Sunday, August 3, 2014

Love Will keep Us Together

Pervasive Parenting
By Kodey Toney

Love Will Keep Us Together

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 group of people involved in the three-day event were so 

Skateboard

Joining forces

Build your own community

Not it this alone

Find people who have been through it

Team





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I Melt Every Time You Look At Me That Way

Pervasive Parenting
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.


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He Was A Skater Boy

Pervasive Parenting

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.

For more information contact me at 918-658-5076 orpervasiveparenting@hotmail.com.

 

 

 

 

Kodey Toney, M.Ed.

Director

Pervasive Parenting Center

(918) 658-5076

pervasiveparenting@hotmail.com

website:www.pervasiveparentingcenter.org

 

All By Myself

Pervasive Parenting 
By Kodey Toney

All By Myself

I had someone give me some good advice this week that I have tried to do, but I guess I've forgotten recently. Konner has been taking golf lessons this summer and has really enjoyed it. Since I am off on Fridays I took him, and his counselor pulled me to the side to tell me that I should let him do things for himself. 
Now, I know this, and try to let him be as independent as possible, but as I stood there trying to figure out why he would say that I realized that I was carrying his golf clubs for him. I was only doing it to help because it was taking a long time for him to get from hole to hole, but I knew he was right. He had several other golfers in his group and none if them had their parents walking around with them; let alone carrying their bag. 
Our ultimate goal for Konner is to be as independent as possible. This is why we work so hard at school to let him do his work himself. This is why we try to get him to do chores like cleaning up after himself. The therapies are so that he doesn't need assistance down the road with socializing or using fine-motor skills. Yet, here I am following him around the course being his personal caddy. 
I will say that before we started out in the course I had asked if he wanted me to go out with him or if he wanted me to stay in and he asked me to join him. Perhaps that is because he wanted me to lug his equipment around, but I thought it was because he wanted me there for comfort reasons. 
Either way I was doing way too much. We have to let our kids with disabilities do as much as they can for themselves. They, like any other kids, are manipulative if you let them. They will have you do everything if you don't watch it. Konner 's favorite line when it comes time to clean is, "It's too hard." Of course, to be fair, that is Kruz's excuse too, and probably any other child's if they can get away with it. 
Make sure you're doing what you can to help, but not too much.

Monday, June 30, 2014

Gonna Get Back To Basics

Pervasive Parenting 
By Kodey Toney

Gonna Get Back To Basics

It seems like I've had a lot of parents come to me recently with children who were newly diagnosed. This brings up the common question, "Where do I start?" The answer to this has been given in some of the first articles I wrote, but I'm going to try to give some of the initial advice I tell parents. This may seem repetitive to some, but hopefully it will help new readers. 
As always, early intervention is the key to helping any child have a more successful life. This means that as soon as you get a diagnosis you need to start therapies. These can vary depending on the child's need. This can be anything from speech therapy, occupational therapy, physical therapy, sensory therapy, and behavior therapy. Understand the each child is different and the specialists, psychologists and psychiatrists, etc. will know what is necessary. If your not sure though you should as the therapist in question. 
The therapy, along with working with the child at home is the best thing. I would ask all therapists what you can do at home, but don't forget to not overwork them. 
We wanted Konner to have therapy all the time until we realized it wasn't fun for him, and that we needed to let him have a break. 
Newly diagnosed children are probably in research mode, which is a good place, but be careful where you get your information. There's some crazy stuff out there. You have to make sure that what you are getting is from a reputable site. Don't hesitate to ask questions. Remember you're not trying to fix them. They're not broken. They just need help to cope with the issues they have due to the autism, ADHD, etc.
This being the summer it's important that that you continue receiving services (OT, speech, etc.). If you revive them during the school year you can have it written into the IEP to continue those services in the summer if the IEP team feels the student is going to regress during the time off.
The main thing is to just keep doing anything you can to help your child. As always, you're welcome to contact me about resources and I will help any way I can. 

Saturday, June 21, 2014

A Family Affair

Pervasive Parenting
By Kodey Toney

A Family Affair

I'm writing this on Father's Day, and though I could write all day about how great my father was, or reflect on the fact that my wife is a huge asset to my parenting skills, like I did around Mother's Day, I want to stop and focus on another family member. This is someone I've mentioned several times, but rarely get a chance to focus on. I was reminded of this all weekend as my wife and I, along with our friend Shelley Johnson, traveled to Oklahoma City for a Sibshop training. 
We were reminded that the siblings of children with disabilities are all too often lost in the shuffle. This of course is not intentional, but there is a certain amount of focus that a child with special needs must receive. 
Konner's younger brother Kruz provides the yen to his sibling's yang. He's the comic relief, the loving  child, and just annoying enough to be the perfect little brother, and I should know I was that little one. 
What most people forget, and I was reminded this weekend, is that the sibling is often the one person who spends most of their lifespan close to the person with a disability. These are the people who will eventually take over the care of that person when the parent has passed on.
They often grow up faster than they should, take over more responsibility within the family, and add more stress on their lives to be perfect. They usually feel they need to over compensate for their sibling's disability. 
This is why my cohorts and I spent two days learning to work with those sometimes forgotten members of the family. We realize that they need time to themselves. They need to know that they are just as important to the family as any other member. 
Sibshops is an international organization that works to shine that light on the siblings and give them an outlet for their own fun time, and now there will be one in eastern Oklahoma. The Pervasive Parenting Center, along with Sooner Success, is sponsoring the program, which will include workshops at least once a month throughout the school year. We are looking to hold these workshops in LeFlore, Sequoyah, and Haskell counties, though the details haven't been ironed out yet. 
This will be open to any child who has a sibling with special needs. This can mean developmental, physical, or mental disability. 
The children will play some games, meet other siblings, have some great discussion sessions, and have some food and refreshments. 
Though the program is not a therapy session, the kids will have a chance to voice their issues confidentially with others who understand their problems. 
This program was created by Don Meyer, of Seattle, Washington. He travels around the world trading facilitators to understand the special needs of this group if family members, and helping others understand their importance to the family structure, and eventually the future of the person with needs. 
If you are interested in your child attending a workshop, or you would like to volunteer please contact me at ktoney@pervasiveparentingcenter.org. You can also check out the Sibshop tab on the website, www.pervasiveparentingcenter.org. 

Sunday, June 15, 2014

The Magic Bus

Pervasive Parenting 
By Kodey Toney

The Magic Bus

If I'm being completely honest, advocating for my son and others can, at times, be exhausting. Sure, it's one of the most rewarding things I've done, but the hours if research, networking, conferences, meetings, etc. can begin to get monotonous. There are other times though, times when I read a great book, or hear an awesome speaker, that revives my passion and rejuvenates my understanding of why I do this. 
The keynote speaker at the recent Governor's Conference on Developmental Disabilities did that for me. I actually didn't look the agenda, so I wasn't aware of the speaker's name. However, when I arrived the first morning I was talking to one of my mentors, Ann Trudgeon, director of the Oklahoma Developmental Disabilities Council, and she explained how excited she was to hear Jonathan Mooney speak. I recognized the name, but couldn't place it. As I thumbed through my program I saw his picture and realized he was the author of on of my favorite books, "The Short Bus". I had done a review of this book a little over a year ago, and began to get excited myself. The ideas in this book were awesome as Mooney gave a first-hand account of traveling around the United States in an undersized bus to talk to people and families coping with disabilities.
Within moments we were introducing ourselves to the author as he sat down at our table. He asked what brought us to the conference and I got to share with him information about my family and the work I've been doing with the center.
This was only a brief conversation as he then made his way to the stage for his speech. 
This is where the magic began for me. Mooney began to speak about the school systems and how he overcame the idea that, if you have a disability you are broken and either need to be fixed or cease to be different. 
He spoke of his own struggles with dislexia and ADHD, and how he was made to, "Feel less because of a diagnosis." Mooney went on in life to overcome these issues and attended Brown University, an Ivy League school, major in English, write two books, and become a successful entrepreneur despite, as he put it, still having dislexia, still having ADHD, and having, "The attention span of a gnat."
So how did he do all of this even though he writes on what he says is a third grade level? He had help from people who believed in him. They encouraged him, worked with him, made accommodations to help with the positive issues and lessen the negatives. He had teachers and professors who saw his potential and do what they could to make him a better student. When he faced difficulties he found ways around them. Despite not being able to spell very well he writes books. He jokingly said he married his spell-checker. 
"I didn't overcome dislexia," said Mooney. "I overcame disteachia."  His problems began in kindergarten when a teacher made him feel like a bad kid because he couldn't sit still in the desk due to his ADHD. She would say things like, "What is wrong with you?" and, "What is your problem?" These sentences are uttered all too often in our classrooms because a child doesn't conform to the "normal" activity. 
Mooney was told he was "dumb", and even contemplated suicide at the age of 12. 
He had to learn that, as he put it, "we don't have a disability. We experience disability in factors of our environment everyday. That experience is in the way disabilities are treated by others." 
"I didn't need someone to fix me," said Mooney. "I needed someone to fight for me." He needed someone to change the environments and stand up to the ideas that there is something "wrong" with people with disabilities. 
He had a professor in college that encouraged him to major in English. Another English professor told him he should probably look for another career path. Mooney said that second professor has signed copies of each of his books sitting on his desk. 
"We just have to Unearth...what is right," said Mooney. "Everyone has something to contribute, every single person in the world. We just have to find a way to tap into that gift and bring it out."
I agree with Mooney when he says that we have to fight against the myth of normal, and let persons with disabilities hear that they are not broken. 
"What's broken is the idea that we should all be the same," said Mooney.