Understanding Where This Came From

I speak to groups about a variety of topics.

Sometimes I am asked to speak about sports marketing, the team I work for, our upcoming season or just our industry. Sometimes I speak about autism awareness.

I prefer to speak about autism.

When I was in fifth grade, I started a variety of testing. I remember going to hospital after hospital, therapist after therapist.

I was diagnosed with dyslexia, then ADD, and a few other things that I can't remember. Since I don't see words backwards, I was pretty sure that I wasn't dyslexic. ADD? yhea, I have that. What was I talking about again? Just kidding.

As I have mentioned in previous posts, my boys are a lot like me when I was a child. Everything they do reminds me of me.

Where did this come from? Why are my boys on the spectrum? Turns out, it was a diagnosis that I was never told about. I am on the spectrum. Now, everything makes sense.

I see things in pictures - to me, that's normal. Don't you see things like that? No - you don't.

I remember obscure dates and places. I see them in pictures clearly as if they happened yesterday.

I remember having a conversation with my father in his bedroom when I was only 3. I remember a conversation with my mom in our living room when I was 5. Clearly - word for word, and I can see it.

I am obsessed with my profession. Being in professional sports is hard on a family, so a few years ago, I got out. That lasted about six months. I was obsessed with getting back into sports - couldn't stop thinking about it, and did everything I could to get a job.

I work day and night. I live, eat and breathe my job. I am obsessed with sports marketing, and have been since I was.........seven.

I am blessed that I can remember these events in my life. I am blessed with a memory that can recall stats at the drop of a hat. It is also a bit of a curse.

There is so much more.

When you think about the weekend, I see "tall buildings," I don't know why, but this became real for me when Chandler told me that he sees tall buildings when we talk about weekends.

When we watched Temple Grandin together, during the scenes when she "sees" things, Chandler explains to me that he sees the world that way. I didn't say anything, but so do I.

So Chan and Spencer, you are not alone. I made it through this, and so will you.

I have made the decision to seek therapy for the little things that I do which are caused by the disorder - I am obsessive compulsive about a number of things, and that needs some help. There are a few others too, and with this new information I will have the opportunity to correct some of my.......quirks.

This new information will not change who I am. I am a father of who has wonderful sons and daughters. I am a husband who loves his wife (another obsession -- don't think that has anything to do with autism). I am a person who cares deeply about autism awarness, and making sure that not only my children - but all children have an opportunity to have success in life away from home.

Chan and Spencer were given to me for a number of reasons. A diagnosis of my own is only one of them.

I thank them every day for the gifts they give me. I can't wait until we are reunited in Ohio.

Cory Howerton

Transitions

We're moving.

Change is not good.

As we prepare to take our boys out of their schools and a place where they get fantastic services, I think a lot about how this is going to affect them short term.

About ten months ago, I left a job I hated to start my own company, and recently on a referral from one of my clients, I was offered an opportunity to pursue a dream - so I took it.

We are moving to a real city, with larger buildings, and things to do. A city with major league teams and summer activities that are not centered around corn.

I firmly believe that the boys are going to love the move, once we get there and get settled. I know that when they start school again next year, while it will be different, they will do fine. Making friends is always hard, but doing so when you are autistic is going to be a challenge - but as with everything else we do, we will get through it.

These boys are hard. Being a parent of one autistic son is difficult enough, but two is un-real.

FIRST DAYS
When I speak to groups of autistic parents, especially those who have just found out that their child is on the autism spectrum, we talk about the "first day."

Your life changes when you get the diagnosis. In essence, it starts over. The first day is the hardest, and while it seems like it doesn't get any easier, it will. At least in most cases.

I meet people all the time that are having a difficult time with their autistic child. Sometimes the behavior is so out of control that parents need help from doctors, local agencies or other resources that are available - including medication.

Remember that you are their voice - you are their advocate - you are the person that loves them. Fight for them, and when you are tired - fight some more. Call the doctors a hundred times, and never give up. They are counting on you and if they will ever have a chance to be independent as an adult, you must fight for them now.

They analyze everything in a different way. We will never fully understand the challenges they face each day. But we must be strong, even in difficult times, and it will be difficult.

Some people will shun you. You might lose some friends. Nothing changes the fact that you are a great parent, with an amazing gift of a child. Never lose sight of that.

NEXT: Interesting interpretations of a young autistic child.

I didn't ask for this

I didn't ask for this.

I didn't ask to be a father of two Autistic Boys, and three little girls that don't understand why their brothers act the way they do.

I didn't ask to be the father of a talented athlete who has become an amazing goalkeeper, but that I can't put on a team because he can't emotionally handle the ups and downs of a sporting event without an emotional outburst.

I didn't ask for a three year old who is up every night from 3-4:30, and I certainly didn't ask for that as our quality time.

I didn't ask for any of this, but I wouldn't change it. These two young boys were sent to me for a reason, and no matter how busy I get, or what path life takes me, they have become my cause. Rather than saying why me - I said "how can we fix this?"

Where the divorce rate of parents who have an autistic child is extremely high, it is a unifying cause for our family.

As parents we don't choose this - it chose us. Fight the fight, because you are the only one who will for your child. Nobody else has your child's best interest in mind other than you - speak loud, get involved and chose to fight.

I didn't ask for this. I'm just going to beat it.

Temple Grandin

I had the opportunity two weeks ago to watch the HBO movie Temple Grandin, based on the life of an autistic woman who was diagnosed with the disorder in the 1960's, when it was more popular to institutionalize these children then intervene.

I had the honor of watching this movie with my son Chandler- who, throughout the movie made statements like, "Daddy, that's how I feel," or "that's how I see things."

It was a true learning experience for our family. I encourage anyone who has a child on the spectrum to watch this great movie. It is inspiring and educational.

Recently Temple visited with the people at PSU, and this interview is amazing. It is lengthy, but I couldn't turn it off. It really offers insight from someone who can articulate what having this disorder is like.

It can be found here: http://conversations.psu.edu/episodes/temple_grandin

I would recommend sharing this with anyone who is not educated about the Spectrum - or parents who are just starting on this journey.

Away From Home

I travel a lot for business, so whenever possible, I like them to join me on various trips. This weekend, we were fortunate enough to only be two hours from home, and they kids are out of school on Monday - so we made it a family weekend in a Chicago suburb.

It was a tough weekend.

It seemed that Chandler had a meltdown at every turn and Spencer decided to join him.

On any given day, one of them might be frustrated, upset, or melting down. Rarely do we have the pleasure of both of them doing it at the same time, let alone all weekend.

My wife reminded me a number of times this weekend that we live in their world. This is something I talk about a lot, but when you're in the moment, it's hard to remember.

What I found most frustrating was when there was an issue - and there were many - we were able to provide solutions to the problem that make perfect sense to you and I. But simply stating the solution to an autistic child is sometimes useless. I found that when they were rejecting the solutions, I was getting frustrated - no mad - because they would not listen to reason.

I need to be more patient. It is only through patience and understanding that I will truly be a good father to these amazing boys. I learned something this weekend, even if it was frustrating and even maddening. I am grateful for the lessons learned during a long weekend away from home.

Cory Howerton

Progress Not Perfection

It's never going to be perfect.

As a profession, I consult major and minor league sports teams on a variety of disciplines - ticket and sponsorship sales, game operations, staffing, etc.

I was in a meeting last week with one client and we were talking about game operations and the mistakes that are made throughout a two and a half hour block of time, where there are many variables to the "show". It's not like a Disney show, or another traveling performance that does the same thing, night in and night out for 150 dates in 60 different cities. The professional sports experience - if it's a good one - changes from game to game, and every night there is a mistake made.

The key to a successful event is - do the fans notice?

I shared with this team that there would never be a "perfect show". It might be as simple as a member of the dance teams misses a step, or something as dramatic as a microphone not working or the lights not coming back on after introductions.

The idea is to make progress every night- the next show is better than the last, we learn from our experiences and build upon them for success.

The same goes for my two boys.

I mentioned in my previous post that I felt the teachers were holding Chandler back. They were giving him milestones to hit, and when he would accomplish those goals, he would not be met with reward, but rather more objectives.

During subsequent conversations with the school staff, they conveyed to me that they were looking for Chandler to accomplish these tasks perfectly (or close to it), and he was not meeting those expectations, and thus they were slowing his integration.

There are many problems with this stance, but the most important thing to note here is none of the issues were academic, but rather they were more about social interaction.

Chandler does much better in social situations when he is around children who are well behaved. He tends to follow before he leads, so when he sees bad behavior, he emulates it. When others are being good, he follows suit there too.

Since he was not being integrated, he continued to emulate the behavior of the other kids in the B.D. room. One time, another kid hit Chandler, and when Chandler responded in kind, he was punished, and he could not understand why.

I shared with them that with children on the Autism spectrum, we needed to strive for progress every day, but to never expect perfection. Chandler is and emotional but driven young man. He wants more than anything to be integrated full time into his general education classroom, and he doesn't feel like he is getting a chance.

With Autistic children, if you give them a goal and they achieve it - you MUST then give them the promised reward, or they feel as if they had failed in some way.

I am not an educator, but I am an expert in Chandler. I know that he is making progress every day - but that if I expect perfection, and try to make Chandler live up to that standard, ultimately we will be disappointed.

I also think it's important to share that while in first grade, we successfully integrated Chandler into his general education classroom for 90% of the day, but because of his IEP, he was required to start this school year in the behavioral disorder room. We were promised this transition would take only two weeks, and it's now January, and we still struggle with getting him time with his regular teacher.

As a lesson, when you have your IEP review at the end of the school year, think ahead. Think about the progress you have made with your child and how that will impact the following school year.

More importantly - celebrate the progress, each and every day. We are taking little steps, but they are steps, and I am a better Father because I live in Chandler and Spencers world.

Cory Howerton

Don't get pushed around

This note is for any parent of an autistic child who meets with the child's school regularly.

We meet with our sons school on a regular basis. Unfortunately most of the meetings are at our request, and they are to hold the teachers and administrators accountable for the education of my son. If you are an administrator or teacher -please just do what you say you are going to do and then parents like me won't get involved.

It started with an IEP meeting at the beginning of the school year. It was important to us that Chandler continue his integration into his general education classroom (a process that we started last year,and he did very well with).

We were told that because he had an IEP that he could not begin the year in his general education class and that we would have a plan within the first 20 days of school to begin integration.

20 days came, and went. 30 days came and went. 45 days then came and went. Time after time we were told that he had to meet specific standards to begin integration. The problem with that is, every time he hit those milestones, they put more obstacles in his way. We called another meeting where we wanted to comb through his IEP thoroughly.

When my wife brought out the document, a teacher quickly grabbed it from her (there were five members of the staff involved in this meeting), and said; "we only need to concentrate on page 35 that is the important page."

Strange, I thought the whole document was important.

At this meeting, I demanded that we have a plan and timeline in place to integrate him into his classroom. We came up with a plan, I asked for a weekly progress report to be emailed to me (this was in December, and I have yet to receive one), and that integration was to become more frequent as time goes on.

Over the next few days, Chandler came home to tell me that his teachers were telling how much more difficult it was going to be in his general education classroom, and that he would frequently become frustrated.

Of course he was already nervous. Because of the time that was wasted in not transitioning him, friendships have already been made, kids know who they play with at recess and who they eat lunch with. He knows it's going to be a challenge - and they are not helping.

Turns out, the school benefits financially if he stays in the B.D. program - and as much as I would hate to believe that their incompetence is drive by money, I can't believe that any one group of people are that careless or stupid to hold a child back when every therapist in his life (and there are many) are telling us that he needs to integrate.

Another meeting tomorrow and Friday.

Bottom line - stand up for your child, be their advocate - you are all they have. If the school doesn't listen - speak louder - get an IEP advocate, do everything in your power. We owe it to them.

Cory Howerton

Emotions

I don't know how to deal with them. The new emotional outbursts that Chandler has when he gets frustrated and decides to just cry and cry.

As Father, you want to fix the problem. No matter the issue, when I get down on Chandler's level and try to talk to him about whatever the issue is - he now refuses to talk about it, instead he decides to continue crying and letting out all of this raw emotion. It's taking a toll.

It's hard to go in public with such unpredictable behavior. When these things happen at the mall or at a restaurant, other people don't understand, and they assume that my wife and I are just bad parents.

Honestly, I have stopped caring what other people think. I figure if we all live in Chandler's world, instead of him living in ours - those people can take a hike.

What I do know is Chandler's feelings - justifiable or not - are real. His emotion is real, and I need to find a way to both cope and help him better. So far, I'm failing at both.

Cory Howerton

Weekends

Weekends can be tough.

In a world filled with total structure like autistic children need, Saturday and Sunday take them completely out of the regular school day routine they are used to.

Anytime we have a transition, there are challenges. Chandler was very emotional this weekend, crying at times that would not necessarily be appropriate to cry for a child. His feelings were hurt easily and that can at times disrupt our home - and frustrate a Dad who just wants to help and understand.

Spencer showed me he has anger issues now - this is relatively new for him. At one point he was going to "hit me" if I didn't put his newest obsession - Star Trek - into the DVD Player.

I learn something new every day - and this journey has just begun. The thing that we need to be most mindful of is not to reverse discriminate against any of the kids.

What do I mean by that?

We spend so much time trying to cater to and figure the boys out, that at times, the girls accomplishments become commonplace. At the same time, we need to recognize that when the girls accomplish something that they boys have not yet - it's ok to praise them, but we must strike the balance to not hurt the feelings of the boys.

We have five great kids. This weekend was spent together, playing and learning. What a blessing they all are. Even in the tough times.

Cory Howerton

Obsession

We are all passionate about something. Some might even call you obsessed over whatever that "thing" is for you personally.

One of the natural "side effects" of having children on the Autism spectrum, specifically with Aspergers is that sometimes they become fantastic doctors, lawyers, astronauts or teachers. They focus on one thing their entire life and become great at it. They study it day and night, they can't get enough of it and just when you think that is all they can know - there is more.

As a child, the focus is usually a little more broad. Kids enjoy playing a variety of different games, and their imagination takes them to some amazing places.

Chandler and Spencer are both different, but we notice a lot of the same characteristics in Spencer that we saw in Chandler when he was little (which was the primary reason that we were able to get Spencer early intervention).

Power Rangers

Currently, Spencer's focus is Power Rangers. Chandler went through a Power Ranger obsession when he was about Spencer's age, and we had to buy every single Power Ranger toy and movie available (should of held on to that stuff).

This morning, I walked into Spencer's room and noticed that he was playing with every Power Ranger he had. The interesting part of his play was that he had lined each of them up by type of Ranger and then color. Don't attempt to move one of the Rangers out of place, it will destroy our whole day. You see, Obsessive Compulsiveness is a part of the disorder.

Chandler has become attached to Star Wars and soccer. He has also become very good at Math - and that has become his primary focus in school. The problem with that is, of course, other areas of study have suffered, and we work hard every day to try to keep him on track to move to the next grade.

I have learned that their obsession is their passion. That while it is not always the perfect situation that we have to learn to cater to whatever the current obsession is, allow them to embrace it - and hopefully there is some value to it. Spencer - once a child who was recessing and not speaking, now can engage in a month long conversation about the Red Ranger, his real name and favorite hobby.

Allowing him to focus on his obsession has helped him formulate complicated thoughts and free play scenarios.

One of the things that I have had to learn through all of this is pretty simple. I live in their world, they don't live in ours. They see things completely different. Their level of focus on specific items or tasks might not align with the rest of the world. That's OK - it has taken me almost 8 years to figure this out, but our lives are so much easier now because of it.

While we have to consistently adapt to the needs of the boys, I know that they will be better off because we do. And, I have even learned to like Power Rangers - even if I have seen every movie 1,000 times (a conservative estimate).

Sincerely,

Cory Howerton
Father of Five
Two On The Autism Spectrum

Great Night Of Fundraising

One of the things that I have been able to do is tie my professional life to my Autism fight.

Last July, with the help of a local minor league baseball team, I was able to raise over $2,000 for Autism awareness in the Quad Cities. Last week, we duplicated that effort with a client of mine - the Rockford Rampage of the MISL.

Fans flocked to the bidding tables to win the special Autism awareness jerseys that the team wore, but I had something happen that night that showed the real reason for the fundraiser.

As the team came back on to the field after half time, they throw frisbees into the stand, courtesy of a local sponsor. One of the players picked my son out of the crowd and attempted to throw one to my son - it didn't quite get to him, and another person got it.

Chandler was devistated, and began to have a meltdown in the arena. The player went to the bench, got a soccer ball, and came back to give it to Chandler. This changed the tone of the evening to say the least.

I then had to bid on this players jersey - and we won it. Chandler wears it everywhere and loves to show off the ball, in which the player signed "to Chandler, my best fan."

Following the game, all of the jersey winners got to take the shirt right off the players back on the field. This player spent ten minutes talking with Chandler - he will never fully understand the impact he made on the life of a young autistic boy.

We have our challenges - but I would not have it any other way. I am the proud father of two Autistic boys, and they were sent to me for a reason. While the days may seem long, the journey is an incredible learning experience and I am so grateful for what they teach me.

What Is Autism?

As I begin this journey to document what happens in our daily lives, I thought it was important to answer the question that I get almost every day, "What is Autism?"

This is re-printed from www.autismspeaks.org.

What is Autism?


What is Autism?
Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD). The other pervasive developmental disorders are PDD-NOS (Pervasive Developmental Disorder – Not
Otherwise Specified), Asperger's Syndrome, Rett Syndrome and Childhood Disintegrative Disorder. Many parents and professionals refer to this group as Autism Spectrum Disorders.

How common is Autism?
Today, it is estimated that one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. An estimated 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism. Government statistics suggest the prevalence rate of autism is increasing 10-17 percent annually. There is not established explanation for this increase, although improved diagnosis and environmental influences are two reasons often considered. Studies suggest boys are more likely than girls to develop autism and receive the diagnosis three to four times more frequently. Current estimates are that in the United States alone, one out of 70 boys is diagnosed with autism.

What causes Autism?
The simple answer is we don't know. The vast majority of cases of autism are idiopathic, which means the cause is unknown.

The more complex answer is that just as there are different levels of severity and combinations of symptoms in autism, there are probably multiple causes. The best scientific evidence available to us today points toward a potential for various combinations of factors causing autism – multiple genetic components that may cause autism on their own or possibly when combined with exposure to as yet undetermined environmental factors. Timing of exposure during the child's development (before, during or after birth) may also play a role in the development or final presentation of the disorder.

A small number of cases can be linked to genetic disorders such as Fragile X, Tuberous Sclerosis, and Angelman's Syndrome, as well as exposure to environmental agents such as infectious ones (maternal rubella or cytomegalovirus) or chemical ones (thalidomide or valproate) during pregnancy.

There is a growing interest among researchers about the role of the functions and regulation of the immune system in autism – both within the body and the brain. Piecemeal evidence over the past 30 years suggests that autism may involve inflammation in the central nervous system. There is also emerging evidence from animal studies that illustrates how the immune system can influence behaviors related to autism. Autism Speaks is working to extend awareness and investigation of potential immunological issues to researchers outside the field of autism as well as those within the autism research community.

While the definitive cause (or causes) of autism is not yet clear, it is clear that it is not caused by bad parenting. Dr. Leo Kanner, the psychiatrist who first described autism as a unique condition in 1943, believed that it was caused by cold, unloving mothers. Bruno Bettelheim, a renowned professor of child development perpetuated this misinterpretation of autism. Their promotion of the idea that unloving mothers caused their children's autism created a generation of parents who carried the tremendous burden of guilt for their children's disability.

In the 1960s and 70s, Dr. Bernard Rimland, the father of a son with autism, who later founded the Autism Society of America and the Autism Research Institute, helped the medical community understand that autism is not caused by cold parents but rather is a biological disorder.

Welcome

I am a father of five wonderful and amazing children. All of them have special characteristics that make them different from the others, and all of them bring a great deal of love to our family.

A few years ago, my eldest son, Chandler was diagnosed on the autism spectrum. This diagnosis changed our world. I had never before been exposed to autism, or what it means in the lives of the people that it affects.

A few years later, my youngest son, Spencer received the same diagnosis. His diagnosis came earlier than Chandlers, and we have been able to get him into programs for early intervention that I believe will help "cure" him of autism.

This blog is not just to tell the story of two amazing boys with autism, but to discuss the trials that come along with such a diagnosis and what it has meant for our family. It is an open dialog of our life, from a Fathers perspective.

Thank you for your interest in autism awareness - you can either let the diagnosis define you or you can re-define it. I choose to re-define it.

Cory Howerton