Looking For Answers

Pervasive Parenting

By Kodey Toney

Looking For Answers

I was honored to be interviewed this week by an educator taking a class about teaching children with disabilities. This was such a great opportunity for me because, as I've said before, it's important for teachers to try and understand these children or inclusion doesn't work. I'm glad to see teachers getting an education about integrating these pupils into their classroom. 

However, not all professions who work with people with disabilities are educated as well. For instance, we were told, by a reliable source, in one of our Partners in Policymaking classes that most doctors are only given about 15 minutes (if that) during all of their training, instruction on recognizing autism and other developmental disabilities. That may be argued I'm sure, but I'm also sure that there is not enough training to help with early diagnosis, which in turn helps with early intervention.

The National Autism Network just announced Monday that "According to researchers, a training program designed to teach pediatricians to better identify kids with autism may be an effective way to decrease wait times and flag children with developmental disorder at younger ages." 

I have two things to say about that; Duh, and this is a great idea. Why shouldn't pediatricians be taught what to look for in patients to help diagnose autism, or at least refer for a diagnosis? 

I can remember when my wife asked our pediatrician about Konner, and she reluctantly referred us to a psychologist. I'm not sure she really believed it, but I do remember her telling us after he was diagnosed that she was sorry that he had autism. We changed doctors shortly after that. 

As I've preached before, early intervention is the best way to help your child. The sooner you can get the diagnosis the sooner you can get the therapies to help the child through life. 

The instruction in the study was a two-day training that helped them diagnose 90 percent of the cases correctly. Two days is not much, but it's a start, and if it could help 90 percent of the population I think it should be mandatory. But, what do I know? As I've always said, I'm no expert.

With A Little Help From My Friends

Pervasive Parenting

By Kodey Toney

With A Little Help From My Friends

Last week I wrote about some information I received at a conference that I attended recently. What I mentioned, but didn’t go into detail on, is that this conference was sponsored by the Oklahoma Parents Center. You see, as I’ve said before, one of my main goals is to provide information on resources available in this area. Since we are in a rural part of the state, and hours away from Tulsa and Oklahoma City, there are limited resources. I feel that it is my duty to try and inform others of the organizations that can help. The following are two of those groups.

The Oklahoma Parents Center is a good example. The conference that they held was overflowing with information and other resources that I would like to hit on in the near future.

So what is the Oklahoma Parents Center? Under IDEA, the US Department of Education established funding for more than 100 centers throughout the United States.

According to the website: http://oklahomaparentscenter.org/,“The Oklahoma Parents Center is the statewide parent training and information (PTI) center serving parents of children with disabilities. Our goal is to educate and support parents, families and professionals in building partnerships that meet the needs of children and youth with the full range of disabilities ages’ birth to 26. We are a regionalized model with staff living in the area that they serve.”

So why would you need the OPC? They can help with certain things such as understanding IDEA, IEPs, 504s, etc. They help with navigating the troubled waters of the education system.They understand that not all children have the education they deserve and will work to achieve that goal.

I also attended a conference with the Oklahoma Family Network that was great. This group also works throughout the state to help families of people with disabilities.

According to the OFN website:http://oklahomafamilynetwork.org/, “The Oklahoma Family Network (OFN) Family-to-Family Health Information Centerinforms and connects individuals with special health care needs and disabilities, their families and professionals to services and supports in their communities. OFN provides opportunities for individuals and families to strengthen their communities through leadership development and volunteering. The OFN Mentorship Program is the flagship program of the center.”

The site also states that they can provide parents with Parent-to-Parent Support. According to the site this is:

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For those carrying a child with a medical issue, a disability or may be premature

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For those parenting a child in a Neonatal or PediatricIntensive Care Unit or a graduate thereof

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For those parenting a child with special health care needs or disabilities

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For those parenting a child diagnosed with cancer

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For those pregnant with a child who may have an early birth, a disability or a fatal diagnosis

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For those who have experienced the loss of a child with special needs

They also have information on Support Groups:

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For those raising a child with special needs or a disability

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For those raising a child with a rare or undiagnosed disorder

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For Siblings of children with special needs or a disability

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Navigation to support groups for those raising children with Autism, Cerebral Palsy, Cystic Fibrosis, Down Syndrome, Mental Health Diagnoses, etc.

You see I feel that educating yourself on what is available for you and your child is the most important thing you can do. I often gear this column toward autism, but I had friend tell me once that if you really want to educate yourself look at all disabilities. You have to get outside of your comfort zone, and you might learn that other disabilities are going through the same thing, or have been through it and have answers you are looking for. This is why I have tried to branch out lately to other developmental disabilities. I think Partners in Policymaking has helped me think outside the box on this one.

I’ve also started to establish a center that does just that in this area. The Pervasive Parenting Center is just in the planning stages, but I hope to bring you more information about this in the near future.

Both of these organizations, the OFN and OPC, along with the Pervasive Parenting Center can help with any disability. Allhave Facebook pages. If you need more information on any of these please contact me at pervasiveparenting@hotmail.com.

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.

 

Communication Breakdown

Pervasive Parenting  

By Kodey Toney 

Communication Breakdown 

I was looking through some information I received at a recent conference I attended and found some good advice that I thought I would share. This comes from a session that I didn’t attend, but the information in the power point we were given seemed to have some good advice about communication between parents and the school.  

Before I dive into the information at hand let me explain my stance on parent/school relationships. They are very important if you want your child to succeed. I’ve often said that many people on both sides go into relationships and IEP meetings with an us-against-them mentality. This is where much of the tensions usually come from and that spirals out of control until neither side can negotiate what they really want, or should want, which is the best education for the child at hand. 

Notice that I used the word relationship. This is exactly what it is. You have to have a working relationship with your child’s school or you will never make it. So many times I see things go bad and it usually ends with both sides resenting the things that happen in the meeting.  

Here are a couple things I felt interesting and useful as I read through the advice.  

The first thing that is suggested is that you introduce yourself to your child’s teacher(s) and school staff. This sounds like a no-brainer, but you would be surprised the number of parents who never step foot inside the classroom, or building for that matter, unless there is a problem. This goes double for all you fathers out there. I remember when we first started going to Konner’s IEP meetings and the team would tell me, “I’m so glad you’re here. We don’t see that many dads in here.” You have to be involved.  

If you don’t already have an IEP set up at the beginning of the year you may want to visit the teacher. Send an email or message ahead of time to set up an appointment. While many teachers won’t mind if you just pop in they are very busy, they have 15 to 30 children after all, you probably wouldn’t want someone just dropping in on you at your work.  

Let the teachers know that you are interested in hearing from them. Again, they are busy, but if you take the time to help them understand how much their input is about your child they will take the time to let you know how they are doing (see also information in past columns about communication notebooks).  

Make sure that your child’s teacher and school have a “good” contact list. If they can’t get in touch with you they can’t let you know what’s going on with your child.  

Don’t forget to let them know that you want the good stuff with the bad. Often times we are just waiting on that call that our child has set the fire alarm off again, or that he has pushed a kid off the playground equipment. We want the positive responses too.  

One thing that I learned in my years as a journalist; there is more than one way to contact someone. There is email, cell phone, work phone, home phone, Skype, Facebook, Twitter, etc. I’ve also learned that some people have their favorite ways to communicate. Find out what your child’s teacher likes. This will be your primary pipeline. Don’t forget some like the old fashion face-to-face meetings.  

That road goes both ways though. Let the teacher know what form of communication works best for you. Do you check your emails often? How often is your phone turned off? Be honest with them.  

When you request information from a teacher give them time to respond. Again, they are busy people. Don’t pressure them. If you can give them adequate time it will help.  

Find out when the teacher has their planning period. This will be very helpful for you and them. This is a time when they are not trying to wrangle dozens of rowdy children.  

Attend other functions. Don’t just show up to your child’s school when an IEP is set, or when you have been called for something bad. Parent-Teacher meetings are great and will show that you care about your child’s academic well-being. If there are school assemblies or festivals and you can make it you should plan to attend. It’s good for the relationship with the school, but it is also good for your child to know you care.  

Visit where your child learns. Go into the classroom. There may be things in there that can cause your child to be irritated that the teacher may not recognize. Remember that you know your child better than most.  

Be open minded about what the teacher tells you. If you have to take some time to reflect on the situation and get back to them. They are telling you what they observe. You need to look at that and collaborate with them.  

These are just a few suggestions that I have given based on what was presented in the power point (This information was provided by Rick Bishop and Marlene Webster). I hope they can help.  

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.  

Temple Is My Body

Pervasive Parenting
By Kodey Toney
Temple Is My Body
I sat down to write this column about something else, but as I began to research I found an interesting site with quotes from Temple Grandin. I have used some of these in the past, but I realized that I needed to share some more. This woman has so much information and knowledge to communicate that will help us as parents and advocates understand a little more about the spectrum of autism.
Quickly, for those of you who are not familiar with her, Temple Grandin, according to her website templegrandin.com: “… didn't talk until she was three and a half years old, communicating her frustration instead by screaming, peeping, and humming. In 1950, she was diagnosed with autism and her parents were told she should be institutionalized. Dr. Grandin has become a prominent author and speaker on the subject of autism because ‘I have read enough to know that there are still many parents, and yes, professionals too, who believe that 'once autistic, always autistic.' Temple Grandin, Ph.D., is now the most accomplished and well-known adult with autism in the world.” She was also featured in a movie that won many awards which starred Clair Danes.
Her books are great sources for information and understanding on the subject of autism, especially Asperger’s Syndrome.
With that, let me share some great quotes that she has thrown out over the years.
“I can remember the frustration of not being able to talk. I knew what I wanted to say, but I could not get the words out, so I would just scream.” This helps us to understand the frustration and loudness that can come from a person with autism. So many times I hear people say, “Well he screamed for no reason,” or “He hit for no reason.” I can’t tell you how untrue this is. If a child has an outburst there is a great chance that they are trying to communicate. We may not know what they are trying to say, but we can almost guarantee that there is something recently that has bothered them, or that they have been trying to say.
“I cannot emphasize enough the importance of a good teacher.” Me either, and we have been blessed throughout the years to have had some good ones.
“People are always looking for the single magic bullet that will totally change everything. There is no single magic bullet.” I’ve gone through this in past columns, but I will say that it takes therapy, hard work from the parents, and everyone in a child’s life to help them succeed in life.
“You have got to keep autistic children engaged with the world. You cannot let them tune out.” This is the quote I was actually looking for when I began the research. We have been working hard to try and keep Konner from just sitting at the computer or on the iPad all day. This is really hard because we are busy. It’s so easy to just let them sit there and help us do other things.
“If you start using a medication in a person with autism, you should see an obvious improvement in behavior in a short period of time. If you do not see an obvious improvement, they probably should not be taking the stuff. It is that simple.” I’m often asked about medicating children on the spectrum. There is enough here to write another column, but I will say that if you do you need to monitor the child’s actions. We have been fortunate to work with a good doctor who does not play favorites when it comes to medicines.
“Normal people have an incredible lack of empathy. They have good emotional empathy, but they don't have much empathy for the autistic kid who is screaming at the baseball game because he can't stand the sensory overload. Or the autistic kid having a meltdown in the school cafeteria because there's too much stimulation.” This is so true. Enough said.
“A treatment method or an educational method that will work for one child may not work for another child. The one common denominator for all of the young children is that early intervention does work, and it seems to improve the prognosis.” Again, once you’ve met one child with autism you’ve met one child with autism.
“If you have autism in the family history, you still vaccinate. Delay it a bit, space them out.” We did this with Kruz. We were concerned with him, as any parent with one child would be, so we had to take trips to the health department because our doctor would not space them out. However, this is my recommendation as well.
“Autism is a neurological disorder. It's not caused by bad parenting. It's caused by, you know, abnormal development in the brain. The emotional circuits in the brain are abnormal. And there also are differences in the white matter, which is the brain's computer cables that hook up the different brain departments.” This can help with the guilt part of learning that your child has autism.
“I would never talk just to be social. Now, to sit down with a bunch of engineers and talk about the latest concrete forming systems, that's really interesting. Talking with animal behaviorists or with someone who likes to sail, that's interesting. Information is interesting to me. But talking for the sake of talking, I find that quite boring.” Konner will talk to me about anything…as long as it’s what he wants to talk about. If I sit him down to talk I can only hold his attention so long and then the conversation is over.
“One of my sensory problems was hearing sensitivity, where certain loud noises, such as a school bell, hurt my ears. It sounded like a dentist drill going through my ears.” Interesting! I also recently read from John Elder Robison that he hated loud noises unless he made them.
And finally:
“Autism is part of who I am.” We can’t forget that this is who they are as people. I know that may sound ridiculous to parents of a child, but many other people want to change things. This is their personality, or as Patrick Schwarz would say, their attribute.

My Father In Me

Pervasive Parenting
By Kodey Toney
My Father In Me
When I was a kid I, like any other child, had many ideas about what I wanted to be. I wanted to be a baseball player. Living in Kansas City I really wanted to play catcher for the Kansas City Royals. I wanted to be a police officer. I can remember at my eighth grade graduation in fact that I announced I wanted to be a DEA agent. There were many other professions that I toyed around with in my imagination. Many other adventures I wanted to take. 
However, never once did I think to myself, “I want to be a dad.” A father was the last thing on my mind. I don’t think that is programmed into our heads as men like it is to women. When they are born one of the first things they are given is usually a baby doll. They are taught how to love, take care of others, and even how to change them and feed them.
Men are left to find other outlets for their paternal tutelage. They have to search the people around them; the men in their lives.
It hits me as I write this on Father’s Day that I had many of these people in my life, and I am blessed to say that. 
When Konner was diagnosed it was tough to find information from a father’s perspective. This is part of the reason that I started this column. I wanted to share some of my stories from a father’s point of view. As I’ve gone along I’ve wondered why anyone would listen to me. I wondered if I had any information that anyone would want to read. So then, and I still have this question, I wondered if I was a good enough father. I’m not perfect, and I’ve said that many times before. I know you don’t have to be, and I know that there are many other father’s who have better patience and communication skills than I do. I try really hard though. 
I attribute this to the men who have been in my life. I had a grandfather who raised four children by himself with a very limited budget. What he did have was plenty of love and hard work. I had another grandfather who raised six children, again on a limited budget, and worked very hard. He has also, along with my grandmother, raised a grandchild, and continues to raise two great-grandchildren. 
Then of course was my father who worked very hard to give our family everything that we’ve ever needed, and even managed to throw in a lot of things we just wanted. 
They all taught me that you have to give love and you have to work hard to keep a family going and to be a good father. More importantly each one of these men were great dads. They say there is difference between a father and a dad, and I firmly believe that. That extra sacrifice, extra dedication, and that hard work make you a great father, but it is that love that makes you a great dad. 

Everybody Get Together

Pervasive Parenting

By Kodey Toney

Everybody Get Together

As I continue to read Patrick Schwarz’s book “From Disability to Possibility: The Power of Inclusive Classrooms” (yes I’m a slow reader) I continue to find great information that I want to share. So, here comes some info from a section titled “Components of Inclusion” from chapter five “Inclusion May Not Be Easier, But It’s Better”.

Schwarz borrows from an article he co-authored with Denise Bettenhausen where they give some great points on helping with inclusion. The following is the list. I hope I can throw some of my experiences in to help relate.

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Let students with disabilities attend the neighborhood school they would attend if they did not have those disabilities. So many times the school or the family is quick to send the child with a disability off to a secluded classroom or a co-op classroom to segregate them for “the betterment of the child”. We don’t even give them a chance in the classroom in the first place.

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Make them part of a general education homeroom.Again, let them be like their peers. If they are with them they will most likely socialize and become more socially accepted.

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Never segregate them. When not in their regular classroom, they should be part of other general school environments. This comes from the fact that many children are part time in a classroom and part time in a secluded room. I agree with this, but feel that sometimes it is possible to move them to safe area if they are having issues. Konner spent time in a “safe room” when he was in the first grade to help with sensory issues. We used it as a helping tool and not as a punishment though.

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Carefully plan the course and progress of their education. A planning meeting should take place at least every other week. This is something that helps the team make sure that they are working on the goals of the IEP. It is a good way to make sure that they are all on the right track, and that the goals are good ones. It also helps the parents know what is going on with their child.

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Solve problems as they arise. This seems like a no brainer, but often times a problem is seen as just that and is never solved. It continues to happen and is never resolved. I’m reminded of a commercial about back pain that says something like; “If you had your hand slammed in a car door would you want me to give you pain medicine or would you want me to open the door and free your hand?” Too many times we just want the quick fix when in the long run if we find out what is causing the pain (meltdowns) we will solve the big issue.

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Introduce innovative, diverse learning strategies: universal design, differentiated instruction, cooperative learning, curricular adaptations, literature circles,educational technologies, cross-age peer tutoring and peer mediation. Remember, there are many different ways to learn out there for people with or without disabilities. We can’t rely on the same things for everyone. We all learn differently and that is why people have come up with many different ways to learn. I said this in a different column, but I will say it again; if our children can’t learn the way we teach then let’s teach the way they learn. It’s a great quote and I wish I would have said it first.

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Create an educational team in which all members are equal. The there is a great section in this book about the parents and family being important. We often times feel, as parents, that it is us against the school, and too often that ends up to be the case. However, we need to end this mentality on both sides. Remember that the child’s future is the most important thing.

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Cut down on unnecessary supervision and assistance by family members, professionals, and paraeducators. This section talks about learned helplessness. We don’t want our children to think that they are helpless, yet we often times show them they are by over assisting them. Let them try first (see last week’s column).

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See behavior as a form of communication. If a child is having a meltdown there is a reason. If they are non-verbal they are trying to tell you something. There is another quote in the autism world that says: “Just because I don’t speak doesn’t mean I have nothing to say.” It is our job as families, friends, and educators to find out what their actions are saying. Don’t ever let someone say, “He just had a meltdown for no reason.”

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Use everything in education’s bag of tricks. Again, there are many sites and books out there. Find something that the child can relate to and use it to your advantage. If the child likes trains then find something about trains to relate to the lesson. If the child likes music then use music for the lesson.

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Make it possible for students to join after-school clubs and take part in extracurricular activities. This is a bit of a problem in our area because there are not as many after-school programs. But, find something they do like and explore whether there is something in your area that relates to it. If not then create something.

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Be committed to making it work. The entire team has to be on board or nothing will work. If anyone in the team does not agree then it will all fall apart. You have to be committed to the program.

The book goes into more detail and has some great stories. This is just a sample of the concept, but what great advice in just this little space. I hope this can help some.

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.

The Power of Equality

Pervasive Parenting 

By Kodey Toney 

The Power of Equality 

I’m going to continue my rant about inclusion in the classroom because of a lot of things that I’m working with right now, but also because I feel it’s very important.  

Why do we always get this idea that children with learning disabilities automatically belong in a different classroom from others? I’m not saying that all teachers and parents feel this way, but it seems to me that many do.  

Jennifer and I attended a conference Friday sponsored by the Oklahoma Parent Center, which was great. They had an assortment of speakers talking about many different subjects including: Improving Access for Students with Disabilities, iPad Apps, 504 and IEPs, and a session that I attended called Basic Rights in Special Education.  

The Ellen Kimbrell, the Associate Director of OPC, spoke about IDEA and several other things, but one thing that she said that stuck with me was program first, placement second. Though I’ve heard this many times it was never said quite like this. It’s just one of those things where you get it because it’s delivered differently.  

It goes right along with what I’ve been writing about lately. I’ve also read a little more of Patrick Schwarz’s book “From Disability to Possibility: The Power of Inclusive Classroom”, and it includes some more great advice.  

I think the second chapter’s title says it all: “Special Education is a Service Not a Sentence!”  As part of Least Restrictive Environment it is important to remember that we need to let someone try to learn in a mainstream classroom under “normal” conditions before we change things. If we see that we need to modify then we move to that. It’s only as a last resort that you move a child to a secluded classroom, and even then you need to have a plan in place to move them back into the mainstream as soon as possible. I know that this seems to be a repeat of some of what I’ve been saying.  

Let’s take a look at the history real quick. When these laws were being developed in the 1970s there was an idea of segregation in the classrooms. However, as things went on people began to realize that the lack of socialization with others was causing segregation from “childhood to adulthood,” according to the book.  

Not to mention, the teachers were not getting to learn about teaching children with disabilities, and the children were not learning about peers with disabilities.  

The other side of this, as I’ve discussed before, is that the children were learning to act like others with disabilities. Lack of socializing with mainstream peers does not give children anything to model after.  

In the classroom it’s often seen as a distraction for a teacher and the other students when a child with a disability receives help. Some have said that it seems unfair to give a child supports such as paraprofessionals, specialized reading materials, one-on-one instruction, etc.  

There is a big difference between fair and equality. We want all children to have an equal playing field. We want to give a person with visual disabilities large print to help them read. We want to give children with fine-motor skills something to help them hold on to their pencil better.  

Look at it this way; I saw a picture once with three people trying to look over a fence. One was kind of tall, one was medium sized, and the last was short. They were all three given step stools of the same height. This was fair. The problem was that the tall person could see over the fence, the middle person was eye-level with the fence top, and the short one still couldn’t see. The second slide saw all three with different sized stools that allowed them all to see over the fence at the same height. This was equality.  

This is just a little something to think about.