Wednesday, August 26, 2015

Big City

Pervasive Parenting

By Kodey Toney

Big City

I took trip to the “big city” on Friday for my first meeting with the Developmental Disabilities Council. I saw some old friends and made some new ones that I think are going to beneficial in the near future. However, when I learned about what the council has done in the past I wanted to share this information, because I knew about some of these programs, but didn’t realize that the DD Council actually helped start them. Many are very beneficial to the people of our area.

The council is a Title I program set up through the governor’s office to help individuals with developmental disabilities; obviously right? However, what falls under that includes the protection and advocacy systems in the state to guard the legal and human rights of individuals with disabilities. They also help set up set up university centers for excellence in developmental disabilities education, research, and services to help provide continuing education and community services, and to conduct research and spread the information. They also collect data necessary to help improve lives of individuals with disabilities, and provide technical assistance.

One of the programs started by the council is Project Peak. This is a training and support network to help educate children on the autism spectrum. They work with the local and state agencies as well as the schools to help provide training for children in the school environment.

Oklahoma Assistive Technology Center was a program started to help families and school find the technology they need to help make a better life for those with disabilities. They would provide devices on loan and help with training to learn to use those devices to make sure it was necessary for that individual. This has shifted in the recent past, but Oklahoma ABLE Tech has taken on a similar role and is available to help with technology needs.

Dreamnight at the Zoo is sponsored by the ODDC every June. The first Friday of the month the zoo provides access to families of children with disabilities. The council funded disability awareness training for the zoo employees which is now part of new employee orientation. The zoo also works with zoos from across the country to help with access for those with disabilities.

Youth Leadership Forum is a week-long program on a college campus that helps high school juniors and senior prepare for post-secondary education, independent living, and career development. They are also taught self-advocacy and leadership skills.

Partners in Policymaking is the great program that I graduated from in 2013. This is a nine-week program designed to help self-advocates, family members, educators, and professionals better advocate for themselves and others. There are so many aspects to this one that I couldn’t possibly list them all, but they will make you feel like you can take over the world when you are finished.

Oklahoma Sibshops were also developed under the ODDC. While the program itself was developed in Washington state, the programs were nurtured by the council to spread throughout the state. This includes the one the Pervasive Parenting Center began last year. We will start back up in September to help provide families with assistance for siblings of children with disabilities.

These are only a few of the things that have the council planted the seed for. Also under their supervision was the Governor’s Conference on Developmental Disabilities, Sooner Success, and Keeping Families together.

I am truly honored to be a part of this great council, and to use it as another avenue to help others.

Serve Somebody

Pervasive Parenting

By Kodey Toney

Serve Somebody

In the news lately there has been a great deal of talk about law enforcement and children on the spectrum. I know this is not something new, but in light of a situation in Covington, Kentucky, where an 8-year-old boy and 9-year-old girl were having discipline issues and were handcuffed around the biceps by a resource officer to keep them from hurting anyone or themselves, I feel compelled to speak about this.

Let me start by saying that I have friends in law enforcement and I highly respect the work they do with the communities in the area. They put their lives on the line each day to help protect and serve and for that I am truly grateful.

I also know that when they are going through whatever training they have, whether that be Council on Law Enforcement Education and Training (C.L.E.E.T.) certification, Highway Patrol School, or some other police academy training, very little is given in the way of how to handle people with disabilities. This includes developmental disabilities and mental disabilities. They have more important things to deal with such as keeping themselves and other alive. I understand that.

However, as a parent of a child with autism I am concerned with how they will react when my child is having a bad moment, becomes a discipline issue, and begins having an uncontrollable meltdown in their presence, and they have to find a way to handle the situation. Their first reaction is to control the person and in turn control the situation by whatever means are necessary. This can tend to make the situation worse in the case of someone on the spectrum.

What I would like to propose is that all law enforcement, and emergency personnel for that matter, be trained in ways to cope with citizens with disabilities. This works on several levels. Let me start by saying that with a 72 percent increase in diagnosis of autism since 2007, and 1 in 68 being diagnosed, the number of people in society with the disorder is staggering. That is only the numbers of autism and does not include other disorders. This means that the chance of engaging a person with a disability is rising each day. So, in order to avoid a bad situation, and potential law suit, we should arm our officers with as much knowledge as possible to help protect those on the spectrum, those around them, and the officers themselves.

This isn’t just on the police departments though. The parents have the responsibility to make sure that the children are comfortable with the police. They must try to introduce them to an officer every chance they get. If you see a police officer, have your child talk to them. Make sure they are as comfortable as possible around them. Too often we paint this dark shadow on our police and make our children afraid of them. That backfires when they are lost, hurt, or in need of help and are scared to approach the police to ask for assistance.

This will be amplified when your child has been wandering and officers are out trying to track them down, or when they are having a meltdown. When the officer approaches them they will run or try to avoid the situation.

We also need to contact the local 911 and emergency dispatchers so they can add information into the systems (find a non-emergency number; do not dial 911 to do this). They can note that someone in the house may have a disability and need a cautious approach. This will work wonders in case of fires, medical emergencies, etc.

Resource officers in schools should be a number one priority since they will be the most likely to encounter a child on the spectrum.

The Pervasive Parenting Center is offering FREE training to any department willing to dedicate their time to a brief session. We will work with ways to approach someone with a disability and potentially avoid a law suit. If anyone is interested please contact me at ktoney@pervasiveparentingcenter.org.

As I said before, I think law enforcement agencies in the area do a great job. I just want them to be better prepared in case they every have the misfortune to have to deal with one of these situations. I want to help the families as well.

It's Now Or Never

Pervasive Parenting
By Kodey Toney
 
It's Now Or Never
 
This week I want to talk about something a little different. While it's not necessarily parenting advice, I feel it's important for those of us with family members on the spectrum.
A recent article I read talked about the price of caring for Americans with autism. The data presented by the Center for Disease Control stated that  the cost this year alone will be a conservative $268 billion. 
In the next 10 years that number is projected to reach $461 billion, according to findings published online in the Journal of Autism and Developmental Disorders. This is due in part by the rising number people diagnosed with autism.
I understand that the budgets are very tight, and are becoming tighter all the time. However, I want to encourage legislators to put whatever they can into something I feel could help in the long run. Before I say this I would like to preface it with a warning. I'm not a politician. I don't pretend to know the way that the world of civics work beyond a basic high school class. 
That being said, I feel that as much as possible should be put into helping with early intervention and assisting with community inclusion. That is, we should help families get the services they need in therapies, special education, transition skills, and insurance assistance. If we can help children when they are younger to receive the assistance they need to live a better life, to become productive in society, and eventually give back by having a job, paying taxes and helping others, then we can save funding in the long run to assistive living costs, caregiver costs, and long term Medicaid and other medical funding. 
We have families, especially in the rural areas, that need assistance with finding resources and obtaining the tools they will need to have an impact on society; to be productive.
Due to high divorce rates in families coping with disabilities, we have many single mothers, and fathers, raising children with little help financially. Many have to sacrifice their personal lives and even their careers in order to help care for their children. 
We also have families like mine where both parents work full time and make just enough money to be out of reach for any assistance with the many therapies necessary to help our children. 
We need better assistance for these families to help with divorce rates, insurance, respite care, and child care. 
This doesn't mean that I think other areas should suffer. We still need research and other assistance, I just feel if we concentrate on these areas it will help relieve the long-term funding. 
We can either pay now to help them become productive, or pay to assist them for the rest of their lives.

It's Getting Better All The Time

Pervasive Parenting
By Kodey Toney

It's Getting Better All The Time

Sunday morning I woke up early, after several episodes with the snooze button, and along with the family, made the three-hour drive to Oklahoma City to celebrate the 25th Anniversary of the Americans with Disabilities Act (ADA). I'm extremely glad that I did. Besides the fact that I got to see many friends I also got to see the true spirit behind the ADA. That is the hard working advocates that make the ADA worthwhile.
Among the more than 100 volunteers and walkers there were family members, lawyers, social workers, friends, and self-advocates. These are the people that work tirelessly to make sure that themselves and others are protected by this act.
You see, this is nothing more than words on paper if we don't do our share to make sure that others are following the laws and rules set forth on that day 25 years ago when President George H.W. Bush signed it into law.
This has been a tremendous help to those of us coping with disabilities. It has given us some ground to stand on when trying to get equality in schools, work, and home. We have come a long way, but we still have a long way to go.
We still have employers who do not believe in giving a chance to those with disabilities. We have store owners and operators who don't feel they need to do what is right to accommodate those with disabilities. And, we still have educators and administrators who feel they don't need to make accommodations and changes for inclusion.
While this walk was as much a celebration of a great act put into place a quarter century ago, it is just as much a celebration of those who fight every day to make sure others are keeping up their end of things. The light keepers if you will of a beacon that started well over those 25 years ago.
It's also a reminder that we have more work to do, but as long as we have great people like those who organized and participated in this near triple-digit heat then I am satisfied that everything will continue to get better.

Sunday, August 2, 2015

It's Getting Better All The Time

Pervasive Parenting
By Kodey Toney

It's Getting Better All The Time

Sunday morning I woke up early, after several episodes with the snooze button, and along with the family, made the three-hour drive to Oklahoma City to celebrate the 25th Anniversary of the Americans with Disabilities Act (ADA). I'm extremely glad that I did. Besides the fact that I got to see many friends I also got to see the true spirit behind the ADA. That is the hard working advocates that make the ADA worthwhile.
Among the more than 100 volunteers and walkers there were family members, lawyers, social workers, friends, and self-advocates. These are the people that work tirelessly to make sure that themselves and others are protected by this act.
You see, this is nothing more than words on paper if we don't do our share to make sure that others are following the laws and rules set forth on that day 25 years ago when President George H.W. Bush signed it into law.
This has been a tremendous help to those of us coping with disabilities. It has given us some ground to stand on when trying to get equality in schools, work, and home. We have come a long way, but we still have a long way to go.
We still have employers who do not believe in giving a chance to those with disabilities. We have store owners and operators who don't feel they need to do what is right to accommodate those with disabilities. And, we still have educators and administrators who feel they don't need to make accommodations and changes for inclusion.
While this walk was as much a celebration of a great act put into place a quarter century ago, it is just as much a celebration of those who fight every day to make sure others are keeping up their end of things. The light keepers if you will of a beacon that started well over those 25 years ago.
It's also a reminder that we have more work to do, but as long as we have great people like those who organized and participated in this near triple-digit heat then I am satisfied that everything will continue to get better.

Celebrate Good Times



Pervasive Parenting 
By Kodey Toney

Celebrate Good Times

My classmates and I just started talking today about our 20-year class reunion coming up next spring. That made me think about what a great group of friends I had in school. I also started thinking about what a great group of people I work with now who are my friends, and what a great family I have. I wondered what it would be like if I didn't have those friends in high school. What would work be like if I didn't have those friends and coworkers, and what would life be like if I didn't see my family every day? 
This also sparked me to think what life would be like for Konner if it weren't for his friends in school. He has such a great support system with his fellow classmates. 
What will his life be like later when hopefully he gets a job?
What would life be like for any of us if he were placed in a home and we could only visit him?
These may seem strange, but a little over five years prior to my graduating high school an act was signed that helped make sure that the same life that has made me happy is readily available for my child on the spectrum. 
There were many other things leading up to the Americans with Disabilities Act that was signed July 26, 1990. As we come upon the 25th anniversary on Sunday I would like to share a brief history.
The Americans with Disabilities Act (ADA) actually got its start in 1973 with section 504 of the Rehabilitation Act.  However, it opened the door to many other great laws and regulations to help our children with special needs. One of these of course is the Individuals with Disabilities Education Act (IDEA), which states that my son, and others with disabilities, are entitled to a free and appropriate public education (FAPE) in the least restrictive environment (LRE). 
This means that Konner can, and will, get a public education in a classroom with his peers. He will also have the opportunity to live in the world at his will, and have a job if he wants. 
Now, it's a little more complicated than that, but honestly not much. 
A walk to celebrate the 25th anniversary of ADA is planned for Sunday at the Capitol in Oklahoma City. This is a great way for families to show their appreciation for the freedoms and rights that the act has allowed for everyone coping with disabilities. 
For more information contact Ellyn Hefner at 405-640-9408, or me at ktoney@pervasiveparentingcenter.org.

You're A Firework

Pervasive Parenting
By Kodey Toney

You're A Firework

With the Fourth of July weekend upon us I want to take a little time to talk about sensory issues related to autism spectrum disorder and coping with these issues. 
As many of you already know autism generally comes along with other issues. This is why it is a spectrum disorder. The comorbitity (a fancy name for multiple diagnosis) usually is accompanied by things such as Attention Deficit Hyperactivity Disorder (ADHD) like Konner, Obsessive Compulsive Disorder (OCD), Sensory Processing Disorder (SPD), or a number of other things for your child to deal with. 
The SPD is something to really consider as you make plans for Independence Day weekend. While we want to celebrate our freedoms and enjoy the fireworks displays we also want to make sure that we are not torturing our loved ones. 
Don't forget that children in the spect tend to have heightened senses. They see, smell, feel, taste, and certainly hear things differently from most. This is why sitting in a noisy gymnasium or cafeteria are painful and very difficult for a person on the spectrum. 
Most years we visit the big fireworks display the local fire department puts on in the next town over. It's s great display that lasts about 15-20 minutes usually and has many large explosions. Those bombastic pyrotechnics are louder than most over-the-counter fireworks, and are followed by a small aftershock. These things are enough to hurt a child on the spectrum and cause them to be more than a little anxious. 
I tend to try to monitor Konner and make sure that he doesn't get too anxious. His heartbeat begins to race, and of course he covered his ears. 
In the past we have tried a couple things that tend to help. We have given him headphones or ear buds to keep in his ears. Sometimes they have music running through them, and sometimes the are just there to muffle the sound. These have worked pretty well, although I would make sure they are okay with having something touching their ears. 
We have also used ear plugs. We have tried many different types, and they all seem to work well for him.
We have even used our own hands to shield the noise. 
I know these are just a few ideas, but I want everyone to be aware of their senses and not over do it for the holiday.