few more gifts for Kruz than for Konner. We began to talk about an extra present for Konner, but he's so hard to buy for. He doesn't tell us much about what he wants. If he does it's pretty vague. He may say a new train, or Minecraft stuff. So what do you get?
First of all let me say that I know how fortunate that we are that he can tell us that much. I can't imagine how tough it is to buy for a child who is non-verbal. I don't speak of things I don't know about, so I won't go into this, but I will say it is still tough to determine a good present for a child on the spectrum. 
Do you look for something that can help them with their therapies and ongoing issues? It seems that a new weighted vest, or device to help with motor skills might be more like work than recreation. With the high number of therapies throughout the year wouldn't it be better to give them something fun?
Then how do you know what they want? I know Konner likes trains, but he seems to have every one of them known to man. I can let him pick them out, which we usually do, but that defeats the surprise factor. 
I heard recently that some parents get four things: something they want, something they need, something to wear, and something to read. This is a great idea, but let's break this down (I am watching football while I'm writing this by the way). Something they need is probably easy, and can fall into the something to wear. However you should probably not get them confused. The need might be a new weighted blanket...if you want to go there. Don't forget that the thing to read can be for you to read to them. If your child can't read that doesn't mean they don't need for you to read to them. Something to wear is good, but what kid likes socks and underwear? 
So that brings us back to the want. Regardless of need, reading ability, verbal ability, clothing taste, or any other variable there is one thing all children want regardless of disability...love. Sounds cheesy I know, but as long as you are trying to understand what they want, you are buying things with their interest in mind, and you love them your going to make it a good Christmas. 
Merry Christmas from Konner, Kruz, Jennifer, and Kodey Toney. 

You Work Hard For Your Money

Pervasive Parenting 
By Kodey Toney

You Work Hard For Your Money

When there is a child in a classroom with special needs it is oftentimes necessary to have a helping hand for the teacher. If you are fortunate enough to have an aide in the classroom then there is usually a little misconception about their job. In the past couple weeks I've talked about a letter that was written by Konner's aide last year that outlined some great tips for helping a child on the spectrum. Within her text she also included a small description of what she should be doing to help out. I'm going to include that in today's column, but I also want to add a few things I think people overlook.
Let me start by saying that I have the utmost respect for teacher's aides. They are often overlooked and under appreciated. They have tougher job than most give them credit for, and work for an average of less than $15,000 per year in our area. 
While most see them as a glorified babysitter, they are much more than that, and if they are really good they are worth their weight in gold. However, we know the Department of Education isn't paying in bullion bars. 
Some may feel that their role is minor, but for the child they are looking after they could be the most important person in their life for almost seven hours a day. 
So what is the role of a teacher's aide, also known as a paraprofessional? From the words of Mindy Hale, who worked for about five years with children with special needs, including three years with Konner: 
"I would like for everyone to remember, I am an aide, not a teacher. My job is to make sure that the student is safe and not going to do harm to himself or anyone else. You, the teacher, are in charge in the classroom. You will need to be the main one in the class giving him direction and corrective instruction. He will need you to have a set of rules, not only for your class, but some designed specifically for him. I will step in when the situation is getting uncontrollable, and do what I need to to calm the situation."
This is a short, but very good overview of an aide's duties. You see, as I've said before, the ultimate goal is for us to not have a para in the classroom. That person's job is to make her job obsolete. Independence is the ultimate goal. The way to do that is for the teacher to do as much as possible and the aide only to step in when needed. 
So some wonder what the aide is doing if they are not helping the child. A big part of the aide's job is collecting data for IEP purposes. The IEP includes goals, and in order to know if that child is achieving those goals they must have data. The aide usually has data sheets to keep track of how many times the kid raised his hand for permission to speak, sat in his chair without wondering around, held his pencil correctly, etc. Whatever the IEP says they should be doing, the aide records those things. They will also step in to assist, but only when needed.
The data is important because if those goals are not being met the teacher, administration, and school could be held liable for the child's progress. 
If you are an aide, teacher, administrator, or parent I hope this gives a little insight into the day-to-day duties of some of the hardest working members of the school staff. 


For The Good Times, Pt. 2

Pervasive Parenting 
By Kodey Toney

For The Good Times, Pt. 2

Last week I shared a letter that Konner's former aide wrote to his teachers at the end of last school year. There was so much to share that I had to break it into two parts. So here comes the second installment of "For The Good Times". 
Mindy wrote, "During a test, if he needs to leave the room so he can concentrate, let him. Also, try not to give him timed tests, which is in his IEP. He tends to hurry and not try." I think this has as much to do with the Attention Deficit Hyperactivity Disorder (ADHD) as it does the autism. He looses interest, doesn't try very hard and just wants to be done on most tests. He knows the material, but chooses not to show off...at least that's my theory. 
"During an assignment with lots of writing we have figured out that using (a word processing device) is a better way to get assignments complete. He loves to type. I know he will need to write at times, but you may have to accept what he has finished! (In his IEP)" Modifications need to be considered and made. You have to ask yourself what is more important, the child being able to write, or him knowing the assignment and finishing it? 
"He will make noise and jump around in his seat. This is just his way to work out his anxiety. You will get used to it, but during these times use redirection, not discipline. You may see it as a disruption, but his class(mates) are ok with it! The children understand and will even try to help in some situations." One of the coolest things, excuse me if I'm a little giddy about this one, is that his fellow students, especially those who have been with him since head start, have accepted him for who he is. That means the stims, outbursts, meltdowns, and anything else he's thrown at them; literally and figuratively. The only issues we've really had over the years have been from the new students who don't really know him yet, and adults who seem to think he is not conforming to their ways. I understand both of these, but the things he does goes back to the old saying, all behavior is communication. If he hits, kicks, acts out, screams, etc. it's for a reason. If you think a child hit you for "no reason" you need to look further into the situation. It could be from something that happened a few minutes ago, or that has been building up for a while. There are usually signs that come ahead of time to warn you that these actions are coming. 
Again, I think these are great suggestions, and they won't necessarily work for all. However, they are a great start. They will work well for all children too, not just those on the spectrum. 

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.

Take A Look at My Life

Pervasive Parenting 
By Kodey Toney
 
Take A Look At My Life
 
I was reading through Facebook the other day and found a list that I thought would be interesting. I'm always trying to find information from people with autism because they know better than anyone what it's like to live with autism. With that being said I would like to share "17 Wishes From An Adult With Autism" by Kerry Magro. I'm going to throw in my two cents worth. I cut it down to 15 for space, but I think it’s a good look into the life and mind of someone on the spectrum.
 
1. "I wish acceptance was easier to come by." I've always said that we now have the autism awareness down, we have to work for the acceptance. This is why inclusion in schools and the communities is so important. 

2. "I wish loving one another was always on our minds." What a concept, and not just for children with disabilities. It's so simple, yet it's so difficult. 

3. "I wish early diagnosis remains a high priority." Every time I speak to groups around the area I make sure to mention that early intervention is the key to a child's success. If you can get the proper tools, therapies and treatments, then your child has a better chance at a great future.

4. "I wish people would stop calling autism a disease." This is a touchy one, but one article I read stated that diseases are caused by bacteria or viruses, but disorders fall under birth defects or genetic disorders. I’m not sure on this one to be honest, but I would prefer it not be discussed unless you have regardless of its actual classification. If you’re not talking about using it to get services it’s not important.

5. "I wish that communication becomes easier for everyone with autism. Know that we’re trying." Behavior is communication. It they are having a hard time communicating they are going to get frustrated. It takes a little more to communicate with children on the spectrum, especially those who are non-verbal. They are trying to communicate. Are you listening?

6. “I wish that we find more treatments to enhance the lives of people with autism.” The treatments, as mentioned before, are the key to a good life. If you can help a person on the spectrum cope with sensory issues, motor skills, and communicate then you will help them with their future.

7. “I wish that insurance for autism will get passed in all 50 states.” This is something that has bothered me in the past. When talking with a local representative he explained that it’s a tough situation, and that it’s sad that insurance will pay for Viagra, but not for autism related services in many cases.

8. “I wish the government would understand the need for services for people with autism in schools.” What little is available is limited, and the schools are either unaware of the laws, or bound by financial restrictions to find ways not to provide them.

9. “I wish individuals with autism can one day live their lives independently.” This is what we wish for all children, on the spectrum or not. Like it or not, one day Jen and I are not going to be around and Konner is going to have to live on his own. That is the plan, and all of these other things that we are working on, classroom social issues, life skills, education, etc. are all steps toward that independence.

10. “I wish I was capable of helping more.” I found this one interesting. To me it doesn’t seem like Konner is concerned too much with helping, either around the house or otherwise. Not to say he doesn’t help if asked, but he doesn’t seem to like it when he is asked.

11. “I wish people would stop using the words “socially awkward” and “retard” in a negative way.” Some may remember my column on stopping the use of the “R” word, but it’s socially unacceptable and should be stopped.

12. “I wish for more awareness for all with disabilities. Those of us living with a disability are doing our very best.” One of the things I had to learn is that there are more disabilities out there than just autism. I lived in autism world for so long that I was surprised to find out that other disabilities have similar problems and issues as autism. The parents have the same obstacles as we do. We can all learn from each other and lean on each other.

13. “I wish for those who are on the spectrum and for those who love someone on the spectrum that you know we’re moving forward every single day.” I have to constantly step back and take a look at where we were this times last year, two years ago, and so on. It’s amazing where we’ve come from.

14. “I wish all of our voices could be heard.” I’m fortunate, and I know it, that Konner is verbal, but I always think about those who aren’t and just think that there’s some way to get them to communicate. I know they all have something to say.

15. “I wish everyone will follow the words of one of my favorite performers of all time, Michael Jackson, who sang in his song “Man in the Mirror”: If you want to make the world a better place, take a look at yourself and make a change.” Nothing will ever change if we don’t make it happen. If you’re waiting for someone to take the first step you need to look to yourself first.

I hope this helps you see into your child’s mind.

Get Back To Where You Once Belonged

Pervasive Parenting

By Kodey Toney

Get Back To Where You Once Belonged

I’d like to get back into the discussion of Individualized Education Program (IEP) meetings this week. I think an important aspect of getting what you need, want, and are entitled to in an IEP meeting is the way you communicate with those in the meeting and on the team. This week I want to look at some ways to communicate without completely alienating everyone in the room. Hopefully these tips will help others understand that you know what you’re talking about, and that you mean business, but are there to work with them to get what is best for the child involved.

Much of what I’m going to discuss comes from the Oklahoma Parents Center’s IEP training power point. There is a section on developing assertive communication skills that I will borrow from.

The first tip is to make sure that you say what you wanted to say in the meeting. This doesn’t mean that you have to be aggressive or loud to get your point across. You just want to make sure that your ideas and points are heard by all involved. A good way to make sure of this is to make notes ahead of time. Jen and I always make a game plan the night before. This includes making sure what the goals are that you are asking for ahead of time. You want to make sure that they are reasonable and within your rights. You also need to know what your rights are, so you need to get your laws and regulations together if you’re worried about this aspect.

While you’re in the meeting make sure that you are direct. Sometimes people don’t say exactly what they mean because they are afraid of hurting someone’s feelings or offending someone. It’s best if you just come out and say what you need to say. Be tactful of course, but get your point across.

Make sure that you stand up for your rights. One of the things that most parents are afraid of is that schools will run over them, and given a chance they do sometimes. The problem is that most schools have a tight budget. They don’t want to spend any more money than they have to, but you have to think about the child first and the budget second. This is why it’s important to know your rights. You can go to the Oklahoma Department of Education website and find the Special Education Handbook. This gives you just about everything you need as far as regulations go. You can also find information at www.wrightslaw.com. I always say that there’s nothing a school fears more than an educated parent. This doesn’t have to do with diplomas and degrees. It means that you know your rights and stand up for them.

Make sure that your body language is consistent with what you are trying to convey. If your mouth says something and your facial expression says something different nobody will take you serious. It can also contradict your intentions. Be very careful.

Make sure that your voice is strong and direct. This, again, doesn’t mean to yell, but timid is also not good. You have to find a balance and make sure that they understand what you are asking for and why.

Make sure that you feel good afterward. There is nothing worse than leaving an IEP meeting thinking that things didn’t go as planned. If you walk out with the feeling of anger, aggravation, or despair you didn’t do what you came to do. This doesn’t mean a feeling of winning. As I’ve said before, it’s not about winning or losing. It’s about doing what is best for the student. You want to make sure that you got what was necessary to help the child accomplish their goals and succeed in life.

Sitting, Waiting, Wishing

Pervasive Parenting

By Kodey Toney        

Sitting, Waiting, Wishing

My wife, Jennifer, is constantly looking for ways to help the children she works with and the other teachers cope with children with disabilities in their classrooms. She recently found a really good site recently about helping students in the classroom with disabilities, and I wanted to share a little of what the article talks about. One thing that I want to stress, and always try to share with teachers when I talk to them, is that this works well for ALL STUDENTS. Much of the advice is good for any child and may even work well for parents at home if you adapt it for your family time.

The article from healthcentral.com is titled “Suggestions for Classroom Accommodations and Modifications for Children with Autism”. You can find the full text at http://www.healthcentral.com/autism/c/1443/140596/accommodations/?ap=2007.

Let’s start with the question; What are accommodations? The author Eileen Bailey writes, “An accommodation changes a procedure in the classroom but does (not) result in a change in what is measured.”

This can included extended time on tests and classwork. Sometimes with children on the spectrum it takes a little longer to process the information. Extra time can help the child take their time to better understand the information rather than just write things down. In the past Konner has known the answers, but has just written down something, or clicked a button so that he could get done quickly because he knew he only had a certain amount of time. This makes sense when we talk about using visual timers with children on the spectrum because they know that when the time is up they have to move on to the next thing on the schedule. We need to let them know they can take their time and do their best.

Seating in the front of the classroom is a good accommodation. This is good for many children, but when you think about a child with Attention Deficit Hyperactivity Disorder (ADHD), or any other issue that affects their ability to concentrate it’s a good idea to put most of the distractions behind them.

With any child it’s a great idea to have constant communication between the parent and the teacher. If they are not on the same page it will impede the child’s learning process. It’s good for the teacher to let the parent know what they are working on, what problems they have had in the classroom, and what discuss ways they may change those problems. Don’t forget that nobody knows the child better than the person that spends the most time with them; the parent. We have used a communication notebook with Konner. This is just a good way for the right hand to know what the left hand is doing. When the child gets home the parent can look at the communication notebook, see what they did at school, and it helps them start a conversation with the child.

So what are modifications? This is an actual change in school work or how the school work is completed, according to Bailey.

You can reduce the number of questions on a test or homework. You can still assess how much a student has learned despite overwhelming them with tons of problems. If it takes a student longer to process information, but they still have the same skills, you don’t need 40 questions to determine this. You can do the same with 10 questions.

Don’t forget that the child has been trying hard to conform to the classroom all day. They have been working against their body all day to sit in a chair and not have a meltdown. They have been battling with air conditioner noise, loud lunchrooms, different smells, and flickering lights. When they get home it’s time for them to let go a little. The homework load can be overwhelming and unnecessary as well. Don’t get me wrong, homework is necessary, but a little goes a long way, literally. We can sit at the kitchen table working on homework, arguing, and fighting for hours sometimes. This is not productive, and can make the child resent school, teachers, and parents. You can always break assignments into smaller parts.

Using a calculator during a math test is not the worst thing in the world. I agree that a child should learn how to do math on their own. I also agree that the more they do it without a calculator the better they’re going to be. However, if we know that they can do the work without a calculator then what would it hurt to let them use a calculator during the test? This is especially true when they are timed, or not given less work. I work the national ACT testing and they are allowed to use a calculator. When I add up things at my job I am allowed to use a calculator.

I’ve talked in the past about visual or written schedules. They are very good when you are trying to let a child know what’s coming up. Transitions are tough for a child on the spectrum, but if we can show them a picture of their next move and let them know a time limit it helps. For example, if you are moving to the gym next you can show the child a picture of the gymnasium and say, “Class, five more minutes and then it’s time for gym.” You will probably find that this warning with make a huge difference. This is good for all children.

You can give instruction orally and written. This is another that is good for all children. Everyone processes information differently. There are auditory learners and visual learners. If you give instructions both ways you are helping both sets of students. You can also refer back to the written if they are not doings something the way you told them. Classroom rules are a good example.

Allowing extra time for students to respond to directions is a great idea. This goes with the earlier statements, but if you ask a child on the spectrum to do something then count in your head for 10 seconds or so to give them time to process the command. If that doesn’t work you may think about rephrasing the question. The less words you use the better.

If you can, allow another student to do something first so that the child on the spectrum has an example. They are trying to learn by following their peers, so use a child close to them as a positive example. In that same vein, try to use role-playing situations to help with social skills.

Pairing up with other children when possible on assignments is a great idea. This helps with those social skills and helps the child that is typically developing to learn from and accept others with disabilities.

Whenever possible it’s a good idea to incorporate the child’s interest into the lesson. For example, if you have a child that loves dinosaurs then use dinosaurs to help with a lesson on adding. If they like trains then use the trains in an English lesson if possible. This again works for all children.

When possible, allow the student(s) to move around. If that child is still earning, but can’t sit still in a chair for long then what is it going to hurt to let them get up for a few minutes and move around? There needs to be limits on this, but if you find those limits it will work wonders for helping the child conform to the classroom.

These are only a few suggestions, but I think they will help your school year go a little smoother if you try. Don’t forget that nothing works 100 percent of the time, but if something isn’t working don’t give up on it. You can move on to the next thing and come back to it later.

Don’t forget that no matter how hard it may seem to change the way you are teaching for a child with a disability, it is harder for them to learn because of their disability. One of my favorite quotes, and one I’ve used before, is “If a child can’t learn the way we teach, maybe we should teach the way they learn” – Ignacio Estrada.

Meet In The Middle

Pervasive Parenting
By Kodey Toney

Meet In The Middle

We had an Individualized Education Program (IEP) meeting for Konner last week, and although it was a review meeting, just to discuss with his teachers the goals and plans we already have in place, I felt like I needed to address the group about something I feel very strongly about. Call it my philosophy on helping students with special needs, but I feel like I should share it here. I think it's important for all readers, whether you're a parent, administrator, teacher, advocate, or even a student. 
While this is not verbatim, I'm going to try and explain it as close to what I said as I can remember. 
There always tends to be an "us-against-them" mentality in the room. This is amplified when we look at things that may be happening with the child at school. All of that needs to be put to the side in the IEP meeting. My philosophy is simple; let's do what's best for the child. The parents should have this goal anyway, but sometimes they don't, or they lose track of that because they are trying too hard to fight with the school and win a battle. The school should be doing this, but they have money problems that they have to deal with. 
I advocate for lots of families who attend lots of schools in the area. I never ask for anything for my child that I wouldn't ask for any other child. I also never ask for anything that isn't within my child's rights. 
The Americans with Disabilities Act (ADA) actually got its start in 1973 with section 504 of the Rehabilitation Act.  However, it opened the door to many other great laws and regulations to help our children with special needs. One of these of course is the Individuals with Disabilities Education Act (IDEA), which states that my son, and others with disabilities, are entitled to a free and appropriate public education (FAPE) in the least restrictive environment (LRE). This means that Konner can, and will, get a public education in a classroom with his peers. Now, it's a little more complicated than that, but honestly not much. 
I think what happens is that teachers, after years of teaching, do a couple things. The get into a routine that is comfortable and they don't want to change the way they do things. I don't blame them. As I've said before, we're all creatures of habit. However, when you have a child in your classroom, which by law they are entitled to be in your classroom, then you have to try to help them as much as possible. 
I also think that teachers get burnt out. They forget why the went into the teaching field. We know it's not for the money. They wanted to help children learn. That's what they should be doing. Working with children to learn things that they need to succeed. 
What I think some teachers either forget, or just don't know, is that, again by law, they are to be helping children succeed later on in life. It's not just about reading, writing, and arithmetic. They have to work to help the child with social skills. They have to help them cope with and tolerate issues in the classroom. You can't forget that the goal for a child like Konner is to one day be independent. In ten years he will hopefully graduate and be out in the real world. That's what we 're working toward. That is, believe it or not, according to law, part of the school and the teacher's duty. 
I hope that every teacher, every parent, and every person that works with children, with or without disabilities, remembers that what they are doing should be about the child, that should be the focus.

Wednesday, September 17, 2014

Round and Round

Pervasive Parenting
By Kodey Toney

Round and Round

Last week I tried to give some advice on preparing for an Individualized Education Program (IEP). This will be round two of that attempt at helping you get the most out of your plan.
If you are going to ask for what your child needs make sure that you have your ducks in a row. It's best to have some sample goals and objectives written ahead of time. You can do a little research online and find some that fit your situation, but if you have some ideas in hand it can help the team better understand what you want. 
Make sure those goals are measurable. According to "Writing Measurable IEP Goals and Objectives" by Barbara Bateman and Cynthia Herr, there are three questions that can help with this: 

1. What are the child’s unique needs? 
2. What services will the school employ to address each need? 
3. What will the child be able to accomplish as a result of the services?

The following site has some good examples:http://www.attainmentcompany.com/sites/default/files/pdf/sample/WMIEP_Sample.pdf
I've said this before, but it's important that you know your rights. At every IEP meeting you should receive a copy of the parents rights. The Oklahoma Department of Education has a copy athttp://ok.gov/sde/sites/ok.gov.sde/files/SpecEd-ParentsRights. It's a good idea to read these and make sure you understand them. If you don't you should contact either the department of Ed., the Oklahoma Parents Center, or the Pervasive Parenting Center for help.
If necessary you should contact an advocate for assistance. Through the Pervasive Parenting Center I will act as an advocate to help you in anyway I can. If I can't I know people who can. This is what the resource center is about, helping find answers to questions and needs you might have. You can contact me atktoney@pervasiveparentingcenter.org.

Sultans of Swing

Pervasive Parenting 
By Kodey Toney

Sultans of Swing

Since IEP season is in full swing, and I've been working with several parents lately on their children's Individualized Education Program (IEP), I thought I would go over some things that might help you get prepared for your next meeting with the school. 
Here is a short list if things I would recommend to be prepared to meet with your team. 
You want to make sure that you have all the information from the school that you need to help provide your child with the best education possible. You can, and should, request your child's complete education file contained in school records. This can include grades or report cards, teacher notes, classroom papers, discipline reports, progress reports, correspondence, and any tests or evaluations. These can be vital in determining what services and modifications may be necessary in the IEP.  This can also help you determine if there are any new evaluations needed.
A care notebook is a great way to keep this information in order. The Oklahoma Family Network provides information and training in putting one together. If anyone is interested in more information about the notebook you can contact me atktoney@pervasiveparentingcenter.org.
This means that you should especially request any evaluations that will be presented at the meeting. 
I would make sure that you make a request for this information early, a week or more out, and do it in writing. You should always do any correspondence with the school in writing. Pete Wright of Wrightslaw always says, "If it's not in writing it wasn't said."
If you talk to someone, and they say they are going to do something, but it's not in writing, it's a good idea to send an email soon after explaining what was said. For instance, if someone says that they will do an evaluation on your child for speech, I would email as soon as possible and say, "It's my understanding, per our conversation today, that you are going to do a speech evaluation this week. Am I correct in my understanding?" This does two things. It starts a paper trail, and it prompts the other person to answer your question. 
One thing you should remember is, if you are not satisfied with the school's evaluation you can request an outside or independent evaluation. 
I've said this several times, but it's worth repeating, it's not good to have an us vs. them mentality. Make sure that you are trying to keep open communication with the teacher and others at the school. You know your child well, and they know what's happening in the classroom. This is a "team", so team up and help your child.
You may even want to request to observe the teacher and student in the classroom, but I will throw out a little caution on this one. First of all, your child will probably act a little different if they know you're in the room. The teacher probably will not act the same either, but they may not welcome you with open arms either. 
Make sure that if you currently have an IEP in place that you review it. If it's been a while since the last one then there are things to look at and make sure that the goals are still appropriate, and you are still heading in the right direction. 
This is a good start, and I will try to follow up next week with more information. 
As always, if you have any questions, or you need someone to help advocate for your child in a meeting contact me at the email above.

On The Road Again

Pervasive Parenting
By Kodey Toney

On The Road Again

I'm constantly questioned about resources available in our area. In fact, the main reason that Jennifer and I started the Pervasive Parenting Center was to help bring resources to this area and show what is available. The upcoming On The Road event will showcase many of the resources both state-wide and local that are available to help your family.
I have been asking Sally Selvidge for a couple years to please bring this event to Eastern Oklahoma, and she finally agreed last spring. 
Sooner Success sponsors the one-day conference to help families navigate the disability world. 
There will be more than 20 representatives on hand to explain what their program can do and to answer any questions you might have. These include TEFRA, Oklahoma Family Network, Partners in Policymaking, Epilepsy Association, Easter Seals, Oklahoma People First, Sibshops, DDS Waiting List, Oklahoma Disability Law Center, and Oklahoma Parents Center, just to name a few. 
The conference will be held Tuesday, Sept. 16, from 8 a.m. until 3 p.m. It will be in the Costner/Balentine Ballroom at Carl Albert State College in Poteau. Lunch will be provided and everything is FREE. That's right, it costs you nothing. 
I understand that this is being held on a weekday, but I promise it's worth the time. Even if that means that you need to take off work, you will be glad you did. 
There will be an assistive technology demonstration at lunch.
This is something that can be very beneficial, and is important for your family.
All disabilities are included. 
You can register at:https://soonersuccesspoteauotr.eventbrite.com/ 

When The Sun Goes Down

Pervasive Parenting
By Kodey Toney

When The Sun Goes Down

It's been a week since I wrote the last column on a plane to Virginia. This time I'm again on a plane, and on my way back to Oklahoma. This week has been, in a word, overwhelming. 
In addition to learning more about disability law from some of the top lawyers and advocates in the world, I also had the good fortune to make new friends. After all networking is one of the best ways to help advocate for your family and others. 
Despite a two-day journey back home this weekend, courtesy of Southwest Airlines and their delays, reroutes, and cancellations, this trip was great.
I could bore you with a bunch of the legal mumbo-jumbo, but instead I'll tell a few of the personal lessons I learned.
The first that comes to mind is something I think we have a tough time with still. Don't let anyone, including the New York Bar Association, tell you you're dumb or can't do anything. Marilyn Bartlett spoke to use about the time that she took on the NYBA because, despite her learning disabilities she earned her law degree but was not allowed to take the bar exam with extended time. She was made to feel dumb, worthless, and lazy because of her learning difference. 
It's a shame that others can't understand that just because it's difficult for you to learn a certain way doesn't mean that you are dumb. It means that we need to find another way to make you shine.
The next lesson I found very useful. If you advocate for anyone other than yourself or your child you can't quote the law or it's considered unauthorized practice of law. Kayla Bower of the Oklahoma Disabilty Law Center scared the advocates a little on this one, but for good reason. This can get you into a ton of trouble. This is why it's important to be creative with the way you let others know that you know the law and expect them to abide by it. One way I'll share with you is to ask them how they interpret the issue at hand. Show them the law or statute and ask them what they think it means. 
My new friend Jim Comstock-Galagan taught me a couple things, but one was that you can use personal characteristics to help others understand your standpoint. They have to relate to your cause, but if they don't have disabilities or children with disabilities it can be difficult. Jim takes something personal; race, religion, sex, etc. and uses that to help them relate. This can be a powerful tool if used correctly. You're not trying to insult, just help them see why this issue is so important to you. 
He also taught me that, if you want to ride a historical landmark you have to find ways to convince the powers that be to make modifications. Jim lives in New Orleans where they have street cars from the early 20th century. The problem is that Jim, because he uses a scooter to get around, can not ride them. When family is in town and wants to ride them he cannot. He tried to work with the city council, but because they were part of the historical register nobody wanted to modify them because they felt it would alter their historical significance. He found a councilman and explained that he would like to be able to ride them, and used the mans race as a reference to help him understand why this was not right. 
Pete Wright reminded me that you have to do your homework. This may be something I've known that I was reassured this weekend. You have to know the law even if you are not a lawyer. You have to know why you can ask for the things you want and why you should. 
And from my new friend, and advocate extraordinaire, Pat Howey, I learned a lot, but most importantly I learned you have to take life one sunset at a time.

Reflections Of The Way Things Used To Be

Pervasive Parenting
By Kodey Toney

Reflections Of The Way Things Used To Be

As I'm writing this I'm on a plane overlooking Oklahoma City this morning. I mention this because as I reflect on the things I've been doing lately to help others I'm amazed at the things that have happened.
I started writing this column/blog a little over three years ago. It has been an avenue for me to get information to a large number of people. As I learn about new things going on, or have ideas and techniques fed to me by professionals and other families I try to provide that to others. 
It has also been a good way to just vent at times. The best response I've had has been with articles that let others know that they are not alone. Other people are having the same problems, or at least similar. 
I meet people all the time who say, "I read your article every week." That amazes me that I would put something out that was important enough for people to read every week.
With that, I'm also amazed at the places it has taken me. It's important for us as parents to continue to learn new things for our children. We have to stay up to date on the things that are happening and discover new resources. That is why I try to make as many conferences and workshops as possible. This is where I find out what is available to us in our rural area, and try to bring in new resources. 
That is the reason I'm on this plane this morning. I'm on a flight to Virginia to study disability law for a week at William and Mary College. This is all possible because I met Kayla Bower and Roseann Duplan of the Oklahoma Disability Law Center, through the Partners in Policymaking (PiP) program and conferences where I basically begged them to let me go. 
I got into the PiP program because a speech pathologist, Joe'l Farrar recommended it. 
With others, the Pervasive Parenting Center has been able to start a Sibshop, launch a website atwww.pervasiveparentingcenter.org, receive our 501 (c) 3 status, host several conferences including two Joining Forces conferences with the Oklahoma Family Network, provide IEP training for families along side the Oklahoma Parents Center, help start a National Alliance on Mental Illness (NAMI) chapter with help from others like Don Patchin, and work with great people like Lisa Fabian, the Tony Hawk Foundation and Peter Whitley, Darrin Zdanowski and Charles Steiger and Forgiven Skate Team, JD Danielson and Cross Eyed Skate Team, Josh Klinglesmith, Ed Mayer and many others that I'm sure I'm forgetting, to provide a great skateboarding competition in our area. This not only helps raise funds for the center, it's also a way to bring people to our beautiful area, bring in commerce, and allow the kids an outlet for their passion. 
I think the point I'm trying to make is that you have to network and explore in order to help your child. Am I saying that you need to hop a flight halfway across the United States? No, but you can get outside of your house and work with the therapists, educators, and professionals to find new resources. You can attend support group meetings and meet new families. 
I have to mention that family support is one of the greatest things to helping me help others. If it weren't for my wife Jennifer I wouldn't be able to do this. She is an awesome person and my blueprint, guidance, and rock. Our families are great in watching the boys too, and allowing us to travel when necessary. I know that most families don't have that, and I'm grateful.
I hope to share much of what I learn this week with you next week, and thanks for letting me reflect a little. Oh, and thanks for reading this.

You Are Not Alone

Pervasive Parenting
By Kodey Toney

You Are Not Alone

This week I want to talk about community. I know that this may seem like an obvious subject to some, but building a community around you and your child with a disability will help make your life easier.
I was reminded how important a strong community is this weekend when we held the Annual Skate Slam in Heavener and Poteau. The people involved in the three-day event were awesome in getting things organized and getting the word out. There were more than 100 participants, vendors, and organizers, and each worked in harmony to make the weekend go smoothly. This was because of the group that organized the event. Lisa Fabian, Darrin Zdanowski, JD Danielson, Charles Steiger, Peter Whitley, and everybody else involved (I’m sure I’m forgetting a lot of people), worked together to make things happen.

That got me thinking about how this is the same with families with disabilities. You have to have a strong core group to make the other parts of your world work together. That community controls what happens in the life of your child, so you have to try to find that harmony for things to work right.

First you have to build your community. This can, and probably will, include family members, therapists, counselors, teachers, administrators, doctors, and other families.

Some of these seem obvious, but you must get your family members, both immediate and otherwise, on board with what’s going on. This affects everything from family get-togethers, to emergencies, to just having some alone time (who knows what that really means).

The school is a good example of harmonious communities. You have to keep this in mind in order to get the resources you need for your child. This may be the one that tests your limits a little, but I promise that if you keep them in  your community and on your team things will be good for you and your child.

You must find others that have been through what you have. This will be a great part of your community. This works in so many ways. Support groups like the local Parents of Autism are great for just finding out what is available in the area, and they are a good sounding board to vent to. The Oklahoma Family Network is designed just for this type of support. They will match families to other families in their area to share resources and stories.

You have to understand that you are not in this thing alone. Sometimes it feels that way, but you will always have someone who has been there and seen some of the same things you have. We all have different stories, but in the end it’s all very alike. 

 

Sunday, August 3, 2014

I Melt Every Time You Look At Me That Way

Pervasive Parenting
By Kodey Toney

I Melt Every Time You Look At Me That Way

I'm going to discuss a topic that I've talked about in the past, but recently Konnor had a big meltdown and I want to go through what that was like from a parent's perspective to give everybody an idea of what I was thinking. 
As I've said in the past, meltdowns are different from tantrums. A tantrum is something that is preventative, and that you are able to stop if necessary. A meltdown is not easily controlled and not easy to prevent. 
We were sitting at my mom and dad's house the other day and Konnor was in another room playing on the computer while we talked around the table. I heard Konner having some minor screams and rage issues so I kept going in to check on him.
Each time everything seem to be going okay. I could calm him down pretty quickly. There were some issues with the computer that seemed to be setting him off. 
One particular time Konner started screaming and my niece went in to check on him. After a couple seconds I realized that she wasn't going to be able to control the situation, so I went to check on him.
It was at that point I realized we were in full meltdown mode. Konnor was screaming uncontrollably, and when I went to grab him he started pushing me away and swatting at me with his hands. 
He had that glazed look in his eyes. This is a look i've often talked about. If you have a child with autism and they've had a meltdown you'll know this look.
This is one of the most helpless times for a parent with a child on the spectrum. You know at this point that there's not much you can do to console the child. You can try the different techniques like hugging, joint compressions, and breathing, but once the glaze goes over the eyes there's no turning back.
It was at this point that I grabbed Konnor and remove him from the computer area. I pulled him away a little bit so that he no longer can break the computer, and as I grabbed him he started hitting himself in the face.
This was new. While Konnor has scratched himself, and done some minor hitting, This time he was actually punching himself in the face with both fists, and if I grabbed one he would hit himself with the other one.
Once I grabbed his arms to keep him from hitting himself he broke away and started hitting me, which is fine, I can take it, but I don't want that to happen to someone else. I would rather him hit me than to injure himself, so I wanted to make sure that he knew that this was an okay choice at this point. The whole time I was trying to get him to calm down. 
Rule number one with a child in meltdown mode: you're not really going to get them to calm down until they calm themselves down. Most times you just have to let it run its course. I know this is a tough thing, and I know it is one of the hardest, most helpless feelings in the world. However, there comes a point where there's no controlling them. You can try the pressure techniques. You can try the joint compressions. You can try all the tricks in the book, but you're not going to control them until they work their way through it themselves.
Well this was one of the worst meltdowns he's had in a long time. It was also quickly resolved. I just tried to talk calmly to him, which is unusual because sometimes I begin to lose control myself when I can't help him. I just kept telling him it was going to be okay. I kept trying joint compressions which wasn't working. I kept trying to get him to leave. I didn't know if there was something in that room or in the house triggering the meltdown. I didn't know if it were just a situation that was causing it. We changed medicines with him, and that could've been causing some of the issues but I had no idea. 
I just wanted to get him isolated, calm him down, and get him to a familiar place like home or my vehicle.
All of this seemed to work pretty well, though the next time it could not. You never can tell with a child on the spectrum from one meltdown to another. You just have to use trial and error. 
If you're confused about some of the topics I talked about in this column like joint compressions and the pressure techniques you can check out some past articles onBlogger.com/pervasiveparenting 
I'm not sure if any of this will help you pervasive parents out there. I hope it will, but I also just want you to know that you're not alone.That helpless feeling comes to all of us when the meltdown strikes, and we don't know what's causing it or how to make it stop.


Sent from my iPhone

He Was A Skater Boy

Pervasive Parenting

By Kodey Toney

 

He Was A Skater Boy

 

Did you know that skateboarding and autism go hand-in-hand? Neither did I until a few months ago when I received a phone call asking me about autism resources. I had a lady call me and ask if I knew of any local organizations linked to autism. After a discussion about a couple other groups I mentioned the work we’ve been doing with the Pervasive Parenting Center and she immediately jumped at the chance to help out. Lisa Fabian, the chairperson for the Nashoba Youth Foundation, had contacted a friend put her in contact with me, and I’m so glad they have involved us in the 3rd Annual Oklahoma Slam Skateboarding For Autism Awareness.

Let me start by saying that it has been an honor to be selected for this, and that Lisa Fabian has been working like crazy to organize a great event. There are skaters, vendors, and groups from throughout the United States pitching in to bring a world-class skateboarding experience to our small neck of the woods.

This will be held July 25-27 at both Heavener and Poteau skate parks. This includes skate camps and competitions throughout the three days. Prizes, music, and food will be available.

Knowing very little about skateboarding competitions I do know that there are some big names involved including Vans, Walmart, Forgiven Sk8 Team, and Anthony Mosley, one of the top skateboarders in the world.

The fact that they want to help spread autism awareness to the world is reason enough to come to the competition, but the fact that there will be some great competitions and family fun will make this a huge event for the area this summer.

The fact that the funds raised are going to help the families in this area with autism and other disabilities is just an added bonus. The Pervasive Parenting Center has already helped bring conferences and trainings to the area to help the families and will continue to do so thanks to these donations. The Center has worked to help families learn about Individualized Education Plans (IEPs) as well as finding resources and community involvement. We are working to educate families, professionals, clubs, organizations, and businesses to better serve those in our area who are coping with disabilities.

As I was researching the subject a little I found some related topics I thought would be interesting to the pervasive parents out there. There is skateboard therapy out there for children with autism. I know that there are some places in Tulsa and Oklahoma City, but I could not find any local. I think I may challenge someone to come up with that for our area.

There is an organization called the A.Skate Foundation that helps put on clinics throughout the U.S. for children with autism. They use this as therapy for the children to help with social and fine motor skills. This is a great program for the skaters involved as well because it helps them interact with the children and get a glimpse of what it’s like living with autism. Their website is:http://askate.org/.

I also saw that Facebook has a group called Skateboard for Autism. They use skateboarding to help raise autism awareness and create therapeutic skateboarding programs in the UK and US for children and adults who want to ride. Their mission is to “promote as a therapeutic tool for children and adults with autism as well as raising awareness for autism through the passion of skateboardning by various riders, outfitters, and professional skateboard companies throughout the world.” This is worth checking out too.

As I said, I would have never thought, but it is a great fit for children with autism.

For more information contact me at 918-658-5076 orpervasiveparenting@hotmail.com.

 

 

 

 

Kodey Toney, M.Ed.

Director

Pervasive Parenting Center

(918) 658-5076

pervasiveparenting@hotmail.com

website:www.pervasiveparentingcenter.org