Sunday, April 29, 2012

Change the World

I’ve been watching a lot of videos and reading many blogs lately to try and help understand what Konner might be going through. As a society, almost an underground society it seems (I’m speaking of the autism world in general) we think we know what is best for our children. We work really hard to make them the best that they can be. This is why we spend so much time with therapies, trinkets and toys, apps, and conferences to give our children what they need to survive in a fast-paced world. This is a world that is usually unforgiving to people who are not made out of the same cookie-cutter format that we see on television, magazines, and sadly enough occasionally our own minds.

Sometimes, however, I wonder if we’re trying too hard to make them “normal” or if we really just want them to have the best things they can with the hands they’ve been dealt. Those hands aren’t always bad. Since we’re using poker analogies; it would be like having an ace in hand, but losing to a pair of twos. You may be good at sports, but later in life when that stuff doesn’t matter, the man with a better retention of facts is going to be more useful in the “real world”. I’m not sure if I made that more clear, or just confused everyone more.

The thing that I’ve noticed most in these interviews with children and teens on the spectrum is that they don’t want to be changed. I was watching a video at that I highly recommend. The film was by a teen with Asperger’s Syndrome. The main thing I noticed was that the children said they wouldn’t trade their differences for the world. They don’t want to be changed, just accepted.

Konner is one of the greatest things to ever happen to me. I wouldn’t change him for the world. He has made me a better person, and because of his autism I am becoming better every day. I’ve shared some of this with you in the past, but he makes me more patient (not that I’m where I should be yet). I have to be patient. There’s no compromise sometimes. That pushes me into frustration more times in a week than I can count, but at the end of the day, I still have to be patient and try to figure out what the problem is.

He has made me be more forgiving of others. I understand tribulations that other parents may be going through. Now when I see a child in a grocery store or restaurant scream I just smile. I truly do, because I have no idea what is wrong with that child, but I know that even if they really are just brats it is something that you have to deal with and go on.  I don’t judge because I don’t know.

I was thinking the other night about heaven. This may be something that some of you will think it odd, wrong, or just weird, but I was wondering what people with disabilities are like in heaven. Are they “normal” in the way that we see things here on earth? Will a child with Downs Syndrome still have Downs in heaven? If not will we recognize them? Then I wondered what Konner would be like. Will he still have the issues that he has on earth? As I pondered this I began to think…I hope not. I hope he’s just the same. I don’t want him to have the pain that goes along with the neurological side of autism. However, I love all the little quirks that make him Konner. For that matter, I hope he never changes.

I’m sure that I’m going to ruffle a few feathers with this one, but I’m hoping that I will open some eyes. These children, and adults, are who they are. They wouldn’t change if they could. Why should we. This is what defines them as people. They don’t need to change. They just need understanding, help, and guidance. We as a society are who need to change our ways of thinking.

Sunday, April 22, 2012

I'm Here For The Party

In the recent weeks we’ve be fortunate to have attended two great birthday parties. Any parent of a child on the spectrum knows what this can mean. It’s a bitter-sweet feeling. You are happy that your child was invited to the party. That means that they are either fitting in, or some parent is making an effort not to exclude them. Either way this is a great thing. The other part of this is that you never know what is going to happen at the party. Is my child going to ruin everything with a sudden outburst, meltdown, or reaction? Will he ever be invited back to another party?

The first thing you have to do is focus on the fact that your child has been invited to a party. That means someone has taken the time to include your kid in their birthday celebration. There is nothing better for a child with autism than interaction with their peers. I’ve hit on this in the past, but it is a great thing to have kids that may or may not understand your child’s issues, but do accept that he is different. We’ve been blessed with a great bunch of classmates for Konner. They seem to make an effort to include Konner in everything and for that Jen and I appreciate them.

Part of this may be because we’ve explained to many of them from a young age what issues Konner has, and what they can do to help. He’s been with many of these kids since head start, so that helps as well.

The first party we attended was Konner’s own. Okay, so he had to attend this one, but he invited many of his friends. Most of them showed up. We asked him where he wanted to go and who he wanted to invite. He decided on Burger King and so we booked it. By the way, if your child was not invited I’m sorry. He made the list and probably just forgot. We also didn’t want him to be overwhelmed.

This was a pretty good idea because the kids just spent most of the time in the “tubes” and played well together. This party went off without a hitch really. I have no real stories to share. This may sound boring, but if you have a party, for an autistic child, and there are no issues this is a good thing. We have evolved so much from when he was three and we decided on Chuck E. Cheese. That turned out to be a horrible idea. When he was two we had a packed house and he had a meltdown and ended up crashing out in his room. However, every year it gets better.

The second party was at his friend Jaxon’s house. He was excited to attend and off we went on the rainy Sunday afternoon. The hostess was great and had everything planned out including games to keep them busy. This was especially good because of the weather. All of the children ran to the door when Konner came and ushered him into the house. This was a great feeling for me. I felt like they all seemed to want him there. I know that sounds silly to some, but you get a feeling sometimes that kids just tolerate your child because they’ve been told to; or that they are coddling him because they know he’s different. However, when the other kids arrived they all rushed to the door to meet them as well. This is a good thing because they didn’t treat Konner any differently. This is what you want to see as a parent. You want to see that your child is an equal and not a burden or outcast.

That’s not to say that he wasn’t different at the party. He has some things that he did that were different from the other children, but they all seemed to just go along with it or ignore it. He was louder than most there, and would jump around and scream. He began to go into his pace march halfway through the party, but it was quickly halted by another game, or ice cream and cake. He also pretended to be a balloon (something that he reminded me as he is reading this over my shoulder). He hid under the table at one point which caused the others to want to join. When the other kids decided to sing karaoke he grabbed the microphone and screamed really loud instead of singing, but the others seemed to get a kick out of this.

When the group decided to have a “freeze dance” none of the other children wanted to dance. They were all too shy to dance around their classmates. Not Konner, he flopped and shook and jumped around like nobody was watching. “I died next,” said Konner (again reading over my shoulder. He’s helping me write today). This means that he fell to the floor motionless as the song stopped.

All in all he did a great job. I was proud of the way he acted and the way the other children accepted him as one of their own. This is not always the case. I know this, and know, again, that we have been blessed with a great bunch of friends for Konner.

I want to say thank you to the parents and children for being so supportive of him. It means a lot to me and Jennifer.

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, April 15, 2012

Be Aware

Most of you already know that April is Autism Awareness Month, and April 2 was National Autism Awareness Day. As I’ve said in the past, everyday is Autism Awareness Day in our house. However, recent events in the media have shown that it’s more prevalent in many households now. This means that the word awareness may need to be changed to acceptance.  

A report released last week by the Center for Disease Control states that the number of children diagnosed with autism has increased dramatically in the past two years. The past figures have shown that 1 in 110 children were recognized as being autistic. The new numbers show a nearly 25 percent increase to 1 in 88. The report also shows that 1 in 54 boys are diagnosed and 1 in 252 girls. That equals more than a million children affected directly.

Let’s put this into perspective. According to Autism Speaks there are more children affected by autism than by diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome – combined. By no means am I down playing any of these other issues, I’m simply trying to spread light on the issue.

So the question I always get is, “Are they being diagnosed more now, or are the numbers really increasing?” In my opinion it’s both.

Let’s look at some more statistics. Autism Society reported that 40 percent of Americans know someone with autism. This equals approximately 760,000 people in Oklahoma alone. So the awareness of autism is more widespread. We are reaching the masses by letting them know about what autism is and what you can do to help children with autism.

However, there is also an increase of children with the disorder. When I speak to student that I work with I always ask if anyone knows someone with autism. Usually at least a third of the room has a relative, friend, or neighbor who has autism. They are directly affected by the disorder because someone close to them has been diagnosed.

I remember when I was in school there were not that many students with autism - at least we didn’t know if they were. If I look back I can only think of only one student who would have been considered autistic.  Now days there are usually one or two students. This is causing major issues with our teachers and administration.

Of course the other side of this is that there are better ways of diagnosing children these days. More things go under the umbrella of autism. We are also getting diagnosis at a younger age now. All of these things are factors in the increasing numbers.

The bottom line though is that this is no longer just an issue that affects a few people, the family down the street, or a distant relative. It’s now considered an epidemic. This means there has to be something done on national and state levels to help in many ways. It’s not just about awareness anymore. We are aware. Now we need to be actively pursuing reasons behind the cause. We need to work with legislators to find ways to help those with autism gain more benefits. These children will grow up to be adults and need care or advocacy to help them enter the working world. They need therapies to get them to that point. The numbers are only going to continue to rise if we don’t find a cause and a solution.

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, April 8, 2012

Theater of the Mind

We don’t go out much. In fact, if I’m being honest, I don’t like to go out much because the uncertainty of autism is always lurking in the shadows. I never know if it’s going to be a good experience or if we’re just going to sit down for a couple minutes and have to leave. I probably shouldn’t be this way, but I think most parents of autistic children probably think the same way.

However, my wife is ever the optimist, and thank goodness for the children she is because otherwise we probably wouldn’t get to go anywhere.

This week was an exception. We made two eventful shows this and had some good experiences. I’d like to share them with you.

Tuesday night we went to Fort Smith to catch the production of Sesame Street Live. Konner’s never been a huge Sesame Street fan, but Kruz tends to like Elmo and the gang. A few months back we purchased the tickets, so Tuesday night there we were waiting for the show.

My first thought was, “I wonder how long this will last?” The answer was... until intermission. This was not Konner’s fault though. In fact, Konner did pretty well.

When the lights went out and the music started the first thing he did was cover his ears. This was normal thanks to the fairly high volume in the center. They stayed that way for most of the show, but he was still smiling and singing along, so we were good.

We also got lucky because there was nobody in the seat in front of him. He was free to kick and shake and could see the show just fine. I did try to keep him from kicking even though there was no one there just to let him know that it was not a good thing to do.

The reason we left early is because Kruz was ready to go. Intermission came, and we took off.

In all, Konner seemed to enjoy himself, and besides a few issues with opening doors for himself we had a good time.

Saturday night, thanks to the good people at the Gregory Kistler Treatment Center, we got free tickets to the Northwest Arkansas Ballet’s performance of The Wizard of Oz.  Jen thought it was a good idea, and I’ve never been to a ballet in person so I was actually looking forward to going – somewhat.

When we sat down, in nearly the same seats as we had on Tuesday night because it was the same facility, my first thought was, “Oh no, there is someone in front of him.”

However, Jen took him in her lap and pulled his legs up so that he wouldn’t kick them. There were several children in attendance, which I thought was a good thing because I figured other parents would understand if he was a little loud.

The first thing I noticed was that everyone was quiet, for the most part. Konner didn’t understand the concept of not talking, both on the stage and off. At one point he asked, “Do they talk?” This got a giggle from the man sitting in front of me. He did catch on though, and after a few minutes he was doing pretty well. This is probably because he has seen the movie several times and knows it by heart.

He was full of questions though.

Now, I’m not sure if it’s just Konner, or most children on the spectrum, but most times he has no volume on his voice. It’s either loud, or nothing. So when he asked where the yellow brick road was to begin the ballet, the people a few rows ahead of us chuckled a little. This trend continued throughout the show with Jen giving quiet answers in his ear, usually preceded by a “shhhhh”. This didn’t bother me or Jen too much, he was just giving a play-by-play of what was going on up on stage. I actually enjoyed this a little because, I’ve got to be honest, I kind of got lost in spots.

He also covered his ears when people clapped. Then he wanted Mom to cover his ears. Then he covered his ears and clapped at the same time.

We went out at intermission and had some issues with bathroom, but for the most part he was fine.

When we got back in and the lights went out I noticed that the elderly group in front of us had not returned. Now, I’m not sure if it had anything to do with Konner’s banter, but to be honest (and not at all trying to be rude) I don’t really care. Konner was enjoying the show and being good, and that was all that really mattered.

In all it was a really good night. We all seemed to enjoy ourselves (we even took his cousin Aiden with us and had ice cream afterward), and he really was pretty good.

There is not really lesson to this one other than the fact that; you should take your children out every once in a while to experience things despite your apprehension. They may just surprise you, and it will do them good.

As a side note: Don’t forget it’s Autism Awareness month. Make sure you do your part to spread the knowledge.

There will be a Parents of Autism meeting on Thursday, April 5 at Carl Albert State College with a guest speaker from Project Peak. She will be taking questions from the parents. The meeting begins at 6 p.m. and is in the F. L. Holton Business Center Theater.

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.