Sunday, August 3, 2014
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
Build your own community
Not it this alone
Find people who have been through it
Sent from my iPhone
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
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.