Tuesday, March 26, 2013

Stick To Your Guns

Pervasive Parenting
By Kodey Toney
Stick To Your Guns
The end of the school year is quickly approaching, and with that IEP season is upon us. If you are not looking forward to your Individualized Education Program I hope to give some quick facts to help you through.
I’ve written some columns in the past with more in-depth advice on dealing with IEPs (see my blog at http://pervasiveparenting.blogspot.com/). This will be just a quick refresher course. I had some help with this one from my wife, Jennifer.
The number one thing to do is have a plan. I know this sounds obvious, but as Jennifer pointed out to me, it’s kind of like car shopping. You go in with a price that you want to pay, and stick with it. There is going to be some negotiation, possibly, but you have to know what you want and be firm with that. For example; if you want your child to have modified testing times then you need to make that clear, and make sure that they don’t talk you out of it. When you walk out of the meeting make sure it’s written in the IEP.
Nobody knows your child better than you. You spend more time with them than even the teacher and students. You have figured out what makes your child tick. Let them know why you want it, and then don’t back down.
Don’t forget it’s a group effort though. They call it a team for a reason. You have to work together to get what is best for your child. Don’t forget that this is why you are ultimately there. Don’t let pride, stubbornness, or vindication get in the way.
Remember the golden rule. You wouldn’t want anyone else questioning your abilities to be a parent, don’t question their ability to teach. I’ve found that if you discuss why you want something, and talk to the team in a civilized manner you will get more out of the meeting. The “more flies with honey” approach.
Know the laws. I know this one is difficult, but if you don’t know what you can and can’t have then you will never know what to ask for. There are a couple places to find this information. Wrightslaw.com is a great site to help with many of the legal issues you will come across. They have advice and resources to assist with finding the laws that govern special education. The following web address formt he Oklahoma Department of Education (http://ok.gov/sde/parent-and-family-resource-page) will help with resources for Oklahoma residents in coping with special education. The last place I will mention is the Oklahoma Disabilities Law Center (http://oklahomadisabilitylaw.org/). This group can help with all kinds of disability rights. Research each site if you have any questions, and don’t hesitate to contact them if you don’t find the answer online.
Don’t sign if you aren’t satisfied. You never have to sign the IEP until you have everything that you want included inside. If the wording is not right, don’t sign. If it’s not exactly the way you wanted it, don’t sign. One thing to be cautious of is that they haven’t written something inside. If they say, “We’ll add that in later when we type it up,” don’t sign. I’m not trying to say that the educators are trying to sneak out of providing a service. What happens is that these people are human. They are very busy, and you are one of many on their case load. If they don’t write it down in the IEP right then, it may be a day or two before they actually type this up for their file. At that time they could have, and probably have, forgotten all that was supposed to be added. Ask for it to be written in now and typed in later. If it’s not, don’t sign.
Remember though, if you don’t sign they don’t have to provide services.
The last thing I’m going to say is, don’t take no for an answer. I know this seems harsh, but if they say, “We don’t have the funds,” they have to find them; or at least give it a good shot. If it is something reasonable, and necessary for your child’s education they have to provide it as long as it is feasible.
If you have any questions about IEPs and what you may or may not be able to get for your child please feel free to contact me. If I don’t know the answer I will find someone who does.
Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at pervasiveparenting@hotmail.com. I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column. You can also find all columns archived at blogspot.com.

Monday, March 18, 2013

Moon Dance

Moon dance

Last week I talked about a book I was reading for the Partners in Policymaking class. It was one of two that I was assigned. The second was A Smile as big as the Moon by Mike Kersjes, with Joe Layden. Just like The Short Bus this one was full of great lessons and information that I felt I should share.

Kersjes was a high school football coach who doubled as a special education teacher. He eventually led a misfit band of students in the special education program to become the first group with disabilities to attend the Space Camp program in Huntsville, Al. The process to mature these students into potential astronauts led to many great moments, as often times the teacher became the student.

This story showed me what I suspected all along; the goals for students with disabilities are limitless if someone fights hard enough and believes in them. They all just needed a little encouragement and eventually freedom to perform on their own.

Without telling the entire story I'm going to give some of the highlights of the account from a parent's perspective.

One of Kersjes' favorite quotes in the book was from Albert Einstein which read: "Imagination is more important than knowledge, for knowledge is limited and imagination can encircle the world."
What a great thought. Often, children on the spectrum, or with other disabilities for that matter, are limited by their IQ. They are seen for the number on a piece of paper. In our schools we have become so reliant upon those numbers that we forget to see what lies deeper within a child's mind. The one point that is drilled home in this book is that children with disabilities have other strengths to compliment their weaknesses.
One student was a great artist, the other was really good at putting together models, and another was a good public speaker. The challenge is not finding away to "fix" their issues, but to unlock their other assets.

Kersjes made sure the students understood where he stood on this subject by pointing out the quote every year and stating, "I don't care about your IQ. I don't care about your standardized test scores. We're all equal here, and we're all going to work together, and imagination is going to play an important role in how well you do." If only all education professionals felt this way.

When fighting to get his children into the Space Camp program, which is sponsored by NASA, he listened to a keynote speaker, whom later he would have to convince to allow his children into the camp.
The speaker stated that he: "...hoped to improve NASA's education program for all mankind." Kersjes explained that he hoped "mankind" included children with special needs. "After all, he said 'mankind'. He hadn't said 'for all brilliant people', or 'all geniuses'."
Kersjes used this in his favor when talking with the lecturer. This was a great example of the equal rights that I have been talking about lately.

Of course Kersjes' idea of a genius was questioned later in the book when a fellow coach asked him his definition of the word. He stated, "A genius is someone who is very intellectual, very smart, gets a grasp of things quickly." The other coach says, "A genius is someone who takes something that's complicated and makes it simple."

In context of trying to teach children with learning disabilities how to understand rocket science this is a great statement. However, this is what I feel should be addressed everyday in classrooms. We have to adjust our way of thinking to accommodate others' style of learning.

There is a point toward the end of the book where the group is at Space Camp and has an argument among themselves.
As one student storms out the door, Kersjes decides to go after him. Two of the other boys stop him and say to him, in a very calm manner, "Coach, we don't need you anymore." This was not said in a hurtful way. It was actually to explain that they were at a point in the process where they had been trained enough, and had become such a close team that they didn't need the coach to settle their disputes.

I've always explained that this is the way that I feel about having an aide in the classroom. This is the way it's supposed to be in life. You teach your children well enough that they don't need you anymore. They are comfortable enough in the classroom that they don't need the aide anymore. It's bitter-sweet, but a great moment when it's all said and done.

I won't give anymore of the story away, but I will say that the team was successful. The group matured from a combative group of eccentrics into a close-knit team.

I recommend this book to parents, teachers, and especially special education teachers. It will open your mind to the potential of children with disabilities.

Judge Not

Judge Not

Poteau OK - The old proverb states you can't judge a book by its cover, and while this is true for most people, those with disabilities are often unfairly labeled before someone gets to know them. The past couple weeks has proven this to me over and over.

Often times with disabilities we underestimate the person with a diagnosis. We assume because they have social issues or speech problems that they can't do things the same as others. And, granted many times there are certain adjustments that need to be made, but when you count a person out based on appearance alone you may be missing the real person.

I remember watching a program once on television where a man had suffered a brain injury and had been left with a speech impediment. This had caused many to believe that he had a mental disability. His cognitive ability was not impaired by the injury, but others treated him as if he didn't know what he was doing. They felt like he was a slow thinker when he was actually very intelligent. He just couldn't easily get the thought out vocally.

While riding on the city transit bus the man was listening to a couple young kids talk about where they need to get off. They were obviously confused when the man stepped in and began to explain the stops that would be best for them. He had a great knowledge of the bus system and had memorized most of the schedule. The boys were pretty receptive to the man, but when he finished talking in his slurred speech and turned from their view the camera caught them with a look of disbelief. It was as if they really didn't know how to take this man's advice.

How would you feel if this man would give you directions?

I met a great man this weekend during the Partners in Policymaking program that said some extraordinary things about his life. He has a degree from the University of Oklahoma and currently works there assisting people with disabilities obtain assistive technologies. His struggle to get there is a great story though.
You see Chuck Roberts has Cerebral Palsy as an attribute. Chuck explained that while he has a wheelchair, it is actually his freedom. He is not confined to it; he is liberated by it. Chuck lives on his own, draws no money for assistance from the government, and pays for his living assistance by himself. He was the first person from Norman High School to graduate with multiple learning disabilities, and then went to OU with help from his family.

You see, he applied for assistance to pay for college through the vocational rehabilitation services, and was denied. Granted this was a different time, but back then it was assumed that he couldn't function in a college setting. After being rejected, his father paid for him to attend. After a few semesters he took his transcript, with great grades, to the Voc-Rehab office and said, "So I can't go to college?"

The office began to work with him on getting the paperwork rolling, but when asked what he wanted to do as a profession he said, "I want to advocate for people with disabilities." The man filling out the paperwork looked at his father, not him, and said, "How the hell is he going to do that?"

Despite his struggle this is exactly what Chuck has been doing for years.

A second gentleman we learned about was Mike Phillips. According to the AssistiveWare website: "Mike Phillips is a gamer and freelance technology writer born with spinal muscular atrophy (SMA). Philips plays games such as World of Warcraft and Unreal Tournament 2004 with just his thumb. Mike also writes game reviews, presents at conferences, wrote chapters for several books, works on a novel and is active as a photographer and digital artist."

All of this is despite not being able to move from his back. There is a short video on YouTube called "One Thumb to Rule Them All" that explains some of the struggles he has had.
Most would assume that because he has very limited mobility he can't write, play games, or even operate a computer. This is a great example of adapting to overcome.

The final example I will give is from cub scouts a couple weeks ago. We take turns doing the pledge of allegiance, reciting the scout promise, and a few other ceremonial things. It was Konner's turn and I heard a child say, "oh no" as I handed Konner the flag. I kind of played it off, but as I handed him the scout promise to read I heard the child say it again.
I again, ignored him and as Konner paused to think about what he needed to do I heard him say to the kid next to him, "He can't read it." As Konner began to recite the promise without actually reading it, because he has it memorized, I was proud.

After the ritual part of the meeting was finished I sat the boys down and began to explain to them that Konner was an excellent reader, and that he was very intelligent. I then explained autism to them. They assumed because he was socially awkward and has to think before he speaks that he was incapable of doing what the other boys could. The scouts were very impressed with his abilities, and earned a respect for Konner.

We should always get to know people before we make assumptions about their capabilities in any area.

Sunday, March 3, 2013

The Magic Bus

Pervasive Parenting
By Kodey Toney
The Magic Bus
I’m constantly reading and trying to find new ways to understand the struggles that Konner, and others with disabilities, goes through on a daily basis. As part of the Partners in Policymaking class, I was assigned a couple books to read. One of these was The Short Bus: A Journey Beyond Normal by Jonathan Mooney. I think some of the information in this book hit me in an eye-opening way, and I would like to share some of the high points.
Mooney was labeled as “dyslexic and profoundly learning disabled” as a child. He rode the “short bus” and endured the tag that came along with that. In order to overcome this childhood embarrassment he decided to actually purchase a small bus, remodel it to be a recreational vehicle, and traveled throughout the United States to talk to others who have overcome the label of the attributes that they were given at birth. The stories that came out of this trip are inspiring and eye-opening.
When Mooney encounters a child named Ashley who is hearing and vision impaired he questions the value of her life. He writes:
“Ashley confronted me with my own deep prejudices about what it means to be a valuable human being. I didn’t know if I could truly value a bod that was so damaged. Ashley also challenged some of my ideas about intelligence. If Ashley couldn’t hear, speak, or see, how could she learn? And if Ashley couldn’t learn, was she a fully functioning member of the human race?”
These may seem like harsh judgments, but they are questions that, if I’m being honest, have crossed my mind at times prior to having Konner. They are also questions that I think society as a whole question every day. What is Konner’s worth in society? What is any person with a disability worth? The answer that Mooney learned and everyone should learn is – priceless. Everyone has a place on earth, and everyone has something that they are good at; something that they can contribute. We have to take the time to find it, and exploit it.
Ashley’s mother later explains that “The schools staff expects children to change and is determined to help ‘fix’ them. The sad thing…is that these children are not ‘broken’ and do not need fixing. This is so true. We look at everyone with such a clinical approach. They have a diagnosis, now we know what’s “wrong” with then, let’s fix it. No, we know what attribute makes them the people they are; now let’s work to help them cope with the struggles they have.
An example of this was a person named Cookie who was labeled as “mentally retarded” as a child. Cookie showed some great talents in art. He contributed to society with menial jobs throughout his life, but found out that he had a knack for painting. Mooney allowed him to paint a wall on the inside of his bus. Cookie used his memory of a Goat Island and painted a landscape that was almost spot-on to the actual site. This alone was amazing, but talking with a friend of cookies showed that there was much more going on in his mind. He had names for all the ships in his paintings and knew the names of the captains and most of the shipmates, the exact catch for the day for each, the local gossip about the crew and their families. While it’s uncertain if these are actual people, or part of his imagination, the vision behind this is amazing.
Mooney wrote something that I’ve always felt in my life. I can remember being called out a couple times a week to work in a trailer with the Gifted and Talented program in elementary school. I never thought that I was any different from anyone else, and never fully understood why I was being called “gifted”. I found out later it was because I had scored high on a test. What kind of measure is that? Mooney said, “Our culture often conflates giftedness with academic achievement. But nothing could be farther from the truth. Truly gifted individuals often don’t do well in school at all.” I feel that everyone has a gift of some sort.
Mooney meshes the stories with history of disabilities throughout American history. This lesson of the past is part of what makes this book very interesting. He explains the different diagnosis and how they came to be in society.
When he asked his fiancĂ© if she really wanted to marry him; if she was sure because they might have a child like him, she answered, “I hope to God we have a kid just like you.” I thought this was a great part of the story. I’ve said many times that I wouldn’t want Konner to be any other way. The world would be a better place if there were more people like Konner.
There’s much more to this story, but I would recommend this to any parent who is trying to understand their child’s place in society.
Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at pervasiveparenting@hotmail.com. I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column.