We Built This City

Pervasive Parenting

By Kodey Toney

We Built This City

This week the family packed up for a long overdue trip to Kansas City to visit family. We've taken this trip before, but it had been two years since we had been there last. While there we decided to visit a couple places we had not been before, and I thought I would share one of those experiences with you. 

One of our first stops was Legoland Discovery Center. This is great place with a couple small rides, tons of Legos to play with, and a 4D movie. The boys really enjoyed the place, and considering the 90-plus degrees outside we all enjoyed the air conditioning. 

All of this is crammed into a relatively small space though, and that combined with a large number of people was a recipe for overstimulation. 

We decided to watch the movie, which was okay, but Konner has never really like the 3D glasses and things jumping out of the screen at him. This was no different, and every time something seemed to jut out at him he screamed and kicked. He got pretty uneasy until he finally just took the glasses off. The mist of water and wind blowing on him didn't really help matters much. 

We decided to let him go into the play area to work off some of that anxiety. It helped some, but it was full of kids too. 

We moved on to an area where kids could create vehicles and race them on a track with others. The area included several bowls of Lego parts that you could mix and match to make the perfect car. The problem was that there is no order to where the parts were. Konner couldn't find the parts he was looking for, and some boys were picking through the same bowl as him. This is when he started screaming. 

Now this wasn't the worst meltdown we've ever had, but it was loud. He kept screaming and Jen kept calming him. After what seemed like a long time, but was actually only about five minutes, she finally convinced him to move to a different area where we decided to eat. This did little to calm him because he just kept thinking about what he was doing and that he didn't get to finish. 

One thing about Konner, and I assume many on the spectrum, is that once they begin a task they want to finish it. If they are disrupted it can cause meltdowns.

We saw this early last school year when he had centers where students get a certain amount of time before they have to love to another area. If he wasn't done in the one are he would get upset or have to finish what he was doing. 

We convinced him to leave and promised to by a Lego set so he could build his own race car. 

This was really the only major issue we had, and a visit to the aquarium next seemed to help calm him. 

The moral is this: crowds, noise, and daunting tasks are not a good combination on vacation.

Sent from my iPhone

Looking For Answers

Pervasive Parenting

By Kodey Toney

Looking For Answers

I was honored to be interviewed this week by an educator taking a class about teaching children with disabilities. This was such a great opportunity for me because, as I've said before, it's important for teachers to try and understand these children or inclusion doesn't work. I'm glad to see teachers getting an education about integrating these pupils into their classroom. 

However, not all professions who work with people with disabilities are educated as well. For instance, we were told, by a reliable source, in one of our Partners in Policymaking classes that most doctors are only given about 15 minutes (if that) during all of their training, instruction on recognizing autism and other developmental disabilities. That may be argued I'm sure, but I'm also sure that there is not enough training to help with early diagnosis, which in turn helps with early intervention.

The National Autism Network just announced Monday that "According to researchers, a training program designed to teach pediatricians to better identify kids with autism may be an effective way to decrease wait times and flag children with developmental disorder at younger ages." 

I have two things to say about that; Duh, and this is a great idea. Why shouldn't pediatricians be taught what to look for in patients to help diagnose autism, or at least refer for a diagnosis? 

I can remember when my wife asked our pediatrician about Konner, and she reluctantly referred us to a psychologist. I'm not sure she really believed it, but I do remember her telling us after he was diagnosed that she was sorry that he had autism. We changed doctors shortly after that. 

As I've preached before, early intervention is the best way to help your child. The sooner you can get the diagnosis the sooner you can get the therapies to help the child through life. 

The instruction in the study was a two-day training that helped them diagnose 90 percent of the cases correctly. Two days is not much, but it's a start, and if it could help 90 percent of the population I think it should be mandatory. But, what do I know? As I've always said, I'm no expert.

With A Little Help From My Friends

Pervasive Parenting

By Kodey Toney

With A Little Help From My Friends

Last week I wrote about some information I received at a conference that I attended recently. What I mentioned, but didn’t go into detail on, is that this conference was sponsored by the Oklahoma Parents Center. You see, as I’ve said before, one of my main goals is to provide information on resources available in this area. Since we are in a rural part of the state, and hours away from Tulsa and Oklahoma City, there are limited resources. I feel that it is my duty to try and inform others of the organizations that can help. The following are two of those groups.

The Oklahoma Parents Center is a good example. The conference that they held was overflowing with information and other resources that I would like to hit on in the near future.

So what is the Oklahoma Parents Center? Under IDEA, the US Department of Education established funding for more than 100 centers throughout the United States.

According to the website: http://oklahomaparentscenter.org/,“The Oklahoma Parents Center is the statewide parent training and information (PTI) center serving parents of children with disabilities. Our goal is to educate and support parents, families and professionals in building partnerships that meet the needs of children and youth with the full range of disabilities ages’ birth to 26. We are a regionalized model with staff living in the area that they serve.”

So why would you need the OPC? They can help with certain things such as understanding IDEA, IEPs, 504s, etc. They help with navigating the troubled waters of the education system.They understand that not all children have the education they deserve and will work to achieve that goal.

I also attended a conference with the Oklahoma Family Network that was great. This group also works throughout the state to help families of people with disabilities.

According to the OFN website:http://oklahomafamilynetwork.org/, “The Oklahoma Family Network (OFN) Family-to-Family Health Information Centerinforms and connects individuals with special health care needs and disabilities, their families and professionals to services and supports in their communities. OFN provides opportunities for individuals and families to strengthen their communities through leadership development and volunteering. The OFN Mentorship Program is the flagship program of the center.”

The site also states that they can provide parents with Parent-to-Parent Support. According to the site this is:

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For those carrying a child with a medical issue, a disability or may be premature

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For those parenting a child in a Neonatal or PediatricIntensive Care Unit or a graduate thereof

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For those parenting a child with special health care needs or disabilities

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For those parenting a child diagnosed with cancer

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For those pregnant with a child who may have an early birth, a disability or a fatal diagnosis

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For those who have experienced the loss of a child with special needs

They also have information on Support Groups:

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For those raising a child with special needs or a disability

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For those raising a child with a rare or undiagnosed disorder

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For Siblings of children with special needs or a disability

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Navigation to support groups for those raising children with Autism, Cerebral Palsy, Cystic Fibrosis, Down Syndrome, Mental Health Diagnoses, etc.

You see I feel that educating yourself on what is available for you and your child is the most important thing you can do. I often gear this column toward autism, but I had friend tell me once that if you really want to educate yourself look at all disabilities. You have to get outside of your comfort zone, and you might learn that other disabilities are going through the same thing, or have been through it and have answers you are looking for. This is why I have tried to branch out lately to other developmental disabilities. I think Partners in Policymaking has helped me think outside the box on this one.

I’ve also started to establish a center that does just that in this area. The Pervasive Parenting Center is just in the planning stages, but I hope to bring you more information about this in the near future.

Both of these organizations, the OFN and OPC, along with the Pervasive Parenting Center can help with any disability. Allhave Facebook pages. If you need more information on any of these please contact me at pervasiveparenting@hotmail.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. You can also find all columns archived at blogspot.com.

 

Communication Breakdown

Pervasive Parenting  

By Kodey Toney 

Communication Breakdown 

I was looking through some information I received at a recent conference I attended and found some good advice that I thought I would share. This comes from a session that I didn’t attend, but the information in the power point we were given seemed to have some good advice about communication between parents and the school.  

Before I dive into the information at hand let me explain my stance on parent/school relationships. They are very important if you want your child to succeed. I’ve often said that many people on both sides go into relationships and IEP meetings with an us-against-them mentality. This is where much of the tensions usually come from and that spirals out of control until neither side can negotiate what they really want, or should want, which is the best education for the child at hand. 

Notice that I used the word relationship. This is exactly what it is. You have to have a working relationship with your child’s school or you will never make it. So many times I see things go bad and it usually ends with both sides resenting the things that happen in the meeting.  

Here are a couple things I felt interesting and useful as I read through the advice.  

The first thing that is suggested is that you introduce yourself to your child’s teacher(s) and school staff. This sounds like a no-brainer, but you would be surprised the number of parents who never step foot inside the classroom, or building for that matter, unless there is a problem. This goes double for all you fathers out there. I remember when we first started going to Konner’s IEP meetings and the team would tell me, “I’m so glad you’re here. We don’t see that many dads in here.” You have to be involved.  

If you don’t already have an IEP set up at the beginning of the year you may want to visit the teacher. Send an email or message ahead of time to set up an appointment. While many teachers won’t mind if you just pop in they are very busy, they have 15 to 30 children after all, you probably wouldn’t want someone just dropping in on you at your work.  

Let the teachers know that you are interested in hearing from them. Again, they are busy, but if you take the time to help them understand how much their input is about your child they will take the time to let you know how they are doing (see also information in past columns about communication notebooks).  

Make sure that your child’s teacher and school have a “good” contact list. If they can’t get in touch with you they can’t let you know what’s going on with your child.  

Don’t forget to let them know that you want the good stuff with the bad. Often times we are just waiting on that call that our child has set the fire alarm off again, or that he has pushed a kid off the playground equipment. We want the positive responses too.  

One thing that I learned in my years as a journalist; there is more than one way to contact someone. There is email, cell phone, work phone, home phone, Skype, Facebook, Twitter, etc. I’ve also learned that some people have their favorite ways to communicate. Find out what your child’s teacher likes. This will be your primary pipeline. Don’t forget some like the old fashion face-to-face meetings.  

That road goes both ways though. Let the teacher know what form of communication works best for you. Do you check your emails often? How often is your phone turned off? Be honest with them.  

When you request information from a teacher give them time to respond. Again, they are busy people. Don’t pressure them. If you can give them adequate time it will help.  

Find out when the teacher has their planning period. This will be very helpful for you and them. This is a time when they are not trying to wrangle dozens of rowdy children.  

Attend other functions. Don’t just show up to your child’s school when an IEP is set, or when you have been called for something bad. Parent-Teacher meetings are great and will show that you care about your child’s academic well-being. If there are school assemblies or festivals and you can make it you should plan to attend. It’s good for the relationship with the school, but it is also good for your child to know you care.  

Visit where your child learns. Go into the classroom. There may be things in there that can cause your child to be irritated that the teacher may not recognize. Remember that you know your child better than most.  

Be open minded about what the teacher tells you. If you have to take some time to reflect on the situation and get back to them. They are telling you what they observe. You need to look at that and collaborate with them.  

These are just a few suggestions that I have given based on what was presented in the power point (This information was provided by Rick Bishop and Marlene Webster). I hope they can help.  

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.