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. 

Saturday, June 7, 2014

What's Going On

Pervasive Parenting
By Kodey Toney

What's Going On

When talking with parents, especially those who are facing a new diagnosis, one of the questions I usually get is, "What resources are available. In fact, in a recent survey held online by the Pervasive Parenting Center, 80 percent of the people asked said that a lack of resources was the biggest obstacle they faced in this area. Fifty percent said the lack of information about existing resources was an issue. 
Unfortunately in our neck of the woods the resources are limited, but what I find interesting is that most families, and professionals for that matter, don't know what is out there. There's good news though. There are a few things coming up that can help with that issue. 
The Communities of Care is sponsoring the "Be the End" forum Tuesday, June 10, from 5-7 p.m. This event will be held at the Donald W. Reynolds Civic Center in Poteau, and will feature booths from many local and state resources in one place to help families understand what is available.
Groups and organizations including the Choctaw Nation, Oklahoma Family Network, local law enforcement and emergency personnel, KiBois, SmartStart, Pervasive Parenting Center, Grace Cottage, D&D Counseling, Sequel Care, and many more will be there to explain one-on-one what they can offer you and your family. 
There are so many great programs out there to help families, and many will be in the same place at the same time. Don't miss this event. 
I also want to let you know that the Pervasive Parenting Center has launched its website www.pervasiveparentingcenter.org. There is a button titled "links" that will take you to a page full of websites to different resources to help families coping with disabilities. 
There are a couple other events coming up that I will discuss in the near future, and I will give some great information I got from the Governor 's Conference on Developmental Disabilities in next week's column. 

Sunday, June 1, 2014

Father Of Mine

Pervasive Parenting
By Kodey Toney

Father of Mine

I had lunch with a friend last week and the nature of the meeting was both humbling and eye-opening. He was seeking advice for coping with his recently diagnosed grandson he's raising as his own. While  I was happy to give advice I wasn't sure how I could help. In return though he helped me to understand a little bit about being a father.
This man has already raised his own children and is now raising his two grandchildren as his own. This is a common theme these days that I can relate to in a way. My own grandparents have raised their grandchildren, and are now raising their great-granddaughters. 
They call me for advice often as well. There's nothing more humbling than getting a phone call from the family matriarch, someone who has raised six children, and helped with numerous grandchildren, and she needs your advice. 
It's also very scary. Why me? What makes me the go-to guy? I usually look to my wife for advice, so why don't they ask her? 
As I've always said, I'm no expert. I'm just a father who looks for information to help my kids. 
So the man's grandson was recently diagnosed with autism and he was asking me for a father's perspective. I gave the best I knew, but the conversation moved into something that I have always had trouble with; discipline. I didn't really have the answers to his questions at that point in the conversation. So I had to ask myself what I do in those situations.
I had to admit to him that I didn't always do the best thing. In fact I often do things to make the situation worse. I have a tendency to yell which makes Konner's frustration worse and then it goes down hill from there. In the past, and embarrassingly even now at times, I have tried to spank him. This was working on impulse from things I learned from my father. I'm not saying that was wrong, but it doesn't work for Konner.
So I had to dig deeper.
This is when he talked about things he could have done better with his own children. He was trying to do things differently with his grandchildren, and was using his past experiences to make that better the second time around.
That's when I asked him, "Did you do your best? Did you do everything the way you thought you should at the time?" 
I think this is the only answer in parenting. They don't come with a manual. The only time we truly fail as parents is when we don't do our best. I know this seems cliche, but we have to use what we know to help guide and protect our children. If we have a set-back then we will need to regroup, try again, and learn from our mistakes.

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.

Runningforautism.com 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.

Director

Pervasive Parenting Center

(918) 658-5076

pervasiveparenting@hotmail.com