Sunday, August 26, 2012

Close as Pages of a Book

Facebook can be a great resource for a parent of an autistic child. There are many pages with advice, support groups, organizations, and humor. If you know what you’re looking for it can be truly helpful.

I found a new page this week that I thought was interesting. The Autism Sparks page has little tid-bits that can help you understand things a little clearer. The page’s motto is: “Helping you find the Sparks to connect with your child with autism.” I’m going to share a couple of these things that I found worthy of note.

The first one is this: “Today’s world is busy, busy, busy, but sometimes quicker is not better and may turn out to be much, much slower. Imagine, someone shakes a bottle of coke and gives it to you. Do you take the lid off quickly and deal with the resulting mess, or do you give the bottle of coke all the time it needs so that you can accomplish your goal without the mess? Are you the same way with your child?”

I have this problem often. When Konner gets over-stimulated to the point of meltdown, or close, the first thing I want to do is to calm him down. We all know that once a child is in meltdown mode the worst thing you can do is try to calm with restraint or words. It’s best to just let them get it out as long as they don’t injure themselves or others. As a parent though, instinct says to do what you can to pacify their actions. I felt this was a great way of looking at it though. We would just stand back with a shaken can of soda, so we should probably do the same with a child who is melting down.

The next is this: “Children with autism may like what's familiar, but that doesn't mean you have to just let them do the same things over and over. A new activity that you introduce may turn out to be something they love once it’s familiar. If your child shows no interest in a new activity at first, don’t give up straightaway, try a few more times. It may not be the activity that is rejected, but the novelty.”

Don’t forget that few people like change. This is especially true in children on the spectrum. You can’t expect them to pick up a certain activity, schedule, or game immediately. You have to give it some time. It may be that they just need that time to adjust. Think of it this way. Every year at this time we start back to school. I just get it into my head, or psych myself up, to expect the first two weeks to be bad. This is what we’ve had happen in the past, so we just anticipate the same. He’s coming off the summer schedule, or lack thereof, and is trying to get acclimated to a new classroom, teacher, classmates, structure, etc. After a couple of weeks he is back to a semi-normal routine and the behavior issues lessen. I’m glad to say that so far this semester he has been pretty good.

Another is: “When trying to understand a difficult behavior – don’t just think about where and when it’s most likely to occur, think also about where and when it’s least likely to occur. The contrast between the two may help you to get a better idea about the nature of the problem.”

This is something that was really interesting to me. As a parent of a child who could explode at any moment I’m always looking to the near-future. Let me give you an example. If I’m at a restaurant I’m looking at what scenarios could play out. If he drops his fork are we going to have a meltdown? Should I just ask for a spare ahead of time to make sure I have that covered? How close is the bathroom in case we have to take a quick trip? How close is the door in case we need to escape quickly? Is that older couple in the corner going to say anything if Konner decides to have a sudden yelling spell? If so, what am I going to do? Am I going to do anything?

I honestly go through these scenes in my head to the point that I’m on pins and needles and can’t truly enjoy my dinner sometimes. This is probably part of the reason we don’t go out much. I just constantly look at the bad things that could possibly happen. However, I should look at the good. What things cause him to be calm? Can I do this if he starts to seem agitated? Think good as well as bad.

The last one I’ll touch on is this: “Sometimes children get stuck in a thought and will ask for something over and over again – even though you’ve told them they can’t have it, or can’t have it yet. One way that sometimes works to shift their attention to something else is to offer a closed choice between 2 other options (at least one of which should appeal to them, e.g. “computer or book?”), rather than respond directly to the request again (you’ve already told them “no” remember).”

This happens often here. It’s as if he doesn’t hear you when you say no. He will continue to ask over and over. I think Konner could be a great interrogator. He wouldn’t let up on someone until they told him what he wanted to hear. Instead I should offer some other choices. I often forget to make the counter proposition.

I highly recommend checking out this a page. It is full of great advice.

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 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


School Daze

Well, it’s that time again; class is back in for many of the local schools, and others start this week. I’ve noticed that many of my readers and facebook members are teachers. I think that’s awesome. If you can use some of my jibber-jabber to help you in the classroom then I feel like I’ve accomplished something.

Often times we see teachers who think that it is a hassle to have children with disabilities in the classroom. They have to modify things and change their way of teaching. This can be more so for older teachers who have a set way of thinking. I don’t blame them too much. After all, we are all creatures of habit and don’t like change. However, with inclusion in the classroom being a big help to our children and huge issue lately, it’s time to conform. It’s especially important for children like Konner who really needs the social aspect of a classroom. He has the academic side down. It’s the interaction that he really requires.

With that in mind I’m going to share some things that I have found this week that might help my teacher-readers in their classroom.

The first thing I’m going to say is you need to get to know the child you are teaching early if possible. If you can contact the family and have them bring the child in early to get acquainted with you and the classroom it will help with the first couple weeks. I know this is not always feasible, but if you can I promise it will help. Also, just expect the first two weeks to be a little hectic anyway. Remember, this child is in a new environment, with new sights, smells, and obstacles to overcome. It’s going to take some time to adjust. Don’t automatically think that the rest of the school year is going to be horrible or that the child is a problem and/or doesn’t like you.

Think about some things to help with the atmosphere. Senses are a major factor.

Smells can be a huge issue. If you have an air freshener you may think about how strong it is for a child with sensory issues. Perfume may cause problems as well. Just remember to go light. Also, if you change any of these throughout the year it can throw their world off as well.

Think about lighting in the room. I’ve seen classrooms where the teacher has placed tissue paper or a neutralizer of some sort over the florescent lights. Remember that these types of lights, even though we can’t see them, flicker constantly and can cause an autistic child to become over-stimulated quickly.

Sounds are another problem at times. Just because you can’t hear the fan kicking off and on in the room doesn’t mean that a child with acute hearing issues can’t. It can actually seem amplified for them.

I’ve said this before, but it is worth repeating. Children on the spectrum lack a filter that others have. While we can concentrate on the teacher and block out the air conditioner, the kid behind us with stinky feet, the aroma of food bleeding in from the cafeteria, the sound of the other kid next to us tapping their feet, and the red light flashing on the computer across the room, a child on the spectrum can’t always do that. Think about how distracting this can be when you are trying to learn.

I’d like to share a couple resources that might come in handy for all the teachers, and parents out there.

I’ve found a few apps that I want to draw attention to. The first one is This one includes activities that you can use to help with different skills. Some of the categories include Joint Attention, Imitation, Communication, Independent Skills, Social Skills, Play Skills, Sensory Involvement, and Fine Motor, just to name a few. Each category has some great learning games and activities to help with the corresponding skill.

This one also includes a classroom checklist. The checklist includes:

Activity Specific Classroom Areas
 Clear Visual Boundaries are Evident
 Student Belongings are Labeled
 Classroom Distractions are Limited
 Appropriate Furniture is Used
 Various Schedules are Available
 Visual Supports are in All Areas
 Data System is Organized
 Staff Breaks are Clear and Defined
 Behavior Plans are in Place

Another app is Class Set Up. This one is basically an “E-Z Guide to Setting Up Your Autism Classroom.” This one has some great advice as to what you should and shouldn’t put in a classroom.

Behavior Support App includes a list of apps, books, websites, and other resources that will help with behavior issues in and out of the classroom. You can search by target specific behaviors such as aggressive, has outbursts, runs away all the time, etc. The app then gives you suggestions of how to curve those behaviors.

A book that can really help is “1001 Great Ideas for Teaching and Raising Children with Autism or Asperger’s” by Ellen Notbohm and Veronica Zysk. This includes many activities and games that can help with skills and behavior.

These are just a few things though. I would recommend you check out websites and think about the room layout as well. Hope this helps.

I would like to say congratulations to my wife Jennifer. She was recently named the new special education teacher. I am very proud of her and feel that she is going to be a huge asset to the school and the lives of the students.

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 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

Sunday, August 12, 2012

Like the First Time

As promised I’m going to bring you an update from my first day at the Partners in Policymaking program from Saturday. Let me start by saying that I’m sure this is going to be a great experience. The group of administrators seem like an informative and no-nonsense group that are passionate about their jobs. They are extremely knowledgeable about the subject of disabilities advocacy, and I’m looking forward to the next eight months.
One thing that was interesting was the diverse group that is involved. The students include about 50 percent parents of children with disabilities, about 30 percent where students with disabilities, and a few people who are just interested in helping others. This will help us all understand issues on different levels.
While I don’t remember all of these lessons learned, I will share what I remembered to write down.
One thing that was said was, “You need to be careful of the way people perceive yourself.“ We need to get over the fact that we are parents of someone with a disability and just remember that we are parents. It just happens that our child has a disability. I know this is confusing a little, and hard to do. Erin Taylor, the presenter, was much better at explaining this, but the point was that we all have issues, get over it and help your child with a positive attitude. So when we talk about this we tend to say things among others that could actually be hurtful. For instance, Konner is at a very high-functioning level of autism. However, if I’m talking to other parents about him who have autistic children, when I say that he is “high-functioning” does it mean that their child is “low-functioning” just because they are not as verbal, mobile, or social as Konner? This is a hurtful term to some parents, especially those you have a recent diagnosis.
Be careful of what you say and who you say it to.
You should also be careful of what you say around your child. Many of us are probably guilty of this, though I’m not sure that I’ve ever said anything hurtful, I’m also not sure I haven’t. If you say things out of frustration you sometimes forget that your child is there. Especially when your child is usually quiet. What you need to remember is that regardless of whether your child is verbal or not they do understand what you are saying. Many people forget that our children are extremely intelligent and perceptive. If we talk about how much of a burden they are on our lives that’s not going to be good for their self-esteem. This included talking about taking them to therapy, financial issues, IEP whoas, etc. Just be cautious.
“All parenting is a challenge!” This was a comment by Taylor that hit me. She’s right. This is something that we all tend to forget. If I’m being honest Kruz, my three-year old neurotypical child, presents more of a challenge everyday than Konner does. Konner can have his moments and meltdowns, but Kruz is a non-stop bundle of energy. Taylor explained that she has five children, each day she knows that one of them is going to annoy her; it just depends on the day which one it’s going to be.
I really wish that I could share the information the way it was presented, but it’s going to be hard to get all this information to you.
I know that this is only the first day, but I’ve already learned some things. I just hope that I will be better at sharing the information in the future.

Monday, August 6, 2012

Educate the Masses

This weekend I start something different. It’s a program that I was introduced to by Konner’s
speech therapist, and I’m both excited and a little nervous to begin. Partners in Policymaking is
a program that I was fortunate enough to be accepted into. I hope this will not only make me a
better parent but will help others.
For any of you who remember, this column is called Pervasive Parenting because my goal is to
help others with the things that I learn. This is why I hope to share the information with you as
I get it. I want to let the readers know about things that I feel will help in advocating for your
So, what is Partners in Policymaking you ask? I’m not real certain yet, but I’ll tell you what
I do know. Most of this information comes from the website:
partners_in_policymaking.html. According to the site: This program is designed for adults with
disabilities, parents of children with disabilities who are too young to advocate for themselves,
and advocates for persons with disabilities.
What they do is help to educate participants to work with policymakers, to develop positive
relationships with them, and help prevent the loss of basic rights for people with disabilities.
Once the training is over I should be able to advocate for people with disabilities and help them
receive services and other forms of support. This in turn will help those with special need to be
independent and live better within the community.
The reason I’m so grateful to be in this program, besides the fact that it is beneficial to so many,
is that it is not that easy to get in. You have to fill out an application and go through an interview
process just to be accepted. They only receive 30 participants each year from throughout the
state. I wasn’t sure if I would make it, but I’m truly glad that I did.
Now that I’m in I will go to orientation on Saturday and spend one weekend a month for eight
months in training. While the training goes from September through May, there will be no class
in December. These classes will include some homework assignments. I’m not sure what this
entails yet, but I’m a writer and researcher with many years of school behind me, so I’m not that
worried about it. There will be a major and minor project throughout the training. Again, I’m
not sure about this, but I’ll keep you informed. I will have to participate in effective evaluations,
maintain records of advocacy efforts, and participate in post-training follow-up surveys.
I have said many times in my column that the best thing you can do for your child with special
needs is to educate yourself. So when I was presented with this opportunity I debated over and
over whether I should do it. I’m pretty busy most of the time (but then aren’t we all?), and I
really didn’t want to take anything else on in my life. Then I wrote an article and put those words
down on the screen and said to myself, “Why would you miss this opportunity to help your child
and possibly others?” I’m not sure how much of this information I’m going to be able to share
with you, or how overwhelming the data is going to be to me, but I will try to let you know as
much as I possibly can throughout this experience.
Oh, and the best part is that it is free. What a great deal?
If you are interested in the program you can fill out the application online, or call the Oklahoma
Developmental Disabilities Council (ODDC) office at (405) 521-4984, or 1-800-836-4470 toll-
free, to request an application. Applications are accepted year-round for training that begins in

Speak To Me

Anyone with a special needs child knows that communication is probably the number one issue in helping your child. Without good communication many other problems will arise. The cause of most meltdowns is due to lack of communication. If a child could tell you what is bothering them, or what they need or want they wouldn’t get so upset. The same could be said about social skills. If the child can’t understand what someone else is talking about it makes them feel very uncomfortable.
I saw a post on the Gregory Kistler Center’s facebook page that I thought was very informative. I thought I would share it and give some examples. Some of these things have already been discussed in past articles, but they deserve reexamining.
This is How to Support People with Autism:
·         Explain at every stage what you are about to do, what will happen next and why. We were told early on to use first and next commands with Konner. An example would be if we were going to get dressed we would say, “Konner first we will put on underwear, then we will put on pants, then a shirt…etc.” This is to give them an idea of what is about to happen. Kids with autism don’t really like surprises. This also worked when we went to the dentist. We talked him through the scenario; “First you will go up the ramp, then we will wait in the waiting room, then they will call us back, then the lady will look at your teeth…etc.” This really seems to take the edge off of things. The more detail the better.
·         Give the person enough time to understand the information you are sharing and wait a few seconds for a response if it is not given immediately. Our speech therapist was working with us to see how long it took Konner to answer our questions. I have the biggest issue with this one. When I ask a question I usually expect an answer quickly. It takes a child with autism a little longer to process the information. This is especially true if they don’t fully understand what is asked. It’s best if you slow down, think about what you are asking, and wait patiently for the answer.
·         Questions should be clear and direct using language that is easy to understand and pictures where necessary – do not rely on the person to pick up on the meaning of your questions or body language. My wife and I have been watching The Big Bang Theory quite a bit lately and if you are familiar with this show there is a character named Sheldon. While they don’t come out and say that he is autistic all the signs are there. One of the major issues he has is the lack of ability to pick up on social cues. Some of these include body language, sarcasm, emotions, and facial expressions. One of the things we’ve really struggled with is trying to help Konner understand how to react when someone is hurt or sad.
·         People with autism might take what you say literally so avoid words with a double meaning and humor that could be misunderstood. Out language is colorful with many metaphors, similes, homophones, and cliché’s that many of us neurotypical people can’t fully grasp. What do you think it is like for someone who can’t sort out the literal from the jovial? Again, I’m one of the first to admit that I have a hard time with this one. I am very sarcastic. This is something that is lost on Konner. It’s hard for me to sometimes try bringing things to a language that he can understand better.
·         Maintain a routine – familiarity is often important to some people with autism. This is something I stress all the time. We are all creatures of habit. This is especially true for autistic children. Keep things as close to normal as possible, but it is good for them every once in a while to change things up. If you don’t then they will never learn how to deal with change in life.
·         Social difficulties may include lack of eye contact and unusual body language, talking at inappropriate moments or about inappropriate topics. I can’t explain to Konner that it is rude to talk when others are talking. If he has something to say he wants to tell you now and not wait for your conversation with someone else to be over. The eye contact is typical and should be worked on, but I wouldn’t stress too much over this. You have to remember that this is often described as painful for them.
·         Repetitive behaviors might be a coping mechanism and therefore should be respected. Some of these include routine, but all could be rocking, tapping, repetitive talking, etc. These are commonly known as stims and help to relieve anxiety. You will usually notice these when a child is over stimulated.
·         The environment is important – some people with autism are particularly sensitive to light, movement, sounds, smell and touch. Try to keep the immediate environment as calm as possible to help alleviate any anxiety. Don’t forget to check the surroundings if a child is getting upset. Notice if there is something that may bother them. Florescent lights can cause problems because even if we don’t see it there is flickering that can be amplified for a child with heightened senses.
·         Always consider the person’s behavior in terms of his or her autism, even if it becomes challenging. We had a discussion about this in our recent Parents of Autism meeting. We can’t determine sometimes whether a child does something because of their autism or because it is typical of a child their age. I think most will lean toward the autism side, and according to this that is not a bad thing.
·         Ask the person and/or parent, carer or advocate what support they might need.  It’s always best to ask the person. If they are non-verbal then this could be more difficult, but with Konner I always tend to ask him if there is something wrong, or if he needs something, and most of the time he will tell me what it is.
I hope some of this helps.
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 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.

Applied Science

Konner is a wiz with computers. This is something we learned at a very young age. We got him an iPod when he took over my iPhone a couple years ago. He learned how to look up his favorite programs and watch them on The problem is that the things on youtube are not always the best things for children. Why people will make a child’s program like Thomas the Train into something inappropriate for children on a free forum such as youtube is beyond me.
But I digress.
He recently received an iPad. Now I know what some of you might say, “You’re spoiling that child.”
Maybe, but we are also thinking about ways to help him with his many therapies. This is one of the
reasons we purchased the iPad for him. He was using one with his speech therapist and was doing very well with it.
I recently watched a segment on 60 Minutes telling about a 27 year-old man with autism used the iPad to communicate more efficiently with his mother. He was non-verbal and had used a laminated page full of letters to tell her what he was thinking throughout the years. The iPad and an app the family had found changed their way of communicating.
So, I am often asked what about some of the best apps for the iPad, iPhone, or iPod. While there
are several apps that we have used I want to talk specifically about one that every parent of a child
with autism needs to know about. Many may already know about it, but the Autism Apps app is very
informative and useful.
First of all it is easy to use, and has so many good apps to look through that it would take a long time just to go through the entire app. That doesn’t mean that it is hard to navigate though. You can find what you are looking for very easily.
According to the app: “Autism apps was created as a resource for anyone looking for apps for people
diagnosed with an autism spectrum disorder, Down syndrome or other special need. Many people are
discovering the many uses that iPads, iPhones and iPod touches can have as tools and resources for
people diagnosed with an autism spectrum disorder…though there are a multitude of apps in the app
store that many people diagnosed with (special needs) use and enjoy, they can be difficult to find.” This is why the creators developed this app.
The home screen brings you to several links you can click on. The first is the Featured button that will take you to all of the most used or more interesting apps out on the market. The next is a New button that will take you to all of the latest apps available. The Search button is self-explanatory, but allows you to search for specific areas that you may need. If you’re not sure which areas you need the next button is a Categories link. This one allows you to check out anything from alphabet apps, behavior and social skills, books, colors, communication, creative play, fine motor and writing skills, IEP, numbers, professionals, social stories, sensory, and speech to visual timers and schedules. If you need it it’s probably in this app. If you know an app and can’t find it on the Autism App you can use the Tell Us About an App button to help others.
Once you find an app that you might be interested in you can click on it and find information to help you make an informed decision about whether you download it or not. The links include price, a five-star rating system, a detailed explanation of the app and how it works, reviews from credible autism sites, and categories. Once you decide you want the app there is even a link to download it, or with a click you can email it to a friend.
The best part is that this app is free.
Many of these apps can be expensive. The particular app that the man on 60 Minutes used is almost
$200. However, when you realize that it has helped him to communicate with his mother in a way that he has never been able to before it is priceless. The good part is that most apps have a “lite” version, which is free version without all the bells and whistles, but you can at least get an idea of whether it will be useful before you shell out the money for it.

The Fishing Hole

Growing up I had many great male role models. I’ve talked in the past about my dad’s influence
on my parenting skills. I haven’t touched on my two grandfathers; they both were extremely
influential in my life, and showed me what it means to love unconditionally and take care of
your family. There was another great male role model in my life though. He was a guy that was
there for me every day, if I wanted him, and he taught me many life lessons. The man was Andy
Taylor; the character portrayed by Andy Griffith on screen for years and will live on forever
through reruns.
When I learned about Griffith’s passing this week I felt almost like I lost a family member. I
know this may sound silly, but to many of you I’ll bet you can relate. He was as much a part
of our family as anybody because I grew up watching is show. It seems like we were always
watching some crazy antic that the Sheriff and his zany deputy had going on.
Some of you may say, “What does this have to do with Autism?” Well, this is called Pervasive
Parenting and I would dare say that Taylor and his small-town values taught me many life
lessons that I try to incorporate in my parenting skills. Let me give you an example of just a few.
One lesson I learned is that, whenever your children mess up, make it a teaching moment. I try to
do this, although at times I am so frustrated that I forget this. I usually end up back-tracking and
try to set down with my boys and explain why I was so upset with their choices. I try to let them
know the bad choice that they made and what they should have done. We also try to talk about
what they should do now to make it right; much the same way Sheriff Taylor did with Opie.
Another lesson is that honesty is the best policy. This is one that even Andy had trouble with. He
tended to tell white lies, but in the end he was teaching that the right thing to do is tell the truth.
This is something that I have talked to my boys about. I think if you let them know that it is okay
to tell the truth no matter what they did at a young age then it will help when they are older. It’s
not a perfect science, but it is the right thing no matter how you look at it.
A very important thing to learn is that you have to laugh at your mistakes. Nobody’s perfect.
To quote an old cliché, children don’t come with a manual. If they did most dads would throw
it in a junk drawer anyway so it wouldn’t matter. You are going to mess up with your children.
You are going to say and do things that you regret. You are going to look like a fool sometimes.
You need to just laugh about the dumb thing you did, fix the mistake, and move on. I remember
one episode when Andy got so upset with Opie because he wanted to spend his money on his
girlfriend instead of give it to charity. In the end the girl really needed to money so it worked out.
Andy had to laugh about the fact that he didn’t trust his son to do the right thing, but because of
the way he had raised him he made the right decision on his own.
One lesson I don’t know anything about, but feel like many could learn is that it’s hard to be
single parent. Now he had Aunt Bea, but he still struggled with this. If a man working hard to
keep a small town safe and clean up after his bumbling friend/deputy can do it…well, again I
don’t know much about this one. This is where I say thank you to my wife: Thanks Jen.
I think one of the biggest lessons learned from every episode is tolerance. Andy had a whole
slew of crazy characters that made his life interesting. This is not unlike our lives. We all have
family and friends that add drama and fun to our lives. Our children with special needs add
enough drama and fun. We have to be tolerant of the things God has given us and learn our own
life lessons. Just like any episode of the Andy Griffith Show things will work out in the end.
I’m in no way Andy Taylor. I don’t have the patience, tolerance, and smooth delivery to save the
ship when it’s going down every week. However, things could always be worse. I think if we all
had more role models like Andy Taylor the world would be better. Rest in peace Mr. Griffith,
and thank you!
P.S. the title of the article is the actual title to the show’s theme song (The Fishing Hole).