My Selfish Heart

Pervasive Parenting

By Kodey Toney

My Selfish Heart

We parents are selfish. It's true if you really think about it. Some of you are probably saying, “Hey I give to my kids, and I do everything I can for my kids. I want to give them everything.” For the most part that's true. The majority of us work hard for our kids to give them a better life than we had. However, when it comes to public opinion we are really very selfish. Most of us don't realize this until we have a child with a disability or a behavior issue. 

You see, what happens is that we think, “Oh no, I'm going to look like a bad parent,” or, “Oh no, my child is a brat, and that's going to reflect on me.” What we really should be thinking is, “What's best for my child, and why are they acting like this?”

There has to be a reason for their actions. As the old saying goes behavior is communication. If a child is acting out, most of the time there's a reason. They’re not just doing it because they want to be a brat. This is especially true for those on the autism spectrum disorder. 

We work really hard to give our children therapy, and all the tools that they need to do better in school or life. When it comes to taking them out in the public we are worried about what other parents are going to think about us. At least this is true for me and many parents I talk with. 

I've actually heard some parents say, “If you know they're going to act that way then why do you take them out in public?” Well there are two good reasons for this. Number one: I'm not at hermit. I don't live within the walls of my house, although for the majority I do because of this very reason at times. I tend to stay home because I just don't want to deal with the things that could happen. The second part, and most important part, is that I don’t want my child to live like that either. This is how we teach our children social skills. They will never learn how to act in public if they are not in public.

I'm in over-thinker. When I sit down to eat in a restaurant I start thinking, “Okay if this happens then this is going to happen.” I'm playing a chess game in my mind. I'm trying to think two or three moves ahead. If Konner has this then he's going to act like this, or if Konner does this then this could happen, or if that guy drops his fork and it makes a loud clanking noise then Konner is going to get upset. 

What I should be doing, and often do, is explaining to Konner that this place is probably going to be really loud, and there are going to be people all over the place and it's probably going be very busy.

The strange part about this is that we are really just giving into what society thinks is normal, and what they expect from us and our children. What we should be thinking is, “Who cares.” I'm going to try to discipline my child, and I'm going to try to make them act as “normal” as possible in public. I'm going to try to give them everything they need in order to be able to go out into the public more often, but that's going to be rocky at first. There are going to be times when my child has a meltdown and there are times when my child is not going to conform to what most people think is acceptable. However, the more we do it the better things will become.

We can't live a sheltered life just because our children are on the spectrum. We can't live in a bubble. If we do then what we are expecting is for a child to live in a bubble for the rest of their life as well. What we really want is for them to be able to go out in the public and be able to do what other people do. If they can't then, again, who cares? Those people need to learn acceptance.

Taking Care Of Business

Pervasive Parenting 

By Kodey Toney

Taking Care of Business 

I had the privilege to speak to a group of parents recently about ways to cope with a child with autism. One of the questions I was asked made me really think and I would like to share my opinion on the subject. I hope it gives a little perspective into what I think about maturity in children on the spectrum. As I have always said I’m not expert, just a father giving his view and trying to help others. 

The mother was telling me that her child was really into video games. He was so engrossed by the games that he played that he will role play in real life. He will dress like the characters and imitate them around the house and outside. He is in his teens, and the mom is worried that he shouldn’t be acting like a little kid anymore. 

So there are many different things to think about in this situation. We understand that children on the spectrum, because of the lack of understanding social cues, and lack of social skills, can be more immature than other children their age. They are focused on their interests and usually not much else. This is where much of the social awkwardness stems from in children on the spectrum. 

So what is the answer? Should we tell our children not to act this way? Should we tell them to quit expressing their likes and act their age? Should we tell them to conform to the way society wants them to act? 

Temple Grandin says that we need to limit the amount of time a child has on video games and electronics. I agree with this to a certain extent. What she suggests is using those interests and turning them into other outlets like Lego building, drawing, or other toys. 

On the same note, if you have a child that enjoys certain things like trains, which Konner does, then find them a group of train enthusiast and let them hang out with them. There are groups all over the world; you just need to find one in your area. If you don’t have on in your area then you can start one. The age doesn’t matter too much. These kids know just as much, if not more, than most, so they can hang with these experts. 

I would ask the parent if what they are doing is hindering their social life. Are they doing this in a public setting that is causing them to be bullied or made fun of by their peers? Are their peers acceptant of this behavior? If it is an issue then I would try using social stories and talk to the child about how they should act in public. 

When it comes to the privacy of their own home, who cares? I say let the child do what makes them happy. 

I watched a video once about a girl who was in her teens and she still watched Sesame Street. She didn’t care what people thought because it made her happy. I think this is the perfect attitude, and one that we as parents should adopt as well. As long as our children are happy, and it’s not affecting their personal life then what should we care what others think? If we are doing our best to help them have a good life then it’s nobody’s business.

Burning Down The House

Pervasive Parenting

By Kodey Toney

Burning Down The House

Over the years I've talked to parents who are debating on whether or not to homeschool their child. They ask whether I think they should keep them in school or not. I want to give my opinion on the situation, and keep in mind it's only an opinion. 

I recently had a couple parents ask me about the homeschooling situation, and what would be best, but I also had a parent ask me about her young child and whether to keep them in daycare or to put him in a head start program. These are big decisions and they'll make a huge difference in your child’s life, so I think you shouldn't take them very lightly. 

The number one reason most people want to take their child out of regular school and keep them at home is that they're having issues with the school. While this is a valid problem, I would like to explain that it doesn't have to be that way, or at least it shouldn't be that way. You can have an advocate, such as myself, or an outside advocate such as the Oklahoma Parents Center help with the situation. If necessary, the Oklahoma Disability Law Center is also available for legal advice and advocacy. These are all free services that we offer, and if you have any questions on this feel free to contact me at my ktoney@pervasiveparentingcenter.org.

The schools have certain criteria that they have to meet and they have stick within the laws. This is where an advocate can help, especially if you feel like you're being intimidated. Even if you're not, bringing in an outside source can sometimes help with the negotiation process. You can also help bring in fresh new ideas that both sides may not have thought of to help your child. 

You have to remember when dealing with autism, or any other developmental disability, the social aspect is one of the most important concerns. This is one of the things that define autism, and one of the things we're trying to help the child with. If we take them out of that social environment then we're really doing them a disservice. 

If may seem like you’re helping by pulling them out of that environment in some situations, and I'm it is possible that under certain circumstances that may be true. Look at the overall issue. Is it something that could and should be fixed within the system? if the answer is yes then you need to reevaluate your choice. If the system that is a problem then that needs to be taken care of because you want your child around as many people as many peers as possible. 

Don't forget that eventually in life they're going to have to go out into the real world, and how they interact with others is going to make a big difference in their overall quality of life. If they can't interact because they haven't had the social skills then keeping them at home, away from others, is not the way to go.

This is why I work so hard for inclusion in the classroom. We have to allow children with low social skills to learn from their environment and peers.

For the child going into head start, I listened to the situation. The daycare that they are currently in has a classroom aspect to it with interaction among the child’s peers. If this is an option it’s not necessarily a bad one. The child will get more one-on-one with an adult, and still have peers to learn from as well. 

The last part of the equation is you as a parent. You love your child unconditionally, and you love your child so much that you're willing to stay home and teach your child. You are willing to be with them 24/7. You feel like this is the safest thing, and that's a parental instinct. I understand this, but you have to understand that you need time for yourself. If you are with the child all the time with no breaks it's going to cause you to burn out.

I heard Ashley Lincoln from the Cherokee Nation speak last Thursday in our parent support group, and she reminded me of something that is very important to parents of children with disabilities. When you get on an airplane and they go through the safety precautions they talk about the oxygen masks dropping. The first thing they tell you is to put the mask on yourself first and then your child second. You have to save yourself in order to save your child. Think of that when you're talking about being with the child all the time. You have to have some time to yourself. It’s easy to get burned out with your child in school.

They Say It's Your Birthday

Pervasive Parenting

By Kodey Toney

They Say It’s Your Birthday

April 2 is coming up soon, and with that comes National Autism Awareness Day. This is the day we wear puzzle pieces, light up our houses and towns with blue lights, and make sure that the world knows about autism. However, April 5 is more important to me. This is my true autism awareness day. Not because I don’t care about telling everyone about autism, but because my inspiration, my motivation, and a huge chunk of my world will turn 10 years old that day.

Konner’s birthday is a reason to celebrate many things, but for me it’s a reason to celebrate the great things that come along with autism. It’s a day for me to celebrate how far we’ve come together.

I’ve said in the past that I feel just about everyone is aware of autism at this point. Maybe I’m naïve, but with 1 in 68 diagnosed, at this point just about everyone knows someone with autism. The Center for Disease Control likes to release those numbers around this time of year to coincide with the autism awareness day, so be prepared for the numbers to change.

I could be wrong though. I was unaware of what autism really was until seven years ago when Konner was diagnosed. I thought it was a funny word, and had some really bad opinions of people who had been diagnosed. I saw it as a horrifying diagnosis for my child, or any child. I saw the parents struggling with their children and the children struggling with the disorder as a nuisance.

I was one of the outsiders who couldn’t see past the nametag, the diagnosis, to see the true beauty of what is going on inside these beautiful minds. I couldn’t see the potential in their lives and what they could do for the world. I couldn’t see that they could live productive lives helping out in the community and contributing to society.

I couldn’t see that they can also open up the minds of people like me and allow us to understand that everyone has something to offer if we just give them the chance, find what they like and are good at, and give them the tools to work with. I couldn’t see that EVERYONE is someone. I couldn’t see that people on the spectrum belong in the classroom, in the working world, and in the community despite the fact that they are “different”.

I was blinded by what society has allowed to happen to people with disabilities in the past. I was blinded by the fact that the world looks differently at people with disabilities and that I thought I should too.

On top of this I was afraid. I was afraid that autism would cause people to look at my son differently and treat him differently. I was afraid that people wouldn’t give him a chance and would only see that same label that I saw. I was afraid that he would not be included in society like his peers because of his diagnosis. I was afraid that people would see me as a bad parent because I couldn’t always control my child when he can’t control his own feelings and bodily functions.

In seven years I’ve learned to cope with these things. Though much of the world still views my son differently, and he’s still shunned in some settings, I know that we (me, Jen, Konner, and Kruz) are all doing what we can to help him, to help others with disabilities, and most importantly we are trying to help the way others see people with disabilities. We have a long way to go, but we will continue to move forward.

You see, if it weren’t for Konner I would still be that same ignorant person that I was seven years ago. Happy birthday buddy, and thank you.

Hit Me With Your Best Shot

Pervasive Parenting 

By Kodey Toney

Hit Me With Your Best Shot

There has been a ton of controversy lately in the news over vaccinations. Celebrities, comedians, and politicians are all weighing in over immunizations. It's easy to see why with the mumps outbreak in recent months it is easy to see why. I feel that it is time for me to share my thoughts on immunizations. 

This actually comes from something that I wrote a couple years ago, but my feelings have not changed. 

While I’m not entirely sure of my stance on the subject, I will tell you my thoughts on the situation, and what my wife and I have done as parents.

Let me start by saying that I’m not opposed to vaccinating children. In fact, I am all for it. This may seem unusual for an advocate for people with autism. I have friends that work to advocate for people with disabilities, and opinions vary greatly depending on who you talk to. 

However, it is a very effective way to help children fight off diseases that could potentially kill them. I feel that we should continue to vaccinate our children. 

I just wonder what we are injecting into their tiny bodies. 

Think about this; within an hour of your child being born in a hospital someone will give them a shot. Their bodies are anywhere between 4 pounds to 11 pounds on average. Is there a reason why we need to? Well, the short answer is maybe. This is a vitamin K shot that helps with blood clotting. This will help keep children from hemorrhaging. This was a major concern years ago, prior to the shots. However, the need for a shot is questioned. There are oral vitamin K drops that can be given to prevent the vaccine from being given. Another is the Hepatitis B shot which we will get to later. 

Let’s start by asking a question. Do we really know what is in the shots we are giving our children? 

The main shot that has caused all the controversy in the past few years is the Measles, Mumps, and Rubella vaccine. According to the FDA, MMR-II never contained thimerosal, a potentially dangerous chemical used in some vaccines. Other shots still include the thimerosal though. The flu shots include this. However, the mist that is given through the nose does not. The FDA also stated trace amounts of mercury were detected in an earlier MMR formulation. We all know that mercury is poisonous to our bodies. It is said that there is no mercury in the shots any longer. Guess we’ll just have to take "their" word for it. 

And what about aluminum, which is used as a preservative? 

While there is a decrease in cases of these childhood diseases following the vaccinations, they do not stop all children from getting them. Just like the flu shot, you can actually contract the diseases from a live strand. 

I’m not saying that vaccines cause autism; I’m also not saying they don’t. Truth is we just don’t know. The only thing we do know is that studies provided by pharmaceutical companies say that there is no link. I’ve yet to find a study from an independent company with no bias toward the money generated by these drug corporations. 

My stance is this: until we know more about what we are injecting in our children it is better to be safe than sorry. 

This is why, with our second child, we have spread out his shots. We don’t do them all at once. This caused a little trouble at first. Our pediatrician said that he would not spread the shots out, so we had to seek a second way of getting them. The Health Department was kind enough to give them in whatever order we wanted them (within their guidelines of course).  This does not mean that we are always behind on his shots. In fact we are on schedule with what is required by the State Health Department. 

The truth is we just don’t know, and when you have one child that has autism you do what you can to help the other one. The main thing that we wanted to do was to guard his little body from too many chemicals. 

With the MMR, should we give them all at once? Experts have said that we do not need to give them all at once. The only reason behind this is convenience. So, it is more convenient for the doctors and drug companies to give doses of who-knows-what than to keep our children safe? After all, isn’t that the most important thing, and their jobs? Instead they just load our children with a solution that, I suspect, they probably don’t really know the full ingredients of themselves. 

I’m not a doctor. I don’t pretend to be one. However, I am very concerned about what goes into my childrens' bodies. I’ve said this before; I don’t even like to take an aspirin if I don’t have too. I really don’t want to pump my child full of unnecessary chemicals. 

All of this of course is just my opinion and in no way expert advice. Get your child immunized, but be smart with how you do it.

Take It To The Limit

Pervasive Parenting

By Kodey Toney

Take It To The Limit

I attended the State of Oklahoma Governor’s Conference on Developmental Disabilities last week, and as always found inspiration. I want to share some of, what I feel, were the highlights of the two-day event.

The key-note speaker for the first day was Tina Campanella, CEO of Quality Trust, a company that works with individuals with disabilities in the Washington D.C. area. She talked about how people with disabilities have a difficult time making decisions, especial as they get older. This is mostly because we don’t allow them to throughout their lives, so when they set out on their own they have a hard time understanding what they are supposed to do.

“Do we let them make their own decisions,” asked Campanella. “We often don’t ask the students what they want. Life experiences help create decision makers.”

She also explained that too often professionals that work with people with disabilities, don’t look past an IQ score. We as a society can’t see past that number. We feel that they can’t learn more than the IQ score says they can. The same could be said for someone with a physical disability. We can’t see past the wheel chair, crutch, or off-set gait. This is the wrong attitude. Everyone has unlimited potential. The only things we can’t do in our lives are the things we stop ourselves from doing. At times we are hurting our children by telling them that there are things that they can’t do because of their diagnosis. We should be encouraging.

“Why do we limit our vision for children with disabilities,” asked Campanella.

She finished by saying, “Ultimately advocacy is about people, the kids. It’s not about me. It’s not about you. It’s not about the parents. It’s not about the schools. It’s about PEOPLE.” 

I went to a breakout session where the presenters were talking about what we can do as advocates to help those with disabilities help themselves, and have a good life. We as parents often concentrate on finding services to help our children. This is fine. They need the therapies, doctors, and sometimes medicines. However, we focus too much on this aspect and forget about the unpaid supports like family, friends, and outside assistance that is not based through state and federal funding.

Professionals are trained to study and solve problems. They are a big help, but the family members are the experts on the person with the disability. They spend the most time with them. There has to be a balance between the two.

The person teaching the skills has to be effective in their teaching style. “Teaching inconsequential skills well is really no better than teaching essential skills poorly,” said Rene Daman from the Oklahoma Autism Network. If you’re teaching something, but they are not understanding then what is the point of teaching. In the same frame of mind, if we’re teaching them something they don’t need then we’re also wasting our time.

We stress ourselves out too often trying to solve all the problems at once. I have a saying when I’m stressed, “One crisis at a time.” We have to focus on what we need today. Start with the number-one stressor, and then move on as you eliminate it.

These are only a few points from the two days, but I felt it was pretty good advice.