Monday, December 29, 2014
Sunday, December 7, 2014
Saturday, November 29, 2014
Sunday, November 23, 2014
Sunday, November 16, 2014
Wednesday, September 17, 2014
By Kodey Toney
Round and Round
Last week I tried to give some advice on preparing for an Individualized Education Program (IEP). This will be round two of that attempt at helping you get the most out of your plan.
If you are going to ask for what your child needs make sure that you have your ducks in a row. It's best to have some sample goals and objectives written ahead of time. You can do a little research online and find some that fit your situation, but if you have some ideas in hand it can help the team better understand what you want.
Make sure those goals are measurable. According to "Writing Measurable IEP Goals and Objectives" by Barbara Bateman and Cynthia Herr, there are three questions that can help with this:
1. What are the child’s unique needs?
2. What services will the school employ to address each need?
3. What will the child be able to accomplish as a result of the services?
The following site has some good examples:http://www.attainmentcompany.com/sites/default/files/pdf/sample/WMIEP_Sample.pdf
I've said this before, but it's important that you know your rights. At every IEP meeting you should receive a copy of the parents rights. The Oklahoma Department of Education has a copy athttp://ok.gov/sde/sites/ok.gov.sde/files/SpecEd-ParentsRights. It's a good idea to read these and make sure you understand them. If you don't you should contact either the department of Ed., the Oklahoma Parents Center, or the Pervasive Parenting Center for help.
If necessary you should contact an advocate for assistance. Through the Pervasive Parenting Center I will act as an advocate to help you in anyway I can. If I can't I know people who can. This is what the resource center is about, helping find answers to questions and needs you might have. You can contact me email@example.com.
By Kodey Toney
Sultans of Swing
Since IEP season is in full swing, and I've been working with several parents lately on their children's Individualized Education Program (IEP), I thought I would go over some things that might help you get prepared for your next meeting with the school.
Here is a short list if things I would recommend to be prepared to meet with your team.
You want to make sure that you have all the information from the school that you need to help provide your child with the best education possible. You can, and should, request your child's complete education file contained in school records. This can include grades or report cards, teacher notes, classroom papers, discipline reports, progress reports, correspondence, and any tests or evaluations. These can be vital in determining what services and modifications may be necessary in the IEP. This can also help you determine if there are any new evaluations needed.
A care notebook is a great way to keep this information in order. The Oklahoma Family Network provides information and training in putting one together. If anyone is interested in more information about the notebook you can contact me firstname.lastname@example.org.
This means that you should especially request any evaluations that will be presented at the meeting.
I would make sure that you make a request for this information early, a week or more out, and do it in writing. You should always do any correspondence with the school in writing. Pete Wright of Wrightslaw always says, "If it's not in writing it wasn't said."
If you talk to someone, and they say they are going to do something, but it's not in writing, it's a good idea to send an email soon after explaining what was said. For instance, if someone says that they will do an evaluation on your child for speech, I would email as soon as possible and say, "It's my understanding, per our conversation today, that you are going to do a speech evaluation this week. Am I correct in my understanding?" This does two things. It starts a paper trail, and it prompts the other person to answer your question.
One thing you should remember is, if you are not satisfied with the school's evaluation you can request an outside or independent evaluation.
I've said this several times, but it's worth repeating, it's not good to have an us vs. them mentality. Make sure that you are trying to keep open communication with the teacher and others at the school. You know your child well, and they know what's happening in the classroom. This is a "team", so team up and help your child.
You may even want to request to observe the teacher and student in the classroom, but I will throw out a little caution on this one. First of all, your child will probably act a little different if they know you're in the room. The teacher probably will not act the same either, but they may not welcome you with open arms either.
Make sure that if you currently have an IEP in place that you review it. If it's been a while since the last one then there are things to look at and make sure that the goals are still appropriate, and you are still heading in the right direction.
This is a good start, and I will try to follow up next week with more information.
As always, if you have any questions, or you need someone to help advocate for your child in a meeting contact me at the email above.
By Kodey Toney
On The Road Again
I'm constantly questioned about resources available in our area. In fact, the main reason that Jennifer and I started the Pervasive Parenting Center was to help bring resources to this area and show what is available. The upcoming On The Road event will showcase many of the resources both state-wide and local that are available to help your family.
I have been asking Sally Selvidge for a couple years to please bring this event to Eastern Oklahoma, and she finally agreed last spring.
Sooner Success sponsors the one-day conference to help families navigate the disability world.
There will be more than 20 representatives on hand to explain what their program can do and to answer any questions you might have. These include TEFRA, Oklahoma Family Network, Partners in Policymaking, Epilepsy Association, Easter Seals, Oklahoma People First, Sibshops, DDS Waiting List, Oklahoma Disability Law Center, and Oklahoma Parents Center, just to name a few.
The conference will be held Tuesday, Sept. 16, from 8 a.m. until 3 p.m. It will be in the Costner/Balentine Ballroom at Carl Albert State College in Poteau. Lunch will be provided and everything is FREE. That's right, it costs you nothing.
I understand that this is being held on a weekday, but I promise it's worth the time. Even if that means that you need to take off work, you will be glad you did.
There will be an assistive technology demonstration at lunch.
This is something that can be very beneficial, and is important for your family.
All disabilities are included.
You can register at:https://soonersuccesspoteauotr.eventbrite.com/
By Kodey Toney
When The Sun Goes Down
It's been a week since I wrote the last column on a plane to Virginia. This time I'm again on a plane, and on my way back to Oklahoma. This week has been, in a word, overwhelming.
In addition to learning more about disability law from some of the top lawyers and advocates in the world, I also had the good fortune to make new friends. After all networking is one of the best ways to help advocate for your family and others.
Despite a two-day journey back home this weekend, courtesy of Southwest Airlines and their delays, reroutes, and cancellations, this trip was great.
I could bore you with a bunch of the legal mumbo-jumbo, but instead I'll tell a few of the personal lessons I learned.
The first that comes to mind is something I think we have a tough time with still. Don't let anyone, including the New York Bar Association, tell you you're dumb or can't do anything. Marilyn Bartlett spoke to use about the time that she took on the NYBA because, despite her learning disabilities she earned her law degree but was not allowed to take the bar exam with extended time. She was made to feel dumb, worthless, and lazy because of her learning difference.
It's a shame that others can't understand that just because it's difficult for you to learn a certain way doesn't mean that you are dumb. It means that we need to find another way to make you shine.
The next lesson I found very useful. If you advocate for anyone other than yourself or your child you can't quote the law or it's considered unauthorized practice of law. Kayla Bower of the Oklahoma Disabilty Law Center scared the advocates a little on this one, but for good reason. This can get you into a ton of trouble. This is why it's important to be creative with the way you let others know that you know the law and expect them to abide by it. One way I'll share with you is to ask them how they interpret the issue at hand. Show them the law or statute and ask them what they think it means.
My new friend Jim Comstock-Galagan taught me a couple things, but one was that you can use personal characteristics to help others understand your standpoint. They have to relate to your cause, but if they don't have disabilities or children with disabilities it can be difficult. Jim takes something personal; race, religion, sex, etc. and uses that to help them relate. This can be a powerful tool if used correctly. You're not trying to insult, just help them see why this issue is so important to you.
He also taught me that, if you want to ride a historical landmark you have to find ways to convince the powers that be to make modifications. Jim lives in New Orleans where they have street cars from the early 20th century. The problem is that Jim, because he uses a scooter to get around, can not ride them. When family is in town and wants to ride them he cannot. He tried to work with the city council, but because they were part of the historical register nobody wanted to modify them because they felt it would alter their historical significance. He found a councilman and explained that he would like to be able to ride them, and used the mans race as a reference to help him understand why this was not right.
Pete Wright reminded me that you have to do your homework. This may be something I've known that I was reassured this weekend. You have to know the law even if you are not a lawyer. You have to know why you can ask for the things you want and why you should.
And from my new friend, and advocate extraordinaire, Pat Howey, I learned a lot, but most importantly I learned you have to take life one sunset at a time.
By Kodey Toney
Reflections Of The Way Things Used To Be
As I'm writing this I'm on a plane overlooking Oklahoma City this morning. I mention this because as I reflect on the things I've been doing lately to help others I'm amazed at the things that have happened.
I started writing this column/blog a little over three years ago. It has been an avenue for me to get information to a large number of people. As I learn about new things going on, or have ideas and techniques fed to me by professionals and other families I try to provide that to others.
It has also been a good way to just vent at times. The best response I've had has been with articles that let others know that they are not alone. Other people are having the same problems, or at least similar.
I meet people all the time who say, "I read your article every week." That amazes me that I would put something out that was important enough for people to read every week.
With that, I'm also amazed at the places it has taken me. It's important for us as parents to continue to learn new things for our children. We have to stay up to date on the things that are happening and discover new resources. That is why I try to make as many conferences and workshops as possible. This is where I find out what is available to us in our rural area, and try to bring in new resources.
That is the reason I'm on this plane this morning. I'm on a flight to Virginia to study disability law for a week at William and Mary College. This is all possible because I met Kayla Bower and Roseann Duplan of the Oklahoma Disability Law Center, through the Partners in Policymaking (PiP) program and conferences where I basically begged them to let me go.
I got into the PiP program because a speech pathologist, Joe'l Farrar recommended it.
With others, the Pervasive Parenting Center has been able to start a Sibshop, launch a website atwww.pervasiveparentingcenter.org, receive our 501 (c) 3 status, host several conferences including two Joining Forces conferences with the Oklahoma Family Network, provide IEP training for families along side the Oklahoma Parents Center, help start a National Alliance on Mental Illness (NAMI) chapter with help from others like Don Patchin, and work with great people like Lisa Fabian, the Tony Hawk Foundation and Peter Whitley, Darrin Zdanowski and Charles Steiger and Forgiven Skate Team, JD Danielson and Cross Eyed Skate Team, Josh Klinglesmith, Ed Mayer and many others that I'm sure I'm forgetting, to provide a great skateboarding competition in our area. This not only helps raise funds for the center, it's also a way to bring people to our beautiful area, bring in commerce, and allow the kids an outlet for their passion.
I think the point I'm trying to make is that you have to network and explore in order to help your child. Am I saying that you need to hop a flight halfway across the United States? No, but you can get outside of your house and work with the therapists, educators, and professionals to find new resources. You can attend support group meetings and meet new families.
I have to mention that family support is one of the greatest things to helping me help others. If it weren't for my wife Jennifer I wouldn't be able to do this. She is an awesome person and my blueprint, guidance, and rock. Our families are great in watching the boys too, and allowing us to travel when necessary. I know that most families don't have that, and I'm grateful.
I hope to share much of what I learn this week with you next week, and thanks for letting me reflect a little. Oh, and thanks for reading this.
By Kodey Toney
You Are Not Alone
This week I want to talk about community. I know that this may seem like an obvious subject to some, but building a community around you and your child with a disability will help make your life easier.
I was reminded how important a strong community is this weekend when we held the Annual Skate Slam in Heavener and Poteau. The people involved in the three-day event were awesome in getting things organized and getting the word out. There were more than 100 participants, vendors, and organizers, and each worked in harmony to make the weekend go smoothly. This was because of the group that organized the event. Lisa Fabian, Darrin Zdanowski, JD Danielson, Charles Steiger, Peter Whitley, and everybody else involved (I’m sure I’m forgetting a lot of people), worked together to make things happen.
That got me thinking about how this is the same with families with disabilities. You have to have a strong core group to make the other parts of your world work together. That community controls what happens in the life of your child, so you have to try to find that harmony for things to work right.
First you have to build your community. This can, and probably will, include family members, therapists, counselors, teachers, administrators, doctors, and other families.
Some of these seem obvious, but you must get your family members, both immediate and otherwise, on board with what’s going on. This affects everything from family get-togethers, to emergencies, to just having some alone time (who knows what that really means).
The school is a good example of harmonious communities. You have to keep this in mind in order to get the resources you need for your child. This may be the one that tests your limits a little, but I promise that if you keep them in your community and on your team things will be good for you and your child.
You must find others that have been through what you have. This will be a great part of your community. This works in so many ways. Support groups like the local Parents of Autism are great for just finding out what is available in the area, and they are a good sounding board to vent to. The Oklahoma Family Network is designed just for this type of support. They will match families to other families in their area to share resources and stories.
You have to understand that you are not in this thing alone. Sometimes it feels that way, but you will always have someone who has been there and seen some of the same things you have. We all have different stories, but in the end it’s all very alike.
Sunday, August 3, 2014
By Kodey Toney
I Melt Every Time You Look At Me That Way
I'm going to discuss a topic that I've talked about in the past, but recently Konnor had a big meltdown and I want to go through what that was like from a parent's perspective to give everybody an idea of what I was thinking.
As I've said in the past, meltdowns are different from tantrums. A tantrum is something that is preventative, and that you are able to stop if necessary. A meltdown is not easily controlled and not easy to prevent.
We were sitting at my mom and dad's house the other day and Konnor was in another room playing on the computer while we talked around the table. I heard Konner having some minor screams and rage issues so I kept going in to check on him.
Each time everything seem to be going okay. I could calm him down pretty quickly. There were some issues with the computer that seemed to be setting him off.
One particular time Konner started screaming and my niece went in to check on him. After a couple seconds I realized that she wasn't going to be able to control the situation, so I went to check on him.
It was at that point I realized we were in full meltdown mode. Konnor was screaming uncontrollably, and when I went to grab him he started pushing me away and swatting at me with his hands.
He had that glazed look in his eyes. This is a look i've often talked about. If you have a child with autism and they've had a meltdown you'll know this look.
This is one of the most helpless times for a parent with a child on the spectrum. You know at this point that there's not much you can do to console the child. You can try the different techniques like hugging, joint compressions, and breathing, but once the glaze goes over the eyes there's no turning back.
It was at this point that I grabbed Konnor and remove him from the computer area. I pulled him away a little bit so that he no longer can break the computer, and as I grabbed him he started hitting himself in the face.
This was new. While Konnor has scratched himself, and done some minor hitting, This time he was actually punching himself in the face with both fists, and if I grabbed one he would hit himself with the other one.
Once I grabbed his arms to keep him from hitting himself he broke away and started hitting me, which is fine, I can take it, but I don't want that to happen to someone else. I would rather him hit me than to injure himself, so I wanted to make sure that he knew that this was an okay choice at this point. The whole time I was trying to get him to calm down.
Rule number one with a child in meltdown mode: you're not really going to get them to calm down until they calm themselves down. Most times you just have to let it run its course. I know this is a tough thing, and I know it is one of the hardest, most helpless feelings in the world. However, there comes a point where there's no controlling them. You can try the pressure techniques. You can try the joint compressions. You can try all the tricks in the book, but you're not going to control them until they work their way through it themselves.
Well this was one of the worst meltdowns he's had in a long time. It was also quickly resolved. I just tried to talk calmly to him, which is unusual because sometimes I begin to lose control myself when I can't help him. I just kept telling him it was going to be okay. I kept trying joint compressions which wasn't working. I kept trying to get him to leave. I didn't know if there was something in that room or in the house triggering the meltdown. I didn't know if it were just a situation that was causing it. We changed medicines with him, and that could've been causing some of the issues but I had no idea.
I just wanted to get him isolated, calm him down, and get him to a familiar place like home or my vehicle.
All of this seemed to work pretty well, though the next time it could not. You never can tell with a child on the spectrum from one meltdown to another. You just have to use trial and error.
If you're confused about some of the topics I talked about in this column like joint compressions and the pressure techniques you can check out some past articles onBlogger.com/pervasiveparenting
I'm not sure if any of this will help you pervasive parents out there. I hope it will, but I also just want you to know that you're not alone.That helpless feeling comes to all of us when the meltdown strikes, and we don't know what's causing it or how to make it stop.
Sent from my iPhone
By Kodey Toney
He Was A Skater Boy
Did you know that skateboarding and autism go hand-in-hand? Neither did I until a few months ago when I received a phone call asking me about autism resources. I had a lady call me and ask if I knew of any local organizations linked to autism. After a discussion about a couple other groups I mentioned the work we’ve been doing with the Pervasive Parenting Center and she immediately jumped at the chance to help out. Lisa Fabian, the chairperson for the Nashoba Youth Foundation, had contacted a friend put her in contact with me, and I’m so glad they have involved us in the 3rd Annual Oklahoma Slam Skateboarding For Autism Awareness.
Let me start by saying that it has been an honor to be selected for this, and that Lisa Fabian has been working like crazy to organize a great event. There are skaters, vendors, and groups from throughout the United States pitching in to bring a world-class skateboarding experience to our small neck of the woods.
This will be held July 25-27 at both Heavener and Poteau skate parks. This includes skate camps and competitions throughout the three days. Prizes, music, and food will be available.
Knowing very little about skateboarding competitions I do know that there are some big names involved including Vans, Walmart, Forgiven Sk8 Team, and Anthony Mosley, one of the top skateboarders in the world.
The fact that they want to help spread autism awareness to the world is reason enough to come to the competition, but the fact that there will be some great competitions and family fun will make this a huge event for the area this summer.
The fact that the funds raised are going to help the families in this area with autism and other disabilities is just an added bonus. The Pervasive Parenting Center has already helped bring conferences and trainings to the area to help the families and will continue to do so thanks to these donations. The Center has worked to help families learn about Individualized Education Plans (IEPs) as well as finding resources and community involvement. We are working to educate families, professionals, clubs, organizations, and businesses to better serve those in our area who are coping with disabilities.
As I was researching the subject a little I found some related topics I thought would be interesting to the pervasive parents out there. There is skateboard therapy out there for children with autism. I know that there are some places in Tulsa and Oklahoma City, but I could not find any local. I think I may challenge someone to come up with that for our area.
There is an organization called the A.Skate Foundation that helps put on clinics throughout the U.S. for children with autism. They use this as therapy for the children to help with social and fine motor skills. This is a great program for the skaters involved as well because it helps them interact with the children and get a glimpse of what it’s like living with autism. Their website is:http://askate.org/.
I also saw that Facebook has a group called Skateboard for Autism. They use skateboarding to help raise autism awareness and create therapeutic skateboarding programs in the UK and US for children and adults who want to ride. Their mission is to “promote as a therapeutic tool for children and adults with autism as well as raising awareness for autism through the passion of skateboardning by various riders, outfitters, and professional skateboard companies throughout the world.” This is worth checking out too.
As I said, I would have never thought, but it is a great fit for children with autism.
Kodey Toney, M.Ed.
Pervasive Parenting Center