It's Been Rough And Rocky Traveling

Pervasive Parenting

By Kodey Toney

It's Been Rough And Rocky Traveling

One of the first things I say as I'm addressing groups in eastern Oklahoma is that the resources are limited in our area, an what is available most people just don't know about. This is one if the main reasons I decided to start the Pervasive Parenting Center. I want to help connect people with the resources available and bring those resources to the area. Saturday April 26 will be one of those opportunities. The Oklahoma Family Network will hold a Joining Forces Conference to help families learn how to strengthen their partnership with the professionals in their lives for the benefit of your children.

This conference is beneficial to everyone including parents of children with special needs, special health needs, foster parents, new parents, teachers, and professionals. The best part is that it is FREE! This includes lunch. 

We held one of these last fall in Sallisaw and the information was great. It gives everyone involved a chance to understand how important networking and community relations can be for your child and others. 

We're encouraging anyone in the area to attend. 

They say it takes a village to raise a child, and that is especially true when that child has special needs.

There will be speakers throughout the day to tell about their experiences in providing the best care they could for their children. Some if the roads were rocky, but in the end they had a better outlook thanks to the help of the community around them.

This will be held at the Dale Cox Community Center in Poteau, Ok. 

The deadline to register is April 22. To register online go to: 

https://easternok2014jfinstitute.eventbrite.com 

OFN can provide stipends for child care if needed.

For more info, contact Doris Erhart at: doriserhart@oklahomafamilynetwork.org or call: 405-271-5072; toll free 877-871-5072.

Please take advantage of a great opportunity to advocate for your child.

Hanging Tough

Pervasive Parenting

By Kodey Toney

Hanging Tough

I want Konner to fail. Yes, that's right, I want my nine-year old son with autism to fail. Of course I'm not trying to be a jerk. I want Kruz, my five-year old, to fail too. I'm all about equality in parenting. 

Ok, let me explain. I feel like he has to fail at times in life in order to succeed. 

Booker T. Washington said, "Success is to be measured not so much by the position that one has reached in life as by the obstacles which he has overcome."

So what brought on all of this positive thinking? I was at the Oklahoma Association for Higher Education and Disability (OK-AHEAD) conference when a presenter told a story I felt was pretty interesting. I'm going to paraphrase a little, but they were talking about a man who has a disability and he had just been given a job. The problem was that despite being told several times, he wasn't doing the things he was asked to do. He was called in several times, and finally the supervisor called the parents to explain the situation. When the mom was asked what should be done she asked, "What would you do with someone else?" 

He replied, "Fire them."

She said, "Then fire him."

He did, and the employee learned a huge life lesson. He learned that he had to abide by the same rules as anyone else.

You see, while most times people with disabilities tend to take more pride in their work, we often use kid-gloves with them. We want to treat them different and tip-toe around them because we think they deserve special treatment. While we may need to make modifications to help them we don't have to change the job. It's still a job, and they need to understand that. 

The same can be said in the classroom. While we should modify the work or the room to help them learn, we don't need to let them slide on the work. 

In our IEP meeting last week I explained to the principal Konner will have next year that he tends to manipulate sometimes. He knows that if someone doesn't pay attention he will try to slide by and get out of doing things. His aide has been really good at knowing when he's trying to do this and keep him on track. 

I think all of these rules apply to any child, but for someone with a disability we think we need to be gentle with them. Guess what? It's them same harsh work out there for them as it is for your child without a disability.

Sometimes you have to learn by failing. That tough-love is important for anyone. 

Green, Green Grass of Home

Pervasive Parenting

By Kodey Toney

Green, Green Grass of Home

Jennifer and I spent Saturday in Oklahoma City at a conference for the Down Syndrome Association of Central Oklahoma. First I would like to say that it was a great conference. We learned so much, and made some more connections. I also want to point out that Patrick Schwarz was the keynote speaker, and of you get a chance to hear him don't pass it up. It is well worth it. 

When I told people I was going to the Down syndrome conference I was asked, "Why?" My first response was, "Why not?" However, after the initial sarcasm I explained that I was going to learn about advocating for people with disabilities. That is my main focus with the Pervasive Parenting Center. I know that autism is what I know best. This is mostly because it's all I've known for about six years now, but it's not all I need to know. 

A really great mentor and friend named Erin Taylor from the Oklahoma Developmental Disability Center gave me some great advice once. I had asked what I need to be doing to help people out and she said something to the affect that I should branch out and learn about others with special needs. I should listen to problems from other families with other disabilities. 

As I started to do this I began to see that families coping with Down Syndrome or Cerebral Palsy are dealing with many if the same obstacles we are with Konner. They need speech therapy, IEP help, and system navigation, etc. the same as anyone with a disability. 

If you look past your own little world you will see people who can help you because they have been through the system. You could also find that you might be able to show someone else an avenue they hadn't known or thought of yet. 

Make sure that you broaden your horizons. The grass isn't always greener, but it does have a similar tint to it. 

Double Vision

Pervasive Parenting

By Kodey Toney

Double Vision

We know that children on the autism spectrum are tethered to routine more than other children. This is why last week’s spring break paired with remodeling our house was double-trouble for Konner.

Let me start by saying that anytime we have a break it throws Konner’s schedule off so much that he is confused, emotional, and tends to have frequent meltdowns. However, this one was different; some good and some bad.

We had planned on a vacation several states away which I was kind of dreading because long trips in the car are crazy with him. However, do to some other circumstances we decided to stay home and remodel our house.

I know, crazy change in plans.

With this we started ripping out carpet, moving furniture, removing trim, and completely rearranging the house. This alone caused Konner to stand in the middle of the house for long periods at time and just look around. He was trying to figure out what was going on and get re-acclimated with the situation.

He would then run through the house screaming and jumping around, literally bouncing off the walls at times. This happens on breaks and I was ready for that. However, I knew we were not going to get anything done, and the construction and debris could cause him and Kruz to hurt themselves so we had our parents take turns watching them throughout the week (thank you Judy and Teresa).

This helped in ways because we didn’t have them in the house, but it also was different for Konner. He is comfortable staying with both sets of parents though, so that was a good thing. By Friday though he was ready to get back into routine and asked when he was going back to school.

When he would come back home in the evenings he would stand and look around and then get excited about the new things he saw. He really liked it, but you could tell he couldn’t get used to it being different.

The good news is that he didn’t have any meltdowns, at least that I knew about, during the week. He was emotional at times though and would get upset over small things like his iPad or his brother and come into the room with tear-filled eyes to explain why he was upset. This is something typical for him when he is over-stimulated.

I count this as a success though. It is proof to me that what we have been doing over the years with him has been working. Only a couple years ago this week would have been a complete nightmare. He would have probably been in full-meltdown mode at least once a day. It gives me hope that we are doing the right things. Not that we don’t have a long way to go.

Look What The Cat Dragged In

Pervasive Parenting

By Kodey Toney

Look What The Cat Dragged In

Since April is Autism Awareness Month, and that is just around the corner, I think this is a great time to make a couple big announcements. I have hinted to one of these for some time, and I know that some people already know some of this, but I feel it’s time to officially let the cat out of the bag and go public.

I would like to formally make it known that a pet project of mine, the Pervasive Parenting Center has launched. This is a resource center that I have dreamed about opening for a couple years, but I have now actually put into place. The center is a non-profit organization for our rural area to help spread awareness and provide families in this region with resources, support, and knowledge.

You see, when Konner was diagnosed in 2008 my wife and I knew very little about where to turn and what to do. We did our research through the years and have found that there are some resources available, but that they are limited and not very well know.

After completing the Partners in Policymaking program through the Oklahoma Developmental Disabilities Council I realized that I could make a difference by establishing some place in this areathat people could contact to find these resources. What resources we lack I would love to eventually try to set up. Those are some long term plans, and since I’m working out of my house at this point I will say that I am available to help anyone with a disability to find the things you need to help make a better life. If I don’t know the answer I will find it.

While I am the director of the center we have a board of directors made up of local professionals, business and community leaders, family members, parents, and self-advocates. This group will help to guide me as I try to assist the citizens of this region navigate the disability world.

This is not limited to autism. Although that has been my main area of focus, I’m looking to help anybody or family coping with a disability. This includes, but is not limited to down syndrome, cerebral palsy, spina bifida, etc.

Part of what I am doing is to help spread awareness throughout the region. I have been speaking to clubs, organizations, businesses, schools, civic groups, families, and anyone else who will listen about what autism is, about not using the r-word, about people first language, and generally how to help people with disabilities, and in turn how to treat people in general.

We’ve also been partnering with statewide agencies to help bring conferences and speakers to the area. On April 26 there will be a Leadership Conference in Poteau sponsored by the Oklahoma Family Network to help families partner with agencies to provide better services for their children. This is the second of its kind in eastern Oklahoma in six months, and I will have more information on this in the future. We also are working with the Sooner Success to help bring an On The Road Family Perspective Conference to the area in September. Again, I will give more details as this is just in the works right now.

These are just a few of the things we have going right now, but one of the first things the Pervasive Parenting Center is doing is to hold an Autism Awareness Walk in Pocola on Saturday, April 12. This will be held at 3 p.m. at the Pocola City Park. The walk will be held to raise awareness for the growing number of children diagnosed with autism each year. Everyone is welcome to attend. There will be free food available.

Please come out and support autism awareness in our neck of the woods. We would love to see a huge crowd.

If you have any questions about the walk, or where to find services please contact me at 918-658-5076 orpervasiveparenting@hotmail.com.

I Roam Around, and Round

Pervasive Parenting

By Kodey Toney

I Roam Around, and Round…

Children on the autism spectrum are often very curious by nature. They tend to follow those curiosities wherever they may roam. This is why most children with autism will wander off given a chance. Konner is one of those children, and a recent Facebook post by the National Autism Association has given me inspiration for this week’s column.

The post was a toolkit to help families with children who run.“Be REDy: to Prevent Wandering” is the name of kit the organization released in the fall of 2012. It has some great tips and information for parents to help keep your child from roaming, and also to help in case a disappearance happens.

One of the first things the kit does is to define wandering. Also known as elopement, it can include bolting and running as well. When Konner was little he was a runner. Anytime we went anywhere I made sure that I or my wife had a good grip on his arm or hand.

Although I hate to discuss it, we need to make sure it is known that one of the leading causes of death for children on the spectrum, especially when wandering, is drowning. This is because they are attracted to water; whether that’s a swimming pool, pond, or lake.

They also discuss wandering types. This includes goal wanderers who have a target or intention. Unfortunately they are most likely headed to something dangerous like water, train tracks, or something that has grabbed their attention.

The next mentioned is the bolting/fleeing child. This is someone who impulsively takes off running. Usually they are trying to get away from a bad situation. This can include overstimulation, nervousness, anxiety, etc.

They also discuss other/nighttime wanderers. These are childrenwho usually are disoriented, bored, confused, or just lost.

Once you have figured out which wanderer you have you can better work to find the child.

They have a checklist to help keep your child safe. I’m only going to share a few of these, but I will give the website at the end so you will have the whole toolkit.

The obvious one on the list is, “Have I secured my home?” This may seem like a no-brainer, but you have to remember that some children, like mine, are escape artists. You must think like them and try to find every possible route out of your home. If you miss it they will find it.

One thing that is very important that is included in the kit is a social story. You can read the story to your children to help them understand, this, and to help them know what could happen if they do.

Swimming lessons are an idea throughout the kit. This can help in case the child does stray to a water area. Konner has been in the pool since he was a baby. This doesn’t mean that he can’t drown, but at least he has a fighting chance. ​

Make sure that your neighbors are aware of your child’s habit. Let them know how to contact you, and how to approach your child if they should wander around their house.

You can make a tag or ID that you can attach to the child’s shoes or clothing. This will contain contact information, a diagnosis, and any other important data you feel someone should know.

You should address wandering at school. I was in Kruz’sclassroom recently for a party and there were alarms going off every time someone would walk in the door. A parent asked the teacher if that was annoying and she said that she has gotten used to it. I had to speak up and explain that my child was the reason they were put into place. When Konner was younger we had to ask that they put these on the exits. We also had the school reinforce the gates on the playground area to make sure they would latch.

The kit includes stop signs. I had never thought of this before, but you can cut these out and attach them to your doors. I’m not sure if this will work, but it certainly can’t hurt to give them a big sign that screams STOP! Especially since most children on the spectrum are visual.

They also mention temporary tattoos which can be used if you go out somewhere; i.e. a theme park, a park, a family gathering, the grocery store, etc. These are not only a practical way of being an identifier in these situations, the kids will think they are cool.

There are also forms to fill out with information about the child for emergency personnel, and wandering history. These are great ways to understand the child and where they may have strayed.

The site for the toolkit is:http://nationalautismassociation.org/docs/BigRedSafetyToolkit.pdf

 

Sometimes Words Have Two Meanings

Pervasive Parenting

By Kodey Toney

Sometimes Words Have Two Meanings

March 5th is the annual day of awareness to help “Spread the Word to End the Word”. The “r” word that is. Ok, I hate saying it, but for some of you who are wondering I’m talking about the word retarded, or retard. These are words just like slurs of yore that were used in a derogatory way to describe African Americans, Mexican Americans, Italian Americans, and other groups throughout history.

As I was doing some research for this column I decided to look back at one that I did two years ago so that I wouldn’t repeat information (which I will do). As I did I realized that I have learned so much since then. The first thing I noticed is my lack of people first language. If you’re not sure what this is Kathie Snow has some great information at http://www.disabilityisnatural.com/explore/people-first-language.

I also realized that one thing I put in this column was completely wrong, and I would like to address it so that I can set the record straight. I stated in that article that “most autistic kids are either oblivious or immune to the negative association with the word, or any other ‘teasing’ that may come from young kids.” Boy was I wrong. Not only do they hear it, they understand it, and it sinks deep into their being. It has been proven to haunt them throughout their lives.

So, what was I thinking when I wrote this nonsense? Well I was going off of the information that I had found by researching empathy and feelings. The moral of this story is that you shouldn’t just believe everything you read on the internet. I’ve learned from that, but I also know more now because of listening to real people, and not just these so-called experts who run the clinical websites.

That brought me to the real experts. When I was researching some information for an upcoming event I’m working on I found many videos on YouTube about the R-Word. Almost all of them had interviews with people with disabilities, and each person was very emotional about the fact that they hate the word retarded. The sound of it sent rage, sadness, and tears through the individuals in each clip.

Nobody should be made to feel this way, especially not with words that first of all are used with the wrong meaning, and second are unnecessary in any way.

The following is from that same article I penned. I think it is just as important today as it was two years ago.

“Working at a college it’s not uncommon for me to hear someone say, “That’s retarded” as I walk across campus. It’s become a familiar phrase in American speech. Calling someone else retarded is commonplace with most of our younger generations. People spit it out without thinking about the negative connotations associated with it. It has even been used in the past to clinically describe people with mental illness.”

However, no matter how it’s used it should be found to be offensive.

The sad part is when the adults are the ones actually using the word and don’t even realize they are hurting anyone’s feelings. In fact, there are times when it is used because it has been accepted for so long to actually describe a disability.

I often hear people talk about the world being too politically correct. That’s not the problem though. As I stated a couple years ago, and I’ll say again today; “I call it humanely correct. What we are trying to do in this society, or should be as parents, is fight for equal rights. It is a civil-rights issue. With the rapidly increasing diagnosis of children with autism the issue of rights is going to grow.”

R-word.org has some great information, so I recommend checking it out. Read old articles at http://pervasiveparenting.blogspot.com/.

 

Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at pervasiveparenting@hotmail.com. I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column.

 

Life's Been Good To Me So Far

Pervasive Parenting

By Kodey Toney

Life’s Been Good To Me So Far

This week I had the opportunity to attend the Joining Forces Conference in Norman, OK. This is an annual conference hosted by the Oklahoma Family Network, and held to help families and professionals better provide services for families coping with disabilities. This year’s keynote speaker was Michelle “Sheli” Reynolds, Ph.D., from the Missouri Family to Family Network. There were several points in her presentation that I would like to share this week.

The theme of this year’s conference was “A Good Life Is…” which I found to be a great question. What is a good life? This question is not just for your child with a disability. What is a good life for you? I think that once you answer that question for yourself you’ve answered it for everyone in your life. The answer for most of us is a good quality of life.

For those who don’t know I work with local middle and high school students to help them prepare for college. One of the workshops that I do is to help them understand their goals in life. I ask them, “What is your overall mission in life?” After a few minutes of coaxing the answer, we usually land at having a good life for themselves and their (potential) family.

So how do we accomplish this? One of the quotes that Reynolds had that stuck with me was, “Our overall compass is ‘quality of life’.” I think this is a great way to see things. If we keep in mind that we’re looking for the best possible life for ourselves and our children then we’re going to eventually find that “good life” we’re searching for.

Reynolds also said, “People with disabilities and their families have the right to live, love, work, play and pursue their life aspirations just as others do in their community.” This is one of my main goals for this area of the state. I want people to realize that there is a place in life for people with disabilities. We have to find those places and work to get people in the classrooms with their peers, into jobs that they love, and work to help find community acceptance.

Where does this begin? Well, as Reynolds explained, “Individuals live within the context of their families.” What I take this to mean is that what we do, say, and how we act will guide them in life. When we work hard for their rights they will see this and do the same for themselves. As I’ve said several times, we are our children’s biggest advocate.

Another quotable gem I caught from the conference was, “It’s not what you do or how you do it, it’s WHY you do it.” I know this is harder for the parents because we have a 24 hour reminder of why we advocate. However, for teachers and other professionals there may need to be a reminder every once in a while. Don’t forget why you got into the business that you did. Hopefully it was to help individuals and do what is best for the child. If it’s not you may want to rethink things.

These are only a few points, but I thought they highlighted the speech and the conference. WE have to keep focusing on a good life for our children. Don’t forget, what we do today can actually pave the way for others in the future.

Shot To The Heart...

Pervasive Parenting
By Kodey Toney
Shot to the Heart…
One of the questions I get most as I’m out advocating is, “What do you think causes autism?” I usually have a “canned” answer. You know, one that tries to appease while not offending anyone. It is so controversial that I usually shy away and say, “I’m not really sure, there could be so many things, but I do know that my son has been diagnosed so I’m focused on helping him.”
However, the debate rages on, and one of the most blamed culprits seem to be vaccinations. Throughout the years the mercury-laden Thimerosal has taken the brunt of the accusations for autism. Though there have been questionable tests throughout the years from all sides of the coin, a recent website has brought some interesting facts to light for the public to see. My wife found the site somehow and sent it to me. Unlike most sites about Thimerosal, www.ashotoftruth.org/history actually has some data and proof to back up many of the accusations. If nothing else it is worth looking into.
I didn’t just read the article and then regurgitate the information. I did some further investigation to make sure that their facts were legitimate. While some was questionable I will say that most of it was dead on.
I’m going to share a little bit of the information with you and let you draw your own conclusions. I will say that this is pretty one sided, and I will only put in the points that I felt were interesting. Look at this as a book report of sorts.
In the 1920s Eli Lilly Corporation began working on the mercury compound Thimerosal. By 1929 they had a patent and began using it as a preservative for medicine. Among these medicines were vaccinations. This was all implemented despite the fact that the company had very little testing on humans, and that testing was not actually successful.
When the compound was first put into use in 1931 the problems with autism shortly followed. The first 11 children diagnosed with autism were born between 1931 and 1938.
As the number of vaccines required by the federal government increased so did the number of cases of autism. Also, the number of studies involving Thimerosal increased, and none mentioned in the article seem to be positive. There are also videos of legislators asking if there is any actual evidence as to whether these chemicals can help preserve the vaccines and no one could answer with a yes.
In the 1970s more vaccinations begin using Thimerosal, and by the early 1980s an 18-month old child would have 125 micrograms of mercury in their system. This is bad enough for an adult, but when you’re pumping that much of a toxic element into a tiny body you’re going to see some issues.
As you could predict, the Center for Disease Control (CDC) begins to see the number of children diagnosed with autism increase in the early 80s.
As the number of studies begin to show that the mercury is not safe the number of safety precautions for the pharmaceuticals begin to surface. I’m not going to get into the political side of this, but there were some fishy things happening within congress. In 1986 the government passed the National Childhood Vaccine Act which states that the pharmaceutical companies cannot be sued for injuries occurred by vaccines, and the federal government will have to pay out of tax money for lawsuits.
The vaccines are increasing by the 1990s and so are the diagnoses. In January of 1991 there are more than 200 micrograms of mercury injected into the small bodies of children by the age of 18-months. The number of children diagnosed with autism increased from 1 in 1000 in 1980 to 1 in 150. This trend continues today and we now have 1 in 50 diagnosed.
There is way more evidence than I could possibly fit into this week’s column, but I think the point has been made. I highly recommend that you read this information. There are way too many coincidences for this to be just happenstance. Especially when most children begin to show signs shortly after that 18-month mark when they receive the Measles, Mumps, and Rubella (MMR) shots.
I’m in no way saying that we shouldn’t vaccinate our children. I think it is a great thing, but we need to take a look at what’s in our shots before we inject them into our children.
This is just a little something to consider.
Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at pervasiveparenting@hotmail.com. I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column. You can also find all columns archived at blogspot.com.

Morning Desire

Pervasive Parenting

By Kodey Toney

Morning Desire

As I’ve expressed in the past, mornings with Konner is a difficult task. First of all I’m not a morning person. I, like many, have to have some time and coffee to wake up. This paired with Konner’s lack of concentration makes for a bad combination. When I’m asking him several times each morning to get his clothes on, take his meds, put on his shoes, fix his hair, and work on getting his backpack and coat together it gets to be really frustrating to tell him things several times. So when I began reading another section in the book “The Reason I Jump” by Naoki Higashida, translated by David Mitchell, things started to make a little more sense to me.

I was recently reading from another source that children on the autism spectrum usually have more than one diagnosis. This is called comorbidity. For instance, though they are diagnosed with pervasive developmental disorder-not otherwise specified (PDD-NOS) they may also have sensory processing disorder, anxiety, obsessive compulsive disorder (OCD), or attention-deficit hyperactivity disorder (ADHD). The last one is the one that causes my stress in the morning.

Naoki Higashida, a teen with autism who is non-verbal, has written about why he doesn’t do what he’s told right away. He states in his book: “There are times when I can’t do what I want to, or what I have to do. It doesn’t mean I don’t want to do it. I just can’t get it all together, somehow. Even performing one straightforward task, I can’t get started as smoothly as you can.”

So what takes a person with autism so long to process the information? Well, without getting too far into the science of the brain, it just takes them longer for the information to reach the part of the brain that processes the information, and once it does they then have to make their brain do what they want it to. Unlike a neurotypical person this can be harder because of the delay in thought.

Naoki explains it a little better than I can though. He says:

1.      “I think about what I’m going to do.”

2.      “I visualize how I’m going to do it.”

3.      “I encourage myself to get going.”

So if this procedure is processed quickly then they can get the task done quickly, but if it is not it may take longer. The longer it takes the more frustrated all involved become.

Naoki goes on to say that there are times when his body won’t let him act on the task at hand. It seems as though he has no control of his body. “My whole body, except for my soul, feels as if it belongs to somebody else and I have zero control over it,” says Naoki.

Can you imagine the frustration a child on the spectrum must feel in these situations? Just putting on your socks or shoes is daunting to them.

Throw in the ADHD and low patience from a father and you have a recipe for morning disaster. The worst part is that we have Konner on medicine for his ADHD. However, in the morning it has worn off and he is in full hyper mode. He has also disengaged from the attention mode. This is a non-morning person’s worst nightmare.

There are some things that I try to do to help with the situation. One thing that I have begun is to put clothes out the night before. I don’t always do this, but I find that the days I do tend to run much more smoothly than the days I don’t. I also found that if I get up earlier I can have a little more time to wake up, I can lay clothes out and find shoes and backpacks if I haven’t done that the night before, and I can even have a cup of coffee if I want to. I know it means that I have to get up earlier, but in the long run it seems to make a big difference.

These are just a few ideas, and I’m not sure if anyone else has these problems, but I have to imagine I’m not alone.

For more information on this and other subjects I’ve written about in the past make sure to check out Pervasive Parenting at http://pervasiveparenting.blogspot.com/. This has all my columns I have written and you can do a search for what issues you might be having.

Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at pervasiveparenting@hotmail.com. I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column. You can also find all columns archived at blogspot.com.

What's My Age Again

Pervasive Parenting

By Kodey Toney

What’s My Age Again

I saw a video on Facebook this weekend that made me really think. There was a girl who was flipping through a notebook explaining that her brother, who was diagnosed with autism, had been bullied and made fun of a lot lately. This ridicule was to the point that it actually pushed him to think thoughts of suicide and unworthiness. The kicker is that this child was only 10 years old. The other problem was that it wasn’t just his peers who were making fun of him and calling him names. According to his sibling, he had adults, yes grown people, telling him some awful things.

Social problems are one of the major issues involved with autism. We understand that the children on the spectrum have problems talking with and socializing with others. This stems from communication problems. If a person has a problem with getting their thoughts across and vocalizing those thoughts then they are less likely to want to converse with others. This is amplified if every time you talk someone makes fun of you; especially adults.

There’s another quote that I saw that I thought was pretty strong. It said, “I’m not anti-social, I’m pro-solitude.” Sometimes this is true in most people, but I think that the “loner” label is inaccurate. What we’ve learned is that children with autism are not anti-social. They’re also not anti-social. They just need some help and coaching to allow them to be more comfortable with communicating with others.

People on the spectrum want to have friends. They want to talk to others, and they obviously want to be accepted by their peers. If they were loners and didn’t care then this young kid wouldn’t have problems with someone talking about him. He wouldn’t be contemplating leaving this life.

We have to look at ways to make everyone feel accepted. When I say everyone I don’t just mean those with disabilities, but this is a great place to start.

This is why I think we need more peer-mentoring programs. We have to allow these children to learn from others who are patient and understanding. It will allow those children to connect with children who have disabilities and understand their problems. It’s a win-win situation.

We obviously need to get the adults involved as well. Some of the best mentors in a child’s life are their teachers. This is why a teacher should step in and try to make a difference. If they have one person to make them feel like they can do well in life they are more likely to succeed.

Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at pervasiveparenting@hotmail.com. I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column. You can also find all columns archived at blogspot.com.

 

Help, I Need Somebody

Pervasive Parenting

By Kodey Toney

Help, I Need Somebody

If you have a child with a disability, whether it is a developmental disability or a learning disability, chances are you’ve had to meet with your school to come up with an Individualized Education Plan (IEP). Those words seems to send different emotions through parents when said out loud. Anger, fear, anxiety, tension, and distrust are all common feelings prior to an IEP meeting. One of the main reasons behind this is usually the lack of knowledge and preparation on behalf of the parents. However, it doesn’t have to be this way.

I have talked in the past about different ways to prepare for a meeting, and how to act while in the meeting. The us-against-them idea is overwhelming, and it is usually imposed by both sides. If you have a good mediator in the room who is looking out for the best interest of the child (which is where the focus should be), and can make sure that you keep on track and stay within the guidelines you will usually have a more productive and less stressful meeting.

This is where an advocate comes into play. There are tons of rules and regulations involved in advocating for your child. You as the parent are your child’s best advocate. However, there are times when the IEPs, IDEAs, 504s, and FAPEs can be too much to comprehend; especially when you feel like the people across the table are out to get you. If you have someone who knows the rules, and has some experience with these types of negotiations you will most likely have a better outcome.

So what is an advocate? One definition states: “Advocate - helper: somebody who acts or intercedes on behalf of another.” This means that they first and foremost are a collaborator. They don’t take over the meeting. They sit back and mediate. They only intervene if there is something that seems to not be going the way it should. You have the right to have an advocate in your IEP meeting.

Part of my training in Partners in Policymaking was on advocacy skills. One of the things we were taught was that it is not an us-against-them mentality that gets you to where you need to be. You have to first go into the meeting and lay all the cards on the table. Explain what you want, what your fears are, and what you think needs to happen to get there. The other side “should” do the same.

Again, I know all of this sounds great in theory, but an advocate can help. Sometimes you’ve dealt with the school so long that it is good to bring in a new face. Many schools are not used to someone who is educated on the regulations, and let’s face it; many schools don’t really know the regulations even though they should. That is not a knock to the schools, it’s just that often times they have not had to deal with these issues and need to be educated or refreshed.

There are several places to look for advocates to help out. I am an advocate and have worked with several families in the area already through the Pervasive Parenting Center. I would offer my services free of charge to anyone in the area. This includes consultation on a current IEP, or mediating an upcoming IEP. If you need help feel free to contact me at pervasiveparenting@hotmail.com.

Of course there are others that I would recommend as well including the Oklahoma Parents Center. You can contact them by visiting their website at http://oklahomaparentscenter.org/.

Another great resource, especially if you think you are not getting what you need legally, is the Oklahoma Disability Law Center. They are free as well. They are the organization that offers the Wrightslaw conference every year. This is a conference that Jen and I went to last week. It is our second conference and we learn so much good information each time about disability law. You can find them at http://oklahomadisabilitylaw.org/.

Again, make sure that you are getting what you can to help your child, and if you feel like you’re not find someone who can help you.

You're Beautiful

Pervasive Parenting

By Kodey Toney

You’re Beautiful

I often talk about what we can do to help our children who are coping with disabilities. I say that we must be the advocate for our kids and that is the most important job you have. I truly believe this, but once you do this for so long it can cause wear and tear on you both mentally and physically. I came across a post on a friend’s Facebook recently, and while I think I have probably written about this subject in the past it is good to revisit it because it is very important as parents to take care of yourselves. If you breakdown then you can’t help anyone. This article explains what you as a friend, family member, co-worker, or outsider can do to help a parent of a child with special needs.

This article, which is from a blog called “Beautiful In His Time” which is written by a woman named Aprille (I couldn’t find more than this). She has some great advice, and I’d like to share some of it with you including my take on it a little. I’m paraphrasing some of this information.

1. “Express that you care her as a person, as a fellow mom who is just like you. That you care about her child and the special needs that her child has.” There is nothing more important to anyone than to know that they are valuable. There are times when you wonder if what you’re doing as a parent is really the right thing, and there are times when you know you’ve done the wrong things. It’s very nice to have someone let you know that you are doing a good job.

2. “Don’t forget that she’s a mom and a woman – just like you are. Treat her like a normal mom, not some freak of nature.” We often get caught up in the disability world, and especially those from the “outside” think, “Oh, it takes a special person to cope with what she’s going through.” Well, underneath that often-tough exterior there is a normal mom just like most others.

3. “Include her AND her special needs child. Invite them to play dates and birthday parties. Take her out for coffee and invite her to your girls’ outings. Sit with them at church.” Just like kids in school, parents of special needs children just want to be treated the same as anyone else. We often feel like we’re outsiders because we tend to watch our children a little closer and become overprotective. We are seen as recluses because we typically don’t like to go out in public too much unless we have to. It’s a great feeling to know that someone has given you a chance to “fit in” at a get-together. Don’t be surprised if they turn you down, but keep inviting them. They may be just a little apprehensive.

Aprille writes - “It might be stressful. You and your children will probably make “mistakes” when interacting with her special-needs child. But you will never learn how to act around them unless you try. And I promise you, that taking the time to do so will mean so much to them that they will be much more understanding of your mistakes than if you had kept your distance.”

4. “Ask her questions. You will probably never fully understand her life, but at least try to show an interest in what she goes through on a daily basis.” Besides showing interest, which is a great thing to anyone, it gives her a chance to vent. This is one of the greatest forms of therapy for a parent to let others hear you. Don’t be surprised if tears come. Just listen and try to understand.

5. “Learn her language. She might speak in acronyms like IEP, ABA, ASD, and SPD. Ask her what they mean.” There are so many different “letters” out there that it’s hard to understand even for someone who studies them like me. But if you ask questions then you will begin to learn. If you have a questions chances are someone else does to, don’t be afraid to ask.

6. “Keep advice to yourself. This is probably where people make some of the most hurtful comments to a special-needs mom.” We are constantly hearing advice, both good and bad, from all sides of the issue. As I said before, we know we’re doing good and bad parenting from time to time. The last thing we need is someone telling us this. What we need is someone to listen to our problems. If they ask for advice then it’s your time to deliver, but even then proceed with caution.

7. “Don’t invalidate or downplay her hardship by saying “oh, my child does that too.” Holy cow this is the worst thing in the world for me. I get irritated when I hear a parent complain about their neurotypical child having a “meltdown”. Your child can be crazy, I have a child who is neurotypical, I know. Don’t forget what that child goes through on a daily basis with sensory issues or neurological problems.

On the other hand, for my parents of children with special needs, don’t over-do your side of things. I have had to watch myself on this one in the past. Everyone understands that your child has issues. Don’t remind them every time they talk about their child. Don’t be that parent who says, “Yeah, but my kids has autism,” or “Try it with a child with autism.”

8. “Refuse to compare your child’s development to hers. When she announces that her child finally said a sentence, or went potty, or started walking – and your child did it 10 months ago – keep. your. mouth. shut. and simply rejoice with her.” Our goals, obstacles, and milestones are always going to be different. Don’t throw it in their face that their child has delays. If it doesn’t seem like a big deal to you don’t forget how hard that child and parent had to work to get to that point. It probably wasn’t as easy with their child.

9. “Offer tangible help. Offer to babysit and ask the questions or get the education needed to know how to babysit her child.” Nothing can mean more to a parent than a couple minutes of “me time”. Again, don’t be surprised if you are turned down a couple times because they don’t want to leave their child with just anyone. Keep offering and explain that you want them to teach you how to care for their child.

10. “Pray for her and her child. Pray for healing for her child or improvement in her child’s functions and behavior.” I’ve talked in the past about how important it is to keep God and prayer in your life. If you have someone else praying along with you it can work wonders.

There is a ton of great advice in her blog, and I cut some of it down. I’m going to include the site address so that you can get the full article: http://beautifulinhistime.com/2013/06/10/how-to-encourage-a-special-needs-mom/.  

 

It's Not What You Want, It's What You Give

Pervasive Parenting
By Kodey Toney

It's Not What You Want, It's What You Give

Growing up I was the younger brother. My sister would push me around, beat on me, and sometimes encourage me to do things I shouldn't, at least until I got bigger. I would say this is pretty typical with siblings. However, I noticed recently that our household was a little different. I'm not sure if this is true in all homes with a child on the autism spectrum, but it is around here.
Let me start by saying that Kruz is your typical little brother. He's just like I was as a kid...ok, I'm still a little like this. Kruz pesters, picks, and annoys with the best of 'em. He can get on anybody's nerve in the blink of an eye. This goes double for Konner, especially when he's already over-stimulated.
In fact, as I'm writing this Konner is in the other room screaming, "Go away! Stay away from me!"
Kruz tends to take over the role of the elder sometimes though by bossing Konner around. He manipulates his brother into doing things he either shouldn't or doesn't want to do.
This morning I was sitting in bed when Kruz came in to inform me (tattle) that Konner had said a bad word. I called Konner in to discipline him and then sent him on his way back into the living room. A couple minutes later I went into the living room on my way to the kitchen. As I approached the living room from the hall I heard Kruz tell Konner to, "Say it again." He was encouraging Konner to say cuss words, and then coming in to tell on him.
I just shook my head a little.
Now, before I'm judged too much, let me explain that I don't say bad words around the boys for obvious reasons, but with Konner's echolalia (repetitive speak common in children with autism) I have always made a conscious effort to watch what I say. He has learned most of this from the computer and YouTube.
This is usually accessed on his iPad which we purchased because there are so many great tools and apps that can help kids with autism. This is "Konner's" iPad. We have bought Kruz a Nabi, tablet, and he had an iPod touch. He only wants the iPad. Because of this he will talk Konner out of it. Konner will be in the middle of playing, and if I turn around for just a second Kruz will have it and Konner will be looking for something else to do. He does this with other toys too.
Kruz said the other day that he thinks they are all his toys.
That's not to say that Konner can't hold his own. He will make sure Kruz only gets something when he really doesn't want it. Konner will fight for something if he needs to.
I know that Kruz is taking advantage of his brother some, and address this when I can, but I also know that they are just being brothers.

Down Through the Chimney With Good Saint Nick

Pervasive Parenting 

By Kodey Toney

Down Through the Chimney With Good Saint Nick

In a recent browse through Facebook I came upon a funny holiday themed list that I felt was great for a Christmas column. The list is “Reasons Why Santa Has Autism”, and while not all of them pertain to Konner, many struck a nerve because they reminded me of things through the years that he does or has done. I’m only sharing those that remind me of him. Since he’s one of the greatest gifts I’ve ever received I’m giving a part of him to you as my present to you this year. 

While this is funny it’s also good to point out that most families cope with these same things. While the saying is, “Once you’ve met one child with autism, you’ve met one child with autism”, you still have many little quirks that make them very similar. 

So let’s get to the list:

1.    He lines up and names his reindeer over and over again. When Konner was younger he would line up everything. He would pair up shoes and stretch them throughout the length of the house. His toys were always lined up from Hot Wheels to his Thomas Trains. I went into his room earlier this week and he had all his trains lined up across his floor. I find this to be pretty common among those on the spectrum. 

2.    He wears the same clothes every day. Ok, Konner has never really done this, but that’s probably only because we never let him. My guess is that he would never change if he were given the chance. Most children with autism become attached to a certain shirt or pajamas. This is typically because they have sensory issues, and if they can find a piece of clothing that doesn’t feel like it’s ripping their skin apart then they stick to it.

3.    He has an extremely limited diet of only milk and cookies. Konner doesn’t have a sweet tooth like the big man, but he does get stuck on certain foods. There were about two years where he wouldn’t eat anything for lunch except for Lunchables. He has to have chicken and French fries when he goes to a fast food restaurant. He is a very picky eater, but it has gotten better. Many children on the spectrum are this way, and it boils down to the texture most times. There are things that don’t feel good to them so they stick with what they know is fine. 

4.    He gets stuck in the same routine year after year. Konner is a creature of habit. Routine at school and home are his way of keeping his sanity. He has to take a bath around the same time each day, then follows getting dressed, andfinally going to bed. Times vary slightly, but they have to be very close to the same time. Thesame thing threw off his day at work the last couple years. When they had stations they would change and it would make him upset if he didn’t have a warning. 

5.    He avoids social interaction and does all of his does all of his work at night when everyone else is asleep. Well, we all know that social and language skills are the issues associated with Autism Spectrum Disorders. As for the night work, not so much. Konner is usually asleep, or at least in bed, by 9 p.m. 

6.    He checks his list over and over and over…Ok, Konner doesn’t necessarily have Obsessive Compulsive Disorder, but he does get upset if something is missing and he can’t find it quickly. He will go into meltdown. However, OCD is a common issue in people on the spectrum.

7.    Everything is black or white (naughty or nice) there is no in-between. This comes from being very literal. He gets upset when you say something and it wasn’t something he actually said or felt. For instance, if you said, “Konner is mad,” he will get very upset if it is not how he really felt. He will scream, hit, and possibly meltdown and yell, “You said the wrong thing!” This is a big problem with him lately. 

8.    He loves squeezing into tiny spaces (chimneys). Konner loves to be compressed. This is common. In fact, anyone who has watched “Temple Grandin” the movie will remember the “squeezebox” that she created. The pressure is great for people who are under-sensitive to touch can use this to feel their extremities. Weighted vests and blankets are examples of everyday tools used for this pressure therapy. 

9.    He’s clueless about the social stigma of creeping into other people’s houses. I wrote a little time ago about Konner disappearing in my grandparents’ apartment building. He was found on the top floor and had been trying to open all of the doors on the way up this four-story building. He would have probably gone inside if they hadn’t been locked. He just didn’t understand that this was not socially accepted. 

10.    He does things that amaze people and leave them wondering how in the heck he did it. This happens almost every day around here. He can get past any security measure we have tried on the iPad and computer. He is a math wiz and can read exceptionally well. He creates some things on Minecraft that amaze me, including an entire Bikini Bottom scene that resembles the fictitious Sponge-Bob town. 

While the big guy from the north may be similar in some of his issues I feel that my son is the amazing one. I know that Santa can do extraordinary things in one night, but he has lots of help and doesn’t have to deal with this year round. Konner is truly amazing and has an everyday problem. He is magic to me.