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.