Double Vision

Pervasive Parenting

By Kodey Toney

Double Vision

We know that children on the autism spectrum are tethered to routine more than other children. This is why last week’s spring break paired with remodeling our house was double-trouble for Konner.

Let me start by saying that anytime we have a break it throws Konner’s schedule off so much that he is confused, emotional, and tends to have frequent meltdowns. However, this one was different; some good and some bad.

We had planned on a vacation several states away which I was kind of dreading because long trips in the car are crazy with him. However, do to some other circumstances we decided to stay home and remodel our house.

I know, crazy change in plans.

With this we started ripping out carpet, moving furniture, removing trim, and completely rearranging the house. This alone caused Konner to stand in the middle of the house for long periods at time and just look around. He was trying to figure out what was going on and get re-acclimated with the situation.

He would then run through the house screaming and jumping around, literally bouncing off the walls at times. This happens on breaks and I was ready for that. However, I knew we were not going to get anything done, and the construction and debris could cause him and Kruz to hurt themselves so we had our parents take turns watching them throughout the week (thank you Judy and Teresa).

This helped in ways because we didn’t have them in the house, but it also was different for Konner. He is comfortable staying with both sets of parents though, so that was a good thing. By Friday though he was ready to get back into routine and asked when he was going back to school.

When he would come back home in the evenings he would stand and look around and then get excited about the new things he saw. He really liked it, but you could tell he couldn’t get used to it being different.

The good news is that he didn’t have any meltdowns, at least that I knew about, during the week. He was emotional at times though and would get upset over small things like his iPad or his brother and come into the room with tear-filled eyes to explain why he was upset. This is something typical for him when he is over-stimulated.

I count this as a success though. It is proof to me that what we have been doing over the years with him has been working. Only a couple years ago this week would have been a complete nightmare. He would have probably been in full-meltdown mode at least once a day. It gives me hope that we are doing the right things. Not that we don’t have a long way to go.

Look What The Cat Dragged In

Pervasive Parenting

By Kodey Toney

Look What The Cat Dragged In

Since April is Autism Awareness Month, and that is just around the corner, I think this is a great time to make a couple big announcements. I have hinted to one of these for some time, and I know that some people already know some of this, but I feel it’s time to officially let the cat out of the bag and go public.

I would like to formally make it known that a pet project of mine, the Pervasive Parenting Center has launched. This is a resource center that I have dreamed about opening for a couple years, but I have now actually put into place. The center is a non-profit organization for our rural area to help spread awareness and provide families in this region with resources, support, and knowledge.

You see, when Konner was diagnosed in 2008 my wife and I knew very little about where to turn and what to do. We did our research through the years and have found that there are some resources available, but that they are limited and not very well know.

After completing the Partners in Policymaking program through the Oklahoma Developmental Disabilities Council I realized that I could make a difference by establishing some place in this areathat people could contact to find these resources. What resources we lack I would love to eventually try to set up. Those are some long term plans, and since I’m working out of my house at this point I will say that I am available to help anyone with a disability to find the things you need to help make a better life. If I don’t know the answer I will find it.

While I am the director of the center we have a board of directors made up of local professionals, business and community leaders, family members, parents, and self-advocates. This group will help to guide me as I try to assist the citizens of this region navigate the disability world.

This is not limited to autism. Although that has been my main area of focus, I’m looking to help anybody or family coping with a disability. This includes, but is not limited to down syndrome, cerebral palsy, spina bifida, etc.

Part of what I am doing is to help spread awareness throughout the region. I have been speaking to clubs, organizations, businesses, schools, civic groups, families, and anyone else who will listen about what autism is, about not using the r-word, about people first language, and generally how to help people with disabilities, and in turn how to treat people in general.

We’ve also been partnering with statewide agencies to help bring conferences and speakers to the area. On April 26 there will be a Leadership Conference in Poteau sponsored by the Oklahoma Family Network to help families partner with agencies to provide better services for their children. This is the second of its kind in eastern Oklahoma in six months, and I will have more information on this in the future. We also are working with the Sooner Success to help bring an On The Road Family Perspective Conference to the area in September. Again, I will give more details as this is just in the works right now.

These are just a few of the things we have going right now, but one of the first things the Pervasive Parenting Center is doing is to hold an Autism Awareness Walk in Pocola on Saturday, April 12. This will be held at 3 p.m. at the Pocola City Park. The walk will be held to raise awareness for the growing number of children diagnosed with autism each year. Everyone is welcome to attend. There will be free food available.

Please come out and support autism awareness in our neck of the woods. We would love to see a huge crowd.

If you have any questions about the walk, or where to find services please contact me at 918-658-5076 orpervasiveparenting@hotmail.com.

I Roam Around, and Round

Pervasive Parenting

By Kodey Toney

I Roam Around, and Round…

Children on the autism spectrum are often very curious by nature. They tend to follow those curiosities wherever they may roam. This is why most children with autism will wander off given a chance. Konner is one of those children, and a recent Facebook post by the National Autism Association has given me inspiration for this week’s column.

The post was a toolkit to help families with children who run.“Be REDy: to Prevent Wandering” is the name of kit the organization released in the fall of 2012. It has some great tips and information for parents to help keep your child from roaming, and also to help in case a disappearance happens.

One of the first things the kit does is to define wandering. Also known as elopement, it can include bolting and running as well. When Konner was little he was a runner. Anytime we went anywhere I made sure that I or my wife had a good grip on his arm or hand.

Although I hate to discuss it, we need to make sure it is known that one of the leading causes of death for children on the spectrum, especially when wandering, is drowning. This is because they are attracted to water; whether that’s a swimming pool, pond, or lake.

They also discuss wandering types. This includes goal wanderers who have a target or intention. Unfortunately they are most likely headed to something dangerous like water, train tracks, or something that has grabbed their attention.

The next mentioned is the bolting/fleeing child. This is someone who impulsively takes off running. Usually they are trying to get away from a bad situation. This can include overstimulation, nervousness, anxiety, etc.

They also discuss other/nighttime wanderers. These are childrenwho usually are disoriented, bored, confused, or just lost.

Once you have figured out which wanderer you have you can better work to find the child.

They have a checklist to help keep your child safe. I’m only going to share a few of these, but I will give the website at the end so you will have the whole toolkit.

The obvious one on the list is, “Have I secured my home?” This may seem like a no-brainer, but you have to remember that some children, like mine, are escape artists. You must think like them and try to find every possible route out of your home. If you miss it they will find it.

One thing that is very important that is included in the kit is a social story. You can read the story to your children to help them understand, this, and to help them know what could happen if they do.

Swimming lessons are an idea throughout the kit. This can help in case the child does stray to a water area. Konner has been in the pool since he was a baby. This doesn’t mean that he can’t drown, but at least he has a fighting chance. ​

Make sure that your neighbors are aware of your child’s habit. Let them know how to contact you, and how to approach your child if they should wander around their house.

You can make a tag or ID that you can attach to the child’s shoes or clothing. This will contain contact information, a diagnosis, and any other important data you feel someone should know.

You should address wandering at school. I was in Kruz’sclassroom recently for a party and there were alarms going off every time someone would walk in the door. A parent asked the teacher if that was annoying and she said that she has gotten used to it. I had to speak up and explain that my child was the reason they were put into place. When Konner was younger we had to ask that they put these on the exits. We also had the school reinforce the gates on the playground area to make sure they would latch.

The kit includes stop signs. I had never thought of this before, but you can cut these out and attach them to your doors. I’m not sure if this will work, but it certainly can’t hurt to give them a big sign that screams STOP! Especially since most children on the spectrum are visual.

They also mention temporary tattoos which can be used if you go out somewhere; i.e. a theme park, a park, a family gathering, the grocery store, etc. These are not only a practical way of being an identifier in these situations, the kids will think they are cool.

There are also forms to fill out with information about the child for emergency personnel, and wandering history. These are great ways to understand the child and where they may have strayed.

The site for the toolkit is:http://nationalautismassociation.org/docs/BigRedSafetyToolkit.pdf

 

Sometimes Words Have Two Meanings

Pervasive Parenting

By Kodey Toney

Sometimes Words Have Two Meanings

March 5th is the annual day of awareness to help “Spread the Word to End the Word”. The “r” word that is. Ok, I hate saying it, but for some of you who are wondering I’m talking about the word retarded, or retard. These are words just like slurs of yore that were used in a derogatory way to describe African Americans, Mexican Americans, Italian Americans, and other groups throughout history.

As I was doing some research for this column I decided to look back at one that I did two years ago so that I wouldn’t repeat information (which I will do). As I did I realized that I have learned so much since then. The first thing I noticed is my lack of people first language. If you’re not sure what this is Kathie Snow has some great information at http://www.disabilityisnatural.com/explore/people-first-language.

I also realized that one thing I put in this column was completely wrong, and I would like to address it so that I can set the record straight. I stated in that article that “most autistic kids are either oblivious or immune to the negative association with the word, or any other ‘teasing’ that may come from young kids.” Boy was I wrong. Not only do they hear it, they understand it, and it sinks deep into their being. It has been proven to haunt them throughout their lives.

So, what was I thinking when I wrote this nonsense? Well I was going off of the information that I had found by researching empathy and feelings. The moral of this story is that you shouldn’t just believe everything you read on the internet. I’ve learned from that, but I also know more now because of listening to real people, and not just these so-called experts who run the clinical websites.

That brought me to the real experts. When I was researching some information for an upcoming event I’m working on I found many videos on YouTube about the R-Word. Almost all of them had interviews with people with disabilities, and each person was very emotional about the fact that they hate the word retarded. The sound of it sent rage, sadness, and tears through the individuals in each clip.

Nobody should be made to feel this way, especially not with words that first of all are used with the wrong meaning, and second are unnecessary in any way.

The following is from that same article I penned. I think it is just as important today as it was two years ago.

“Working at a college it’s not uncommon for me to hear someone say, “That’s retarded” as I walk across campus. It’s become a familiar phrase in American speech. Calling someone else retarded is commonplace with most of our younger generations. People spit it out without thinking about the negative connotations associated with it. It has even been used in the past to clinically describe people with mental illness.”

However, no matter how it’s used it should be found to be offensive.

The sad part is when the adults are the ones actually using the word and don’t even realize they are hurting anyone’s feelings. In fact, there are times when it is used because it has been accepted for so long to actually describe a disability.

I often hear people talk about the world being too politically correct. That’s not the problem though. As I stated a couple years ago, and I’ll say again today; “I call it humanely correct. What we are trying to do in this society, or should be as parents, is fight for equal rights. It is a civil-rights issue. With the rapidly increasing diagnosis of children with autism the issue of rights is going to grow.”

R-word.org has some great information, so I recommend checking it out. Read old articles at http://pervasiveparenting.blogspot.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.

 

Life's Been Good To Me So Far

Pervasive Parenting

By Kodey Toney

Life’s Been Good To Me So Far

This week I had the opportunity to attend the Joining Forces Conference in Norman, OK. This is an annual conference hosted by the Oklahoma Family Network, and held to help families and professionals better provide services for families coping with disabilities. This year’s keynote speaker was Michelle “Sheli” Reynolds, Ph.D., from the Missouri Family to Family Network. There were several points in her presentation that I would like to share this week.

The theme of this year’s conference was “A Good Life Is…” which I found to be a great question. What is a good life? This question is not just for your child with a disability. What is a good life for you? I think that once you answer that question for yourself you’ve answered it for everyone in your life. The answer for most of us is a good quality of life.

For those who don’t know I work with local middle and high school students to help them prepare for college. One of the workshops that I do is to help them understand their goals in life. I ask them, “What is your overall mission in life?” After a few minutes of coaxing the answer, we usually land at having a good life for themselves and their (potential) family.

So how do we accomplish this? One of the quotes that Reynolds had that stuck with me was, “Our overall compass is ‘quality of life’.” I think this is a great way to see things. If we keep in mind that we’re looking for the best possible life for ourselves and our children then we’re going to eventually find that “good life” we’re searching for.

Reynolds also said, “People with disabilities and their families have the right to live, love, work, play and pursue their life aspirations just as others do in their community.” This is one of my main goals for this area of the state. I want people to realize that there is a place in life for people with disabilities. We have to find those places and work to get people in the classrooms with their peers, into jobs that they love, and work to help find community acceptance.

Where does this begin? Well, as Reynolds explained, “Individuals live within the context of their families.” What I take this to mean is that what we do, say, and how we act will guide them in life. When we work hard for their rights they will see this and do the same for themselves. As I’ve said several times, we are our children’s biggest advocate.

Another quotable gem I caught from the conference was, “It’s not what you do or how you do it, it’s WHY you do it.” I know this is harder for the parents because we have a 24 hour reminder of why we advocate. However, for teachers and other professionals there may need to be a reminder every once in a while. Don’t forget why you got into the business that you did. Hopefully it was to help individuals and do what is best for the child. If it’s not you may want to rethink things.

These are only a few points, but I thought they highlighted the speech and the conference. WE have to keep focusing on a good life for our children. Don’t forget, what we do today can actually pave the way for others in the future.