Maddie’s first day of summer vacation. This is not a good thing. Maddie loves school and she demands structure which school provides. She woke up today saying “What we gonna do?” This will be her mantra all day long.

My girl Maddie loves riding the bus more than anything in the world. Because of this, the bus helper and driver are rock stars in her life. Last month her bus driver Ron, suddenly took sick, and after a couple of weeks of intensive care, we were told that he had passed away in the hospital.

We knew this was going to be a major hurdle to try to help Maddie with. While Maddie is a 9 year-old girl, she developmentally is more like a 3 year-old. It was a situation that I quickly realized my wife would be better at dealing with because she has the ultimate answer to this issue. GOD. She’s a believer. I’m agnostic. This is first time as a parent I realized what a disadvantage I am in by not being a full-on believer. Thank god my wife is.

Susan: So Maddie, as you know honey, Mr. Ron became sick and he went to hospital.

Maddie: (very excited) He went to the hospital. Why he in the hos-pi-tal? (NOTE: Maddie loves hospitals and get excited just hearing the word.)

Susan: He was sick and Mr. Ron was not feeling good. After a few days he died. Now we are sad but now Mr. Ron isn’t feeling anymore pain, as he now in heaven.

Maddie: (a little confused) Why he die?

(This conversation is repeated a few more times and then Maddie seems pretty satisfied with the answer. It definitely helped my 5 year-old twins who needed to know as well, since their sister would be talking about it continually for the next month.)

It should be noted that I was asked many times after this by Maddie where Ron is? I take the easy way out and just recite the family response of he’s in Heaven. Do I feel like a bit of a fraud? Yep. But I got nothing better. I’m not sure I would follow this line of duplicity with my twins, but with a girl with special needs I’m glad I can go to the scripture. I’m guessing in this situation even Christopher Hitchens would have been reciting bible verses like Pat Robertson, just to make it easier on himself and help a sweet girl try to make more sense of this situation. Now I have no idea of how Maddie takes in a man above the clouds who is entertaining her good friend Ron, but my guess is she sees heaven as a hotel with a nice swimming pool and a 24 hour continental breakfast. (You know the good one with the waffle maker and fresh cinnamon rolls. 2 of Maddie’s favs.)

While I have become pretty knowledgeable on the subject of autism, I can’t tell you the diversity of emotions that most other people on the spectrum have, but Maddie is definitely capable of feeling sympathy and caring. Over the past month she has had major crying episodes telling us she misses Ron. When she is going through one of these moments she wants her Daddy and she lays her head on my chest as the tears flow. I try to reassure her, but it’s difficult as I’m not sure how much she  absorbs the concept of death. This is one of the cruel things that happens to a person with special needs. She’s a 9 year old girl, but her intellectual capacity has her thinking on many levels like a toddler. As her hormones start kicking in more and more, I’m not looking forward to the consequences. Stay tuned for the answers and I will accept your prayers. These prayers didn’t work for me when I tried them as a child, but maybe the cell towers that now exist will help in making the connection. Let’s just hope that God doesn’t have Tmobile.

Hit the video link below to better demonstrate Maddie having a hard time dealing without Mr. Ron on the bus.

https://www.dropbox.com/s/llzxfohrxz4tpk4/VIDEO0088.mp4

 

 

My beautiful girl, Maddie.

When it comes to most major news stories I have no more expertise than the next person. Sadly, I have a better understanding than most about what happened in Newtown, Connecticut, though. There was a school shooting last day of my senior year at my high school. I grew up in a home with a violent, mentally ill parent. I am the father of 3 young children. My oldest is on the autism spectrum.

You might guess the school shooting would be the most connective event to what happened last Friday. Actually not. Even though it wasn’t a large school I attended, I did not know either of the students involved, as they were a couple years younger than me. Like the testimony you’ve had heard from people that were there at school shootings, I remember hearing a popping, almost firecracker sound. One male student, who had been broken up with by his target, walked up to her while she was taking a test in the hallway outside of French class and killed her, then he turned the gun on himself. It seems to strange to me now that I wasn’t more emotionally impacted by this tragic event, but that is my truth. It still just feels like a surreal moment that I only feel connected to because it happened in the halls I would walk every weekday.

Now what does makes me feel more connected to the trauma that was going on in the Lanza family begins with my father. He was someone who battled mental illness all of his adult life. At one point, after trying to kill himself by jumping in front of a truck, he was committed to the Iowa State Mental Institution. This was the late 70′s and the medical understanding of mental illness was not that sophisticated. He was diagnosed as being manic depressive/bi-polar. I can remember visiting him a couple times at the Nut House (what most people called it) and it was truly frightening. I was 13 at the time and I wasn’t prepared to deal with what I witnessed. People walking the halls like zombies, crying and wailing and screaming. The smell was awful. I’ve performed standup at a state penitentiary and my experience leaves me with little doubt that I would rather be holed up there than in the mental institution I visited in 1980.

When my father was released, he was not better, he was worse. The medical plan for him was to take his lithium medication to moderate his mood swings. Before this I had been a major target of his mental and physical swings, so I was glad that these drugs would help him. The problem was, like many people who are manic depressive, he wasn’t looking forward to losing the highs that his disorder gave him, so he rarely took them. My Mom, brother, and I no longer lived with him when he was released, but that didn’t keep him from terrorizing us.

My Dad had weekend visitation rights, as my parents were divorced by now, but he would come late to our apartment on many nights he wasn’t supposed to be there and bang on the door, threatening to kill us or himself. I can remember all of us scared, trying to hide in our apartment only to eventually have to threaten to call the police as his banging and yelling outside the door would make us worried we would be murdered or if not that, at least evicted from the government housing we were living in. Eventually my Mom made a very brave choice and told us we were no longer going to visit my dad on the weekends as his inappropriate behavior was dangerous, despite her knowing he would stop paying the child support, which was money we desperately needed at that time.

Why I bring up this story is that from the age of 10 until I was in my late 20′s, I always feared my Dad snapping and killing family members, people he worked with, or even complete strangers. He was the proverbial ticking time bomb. Eventually his continued anti-social, dangerous behavior had him institutionalized again. This time he was force fed his meds at higher doses. He changed after this. He was lethargic and didn’t seem like the same guy at all. It was like he became a shell of the man he was and this shell was definitely cracked. He became the man he was worried that his meds would make him. On one hand it was sad, as he was slow to move and think, but sometimes society has to make these decisions when someone is potentially dangerous to others. I’m glad my Dad’s anger was neutered. It gave a lot of peace to people who were afraid of him.

My intention is not to get into a political gun battle here. What I will say is that I’m really glad that my father never had any automatic weapons in the house when I lived with him. I totally believe his temper would have had him waving it in our face or pistol-whipping us with it. Those would have been the best scenarios because I don’t think his violent temper would have stopped there. I know the gun laws are tougher now for mentally ill people to buy weapons, but keep in mind that before he was institutionalized, his record was clean in the legal system. His record was not clean for the 3 of us (my Mom, my Brother, and Myself) that lived in fear of him, though.

Now let’s come to the my daughter, Maddie. She is the love of my life. My wife, Susan and I, spent over 6 years trying to get pregnant to have a child. Finally, through the miracle of IVF, we had Maddie. She was a happy, sweet, and as we heard from what it seemed like everyone–she was one of the most beautiful babies they had ever seen. As blissful as this time was, Maddie was not reaching her developmental milestones, so we eventually had test after test to try to figure out what was wrong. In her 2′s, she was diagnosed with autism.

Now for those of you that don’t understand autism, don’t feel badly, it’s complicated. My thoughts on trying to explain autism to the uninitiated is like trying to explain the show LOST to someone who has never seen it. Here is Webster’s Definition of autism.

a variable developmental disorder that appears by age three and is characterized by impairment of the ability to form normal social relationships, by impairment of the ability to communicate with others, and by stereotyped behavior patterns
That is a good start. What I always like to state is that autism has a wide spectrum. Sure people on the spectrum share some of the same traits, but then, so do most people who are not on the spectrum. Some people on the autism spectrum will live fairly typical lives, while others will need great assistance. I just want to be clear that what I tell you about my daughter does not mean that someone is the way all people on the spectrum are. This is my daughter’s story.

I would not like someone to try to describe me in a paragraph, but that is what I’m going to try to attempt to do in explaining Maddie as a baby.

Maddie was one of the easiest babies ever to have. She didn’t cry much, as she almost always seemed happy, except for when she had gastrointestinal issues that she battled. (This is very common for people with autism.) She laughed a lot and flapped her arms a lot, which we just saw as her being happy. Even though she wasn’t reaching her developmental milestones, which worried us greatly, her attitude was so great we were not as depressed as you might of thought.
Now when she was finally diagnosed, it wasn’t total misery, as we wanted some kind of answers, just to give us some understanding of what we needed to do to help her. While we couldn’t afford a lot of therapies we would have loved to have done, the state First Step therapists who saw her on a weekly basis were wonderful and were a great resource of knowledge for us.

Here’s a dirty little secret that is rarely discussed. When a child with special needs is younger, people are very sympathetic to them, because they are cuter and pose less of a threat to their existence. There is a sweeter innocence to them. It’s when these people with special needs get older that it becomes more difficult for those strangers not to look at these people as freakish. Freakish is a tough word to write, but I think it’s pretty accurate for how some look at my now 9 year old daughter.

Her temper started showing itself after we had our twins. Like many people with special needs, she is very sensitive to loud sounds and if you were unaware, babies are really FREAKING loud. Put that in stereo and twins were a very bad equation for our home. Maddie was 4 when the twins appeared and her frustration manifested itself in her trying to hit these fragile little noisemakers. For 2 years we never were able to let her be in the same room as the little ones without us being in between them, as we didn’t trust what she would do.

I will always remember a moment when I was changing my son Sam’s poopy diaper. His twin sister Mallory starting wailing in the middle of this. Maddie came running over to hit the then 6 month old heavy metal screecher. I sprang up and all I could do was leap and push Maddie hard to the ground to keep her from slugging Mallory. I had just pushed to the ground my 4 year old with special needs to protect her baby sister. Mallory continued to wail, as I picked her up and rocked her, my hands covered with diaper cream. My sweet Maddie was lying on the ground now, crying hard, partly because it hurt her and more because it shocked her that her Daddy could do something like this. All this noise had startled Sam enough to have him join his sisters, which wasn’t helped by him still laying naked on his back. At this point, I joined my 3 children, breaking down on the floor, emotionally wiped out. I had never felt so helpless. For those first 2 years, my wife Susan and I were in a perpetual case of nervous breakdown.

I can’t say this is the only time I’ve lost my temper with Maddie. Fortunately this was the most physically aggressive I acted out in my anger. Considering the corporal punishment my Dad handed out to me on a regular business, I guess it’s not a huge deal in comparison, but that moment still haunts me. I know Maddie can’t help her inappropriate behavior most of the time, but it doesn’t always make it easier. Many times she has slugged me, her Mom, her siblings, teachers, fellow students. It is not a weekly thing, but she will go through stretches where she acts out. Fortunately the only people she has ever left any real marks on are me. When you are hit hard I promise the first reaction you have is not wanting to calmly respond with “Now let’s make good choices”, even though that is the response you have to try to muster up.

Now do I believe she would ever try to kill someone? Not in anyway. Her rage is in short bursts, as it is done to get your attention more than to hurt you. One punch or a hard tug of the hair is her technique to achieve this. I have never shared these stories about Maddie because I didn’t want people to be fearful of her. She’s a sweet girl who most people who know her fall completely in love with. She’s fun and silly, but she was born with a developmental disability that overwhelms her at times. Like a lot of people on the spectrum, she is obsessive compulsive and it can pretty maddening to live with. We have her on some pretty strong and expensive meds, which definitely helps, but her motor is going 100mph all day until she goes to sleep. Probably not the stereotype you had of someone sitting in a corner all day watching TV or playing a video game.

As a father of young children, my heart bleeds for the parents of the children who were murdered in Newtown. I can’t imagine how devastated my life would be if something happened to any of my children. I want to also say though that my sympathies also go to the Father and late Mother of Adam Lanza, as I know the massive struggles that go along with raising a child with autism. The intense mental and physical toll it takes on you is literally a 24 hour, 7 day a week job. (often kids on spectrum don’t sleep well, keeping many parents from ever getting more than 4 hours of sleep at anytime.) When you have a child–you have dreams of them achieving many things in life. It’s pretty devastating to learn that your little son or daughter will never grow up to have any close connections with friends, never marry, never hold a full-time job, and that you will have to take care of them the rest of your life. This is the prognosis for many parents with kids of the spectrum. It is heavy burden where your focus has to be number 1 on this child who needs so much attention, which can be a death knell to a marriage.

I have a lot of understanding for Nancy Lanza, but I cannot fathom how she could fill her homes with guns, let alone take him to shooting ranges. I am incredibly sympathetic to her, as she was left to raise a troubled young man by herself, but to keep weapons and go as far as teaching a ticking time bomb like her son to shoot them at target ranges was tragically wrong. As I said, I’m not going to get into the gun control argument here, as I don’t want to catch flak—especially since I don’t even own a flak jacket. This is one of those times when both sides have some legitimate points. I will just say that the NRA should be pushing harder to preach a message that people with mental disabilities should never have access to guns. Not just lip service, but actual paid public service ads. The NRA has spent too much time doing everything possible to fight any gun restrictions. The slippery slope they have been worried about has been greased by their fighting some gun laws that make sense.

Let me be clear in saying this about people on the autism spectrum…I’m not an expert. The stories I will share at this site will be about the many highs and (some lows) that I experience in being a parent of my wonderful daughter Maddie. Don’t for a minute believe that what 1 mentally ill person on the autism spectrum did is a typical psychosis of everyone with the disorder. Ted Bundy was the boy next door. Charming and handsome. Does that make everyone who fits that stereotype a serial killer? No. Well same goes for people with autism and Adam Lanza.

While some are now demonizing people with autism, it should be mentioned that people with special needs are 3 TIMES AS LIKELY TO BE MENTALLY OR PHYSICALLY ABUSED. After years of expanding federal and state government costs, 2 areas that have been cut the most are mental health and therapies for people with special needs. States like South Carolina and Alabama have slashed their mental health budgets by over 30 percent in just the past couple of years. Often in this country we believe the best way to protect ourselves from problems is to build bigger jails, add more fences, or hire more security. Before we go after that money drain, there needs to be more money allocated to help educate and treat people with real mental disorders. It is our best defense in creating a better world for these people, which in turn makes it better world for everyone.

This is Maddie at 7 years old (she’s 9 now).

In 50 seconds you see her sweetness, her beauty, her manic behavior, her quick frustration. This site is a place where I want to help people have a better understanding of the wide spectrum that autism encompasses.

A little insight about my daughter Maddie is that she has no more than a few seconds interest in TV, Movies, or Books. There is no sitting her down with Toy Story or Dora and then getting some things done for the next half hour. She’s wired to constantly want to know what’s going to happen next and it is your job as parent to find something or there’s a good chance a meltdown is around the corner. It is by far the most difficult thing about being her parent. Translation: It fucking sucks.

There are less than a handful of things she has interest in and number 1 on that list is basketball. Ever since she discovered she really liked it when she was 7, she has kept a basketball with her at all times. For the past 3 Christmases and the past 3 birthdays the number 1 thing on her list was to get a basketball. I’m not exaggerating when I say we have over a dozen basketballs in our house and garage. She actually brings a ball to school each day in a separate bag. It’s like her security blanket.

When she first got into basketball it was Fall, so when the Winter happened it posed a problem. This was the only thing she liked to play with, so the answer was to move the kitchen table back and let her dribble the ball on the small hardwood we have in that room. When you have a child that has no other real interests besides wanting you to do some type of pretend play, which you don’t have the time to do for very long, you are willing to let her make like Marques Haynes (look him up), even if it means the constant pounding of rubber on your formerly shiny wood floor.

Last year Maddie was old enough to sign up for Special Olympics basketball and it became her biggest focus for the week. Her attention span is practically non-existent, but the b-ball practice gives her something to really look forward to and the volunteer coach is great. I know for some of you that the Special Olympics is just a punchline, but I promise you that if you go to a Special Olympics event sometime you will feel more emotions (like joy, heartache, laughter, etc) than any other sporting event you’ve been to before.

Since Maddie is younger than everyone on her team, plus has such a poor attention span, she struggles with some of the elements of practice, but my girl can shoot a 5 foot shot better than anyone on the roster. (My guess is she makes 75% of her shots from that range.) I was a good athlete growing up and I’m not going to pretend I didn’t have big sports star plans for my child. I have adjusted them, but to see my daughter score a basket and run down the court with a happy smile on her face is huge.

I don’t want to give you the impression, though, that it is just an easy time for her out on the court. Maddie struggles with loud noises, which can be a struggle when the cheers happen after someone scores a basket. She had some major crying fits over this at a couple games last year, but by the end of the season I thought she had grown past it.

Last night was her first game in 10 months. She had been excited about this date since her last game. Her former early childhood teacher and the teacher’s fiancee had told her in passing at some springtime Autism event that they would like to see her play sometime Maddie had mentioned excitedly to me at least 5 times a week for the past 8 months. When you mention something Maddie, you better end up coming through, which her teacher knew. They showed up as did Maddie’s current classroom teacher.. So with them and our family, she had a good cheering section.

She excitedly put on her uniform. She walked out from her team huddle to start the game for the first time and something snapped with her. She got very emotional, crying and saying she didn’t want to play. She then went to the ground. Here is the video to give you a better idea of what I’m talking about.

After calming her down from the sidelines, Susan (her Mom) went over to the bench to try see if she would go back into the game, but it wasn’t working with Maddie. Susan told me I should run out to the Van and get her headphones, as the sound might be the issue. (For many kids on the autism spectrum, loud noises–like at a basketball game–can unnerve them. So I raced out, came back and put them on her. It still wasn’t working and she didn’t want to wear them.

I’m not going to pretend it wasn’t an incredibly heart-breaking moment. This is the most important thing in the world to her. The event that she had been aching to be part of for over 42 weeks…and her autism takes over. Autism can be like a demon, taking away from her what she wants the most.

Still crying her eyes out I took her out of the gym and walked and talked with her in the school hallway. She started to calm a little. We walked by the girls bathroom and I told her why don’t you go potty and then wash your hands. She agreed with this idea. My goal was to take some of her anxiety away by getting her mind off what was troubling her. After she came back out I told her I have a schedule I wrote on my phone with going potty and washing hands first, then you playing basketball, then you thanking the people that came to see you play and then going out to McDonalds for dinner, after. If you are able to do these, I promise you will get a carmel sundae there as a treat. This seemed to do the trick.

I will get into this in more detail some other time here, but the thing that calms Madeline more than anything is a written schedule. It’s the only thing that seems to help her make her world make sense. That might sound like a fairly easy thing to do, but just stop and think a minute what it would be like to constantly write down and plan every moment of every day for a child. It’s not only exhausting, but it’s totally impractical, as life doesn’t work that way, especially when you have 4 year old twins you are parenting at the same time. Like most other things when dealing with the autism spectrum, you do your best.

So we walk back into the gym and she is able to come back out on the floor pretty soon after. She gets up one shot that rolls around the rim and falls out. Just another reason for me to know for sure that God isn’t helping people win or lose at sports. It could have been such a Hoosiers moment for her fans, but it wasn’t to be. Considering what she was going through, this was the perfect time for a God who gave a shit about stuff like who wins and loses to tilt the axis just enough to make sure it rolled through the net. A lot more important than him helping someone like Ray Lewis get one last chance at a Super Bowl.

After a couple more trips down the floor, one of her teammates accidentally elbows Maddie in the mouth. The waterworks begin, as I walk on the court and bring her out of the gym. She is crying hysterically, which I can’t blame her for doing, since his elbow opened up a small cut and her lip was swollen. Back to the bathroom. I ran cold water on the elementary school brown paper towel, holding it up against her lip to stop the bleeding. I went through 3 towels and the bleeding was stopped enough that she could have even passed the NBA’s Magic Johnson rule.

Wiping the tears and the snot from her face, I washed my hands and then brought her back. Both my wife and I are from the school of brush yourself off and give it another try. Maddie went out there again, ran up the court a couple of times. Then one of her teammates was fouled and this girl went to the free throw line. She made both shots, which brought a thunderous roar of excitement from the crowd. It was the best moment of the night for our team. I cheered too, then noticed that my girl was holding her ears crying again.

I tried hard to put a smile on my face and then told the coach Maddie was done for the night. Maddie came over to me and I held my 9 year-old girl on my lap. It probably looked strange to most people as she is the tallest person in her class, but while she is 9 in age, her emotional and academic level is more like a 3 year old. So cradling her in my arms while we sat on the bleachers is what was needed. I said to her that I was proud that she tried so hard tonight.  The game ended soon after. I told her if she wanted to get a treat she needed to walk the line with her teammates and slap hands and say good game. We brushed away the tears and she walked the line.

This whole story took less than 45 minutes, but it seemed much, much longer. Having a child like Maddie is mentally and physically exhausting. You don’t have to be told to appreciate the small things, because that often is the best you can hope for. This is the real truth.

Our crew went to McDonalds on the way home. I was able to buy dinner for all 5 for less than 12 dollars, abusing their dollar menu. It was like I was Jesus turning 5 McDoubles into enough to feed a multitude, while still getting fries, apples and sundaes for my kids.  There was no turning water into wine (or lemonade), as water stays water to afford the going out to McDonalds luxury. At this point the kids don’t realize how cheap their parents are, but that is what we can afford. At some point my twins are going to learn how much their sister’s autism costs our family financially. I’m sure they will have moments where they resent it, but the love they have for her will override that. I know it does for me.

So on the drive home, Maddie mentions that she had a good time and asks when her next game is? I laughed like a lunatic, but guess what? I am looking forward to the next game because I know she will make a couple buckets and I can’t wait to see the joy on her face. If I’m going to be totally honest here, the smile on my face will be even bigger.

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