Headed in the Right Direction

Pervasive Parenting
By Kodey Toney

Headed in the Right Direction

Konner and Kruz recently received some sunflower seeds to plant and they have started growing in a pot on the front porch. It has been really good for Konner because he has been taking care to make sure that they are watered and growing. They have been going for about a month now.
Yesterday he came in to the house, ran to our bedroom and said, “Dad, our flowers have grown so much.” He was so excited that he has seen so much progress on something that he has worked so hard to grow.
In almost the same breath though, strangely, he said in a frustrated tone, “They will never get really big.” His patience is about to get the best of him.
“No matter how much sunlight, no matter how much I water them, no matter how much I talk to it (he has read that if you talk to them they will grow so he talks to them), they will never get bigger,” he continued. “It’s going to take three months!”
He wants them to be ten feet tall tomorrow. He doesn’t quite understand yet that things take time, and as long as you take your time, and nurture them they will continue to grow until they reach at potential.
The funny part is that I see this in the parents that I work with some times. They feel like their child is not progressing fast enough. They want so much more.
One thing I ask for when trying to determine where a child is in school or with therapies is testing. I want to see all of the testing they have had through the years. The more the better for me. I want to compare where they have been from the beginning, and see how it stands up to where they are on the most recent. As long as there is an upward slope on those scores then there is progress, no matter how small.
The problem is that parents want everything to happen overnight. I get it. I was, and am, the same way. I want my some to progress as quickly as possible. The thought becomes, “If he gets therapy twice a week for 30 minutes, and it is working then I want him to get it four or five times a week. That will make things happen faster right?”
The answer is, most likely no. In fact, a couple things happen. The child is most likely going to get burnt out on constant therapy, the parent is going to get tired as well, and the child will shut off to learning new things.
That’s really not the way therapy is designed. It’s actually supposed to be something that a therapist works on, plant a seed in the child’s head, and then the parent should be asking questions and using those techniques at home and in real life settings to help the child develop outside of the therapy setting.
The therapy is the seed, the parents are the water and sunlight. If you take care and nurture them, you will see progress. Don’t forget, that no matter how little, any progress is still progress. As long as they are not regressing then you are headed in the right direction.

I've Been Really Trying Lately

I've Been Really Trying Lately

By Kodey Toney

This is part two from my visit to the Tulsa Autism Conference a couple weeks ago.

I think most everyone has been to church on Sunday morning when you feel like the preacher has chosen his sermon just for you. You get a little uncomfortable and start squirming in your seat just because you feel the pastor is talking directly to you. This is exactly how I feel each time I hear Dr. Jed Baker Speak.

Baker is a behavior specialist that works with all age groups, but particularly he has many books and programs for transitioning-aged students with disabilities.

I was fortunate to have an opportunity to speak with him in between sessions and he was very helpful and approachable. We talked about a new program that we are working on with the Pervasive Parenting Center that we want to begin in the summer to help with transition and social skills.
However, when he started speaking in the conference it was back to church for me. He started pointing out everything that I’m doing wrong as a father. Let me stop and explain something that I have said several times, I am not the perfect father. In fact, I am far from it.

I talk to parents everyday about ways to work with their children to help with behaviors, and ways to be better parents. However, when it comes to everyday parenting with my sons I sometimes forget those things. I guess that’s why I always say I’m not an expert. I get caught up in the moment and forget all of my training that I’ve been through. I yell, and I make situations worse which breaks the first rule that Dr. Baker brought up.

He stated, “If I can be chill I can help you be chill.” This is great advice and makes so much sense, and in the middle of my rants with the kids I often think this to myself and then I get upset with myself. I know better.

If we can keep our composure when our children are already overstimulated and on the verge of a meltdown then we can help them to stay calm. Your child can feel your frustration and feelings, even though we think they don’t fully understand emotions, they know when you are upset.

Which brings us to his next point. He said we don’t want to put out fires after they have been spread. We want to help prevent fires. I am always telling parents, educators, and professionals that the main focus for meltdowns or behavior is to stop it before it starts. I know that is easier said than done, but for the most part we are just looking for stemming behaviors or signs and then trying to find the reason behind the behavior.

If we can see that a child is starting to pace then we know there is a reason. If we can find the reason then we can start to deescalate the situation.

The refreshing part of his session was when he talked about going to the grocery store and his children act up, he’s dragging them down the aisle, and they are being loud and people think, “Aren’t you the behavior specialist?” It makes me feel good that I’m not the only one that is supposed to know better and still has problems.

Just remember, if you do your best, and you understand that you may have made things worse, then you can at least understand and try to change things the next time. I really do try to make things better the next time.

Caught Up In You

Pervasive Parenting
By Kodey Toney

Caught Up In You

This weekend I had the opportunity to travel to Tulsa with Jen and Terry Yarbery to listen to some of the best advocates in the business. While I've seen both that I will talk about here before, I always learn something new each time I see Dr. Temple Grandin and Dr. Jed Baker speak. Most would probably know who Grandin is (if you don't look her up, she is very inspirational), but Dr. Baker might be a little lesser known.
This may be a two or three-parter as I try to share most of what I found interesting.
I want to share a little information from them that I feel is important. Some of it maybe something I've said before, but sometimes just having a refresher course is nice.
Dr. Grandin expressed several times, "Don't get hung up on a diagnosis." This is great advice that I try to tell parents all the time. Autism is different than many other disorders in that it presents itself differently in each person.
"Treat the symptoms," said Grandin, "don't treat the label."
This too is great advice. I always talk about building up a tolerance of the symptoms. If you have a child that has sensory processing disorder then you are going to work on ways to help them cope with flickering lights, loud noises, and strange touches. Of course even that is different in each child.
Temple said, "You have to stretch them. Don't throw them in the deep end."
This means, ease into things. Don't just push them into a large noisy crowd and say good luck. You are just asking for a meltdown.
My example is always what we have done with Konner in the cafeteria. We started by letting him stay until we can see him begin to stem or get irritated. Then the next day we pushed him to stay a little longer. Just keep adding time and building the tolerance.
She explained that you should always give instructions instead of saying no. This works for all kids by the way. If you are going to say no or stop then they may not understand why you said that, or what they are supposed to do. An example would be, instead of telling a child to stop when they are kicking the desk in front of them, tell them to keep their feet on the ground. This may sound too simple, but it helps them understand what to do. Sometimes just saying “stop” makes things more complicated. They will have to stop and think about what he is doing and which part he needs to stop.
I'll stop here for this column, but be back with more in the next about Dr. Baker, and some other interesting programs.

The Advocate

Pervasive Parenting
By Kodey Toney

The Advocate

Last Monday was Autism Day at the Capitol in Oklahoma City. I had planned to attend myself, along with Terry Yarbery that works with me, but something in me thought to ask Konner if he wanted to go. I felt like this would be a great opportunity for him to start thinking about self-advocacy, and it was a great chance for the legislators to meet him and put a face with a name. I am constantly talking about him, but to be able to actually talk to him and see him is really eye-opening sometimes. They get to see what a great kid he is first-hand.
So I asked Konner if he would like to go, giving him the choice of opting out if he wanted, and to my surprise he said yes. He wanted to actually spend the day with Dad and drive to OKC.
Then I asked if he wanted to wear an autism t-shirt, or a shirt and tie. Again, to my surprise, he said he wanted a shirt and tie. So, Jen went out and bought him a blue shirt and tie. This of course meant that Dad had to wear one too though, but I found the closest matching one I had and we dressed nicely to meet the legislators.
I then emailed the local representatives and senators and ask for a meeting and possible photo opportunity. Though I didn’t hear from all, I had a majority of them respond back.
On the way up I was prepping him in the car. I was asking him what he was going to say, what he wanted them to know about him and autism, and explaining that he had to be on his best behavior and no yelling. He’s in an angry stage lately and I just knew the first thing he would do is scream at one of them. What we finally settled on was that he would say, “Hi, I’m Konner,” when we met someone, and shake their hand. I would just see how the rest goes as we went along.
For the most part everything went extremely well. Konner did great, and other than a minor setback in Rep. Rick West’s office he was pretty amazing.
Rep. West was the first member we visited, and he was very gracious to us. He welcomed us in, Konner introduced himself, and as they started to talk about Thomas the Train, which I thought would be perfect, Konner became agitated. This is because he was going to say something, and forgot. This frustrates him all the time at home. Terry began calming Konner and took him into the hallway for a walk. I used this as an opportunity to explain behavior therapies and early intervention strategies to Rep. West. As the photographer arrived Konner threw himself in the floor, and we had to get him calmed again. Just as the picture was being snapped Konner said that he remembered what he was going to say, and everything was peaceful from that point on.
Next up was Rep. Ed Cannaday. Rep. Cannaday and I have known each other for a few years now, and this one went extremely well. Mr. Cannaday even took Konner to the House Floor and let him sit in his chair while we took pictures.
Rep. John Bennett welcomed us as well. We had a great visit about healthcare and autism matters, and as we left he even gave Konner a bible.
Sen. Mark Allen was the final stop on our day. While we had to wait, I appreciate that he took the time and even left a committee meeting to have his picture taken with us. He was very nice to us.
I just want to say thanks again to all the members that we were able to talk to that day. Thank you for taking time out of your busy schedule and being so hospitable to myself, and most importantly Konner.
It made for a good day for me, and Konner had such a great time that he will remember for a long time.

Flashback

Pervasive Parenting
By Kodey Toney

Flashback

As I write this on World Autism Day I am reminded of many things that I've learned, said, and thought over the nine years since Konner's diagnosis. I'm going to share some of them this week. For some this will be like a flashback episode of your favorite sitcom. For others hopefully it will just help you better understand autism.
I feel that on this Autism Awareness Day I should share something that I say often when I'm talking to groups or at trainings. It's nothing that I really came up with on my own. I always tell people I just regurgitate the things that I've learned from my mentors, but I feel it's important and my philosophy if you will.
The Center for Disease Control says that 1 in 68 children in America are diagnosed with autism. That's up from 1 in 88 a couple years ago, 1 in 110 when Konner was diagnosed in 2007, and 1 in 1000 in 1980. That is a 72% increase since 2007, and more than 200% since 1980. More than 1.5 million Americans are affected. According to Autism Speaks, that is more than are affected by diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome – combined. These numbers are staggering, but it means that we are very aware of autism. I would bet that everyone reading this knows someone with autism.
It's no longer about awareness; IT'S ABOUT ACCEPTANCE! We have to accept children, adults, and everyone with autism for who they are. We have to love them for their quirks. That's what makes them who they are. We have to help them be who they are, and stop trying to change them into who they are not.
That is something that I share at trainings and speaking engagements because I think it best describes why I do what I do, and my philosophy on advocacy.
I have heard this gem since day one, and I'm reminded each day, as I meet new kids and adults with autism, just how true it is. The famous, "Once you've met one person with autism you've met one person with autism." While they have similar characteristics they are all different, and they are all awesome in their own ways.
"Autism is not the end of the world, just the beginning of a new one." Man, this couldn't be more true for me. Nine years ago I would have never seen myself in the role I'm in now. I was working on being a rock star on the road, but as they say, if you want to hear God laugh tell him your plans. God has shifted my life in a whole other direction, and I can't be happier than doing what I'm doing now. I owe it all to God, Konner, and my wife.
And finally, "Autism is not a tragedy, ignorance is." I feel personally it has gotten better over the years. I don't know if that is because I have learned enough to combat the ignorance in the world, or that people are becoming more aware and accepting, but I do know that it seems more people are on board with the differences in our children. There is still a lot of work to do, but that's pretty cool.

Take The Highway

Pervasive Parenting
By Kodey Toney

Take The Highway

I usually try to keep up with what’s going on in the world of autism, and one of the best out there to follow on social media is Ellen Notbohm. She is an author of some great books, and a champion for all with autism. This morning I saw a post that she made that made me stop to think a little, and so I wanted to try and hit on my opinion a little.
Her post was as follows: “Can we please be done with "high-functioning" as a way of describing a child with (autism)? Every (autistic) kid I ever knew was functioning at the highest s/he was capable of at that point in development, and every one of them was capable of more ("higher") given appropriate supports, encouragement and opportunities. Meaningless comparatives help no one, not the child nor anyone trying to formulate how best to help the child. As I am quite fond of pointing out, watch how low-functioning I am in that boring, boring meeting after a large lunch.”
Great points in there. While I agree completely I will counter a little.
I always tell parents that I hate labels, but they are necessary when they are necessary. What that means is, we don’t need to point out disabilities unless we have to in order to get services. That is the only time it is required to point it out. Think of it this way; why don’t we say that someone is near-sighted. We know they have a vision impairment because they have glasses. We don’t need to tell someone that a person is in a wheelchair. That is obvious.
So, we shouldn’t have to point out autism, although I will say that it is not visually as obvious as other disabilities. However, stick around long enough, and know what you are looking for, and you will see the apparent signs.
With that, then Notbohm is correct. We don’t need to say high-functioning or low functioning. They are functioning the best they can. It is our job to make sure that they are operating at full capacity, and then increasing that to push them further in life.
If for some reason you have to let someone know; let’s say you are on the phone and they ask where your child is on the spectrum, they can’t see them to tell the signs, and they are trying to evaluate for some strange reason, then you can tell them what level they may be functioning at on the spectrum.
Remember, this is a spectrum, so there are many levels. Every child is different after all. You should probably just let them know what they can do, and what they are NOT YET CAPABLE OF and leave it at that. Yes, I put that in all caps because I want people to understand that the only limitations on a child are the ones we set for them, or they set for themselves. Otherwise they can do anything they want to with the proper tools and encouragement.

The Dreamers of Dreams

Pervasive Parenting
By Kodey Toney

The Dreamers of Dreams

I had the privilege to attend a local performance of the musical Willie Wonka. The group of children and young adults were great, and while the lead performers were awesome, two of the budding thespians stood out to me. Now perhaps it's because I'm a little biased and I know their stories, but I wanted to point out how great Mrs. Gloop and Mr. Salt were.
The fact that anyone, especially a child, would get up in front of a crowd and perform, let alone sing is in itself a great feat. However, when you realize that these two are on the autism spectrum it makes things even more remarkable.
Just a few short years ago either one would have had a hard time holding a conversation with a stranger. I know because I've been fortunate to have observed them both from afar.
Res is the son of a good friend and board member of the Pervasive Parenting Center, Regina Smith. I had him in Cub Scouts, and he would talk, but that was very limited. However, on stage Sunday afternoon he not only spoke, he sang and made the acting motions; not just standing there reciting lines.
The same could be said for his co-star if you will, Alea Gonzalez. Alea has come so far, and is a wonderful self-advocate. So much so that she was recently appointed to our board of directors alongside her mom Amber.
For me, Alea stole the show. The German accent both in speaking and singing was a hit, and her comedic timing was great.
I have read before about how there are theater programs working with children on the spectrum. They can help with social skills and interaction. I have now seen this in motion and think it's a great idea.
I want to say thank you to the directors and anyone behind the scenes that helped make this possible for all the children, but especially for helping these two shine on stage.
Oh, and a special hats-off to the parents. Well done!