Sunday, May 25, 2014

The King Of Bedside Manner

Pervasive Parenting
By Kodey Toney

The King of Bedside Manner

I recently saw a post on a friend's Facebook asking advice about her doctor. She said her child's physician had used the "r" word and she was disappointed that he would use that word in any capacity. It ended with a future visit when the doctor exclaimed, "You have a problem," and then told her daughter that she was "crazy" and "militant." 
I was reminded of this thread as I read that May 17 was the 60th anniversary of Brown vs. the Board of Education. Of course this ruling was to insure equality among races in schools, but I think it was much more than that. It was another step toward equality for everyone despite race, age, sex, religion, and ability. 
While we've come a long way we still have a long way to go in all aspects of equality. 
National Public Radio (NPR) had an article recently about how people with disabilities tend to be overlooked in medical situations and emergency rooms. The doctors are passing up the individuals with disabilities because the doctors just don't want to "deal with" the patients. One nurse was even quoted as saying, "We drew the short straw here," when she had to care for a man who uses a wheelchair. The resident said, "...let's just get this started." 
The article goes on to state that nearly 20 percent of Americans have a disability, and that less than 20 percent of medical schools teach their students how to talk to their patients with disabilities. 
When I was in Partners in Policymaking I remember a presenter ask us, "out of the many years of schooling a doctor receives to practice medicine, how much time do you think is spent on learning about (developmental disabilities)?"
The answer was less than 15 minutes. The medical professionals are rarely or scarcely taught proper bed-side manner when it comes to those with disabilities. 
The NPR article goes on to state, "Numerous studies have found people with disabilities receive inferior health care, including less information about prevention and fewer screening tests."
The good news is that several medical schools have implemented programs to help those with disabilities receive better health care.
I think this needs to be provided for all healthcare professionals. 
There is no reason anyone should be discriminated, especially for their disability. 
Though the mama-bear instinct probably kicked in it was not unreasonable for my friend to expect her doctor to have some compassion and consideration for the patients he treats. If he is relaxed in his bed-side manner, to me, that shows a lack of respect for those he cares for, and I'm not sure I would trust him with my child's healthcare. 

Sunday, May 18, 2014

Room For One More

Pervasive Parenting

By Kodey Toney

Room For One More

My wife and I decided to take a trip to Kansas City this weekend to visit with family and catch a Royals baseball game. I’m a die-hard fan, and have been since my days of growing up in KC as a child, so I decided it would be a good idea to introduce my kids to the major leagues with a visit. When we arrived at the hotel that we would call home for a couple nights my wife asked me to do something that sparked my interest for this week’s article. She said, “See if they can put us on the first floor. You know how the boys can be; especially Konner.” This made me question what we can do to help when staying in a hotel with a child on the autism spectrum. Here are a few tips, and a story or two.

When we arrived at the hotel I asked the man at the front counter if he had something on the first floor, but he was obviously new and didn’t know if they did, or how to change things if they did. I decided to just go with the third-floor room he gave us and hope that the people on the second floor were forgiving.

You see, my kids are typical boys. They like to rough-house, wrestle, jump off of things, and can get pretty loud. We try to control that, but boys will be boys.

Konner, however, is a different story alone. He has things that go along with the autism that can make him an undesirable housemate at times. Besides the impulsive screaming and potential meltdowns Konner seems to have feet that weigh 50 pounds each. Though he doesn’t really stomp he still has the loudest walk in the world…or at least to me. This is amplified with the fact that he has an impulsive stomp, almost stutter-step, when his medicine has worn off. It’s almost like a nervous tick. This usually happens close to bedtime, which is awesome for all those in rooms around us.

So the first tip is just what I talked about earlier. If you can, request a first-floor room. This eliminates the loud stomping for the people below you. has some great tips that’s I’m going to share.

Most hotels these days have pictures of the rooms on the website, or at least a model room which, if you’ve been in one room they are pretty much the same. It’s a good idea to print off pictures, or at least pull up the page, and look at them together. It’s always a good idea to talk ahead of time about the trip as well and what they might expect.

Pack things that are familiar to your child. Any familiarity is a good idea. Toys, movies, iPads, blankets, pillows, or anything that can keep their mind off of the fact that they are in a different space will be good.

Tell the manager about your child’s disability. This may be a good idea if you suspect things will get out of hand. You would be surprised what they will do to accommodate you if you let them know. We were at a hotel once and had a person complain about the noise of the boys stomping in late afternoon. We didn’t expect anyone to be in their rooms at that time, and we had been at an amusement park all day. The boys were rambunctious and needed to rest for a while. When the front desk contacted us my wife explained that we were sorry and that we would do all we could to keep the boys quiet. She then explained that Konner has autism and it was hard at times. The man working explained that he understood and would try to help in any way he could.

Allow your child to explore the hotel room. Konner has to check out every place we go to. It can take him a while to just make his way around a room to try and get comfortable. Just let them get it out of their system. If you don’t let them investigate it can make things worse in the long run.

Maintain whatever semblance of routine that is possible. This means, if you usually take a bath at 8 p.m. then try to do that at the same time in the hotel. If they go to bed afterward then try to do that. Routines are what drive children on the spectrum most of the time.

Accept that some things may not go as planned. This is the one I have the most problem with. I want things to go as smoothly as possible and when they don’t I feel like I’ve failed to do my job as a parent, which is to keep as much peace and structure as possible. I forget that this is not possible all the time and that things are going to go wrong.

Nothing is perfect, but these tips might help you to have a little better stay next time you are out of time.





Kodey Toney, M.Ed.


Pervasive Parenting Center

(918) 658-5076


Mother knows best

Pervasive Parenting

By Kodey Toney

Mother Knows Best

I know I’m a little late at the Mother’s Day shout-out, but I want to make sure that I address the fact that mothers of children with autism and other disabilities are some of the hardest working parents on the planet. I know there’s no competition, but I have to say that coping with a child on the spectrum can be physically and emotionally draining. There are times when a child can go from happy to meltdown in a split second, and you feel helpless. With that in mind I want to salute the mothers in the disability world.

There is a video that is going around the internet asking people to apply for a job that requires you to work 365 days a year, with no pay, and no sick days. The job pays nothing, and in the end you find out that the job is being a mother. Everyone in the video who actually applied for this job and have an interview over the internet have this ah-ha moment when they realize that their mother sacrificed so much for them and decide to call their maternal figure to thank them.

I think this appreciation is well deserved. With that, I want to make sure that everyone knows how much I appreciate my wife, Jennifer, who is my inspiration and works hard not just for Konner, and even Kruz, but she works to help any child she can through her job as a special education director and teacher. She pushes herself to the limit sometimes working to help anyone she sees that has a need. She exhausts herself physically and emotionally, and comes home often to crash and breakdown in tears when she has a child that she just can’t figure out how to do. She fights and argues with her co-workers at times when she feels like the child’s best interest is not being met. She does everything that she can to make sure that they get all the services they need to make their education and life better.

This, as I said, is not just for her children with needs. She has done this throughout her 10-plus-years as a teacher. She got into the business for the right reason. She wanted to help children. She’s not in it for the time off, and she’s especially not in it for the money…there is none.

Jen is patient, loving, caring, forgiving, intelligent, and diligent. All of these qualities make her a great wife, teacher, and an awesome mother.

I think that if you look at mothers of children with disabilities you will see this blueprint. It takes all of these qualities to endure the long nights, screaming outbursts, judgmental looks and conversations, loss of close friends, condemning family members, hours of travel to and from therapies, doctor appointments, IEP meetings, evaluations, and school visits.

They say it takes a special person to raise a child with a disability. I think that’s not the best way to put it. A child with a disability will make you a better person, or at least it did in my case…or at least I hope it did. With Jen though, she has been that way for as long as I’ve known her, which has been almost 20 years. She loved her students before she had any of her own. When we had Konner you could tell that special love was amplified. I think she asks herself, “What would I do if this was my child?” This question fills her with each child she has to make a decision for at work. For this reason she is one of the greatest mothers I know, but she’s also one of the greatest teachers and people I know. She exemplifies what most mothers with children on the spectrum are like.

For any mother of a child with a disability, happy belated Mother’s Day. I hope you get the recognition you deserve for the hard work you put into making a better life for your child.




Thursday, May 8, 2014

Volunteers of America

Pervasive Parenting
By Kodey Toney 

Volunteers of America

English writer and poet John Bunyan once said, "You have never really lived until you have given something to someone who could never repay you." I think giving back to the community is the biggest gift you can give. This weekend I had the opportunity to see that true spirit firsthand when I was privileged to hear two of my mentors speak at the Eastern Oklahoma Leadership Conference hosted by the Oklahoma Family network in Poteau.
Lundy Kiger and Jim Berngen talked to the crowd of more than 30 about some of the great programs they have had the opportunity to work with over the years. These programs have helped develop communities throughout eastern Oklahoma and have been a godsend to numerous people in their lives. Perhaps more importantly they have inspired many others, myself included, to pay forward that spirit of giving.
Lundy spoke first Saturday and talked about some of the programs and events he worked with as part of the AES Shady Point power plant. As the group has seen a need over the years, Lundy has worked diligently to provide solutions to many of the communities in our area. And while AES has been the funding source for many of those, Lundy's giving spirit has been the driving force.
As I said Saturday during the conference, while working for some of the community organizations like the Panama Businesses and Associates or my wife's work forming and continuing the Panama Parent Teacher Organization, Lundy has never failed to provide assistance in funding for the many events that we have held throughout the years. It seems that no matter what we ask for when I call Lundy his answer is always, "Sure what do you need and how can we help."
Jim Berngen is a man I met several years ago when he was working with the LeFlore County Youth Services.
At that time I realized that Jim was a true giver. He was working with the children in this area to help provide a better life. That in itself is the spirit of what I'm trying to do with the Pervasive Parenting Center.
Jim went on to form a motorcycle club to continue that works of helping protect people in this area from child abuse and domestic violence while continuing to give back with other programs that he had developed.
About 10 years ago Jim decided that he wanted to start a Thanksgiving day dinner for people in LeFlore County. That dinner grew into also starting a Christmas dinner or people in this area. Last year's dinner fed more than 500 people.
Jim has also worked to honor veterans by, among other things, providing wreaths for graves and bringing in the Vietnam Veteran's Memorial wall.
As I mentioned before these two men have been mentors to me, whether they know it or not, and have inspired me to do things throughout this area to help others.
They are only two of the many great people throughout eastern Oklahoma that make this such a wonderful place to live.
Sunday I had the privilege of seeing this giving spirit in my hometown as more than 200 Panamanians gathered to hold a spaghetti dinner and auction to raise more than $5000 for a little girl who was recently diagnosed with cancer. The outpouring of support for this family exemplifies the caring spirit of this part of the nation.
It really makes it easier to continue to try to help others when you see that others would help you, and it makes me very proud of where I'm from.

Sent from my iPhone

You're Gonna Hear Me Roar

Pervasive Parenting
By Kodey Toney

You're Gonna Hear Me Roar

Last Thursday was Developmental Disabilities Awareness Day at the Capitol in Oklahoma City. Since I was off work I decided to get up early and make the trek to represent the eastern side of the state. Along with networking I got to see some great advocacy from self advocates, parents, professionals, and even the legislators.
The event kicked off with several senators and representatives addressing the crowd of several hundred that filled the rotunda on the first floor. Among those speakers was Rep. Jason Nelson. I met him while in the Partners in Policymaking program, and while he only spoke briefly he has been a big ally for those with disabilities. 
Another great voice at the Capitol is eastern Oklahoma native Wanda Felty. Originally from Spiro, she moved to the middle of the state several years ago and has become a champion of all people and families coping with disabilities. One of the best things is that Felty hasn't forgotten those of us in this rural area of the state. 
One of her main topics was and has been the Developmental Disabilities Service Division (DDSD) Waiting List. For those who don't know, this list, in a nutshell, includes almost 7,000 people who have applied for services through the DDSD, but are still waiting due to the lack of funding at the state level. The sad part is that some on this list have been waiting since 2005. 
The legislators approved $2 million in the past two years to help with funding. While that is a substantial amount, and is helping, it only worked to remove about 300 families from the list. 
Also a big topic, especially for the self advocates there, was aiding in employment for those with disabilities. While unemployment is a major topic everywhere, the statistics for those with disabilities show that approximately 80 percent are without jobs. 
Members of the self-advocacy group Oklahoma People First where among the most vocal. Playing on the theme of the day, the group "roared" as they let the legislators know they needed their cause to be heard. They finished the program with a flash mob dance to Katy Perry's hit song "Roar". 
After hearing all the speakers I went to the fourth floor to speak with representatives from this area and must say that both Rep. Ed Cannaday and Rep. James Lockhart were very receptive. Cannaday is a member of the board of directors for the Pervasive Parenting Center and has been good about listening to issues in our area. 
I want to say a special thank you to Rep. Lockhart who took the time to listen to me and even gave me a small tour of the west side of the Capitol building. He introduced me around and even talked to me about other issues he was interested in during the current session. 
The networking alone was worth the trip. 
In all I was honored to be a part of the events that day. We have to make our voices heard if we want anything to change in this world.