Thursday, March 2, 2017

Slow Ride

Pervasive Parenting
By Kodey Toney
Slow Ride
Have you ever been driving on a freeway when suddenly, out of nowhere, traffic grinds to a halt right in front of you. You are in the middle lane of a three lane road, and your lane is stopped. You nearly slam on the break and then you have to make a decision. You have to decide whether to move into the lane to the right, the slow lane, where the traffic is moving, but very slowly, or whether to take the left lane where traffic seems to be moving extremely fast. Common sense tells you to take that left lane, so you signal, move left, and proceed for about a mile before you slam on the breaks again. This time you are at a complete stopping point and stuck just like you were in the middle lane. You look to the far right and notice that the lane you should have gotten into was the slow lane, because, although it is extremely slow, it is still moving.
I think about this often because this is the way it seems with raising a child on the autism spectrum. When I talk to parents with a new diagnosis they seem the way I did when we first started with Konner, and honestly the way I still feel sometimes. They want to help their child, and NOW. Nothing is moving fast enough for them. They want to get therapy every day for their child, because twice a week for 30 minutes or an hour is not going to “fix” their child fast enough. If that works then we need therapy every day.
They feel like they are stuck in that middle lane and nothing is happening. So, they jump into the left lane. They get their therapies through the school, work the insurance, SoonerCare, or take out a small loan to get their child into therapies each day. They take off from work, school, and other important time with family and friends in order to get into that fast lane.
This seems to work at first (at least for some parents and children). You are on a fast pace to helping your child. They are learning things quickly. They are moving along at that fast pace. Until they hit the traffic ahead and grind to a halt.
What has happened? Everything was going so well in that lane that looked so good, but then suddenly you are at a standstill. There are several things that can cause this. Burnout is the main thing though. The child knows nothing about life except therapies and doctor’s appointments. There is no time to put what you are learning in those treatments into action in real life situations. There is no down-time, no play-time. They don’t have time to be a real kid.
Sometimes the right lane is the best way to go. Even though things don’t seem to be going quite as fast as you would like they are still moving. They are still advancing in the right direction, and as the old adage says, slow and steady wins the race.
Look, as a parent I understand. I’ve been there. There were times when I thought Konner would never be able to talk, stay in a classroom, or do things that every day now we take for granted. With the work we, and many therapists, have done with him over the past five-plus years he has come a long way. However, we gave him space. We let him be a child. We worked with him on the things that he was learning in the therapies. We talked to the therapists before, during, and after sessions to find out what we could do at home to help him. You have to work at home with your child, and you have to apply it in everyday situations. However, you have to let them take breaks and be kids too.
Small steps are good. As long as those steps are moving forward it’s not important how fast they are being made.

Inside Out

Pervasive Parenting
By Kodey Toney
Inside Out
This weekend I realized I was being a huge hypocrite. It was pointed out by my wife, and I didn’t even realize I was doing it.
We were at a ballgame in a noisy gymnasium when I noticed a child screaming and having a meltdown. He had the glassy eyes, was squirming, and covering his ears. I could tell he was physically in pain as the family was working hard to soothe him and make him comfortable.
I, being the diagnosis specialist that I think I am, have this child on the spectrum and start thinking about the things they should be doing to help. [This of course is sarcasm. I am not an expert and have no way to diagnose. I, like most parents of children with autism, just tend to use my experience to notice the signs.] The problem is that I have forgotten where I am, and what it was like to have a young child on the spectrum.
So, I lean over to Jen and say, “Why don’t they take that kid out of here.”
In a confirming voice she said, “You think autism?”
I don’t think I said it loud enough for anyone but her to hear, but when we got back in the car she said, “You should be careful what you say in public.”
This made me stop to think about what I had said and how I had said it. I obviously didn’t mean any disrespect to the parents, however, it may have sounded like I was judging them if you don’t know me. I try really hard not to judge anyone. I know what it was like, and I know that it was, and still is, very difficult to figure out what to do.
What I was trying to say was, “I feel bad for him. He is obviously in agony right now. I wish I could help him. If he were to walk outside where it’s a little quieter and there are less distractions he might calm down.”
In short; I felt sorry for him. I was not saying, “Why don’t they take him outside because he’s bothering me. He’s ruining the game. He’s ruining everything. He’s being a brat.”
If the family that was there at any time felt that was what I meant, I apologize. I just felt bad for the child, and really shouldn’t have said a word. I was just thinking out loud.
Sometimes I have to keep myself in check. These types of situations help to keep me in check as an advocate. I have to make sure that I understand how far we have come, and where we started.
Please, to everyone out there, be careful what you say.

Used To Be

Pervasive Parenting
By Kodey Toney
Used To Be
I was at a parent support group meeting Monday night when one of the parents said, “We used to be good parents.” I had to laugh a little, because in context she was trying to tell us that she used to have a set time for her children to go to bed. As each child grew older with different needs the time for her children to go to bed varied. So, what she was trying to say was that it was more difficult for her to get her children to go to bed at different hours, so what she had begun to do was let them do their own thing at their own time a little.
This is not unusual. It reminds me of the recent diaper commercials where the parent is very particular with the first child, but all the children afterword she has learned that it is more difficult to do this, or you just give up on trying.
As parents, especially of those with special needs, it is very easy to give up. You are not giving up as parents, but you are giving up control of some things you realize are out of your control. Keeping the house clean, making sure the beds are made, and doing daily chores can sometimes fall to the wayside when you are busy taking children to therapies, homework, practices, doctor’s appointments, school, work, etc.
If you are like me, when you do finally get home you just want to rest for a minute. That minute turns into hours and before you know it bedtime arrives and you wonder what happened.
I may be in the minority on this one, but I say do what is best for your children, individually and as a whole, and then do what is best for you. You have to take care of yourself. If when you get home you want to sit down and rest, do it. Your body and brain is probably telling you something that you haven’t been listening to for a while. We get so caught up in trying to make sure that our kids are getting everything that they need. We forget to get ourselves what we need…rest.
I always get parents that tell me they are not doing enough for their children. They want more therapies. They are only getting speech therapy twice a week, and they think that it should be every day. The thought is that if they can get better with two sessions a week, five would be way better. I had a very good speech therapist explain to me that this is not true. The therapy session is to instill an idea into the child of what they should be working on, and for the parents to understand that and work with them. Then you must do these things in a practical, everyday setting. If they are in therapy every day you will not get the opportunity to work with them in the real world, and they will get burned out working with the therapist.
I always tell parents to pick your battles. Yes, it may be important for your child to go to sleep at a certain time, and if so then work with them. If it’s not that important tonight though then move on and work on it another day.
The main thing is to make sure that you are taking care of yourself, or you can’t take care of them.
Don’t worry, your children are clothed and fed. You are doing great.

Pour Some Sugar On Me

Pervasive Parenting
By Kodey Toney
Pour Some Sugar On Me
IEPs are scary. I’m not going to sugar-coat it. They can be a real pain in the backside. However, I will say they are much less frightening if you know a little about them. I always tell parents that a school will know if you are educated on the laws of Individualized Education Programs (IEPs).
A vast majority of the questions that we receive at the Pervasive Parenting Center (PPC) are about IEPs. The grant that we recently received is to help families in this area better understand them, and to give them assistance in advocating for the student. I have been doing this for a few years now, and while I am nowhere near what I would call an expert, I will say that I have quite a bit of training to help families. If you feel you need help contact me and I will assist in any way that I can.
That being said, the PPC decided that we would try to put on a clinic to help families in the area better understand the law, navigate the system, and know where to turn if you feel you are not getting the assistance your child needs. We have put together the IEP Boot Camp which will be held Saturday, March 11 at Carl Albert State College in Sallisaw. This is a day-long workshop that will include some of the top advocates in the state, and nation. That’s right, we have state and nationally-recognized advocates coming in to help you better your child’s education.
Why wouldn’t you take advantage of this? If it’s money that you are worried about this is a FREE conference. That’s right, FREE. In fact we will even provide lunch for you if you register ahead of time.
If it is childcare or gas money that you are worried about we will provide a $50 stipend to help you offset the cost, if you register and fill out a form ahead of time.
We know that it is difficult to find time, money, and ways to attend these meetings, so we are working to make things as easy as possible. Besides, what is more important that helping your child get all the things they need to advance in school and in life?
My good friend and mentor Wanda Felty, from the Center for Learning and Leadership (OK UCEDD), will give the keynote speech to start the day. She is a mother of a person with a disability and has worked with the school systems for more than 20 years. She will share her experiences and give you advice in helping to negotiate. She has advocated for people with disabilities nationally and has a wealth of knowledge to share.
We will have Shawna Keene from the Oklahoma Department of Education. She is a behavioral specialist in the special education services office. She will discuss the ins and outs of getting an IEP from your school, and help you understand the process.
Deidra Edwards from the Oklahoma Parents Center will be on hand to give you the basics of an IEP. What you need to know to get the services you need. While this is a basic training I learn something new each time I see it, and she will answer questions as you go along.
The final part of the day will include a presentation by Kayla Bower, Esquire. Kayla, another friend and mentor, is the executive director of the Oklahoma Disability Law Center. She will talk to everyone about the Individuals with Disabilities Education Act (IDEA) law, and give you information you need to know about the law to use within your advocacy for your children. She will explain why it is important to know the law. A little of her bio reads: “Ms. Bower graduated from the University of Oklahoma School of Law in 1979. She is licensed to practice before the U.S. Supreme Court, the Tenth Circuit Court of Appeals and the Federal District Court for the Western District of Oklahoma. She is a member of the Oklahoma Bar Association, the American Association of Justice and the National Disability Rights Network. She has made presentations to national, state, and local organizations and governmental agencies, including the Oklahoma Children's Court Program.”
This will be worth your time. I promise! Please take the time to attend. When will you have an opportunity to get this much assistance so close to home again. This is about an hour drive from anywhere in our four-county coverage area.
Please register ahead of time so we will know how much food to buy. The registration link is: https://www.eventbrite.com/myevent?eid=31136654572.
This is open to professionals and educators as well.
If you have any questions please contact me at ktoney@pervasiveparentingcenter.org, or 918-658-5076.

Guess Who's Back

Pervasive Parenting
By Kodey Toney
Guess Who's Back
After a long hiatus, for reasons I'll explain in a minute, I'm finally at a point where I feel I can begin writing again.
Some might not have noticed that I had not been writing for a while, and that's alright.
However, I have been overwhelmed and humbled by the number of people that have asked me why I haven't been writing.
The short answer is that I've been very busy. For those of you who know me you will know that in October, about the time I stopped writing, I received a grant from the U.S. Department of Education, Office of Special Education Program, to turn the Pervasive Parenting Center into a Community Parent Resource Center.
What this means is that for the past four months we have moved the center from my house and car into a real office located at Carl Albert State College in Poteau. The grant has allowed me to concentrate all my time to advocating for families in eastern Oklahoma, especially LeFlore, Sequoyah, Haskell, and Latimer counties.
We at the center, which includes myself, my new part-time employee Terry Yarbery, the awesome board members, my wife Jennifer, and the boys, have been working to provide more parent support group meetings, Sibshops, resources, advice, trainings, conferences, and any support we can.
What I have realized in the past few months is that I have so much more to share. I have been doing research to help with some of the programs we are working on, and really want to share some of the ideas and knowledge that I have absorbed.
I also have some new stories about Konner, and Kruz, that I want to share.
With that said, I hope to do a better job of keeping up.
If anyone is interested you can check out and like our page on Facebook, see our webpage at www.pervasiveparentingcenter.org, contact us at 918-647-1255, or ktoney@pervasiveparentingcenter.org.
See you next week.

You're Gonna Miss This

Pervasive Parenting
By Kodey Toney
You're Gonna Miss This
It just hit me today another breakthrough we've had with Konner that I've probably missed and am just now noticing. It's because over the years it has just evolved and become something I wouldn't have thought of if Jen had not pointed it out to me.
When doing trainings with parents and educators I talk about parallel play. This is one of the signs we look for in children on the autism spectrum.
This is when children walk up beside their peers and begin to play with the same toys, but never really interact with the person next to them. They may even go so far as to imitate them, but rarely ever talk to them.
The example I give is when Konner was in head start he would walk up to a little girl playing at the block station. You could tell that he wanted to interact with the girl, but there was no way he was going to actually talk to her. He would mock her motions and build similar things.
There is a common misconception
With children on the spectrum that they want to be alone. However, this has been proven to be untrue. They just lack the social and language skills.
So that brings me to today. I was listening to a conversation in the next room with Konner and Kruz. Konner actually asked Kruz if he would play with him. I know this may not seem like much to some, but looking back at eight years ago he would have never asked anyone to play with him. Heck, he could barely talk then.
He came in the other day and asked if I wanted to play trains with him. I of course did, because I know this is something that he couldn't do before.
It wasn't really that big of a deal at the time because he has been doing it a little while, but it snuck up on me. To think I almost missed it.

An Empty Glass

Pervasive Parenting
By Kodey Toney
An Empty Glass
I've talked in the past about people on the spectrum being literal. I wanted to share something this week that happened to explain this a little further.
I was upset with the boys because they were wasting our disposable plastic cups. It seemed like everywhere I looked they were sitting around, and they would just get a new one every time I turned around.
I got onto Kruz first because he is the worst offender. I put his name on the cup with a Sharpie, and told him that if I saw him with a different one I was going to punish him.
I then got Konner one and put his name on it. As I did I said, "If I see you with a different cup..." I left the sentence open.
Konner looked at me and said, "What are you going to do about it?"
I was filled with mixed emotions. I was mad because he had mouthed me, but I was surprised because he doesn't typically talk like that. Even Kruz from the other room said, "That's your father. You don't talk to your father like that!"
I started to really lay into him when I caught myself and realized that he really didn't mean it the way most would. He really just wanted to know what was going to happen if he did.
Those are the misunderstandings that can cause problems for people that don't really understand autism. I mean, I didn't even pick up on it at first.
We have to stop sometimes and never assume anything.