Pervasive Parenting

Monday, December 10, 2012

Here Comes Santa Claus

Pervasive Parenting By Kodey Toney Here Comes Santa Claus

It's that time of year again; time for Yule tide and cheer, but for some families with children on the spectrum the holiday season can be overwhelming. The long lines at stores to get a couple seconds with Santa that may or may not work out can be frustrating for a child with autism. For a small group of families there is an alternative to those lines and hotbeds for meltdowns. The Parents of Autism group is holding the Third Annual Sensitive Santa. This 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 to a meltdown. 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 Sensitive Santa will be held at the Community State Bank Thursday Dec. 6th at 6:00 p.m.

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 pervasiveparenting@hotmail.com, or contact us on facebook at either the Parents of Autism page or Pervasive Parenting.

My Own Worst Enemy

Pervasive Parenting

By Kodey Toney

My Own Worst Enemy

I was fortunate to attend a conference in New Orleans this week for work. During this conference I heard a speaker who, while talking about politics said, "Remember there are no permanent friends, and no permanent enemies." As I heard that I thought, "This could be said for parents of children with autism."

There are many times where this could come into play. First, let's understand this concept as it pertains to your child. YOU are your child's best advocate. Nobody can get the best services and programs for your child but you. We all no that this can be difficult, but you have to be versatile to get what you need.

There are many old sayings that pertain to this, but one that I use most of the time is; You catch more flies with honey than with vinegar.

Our children require many different services. Without them they will probably not excel socially, physically, and academically. So, it stands to reason we need to work hard to get these. This means that we may need to suck it up and be nice; even if it hurts.

I worked for several years in Financial Aid at the college. One thing I learned is that it is a very stressful job. You work very hard for little pay, and you are responsible for many people's money and future. With that responsibility comes the stress. Therefor you are seen as the enemy, the problem, and ultimately the blame.

This could be said for people at several of the places we have to deal with. The insurance companies, DHS, therapists, and school officials all can be seen in this capacity, but we need to remember, they can and will help you.

Be nice to them and you will get farther, I promise. They are not the enemy. You are your own worst enemy. The worst thing you could ever do is burn a bridge. You will never get the services you need if you do, or at least it will be harder to get.

On the flip side of this, if you're not getting what you want, but they are being nice, you may need to be a little more firm. Some people can see this as a weakness. Make sure they know that you are kind, but you mean business. Your main focus is your child's future. Don't forget that.

Thanks, Thanks A Lot

Pervasive Parenting
By Kodey Toney

Thanks, Thanks A Lot

Lately Facebook has been blowing up with people who want to share the things they are thankful for. Since this is the season for giving thanks I've decided to make my list of things I'm thankful for as it pertains to being a pervasive parent. Most lists are twenty-plus days long, but I'm going to give my top ten in no particular order.

Jen: I get this feeling sometimes that people get the wrong idea about me. I'm not this all knowing father. In fact there are many things I'm still trying to figure out. Often times it's my wife that I turn to for answers. She is the most patient and loving mother I know. When writing each week I usually turn to her and ask, "Do you remember what happened when..." She seems to always have the answers for me. I couldn't be a dad without her. I think this is important because so many marriages end after a diagnosis. It's tough, but I couldn't imagine doing it without her.

Parents: Both my parents and Jen's parents are a blessing to us both. Jen's mom is our babysitter, advisor, and she was the first to actually "know" that there was something different about Konner.
My parents provide support with watching the kids, but they also give the moral support needed to raise children, especially with a disability. Mom is always giving me kind words while my dad explains philosophies of life. Both are well needed sometimes.

Partners: I owe a debt of gratitude to Joe'l Farrar for getting me into Partners in Policymaking. This has been an awesome class. I entered this program thinking I'd get a little information on autism. I'm a little less than halfway through and I've already gotten so much more. The resources, networking, and knowledge you receive is unbelievable. I come away each weekend we meet thinking, "What just happened." But, the mentors are awesome, and the classmates are a wealth of knowledge and support too. This is not just about autism though. I've opened my heart and mind to all disabilities. Thanks to Erin Taylor, Ann Trudgeon, and Diana McCalment for this opportunity.

Parents of Autism: This group of parents is awesome. What little we get together is a blessing. We meet every third Thursday of the month and share stories, resources, and advice. It's a great way to vent, laugh, cry, and even just get away for a few minutes. Thanks to all the families involved. I just wish we could get together more.

Therapists: Over the years we gave seen a huge difference in the way Konner copes with his issues. This is thanks to the therapists he has. Between Krista Hannaman, OT; Joe'l Farrar (who we miss), Speech; Shawna Hacker, D&D Counseling; and Katie ?, speech; we have seen a drastic improvement in the way he deals with school and home life.

Teachers/Aides: We've been fortunate to have some great teachers and aides through the years. This year is no different. Tabetha Williams and Mindy Hale are a great combination. They both are trying to give Konner the best education possible without trying to single him out. They are working to make him as interdependent as any other child in the class.

Wrightslaw: Besides being a great resource for legal information, IEPs, and anything pertaining to the civil rights of those with disabilities, this site, along with the newsletters, has been a source for column ideas. I draw much of what I write about from the emails they send out.

Meds/Dr. Jon Roth: I was completely opposed to giving my child any type of medicine. However, thanks to Dr. Roth I've changed my mind. With his help we have seen an improvement in Konner's behavior at school and home. He is a completely different child when he has his meds from the child that wakes up every morning. He will wake up screaming and yelling, jumping on the bed, and literally bouncing off the walls until he has had his medicine.

Konner/Kruz: these are the two best things to ever happen to me (my wife is a close third). I'm constantly going with Cub Scouts, Parents of Autism, Partners in Policymaking, and heading to school functions my life is a blur sometimes. But, it's all for these two guys, and I wouldn't change it for the world.

God: One thing I've found through the years, especially recently, is that you have to have God in your life. He is a source of inspiration and guidance, and He's always there. Thanks to the people at Green Country Cowboy Church for helping me realize this more fully.

Hopefully you have found some reasons to give thanks in your stressful lives.

Lean On Me

Pervasive Parenting

By Kodey Toney

Lean On Me

Another weekend with Partners in Policymaking means another great session of information. The problem is that there is so much data crammed into a small amount of time. However, I always come away with something that makes me reflect a little more and makes me think, “Oh, wow. That was awesome!”

One of those things this weekend was when guest speaker Guy Caruso, Western Coordinator for the Institute on Disabilities at Temple University, spoke to us about “Continuity Across the Lifespan”. His presentation was about helping people with disabilities transition from school to work, and to living on their own. The point was that they should have as little support as possible, but as much as they need. As he discussed this though I remembered a couple situations we have had with Konner recently that I felt go along with this idea.

So far, almost all the presenters have asked us what we want for our children. The main answers are: to be happy, to live independently, and to have as “normal” a life as possible. Of course this is what we want for any child, but especially those with a disability.

So in a recent IEP for Konner we discussed his teacher’s aide. The question was whether or not she should be in the classroom full-time or just come in and out throughout the day. My answer was, “No offense, but our ultimate goal is to get rid of the aide.” Isn’t that what we’re all working toward?

How many of you would say, “Hey I wish I had someone to follow my child around all day and make them stand out from the other children.” I would guess very few. Their obvious issues are enough to make them stand out so we don’t need to draw more unwanted attention. You might as well put a big sign on them saying, “Hey, I have a disability.”

There is also the fact that our children need to be independent in the classroom, or at least as interdependent as the other children. Other children look to the teacher and other students for help. They don’t have a person sitting in the corner to help them when they have outbursts or need redirection (at least most don’t). In a year or two I would like to see no aide in Konner’s classroom. That would mean that his current aide has done her job in helping him cope with issues he may have.

Interdependency is good. We all are interdependent. That doesn’t mean we have to rely on others as a crutch. That doesn’t mean that we have to have the person next to us sign our name on everything even though we know how. That means that we can work together to get to a certain goal. We all depend on our families to help us through tough times, or to watch our children when we have things to do. We depend on our friends to help us to give us a ride when our car breaks down, or to be there when we need support. We depend on our co-workers when we need help finishing a job, or when we need advice on how to deal with an issue. So why should our children not be interdependent on classmates and teachers?

The aides are like therapy if you think about it. They are used to help you move toward an ultimate goal which is to do things on your own. If you have physical therapy you are just using it to get to a point where you don’t have to use a wheelchair or crutch anymore. The occupational therapies are used to help your child deal with sensory and fine-motor issues so that someday they won’t have to have therapy anymore.

Aides are necessary, but they are also only meant to be temporary in most cases. I felt it interesting that one of my classmates in Partners who is a self-advocate said she always saw her Special Education teacher as a baby sitter. This was not the goal when we put these people in the classroom. They are a tool (no offense). They should be used sparingly, as little as possible, but as much as needed.

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.

I'll See You In Part II

Pervasive Parenting

By Kodey Toney

I’ll See You In Part II

So historically the sequel never lives up to its predecessor. Hopefully this is more an Empire Strikes Back than a Phantom Menace. Last week I told you that I would follow up on the acronyms that are associated with autism, more specifically with education. This may be a difficult task, but let’s dig in on part two.

When we left off I had given the history of IDEA and what that means for a child with a disability. Part of what came about from this was FAPE. This one stands for Free Appropriate Public Education. This is promised to all children with disabilities residing in the US, according to the Dictionary of Developmental Disabilities Terminology (DDDT). The book goes on to state: “This means that special education and related services are provided at public expense, under public supervision and direction, and without charge; meet the standards of the state education agency and the requirements of IDEA; and take place in the least restrictive environment (LRE) needed by the child.”

So what does this all mean for your child? Well, if you remember my column a couple weeks ago about helping a child and modifying in the classroom, it’s very similar to that. Wrightslaw.com basically states that not all children learn the same way, so you must do what you can to help them learn.

This does not mean that you have to have the best education money can buy. The school has to provide your child with an education. They have to provide one that helps your child learn (appropriate). However, they don’t have to spend tons of money to get the top-of-the-line education for your child. This is not a private institution.

Wrightslaw posted in a recent newsletter: “Because public resources are not infinite, federal law does not secure the best education money can buy; it calls upon government, more modestly, to provide an appropriate education for each disabled child."

However, if your child is not making progress in the school’s programs then they are not providing FAPE. This means they need to modify the instruction for certain children with disabilities so that the child can improve scores and results. If they can’t do this they must provide a program that can.

This all has to be done in the Least Restrictive Environment. DDDT states: “LRE…allows a child to participate in general education program as much as possible and to benefit from learning with peers who are typically developing while also meeting his or her own special needs.”

So, this applies to children with autism in many ways, but the main way I can think of is that those children generally suffer from social issues. If you put them in a room with other children that suffer from social problems then you are just showing them more of the same behavior. What you need to do is put them in a room with other that can help them become more social by interacting. This pours into inclusion in the classroom.

Let me tell a crazy story that happened in my life when I was child. I’m not sure if this will help or hurt, but it makes sense to me. I had a pet duck when I was a kid and his name was Donald (original I know). Donald was the only duck we really ever had, but we had a herd of cats. So this duck basically was raised by the cats we owned. The duck would cuddle up with the cats and follow them around everywhere they went. They ate together, slept together, and basically did everything together. They became so close that the duck actually began to sound like one of the cats. When he would quack it came out as a kind of meow. I know this sounds crazy and ridiculous, but it is true. The point is that this duck, though it didn’t seem like it fit in, actually began to follow in the others’ footsteps. If it had been raised by ducks it would have probably just quacked.

This in a nutshell says that a person with special needs will get their education in a classroom with their peers, and will be provided with tools to learn better unless otherwise specified in an IEP.

Wrightslaw states: “LRE means that, to the maximum extent appropriate, school districts must educate students with disabilities in the regular classroom with appropriate aids and supports, referred to as "supplementary aids and services," along with their nondisabled peers in the school they would attend if not disabled, unless a student's individualized education program (IEP) requires some other arrangement. Some supplementary aids and services that educators have used successfully include modifications to the regular class curriculum, assistance of an itinerant teacher with special education training, special education training for the regular teacher, use of computer-assisted devices, provision of notetakers, and use of a resource room, to mention a few.”

This is just a small look into these acronyms, and there are many more out there. However, these are the most common and will get you started on your path to advocate for your child in the classroom.

As always I hope this helps.

Screen Saver

Pervasive Parenting

By Kodey Toney

Screen Saver

When writing this column I usually gear my discussion toward parents with children who have been diagnosed with autism. Every once in a while I will actually write to people with other disabilities or children with disabilities. However, this week I want to reach out to those parents who may be on the fence as to whether your child has a problem or not. If you have an inkling that your child or someone you know may have autism there is a free screening coming up.

When dealing with a child with a disability the hardest part is admitting that there may be something “wrong” with your child. I’ve expressed this many times in the past, but it’s worth revisiting. This is hard for many because we all want our child to be “normal”. But, if you’ve been following me long you’ll know that normal is just a word, and not actually a state of being.

Also worth restating is the fact that you can’t begin to help your child until you actually have a diagnosis to get help. As Kathie Snow of Disabilities is Natural states, a diagnosis is something used to get services. These services may include IEPs, TEFRA, therapies, and other assistance; all of which you need an analysis to receive. You are your child’s best advocate, so if you want the best for your child you need to understand what you can to do to help. If you had a child who was getting headaches constantly wouldn’t you take them to the eye doctor to see if they needed glasses? Why wouldn’t you do the same for a child you think has autism?

Early Access Oklahoma is sponsoring a free autism screening in Poteau on Friday, November 9. This will be held at the LeFlore County Health Department. The screening is a service of the OU Health Sciences Center Child Study Center, and is funded by the Oklahoma Developmental Disabilities Council.

The website http://earlyaccessok.org/ states: “Screening is a very important step in ensuring that children with autism and other developmental delays are getting the early intervention services they need. According to the Center for Disease Control less than 50% of children with developmental or behavioral disabilities are identified as having a problem before starting school. By this time significant delays may have already occurred and opportunities for crucial early intervention have been missed.”

So many may ask, “How do I know if my child needs to be screened?” The site has some warning signs to look for. They include:

Does not respond to his or her name
Doesn’t babble by 12 months or use some words by 16 months
Doesn’t point or wave bye-bye
Seems to prefer to play or be alone
Os not interested in other children
Lacks interest in sharing or enjoyment with others
Has difficulty relating to others or understanding their feelings

Some others I would mention would be covering their ears, hand flapping, and meltdowns.

While you will not receive an actual diagnosis at this screening you will receive expert advice as to whether your child might have autism, and your next move in gaining a diagnosing.

This is a free screening. Why wouldn’t you take advantage of this? If you don’t suspect your child has autism you may know someone else who may benefit from this service. You may be a teacher or person who works with children who you suspect need this screening. You also may just be a friend who knows someone who could use this information. Please, take advantage of this service.

For more information, or to set up an appointment, you can call (405) 295-5273, or visit www.earlyaccessok.org.

Sunday, October 21, 2012

Help Somebody

Pervasive Parenting
By Kodey Toney
Help Somebody
I saw a sign on Facebook recently that said, “If a child can’t learn the way we teach, maybe we should teach the way they learn.” This is profound for all children, not just those with disabilities. This is the mentality that I think the teachers are going to have to adopt in order to work in the mainstream classroom.
The average child in the classroom has evolved in recent years. This is obvious, but when you look at a report for the U.S. Department of Education; “47 percent of students who have disabilities spend 80 percent or more of their day in general education classroom settings.” This is an increase from 14 percent less than a decade ago. Many things can cause this number to change, but the fact remains that there are a huge amount of students who need some sort of help in the classroom.
We all know that people have different ways of learning. I teach a Freshman Orientation class at the college and one of the things I talk about is the different learning styles. People, especially children, take in information in different ways. If a teacher has gone through a teaching program in college they will know that they need to stimulate the different styles with the way they teach. Some are auditory, some are visual, some are kinesthetic and so on. Because of this the instructors change, or modify, the way they teach in the class to help everyone.
Modifying, according to the dictionary, is a small alteration, adjustment, or limitation. Now, I understand that modifications for a child with a disability may be more than just a “small” adjustment. These are also part of the Individualized Education Program for a student. It will include many things that need to be changed for the child. However, it is also necessary to give them an education they deserve.
We have been very fortunate to have great teachers for Konner. They have been willing to go above and beyond to provide him with what he needs to learn. They all have done what they think is best for him, and that’s really all you can ask from a teacher.
However, there are some teachers who do not want to change their routine for one child. I have heard of teachers who refuse to change the way they run their classroom. Granted, some of these have been teaching for a while and they have an old-school mentality (pun intended). The problem is that they will not modify unless they have an IEP in place. This of course is why IEPs were put into place. However, you don’t have to have an IEP to modify. I’ve seen some great teachers who modify their classroom because a child needed something different to help them learn, and didn’t wait for a piece of paper to force them to make changes. On the other hand I’ve seen teachers who don’t change even though they have been given the IEP.
This makes me question some teacher’s intent. I know this is a little unfair sometimes, but I just want to ask, “Why did you get into teaching?” I know it wasn’t for the pay. My wife is a teacher, we don’t have money. I know it wasn’t for the social interaction, the social status, or the benefits (despite the summers off this is not why most teachers actually get into the profession). So why then?
Most teachers want to help others. This is their ultimate goal. They want to make the world a better place by helping educate the masses. The problem is that the masses are not all the same. You can’t use a cookie-cutter approach to teaching.
You will have children who really do well in some areas, but others they struggle. This isn’t new though. I like to think that I’m a pretty intelligent person (at least that’s what I like to think). I think I’m a pretty well rounded student. I was pretty good in English, history, science, and most other subjects. When it came to math I stunk. I passed, but I struggled. I saw the problems as some sort of cuneiform and the teacher sounded like the teachers from the Peanuts cartoon. So I had to ask for help from the instructor and other students. My teacher, when asked, was more than willing to help because she knew that I needed it. This is the way it should be with any child, regardless of being labeled with a disability. Should that change the way we look at our children/students?
The other issue with this is that sometimes the child either can’t, or won’t, ask for help. This is where the teacher needs to take it upon themselves to work with the child just because that is their job.
Now, I want to take the time to say thank you to Konner’s teacher Mrs. Williams, and his aide Mrs. Mindy. They have both done exactly what I have been talking about here. They have worked to give Konner many modifications in the classroom that have helped him stay calm and give him the Least Restrictive Environment, which is not only what you should do, but it’s the law. This was not because it’s the law, or even because it was in an IEP, in fact they have done things that were not in the IEP. They did it because they saw a need. I’m pretty sure they would do if for any child.
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.