Sunday, January 4, 2015

A Year In The Life

Pervasive Parenting 
By Kodey Toney

A Year In The Life

As I reflect on the past year I see the many things that we have accomplished. I see things with Konner that were awesome. His reading level and math levels have increased. We have some things to work on, but then we probably always will. The Pervasive Parenting Center has worked to serve this area very hard this year. We have talked to more than 500 educators in eastern Oklahoma about autism and People First Language. We gave out more than $500 in grant money to local special education departments. We had a successful autism walk in April, partnered with the Oklahoma Skate Slam to raise funds and awareness for our cause, started a Sibshop to help siblings, and have many new ideas for the upcoming year. 
I finished a great program to help advocate for people in this area thanks to the Oklahoma Disability Law Center. 
With all of this you would think that I would be satisfied, but somehow I'm not. I'm happy and grateful for all the things we have accomplished. I'm extremely thankful for the support we have received in donations from the community. 
What I would like to see more of is participation from families. I'm not saying this to upset anyone. I'm just trying to help families understand that we, and all the resources we partner with, including the Oklahoma Family Network, Oklahoma Parents Center, Oklahoma Disability Law Center, Sooner Success, Oklahoma Developmental Disabilities Council, and many more, are here to help. 
When we have conferences, meetings, and events I have noticed that it is mostly attended by professionals. Parents and families are a rarity. I'm not sure I understand why. If someone wants to tell me I will listen. You can email me at ktoney@pervasiveparentingcenter.org, I'll work to do whatever I can to make this more friendly and appealing if I can. 
In the new year, I want to challenge families to attend more of these events. These are designed to help you. They are held to help get your child the best resources, and in turn the best possible life and future. Please help us help your children. 
Thank you for a great year. I hope you all have a happy new year.

Monday, December 29, 2014

All I Want For Christmas

Pervasive Parenting 
By Kodey Toney

All I Want For Christmas 

This week Jen was wrapping presents and realized that we had a few more gifts for Kruz than for Konner. We began to talk about an extra present for Konner, but he's so hard to buy for. He doesn't tell us much about what he wants. If he does it's pretty vague. He may say a new train, or Minecraft stuff. So what do you get?
First of all let me say that I know how fortunate that we are that he can tell us that much. I can't imagine how tough it is to buy for a child who is non-verbal. I don't speak of things I don't know about, so I won't go into this, but I will say it is still tough to determine a good present for a child on the spectrum. 
Do you look for something that can help them with their therapies and ongoing issues? It seems that a new weighted vest, or device to help with motor skills might be more like work than recreation. With the high number of therapies throughout the year wouldn't it be better to give them something fun?
Then how do you know what they want? I know Konner likes trains, but he seems to have every one of them known to man. I can let him pick them out, which we usually do, but that defeats the surprise factor. 
I heard recently that some parents get four things: something they want, something they need, something to wear, and something to read. This is a great idea, but let's break this down (I am watching football while I'm writing this by the way). Something they need is probably easy, and can fall into the something to wear. However you should probably not get them confused. The need might be a new weighted blanket...if you want to go there. Don't forget that the thing to read can be for you to read to them. If your child can't read that doesn't mean they don't need for you to read to them. Something to wear is good, but what kid likes socks and underwear? 
So that brings us back to the want. Regardless of need, reading ability, verbal ability, clothing taste, or any other variable there is one thing all children want regardless of disability...love. Sounds cheesy I know, but as long as you are trying to understand what they want, you are buying things with their interest in mind, and you love them your going to make it a good Christmas. 
Merry Christmas from Konner, Kruz, Jennifer, and Kodey Toney. 

You Work Hard For Your Money

Pervasive Parenting 
By Kodey Toney

You Work Hard For Your Money

When there is a child in a classroom with special needs it is oftentimes necessary to have a helping hand for the teacher. If you are fortunate enough to have an aide in the classroom then there is usually a little misconception about their job. In the past couple weeks I've talked about a letter that was written by Konner's aide last year that outlined some great tips for helping a child on the spectrum. Within her text she also included a small description of what she should be doing to help out. I'm going to include that in today's column, but I also want to add a few things I think people overlook.
Let me start by saying that I have the utmost respect for teacher's aides. They are often overlooked and under appreciated. They have tougher job than most give them credit for, and work for an average of less than $15,000 per year in our area. 
While most see them as a glorified babysitter, they are much more than that, and if they are really good they are worth their weight in gold. However, we know the Department of Education isn't paying in bullion bars. 
Some may feel that their role is minor, but for the child they are looking after they could be the most important person in their life for almost seven hours a day. 
So what is the role of a teacher's aide, also known as a paraprofessional? From the words of Mindy Hale, who worked for about five years with children with special needs, including three years with Konner: 
"I would like for everyone to remember, I am an aide, not a teacher. My job is to make sure that the student is safe and not going to do harm to himself or anyone else. You, the teacher, are in charge in the classroom. You will need to be the main one in the class giving him direction and corrective instruction. He will need you to have a set of rules, not only for your class, but some designed specifically for him. I will step in when the situation is getting uncontrollable, and do what I need to to calm the situation."
This is a short, but very good overview of an aide's duties. You see, as I've said before, the ultimate goal is for us to not have a para in the classroom. That person's job is to make her job obsolete. Independence is the ultimate goal. The way to do that is for the teacher to do as much as possible and the aide only to step in when needed. 
So some wonder what the aide is doing if they are not helping the child. A big part of the aide's job is collecting data for IEP purposes. The IEP includes goals, and in order to know if that child is achieving those goals they must have data. The aide usually has data sheets to keep track of how many times the kid raised his hand for permission to speak, sat in his chair without wondering around, held his pencil correctly, etc. Whatever the IEP says they should be doing, the aide records those things. They will also step in to assist, but only when needed.
The data is important because if those goals are not being met the teacher, administration, and school could be held liable for the child's progress. 
If you are an aide, teacher, administrator, or parent I hope this gives a little insight into the day-to-day duties of some of the hardest working members of the school staff. 


For The Good Times, Pt. 2

Pervasive Parenting 
By Kodey Toney

For The Good Times, Pt. 2

Last week I shared a letter that Konner's former aide wrote to his teachers at the end of last school year. There was so much to share that I had to break it into two parts. So here comes the second installment of "For The Good Times". 
Mindy wrote, "During a test, if he needs to leave the room so he can concentrate, let him. Also, try not to give him timed tests, which is in his IEP. He tends to hurry and not try." I think this has as much to do with the Attention Deficit Hyperactivity Disorder (ADHD) as it does the autism. He looses interest, doesn't try very hard and just wants to be done on most tests. He knows the material, but chooses not to show off...at least that's my theory. 
"During an assignment with lots of writing we have figured out that using (a word processing device) is a better way to get assignments complete. He loves to type. I know he will need to write at times, but you may have to accept what he has finished! (In his IEP)" Modifications need to be considered and made. You have to ask yourself what is more important, the child being able to write, or him knowing the assignment and finishing it? 
"He will make noise and jump around in his seat. This is just his way to work out his anxiety. You will get used to it, but during these times use redirection, not discipline. You may see it as a disruption, but his class(mates) are ok with it! The children understand and will even try to help in some situations." One of the coolest things, excuse me if I'm a little giddy about this one, is that his fellow students, especially those who have been with him since head start, have accepted him for who he is. That means the stims, outbursts, meltdowns, and anything else he's thrown at them; literally and figuratively. The only issues we've really had over the years have been from the new students who don't really know him yet, and adults who seem to think he is not conforming to their ways. I understand both of these, but the things he does goes back to the old saying, all behavior is communication. If he hits, kicks, acts out, screams, etc. it's for a reason. If you think a child hit you for "no reason" you need to look further into the situation. It could be from something that happened a few minutes ago, or that has been building up for a while. There are usually signs that come ahead of time to warn you that these actions are coming. 
Again, I think these are great suggestions, and they won't necessarily work for all. However, they are a great start. They will work well for all children too, not just those on the spectrum. 

Sunday, December 7, 2014

For The Good Times

Pervasive Parenting 
By Kodey Toney

For the Good Times

We were having family over for the holiday, so we went into super-cleaning mode at the Toney house. During all the tidying Jen found a letter from Konner's aid that he had the previous three years, Mindy Hale. She had left a "List for Konner", and I thought I would share some of the information because I think it is good to know for any parent, teacher, aide, etc. most of this will be Mindy's words.
This will probably be a two-parter since there is so much info, but I'll just start at the beginning. 
"He has to have a locker on the end top! If he is in the middle it will be overwhelming and cause a meltdown." It's best for Konner if he's not crowded, pushed around, or hovered over by the other students. In fact we've tried to work out a schedule where he goes into the hall before everyone else so that he isn't overstimulated.
"He needs to have an assigned seat in every class so he knows exactly where to go each hour. He will also have a visual schedule in his locker to help." Consistency is important with children on the spectrum. He needs to know that most things are going to be the same. He also needs to know what is coming up next. 
"Konner will need supplies in each classroom: pencils, paper, colors if needed, erasers, chewies (chew toys to help him stem). A seat sack (a little sack that hangs on the back of the chair) would be great to keep them in, or a special place in the room especially for him. If he has to leave the room to get something he gets upset if he misses anything." This makes the transition from each class as seamless as possible. The less he has to carry the easier it is to move through the halls. 
Konner really does get upset if he misses anything, to the point that he has had a meltdown asking the teacher to start over. It's best to just avoid those situations if possible. 
"Konner is also going to need a safe room in case of a meltdown. It needs to be easy to get to and a place all to himself." Konner has a small space in a separate, quite room where he can go to calm down and get ready to transition back into the classroom. An important thing to remember is that this is a "safe" room. The doors should not be closed unless it's his choice or absolutely necessary. Also, don't get this confused with the discipline area. You can't give them timeout in the safe area. It sends mixed signals.
"He will also have a reward system that will need to be in place every hour. So when he has reached a goal or has received a reward he will need a little free time to do so! (iPad, computer, or marker board)" Konner has a "star chart" that he receives a sticker each time he's doing something well. He builds up those stars until he earns a reward, as mentioned before. However, if he does something negative he has a star taken away. The point is positive reinforcement though. If he's just sitting in his seat quietly the teacher should walk by and reward him for doing the right thing. If he's working on his paper like he should he earns another star. 
This is a good place to end for this week, but there is more good advice coming next week as well. I hope it helps. 

Saturday, November 29, 2014

The Old Man's Back In Town

Pervasive Parenting 
By Kodey Toney 

The Old Man's Back In Town

I'm one of those guys that thinks we shouldn't start celebrating Christmas until Thanksgiving is over. This is why I was saddened when I came home last week to find my youngest, Kruz, and Jen building and decorating a Christmas tree. That being said, I'm going to write about Christmas for Thanksgiving week. I wouldn't normally do this, but there is something coming up soon that I want everyone to know about so you will have plenty of time to plan for it. 
The Pervasive Parenting Center will host Sensitive Santa, Thursday December 11 at 6 p.m. This will be held at the Community State Bank in Poteau. 
Local parents started this a few years back because we understand that for some families with children on the spectrum the holiday season can be overwhelming. The long lines at stores can be frustrating for a child with autism. Then you only get a second or two with the big guy. This was developed as an alternative to those lines and hotbeds for meltdownsThis event is a great way for children with disabilities and sensory issues to enjoy the holiday season. 
Any parent of a child on the spectrum knows that waiting in those long lines is just an invitation for trouble. The sights, smells, and long delay can cause a sensory overload that will leave a bad impression of Christmas. Children with disabilities who attend can enjoy a quiet evening with Santa, and don’t have to wait in lines. 
Sensitive Santa is soft spoken, unlike the boisterous, jolly soul that we see at the mall. The stereotypical reproduction of the real man from the north is usually too much for a neurotypical child to handle, much less someone who is upset by loud sounds. He won’t touch the children unless they come up to him. They don’t have to sit in his lap unless they want to. 
The children are treated to milk and cookies while they wait, and someone is on hand to read a book as well. This gives them something to do instead of standing around in a long line.
Parents can arrange for Santa to have a present ahead of time so that he could pull it out of his bag when you get there. 
Sensitive Santa is open to ALL children with disabilities, not just those on the spectrum. We understand that not all children will feel comfortable around huge crowds, and it’s inconvenient to wait in line with any type of disability. 
The only thing we ask is that this is for just the children with disabilities; no siblings. Too many children can mean too many distractions. 
If you want more information, or have a child that is planning to attend, please contact me at ktoney@pervasiveparentingcenter.org, or contact us on Facebook at the Pervasive Parenting page.

Sunday, November 23, 2014

Bring It All Home

Pervasive Parenting
By Kodey Toney

Bring It All Home

Jen and I had the privilege of attending the Oklahoma Statewide Autism Conference this weekend. It's always a great conference thanks to Rene Daman and her staff at the Oklahoma Autism Network. Jen and I started the Pervasive Parenting Center to try and help bring resources to the area, and since most of you couldn't attend the conference I thought I should share what I felt were the highlights with you. This is my way of trying to bring it all home to you. 
In my commute to work each morning I listen to the Morning Animals, so it was a pleasant surprise to hear talk-show host Phil Inzinga open the conference and talk about his son and their experiences with autism. It helps to know that I'm not the only one having difficulty working with schools and raising my child on the spectrum. 
The first keynote speaker was Michelle Garcia Winner, MA, CCC -SLP. Winner has established the Social Thinking Center and helps develop social skills in students with social learning challenges. I thought her presentation was great. One of the things she talked about was how the first thing we ask about a child is, "What is their diagnosis?" Then we treat them based on that diagnosis. We should never label a child based on the diagnosis, especially when we know that no two people are alike. So she said, "Treat the child and not the label." If you get caught up in their diagnosis we can miss something. 
She also said to remember that while we're teaching our children, or for teachers their students, we get hung up on the math and reading and forget that they are not learning social skills. As an example she explained that so many times in life, we as adults are hired for our skills. We have qualifications, degrees, and references, but we are fired for our behaviors. This is one of the most overlooked parts of being a teacher because it has nothing to do with the standards that we worry so much about. 
She also explained that social behavior is just a judgment. It's all about what others deem inappropriate. We have to teach our children how people expect them to act in public so they can judge them as appropriate. I submit that we also need to help others understand acceptance in a slightly smaller standard. What I mean is...don't be so quick to judge. 
One of the breakout sessions I attended was a friend of mine, and a fellow Partners In Policymaking graduate, Ellen Hefner, who discussed a program she had worked on to help middle school students understand People First Language. There was a panel of the students who discussed how they had developed skits and performed them to the school. These skits explained how words can hurt people, and how you should make sure that you are using appropriate language. It's a learn-by-example style of program. The students said they we're surprised by how quickly the other students took to the program. I really love this idea because kids don't want to listen to a bunch of old people, but they will more likely listen if their peers say it. 
The second day was supposed to kick off with a keynote speech by Temple Grandin's mother Eustacia Cutler. However, she had an ear infection and was advised by her doctor not to travel. So as a last minute replacement Jan Moss, a mother of two adult children with disabilities, and a long-time advocate in the state, stepped in and did a great job. She told us a few stories about her children, but the lessons behind them were powerful. She told about how her son with developmental disabilities had to have heart surgery once, and the doctors told her that she didn't have to go through with the surgery. She asked, "Won't he die if we don't?" The said yes, and she knew they were saying, "This could be a better choice for him." Granted this was a few years back, but it's the way of thinking for many. She went home and hid in her bed, which I'm sure many of us have done before, and when she asked her husband what they were going to do he replied, "All we have to do is love him." 
This is the truth. Anything else I write about boils down to those words. We have to do what is best for the child. That's what I'm constantly saying, but that breaks down to just loving them. We just have to love them, each and every one.