My beautiful girl.

Once we had so many options
Once we had dignity and grace
Now we have got nothing but our own time to waste.

Predictable
Yeah, that’s the word of the year
Predictable
All I see, all I hear
Why can’t it be like never before?
Predictable
Yeah, ain’t life a bore
Predictable
Life gets more and more…
Just like I’ve heard it all somewhere before.
Predictable
Sure as the nose on my face
Predictable
Same for the whole human race

–From the Kinks 1981 song Predictable–

As I get older and get set in my real world life, this song gets more and more profound. I say this even though I know my job as a standup comic keeps me about as far away from predictability as any profession could.** What you might not know about being a standup is that as much as I like the new experiences it brings, the thing I hate the most about it is how it isn’t Predictable. I have to hustle week to week to book myself. Unless you are one of the few comedians who can draw a large audience, you are constantly scrambling to get work. There is no health insurance or paid vacation. I can’t file for unemployment benefits. It’s definitely not an ideal scenario for raising children, but after 20 years in the business, it’s kind of late to start up a new career. With my job experience I’m afraid the only other thing I’m qualified to do is hold a $5 dollar pizza sign outside of Little Caesars.

**Rock star is the only gig I can think of that would be less predictable. Considering this, how did Ray Davies manage to write this? Impressive. 

The best answer I can come up with to the question of what is the key to being a good parent is Be Predictable. I used to have a joke in my act that spoke to this. I grew up with a manic depressive father who was so abusive that during his mood swings I used to wish instead he had a drinking problem…you know…so at least I could predict when he would hit me. As dark as that is, there is a simple truth in the joke that children need structure. Sure kids love the occasional happy surprise, but if you think by showing up a couple times a year with a bike or a new X-box only to disappear again, that this will enable you to be seen as some type of a champ, you are delusional. The annual shiny Schwinn doesn’t keep you from being a deadbeat Dad. The most important thing for kids is they can count on you to have their clothes washed and their dinner made. You have to show up. They need to know that you will be consistent and that you will be there for them when they need their basic needs met.

This predictability is only magnified with a special needs child. Keep in mind that the world around is often very confusing to them. It’s noisy, it moves too fast, and it’s scary to them because it’s so unpredictable. For these kids, having a place with structure that offers them few surprises is more important than anything else.

Maddie is the perfect example of this. What will set Maddie off more than anything is not knowing what her day holds. This is where I think her Happy Monday greeting comes from because on Mondays the structure of school or summer camp starts up again. Monday follows a weekend where things don’t work as well for her. Remember that she doesn’t like to watch TV or play with toys. She wants interaction with someone who can facilitate some kind of action to keep her engaged. She can’t do this on her own. That’s why she believes so strongly in TGIM. (figure it out.)

The first thing Maddie says when she gets off the school bus in the afternoon is what we gonna do? It seems like a fairly innocuous question, but it often chills us to the bone. Let’s say you have an answer for it, then the next question that will follow is, what we gonna do after that? As her parent it feels like some kind of sadistic Abbott and Costello routine that never ends. I’m sure some of you would think, well you just need to string a few things together. How hard could that be? And the answer…What is REALLY FUCKING HARD, ALEX. If you don’t come up with the right answers for her, Maddie will often go into meltdown.

Well that sounds like a discipline problem, Scott. You would probably be right, if this was a typical child. Both my twins are told to sit in time out or to go to their rooms if they blow-up over something. Not so easy with a child like Maddie. We have tried this approach with her, but as difficult as it is to impress upon a 5 year-old that parental logic is the right answer for the situation, it basically has no connection with Maddie. She is apt to take a swing, scream at the top of her lungs or try to break something in the house. What will often follow this is some manic behavior of apologizing, but done with no sincerity. This apologizing will be her saying the words because she knows you want her to, but they are spoken with all the sincerity of an informercial selling male enhancement pills.

What Maddie wants more than anything is a schedule. It makes her feel warm inside. In a world that is not built for someone like her, this schedule can help her make sense of it. So no more issues. The schedule solves it, right? I wish it did, but you have to get the right things on the schedule. Oh and there are plenty of times in life where your schedule isn’t going to work with her, because you need to get some stuff done for yourself and the rest of your family. It’s definitely time for me to state at this point that Maddie brings so much joy and love to our world. I know some of this comes off harsh about her, especially when it makes it seem that so much of our life is held hostage by her special needs. I couldn’t write this with any honesty if that wasn’t included, though. It is an exhausting life, but you keep pushing on through because you feel so much love for this girl. A girl who did not ask to be born with this disability.

Sorry to be a bit of a downer today, but not all of life is uplifting. Let me suggest if I’ve left you feeling a little low, bake up some oatmeal chocolate chip cookies and then pull up Hoosiers on Netflix. Enjoy it for me, as it doesn’t currently fit into my schedule.

Come on. Not another picture.

The thing I most want to do with this site is the part of the title that says Let Me Help You Understand. Autism is impossible to explain in a couple sentences, which is why I hope the readers here will get a better flavor of what it’s like to be the parent of a child on the spectrum. Warning: Strap in because today will have some uncomfortable moments.

**Note: I try hard to not make this a place where it sounds like a Oh Whoa is me festival. Sorry, but today will include some of that, but hang in there because I still think you will at least find the following fairly illuminating. 

Before your child is even diagnosed being on the autism spectrum, your life has already changed because kids with special needs of any type take so much more time and focus to parent. You remember your friends that you used to go out with? Not going to happen anymore. The words special needs are there because this child has needs that are out of the ordinary. Needs that the average high school girl down the street isn’t equipped to handle. The person that watches your child is someone you have to trust implicitly. That means it’s close relatives or someone who has been educated in the field. There are so many times in regards to work or doctors schedules that you are in desperate need of help that you can’t waste these opportunities going out to have fun. Anyway, it’s not like the whole time you are out you are going to have a good time–when  your constantly worried your child isn’t having a major meltdown or having an asthma attack.

Besides feeling trapped, you also are just fucking tired. If you are not worn out from having to focus almost all your attention on your little child who cannot do almost anything for themselves, you are exhausted from getting very little sleep. Many kids on the spectrum have poor sleep habits and their parents are often fortunate if they get half the sleep they need. I rarely consider myself lucky about the challenges Maddie faces, but the one plus of her motor going 100 miles per hour is that when it’s time for bed, she is worn out. Unless there is a thunderstorm or she’s extra-excited about what is going to happen the next day (like any typical kid would be), she is a heavy sleeper who will conk out for 10 to 11 hours each night. I know some parents right now are hating me reading this, but this great sleep pattern comes with a price… a day of non-stop Tasmanian Devil energy.

Now we come to the buzzkill part of the story. During the few times you might get a little break and get to talk to a bunch of other parents, you will often feel like an alien. These parents will either talk about 1 of 2 things when discussing their kids.

1. Brag about the achievements of their child. 

• My 5 year old knows all her letters and numbers.
• My toddler is doing great at Mommy and me swim class

It’s totally natural to feel pride about your child. If you are a good parent you are a big part of why that child is achieving these things. The problem is when one of these alien parents of a child with special needs is there, you most likely are going to start to feel guilty about bragging too much.This is especially the case if you have any idea how exhausting life is for this alien parent to get their 5 year old to use a spoon. (or in Maddie’s case, a 9 year-old) This makes the alien parent not as much fun to hang out with. We are a buzzkill.

     2.  Bitch about how their child behaves.

• My 5 year old won’t stop sassing me.
• My potty-trained toddler has been wetting the bed some nights.

It’s totally natural to be beyond frustrated about your child. If you are a good parent you are concerned with your child’s behavior and sometimes you need to vent. The problem is when one of these alien parents of a child with special needs is there, you most likely are going to start to feel guilty about bitching too much. I can tell you personally that listening to someone brag about their child isn’t half as tough to swallow for me as to listen to them bitch about something that seems like a triumph in my life.

So your 5 year-old won’t stop sassing you. Well my 5 year-old can’t say more than 5 words and I doubt you would be able to understand any of those.

Wow, you’re telling me your 22 month-old sometimes wets the bed, despite being potty trained. Oh how my heart fucking aches for you. Maybe this will pull you out of the dumps. Stand a day in my crocs and try changing a 7 year-old’s poopy underpants? Oh and make sure to act joyous while you’re doing it because you know that your constipated child at least got some much-needed relief. 

See what I mean. We alien parents are total buzzkills. While our children are shunned by their peers at a very young age, we start to fall by the wayside, as well. And I don’t blame anyone for it. It’s pretty hard to keep a close friendship with a person if they constantly turn you down when you ask if you want to go out for drinks or come over for dinner. We alien parents would like to but know that our number 1 focus is our special needs child. And let’s say we can find the time to go out with you, how much fun is it for a typical parent to be constantly worrying if they are going to say something that seems harmless coming out of their mouth, but will be soul-crushing to a certain extent to the alien parent? No I get it. No matter how charming and fun we used to be, we are a tired, frustrated buzzkill most of the time to a parent with a typically developing child. If we were really to share the truth of our stories, your complaints would seem about as valid as complaining of a brain freeze after eating a pint of Ben and Jerry’s.

Now you might think the answer might be to friend up with some other parents of a child with special needs. Well if you think it is hard for just 1 of these alien parents to make their schedule work to meet for just coffee, trying making the equation work when you have 2 alien parents. Oh and here’s another Catch-22 element. As much as we appreciate being around someone who actually understands the struggles we have, when we get the chance to escape we need someone who brings some positive energy to the festivities, which isn’t something an alien parent can usually muster. Two storm clouds together isn’t the optimal experience, even if they meet on a sunny day at an outdoor cafe.

I have no doubt that the majority of parents of a special needs child suffer from some pretty severe depression, especially in the first few years. I’m also guessing that most of these people don’t take any anti-depressants because we rarely have time to go to the doctor for ourselves.  I’m pretty positive that very few get any psychiatric care because our finances don’t provide for that type of cost and our insurance already is being drained from our child. Hey, but at least there’s self-medication! Well, not even that is typically an option because if you are by yourself, you have to stay sober so you can deal with any potential catastrophes that generally seem to be just around the corner. So as much as it’s needed, it is rare the moment when we can say It’s Miller Time.

(Time to play the superhero music) What keeps parents of children with special needs from laying in the fetal position all day? Simple answer. We have no choice. Shit has to be done and we are the ones that have to do it.

Man does this read depressing. Sorry if this has bummed you out, but believe it or not, this was me actually sugar-coating it. These things I have outlined are the reason that so many parents of developmentally disabled children hole-up in their homes like they are a sect of the Branch Davidians. Fortunately the internet has helped us alien parents some, as we can find the time after a long day to email a friend. By the end of our long day, we often look so battered that we don’t want to be seen, but we can instant message you. Just please just don’t ask us to Skype. You see, after the day and night we have had, the last thing we want to do is present some Facetime.

Postscript: I should mention that I’m lucky to have a job which enables me to have something better than even friends–fans! Fans just want to tell you how much they enjoy what you do and for the most part leave you alone after. This short-term adulation is really a great deal for someone like me who has a hard time spending longer periods of time with people. Fans almost make the lousy pay and low-grade travel 99.9% of comedians suffer from worth it.  

Today we see Maddie at her summer camp place. Easter Seals Camp Abilities is a place that gives her much needed structure.

A picture only tells part of the story.

Rolling down a new suburban street of 1 of the 10 best places to live by one of those money magazines, everything seems peaceful and calm. But if you peer into the 12 year-old minivan racing to get home, you would see a 9 year-old child screaming in the back, kicking the seat in front of her, and reaching to punch anyone within her reach. You then would hear the father yelling to his 5 year-old son to unbuckle his seatbelt and climb in the front so the boy doesn’t get hit by any of the shrapnel of someone having a full-fledged meltdown. You would hear the other child in the car, an upset 5 year-old girl, telling her older sister to stop making poor choices. Driving at this point is about as safe as a drunk person texting while also scarfing a hard-shell taco. Hey Jeff Gordon, try this sometime if you want a challenging drive. We are talking total insanity and the worst kind of adrenaline rush. The father feels terrible that this is part of the atmosphere that his children grow up in, but some thing’s are out of his control, as much as he tries to make sure they don’t happen. This is my family and I’ve lived a version of this story dozens and dozens of times.

The first thing I would tell parents of a child who has recently been diagnosed with autism is that it is now your Number 1 job to fight like hell for your child’s welfare. Your biggest enemy will be your insurance company. You are not your insurance company’s friend and they will do everything they can to keep you from getting the services your child needs. I know this sounds horrible, but I’ve never heard a parent with a child with special needs say anything else but this being the facts.

The dictionary definition of autism is this:

A pervasive developmental disorder characterized by severe deficits in social interaction and communication, by an extremely limited range of activities and interests, and often by the presence of repetitive, stereotyped behaviors.

This is true, but only scratches the surface of what it means to many people on the spectrum. There are many physical health issues that aren’t included in this definition. From gastronomical issues to immune deficiencies, a person on the spectrum can be a very expensive proposition for insurance companies. And this is not even discussing the thing that sends money out the door the fastest, therapies. So while the insurance companies will claim they are going to give service to these people in their actual policies, they have systems set in play to continually deny these claims. It’s part of their business bottom line. They want to make it so difficult that you eventually just give up.

In regards to speech therapy, our family eventually did this, as we were concerned our credit rating was going to go down the tubes constantly fighting for the benefits that were in our policy. Assholes 1: Family with special needs child ZERO.  These companies know that you don’t have the time or energy to keep challenging them, so they keep biding their time pushing denial letters your way and making it nearly impossible to get to anyone on the phone who can make a decision in your favor.

One thing we can’t do without is Maddie’s medications. We have tried diet and behavioral strategies to help Maddie with her outbursts, but the only thing that has worked for us is pharmaceuticals. Before I had a child on the spectrum, I was part of the group of childless adults claiming that we are overmedicating our children. Now, I stay out of that discussion, as I know these pills have helped give my daughter some stability.

Recent studies show that nearly 1 out of 3 kids on the spectrum have ADHD. That is definitely the case with Maddie. I have described her engine being one that is constantly running at 100 miles per hour and I’ve told doctors if she could just get it down to 70, she would be able to learn and function so much better in life. Let me tell you it’s pretty traumatic as a parent putting a 5 year-old girl who has the developmental age of an 18 month old toddler on some mood-altering drug, but you eventually reach a point where you have to do something.

When we first decided to put her on some medication to calm her it had to do with Maddie not being able to speak but a few words and having major learning problems because she had very little attention span in her early childhood classes. We were looking for a miracle, but the first couple medications we tried were far from it. They made her more agitated. The second one totally freaked her out. This is pretty typical, as just like there are few roadmaps to raising your child on the spectrum, one drug does not fit all. We decided at this point that we weren’t going to put our little girl through any more of these. Time to put your head down and try to survive the storm…until the storm gets too great and you wind up back at the specialist to see if there is anything that can save your family. Desperation is a word that should only be used during desperate times. I promise you these were desperate times were ahead.

We came back a year later, with twin babies in tow. The addition of these 2 had not been a joyous moment in Maddie’s life, as twin babies are screaming machines. To a girl adverse to loud noises, the only thing worse to bring home would have been a couple offensive line coaches. She was constantly trying to physically act out towards the twins. She would also physically bang her head against the wall until she would cry. It was breaking our heart as we didn’t know how to help her. My guess is her behavior had something to do with formerly being a girl who had gotten a 100% of her parents attention and she was going to find a way to get it back, even if it took physical pain to get it.

So when we walked back in the doctor’s office again, we needed help. Susan said it perfectly. We are a family in crisis. A big reason we hadn’t continued on the pharmaceutical road was that the next drug being recommended was a big step-up. A drug designed to help those with psychotic impulses.   The doctor told us that one of the side effects is it would make her potentially groggy. My response was we can only hope. I know some reading this think that is a horrible comment. A parent hoping that some drug could make their child groggy.  All I can say in my defense is unless you also have a girl who is amped up like she’s drinking redbull out of her sippy cup and is also having violent outbursts because her brain is setting off receptors like the 4th of July, you have no idea what it is like. When your child doesn’t respond to a structured schedule and still acts out after you put a gluten-free metal detector at all your doors,  you are desperate, looking for about anything to help her and your family.

In case you are unaware, you have to slowly amp up the drug, but we started seeing some positive results right away. She was a little more calm and less manic. Some might feel this drug is taking some of Maddie’s natural instincts, but I felt like it was helping Maddie become more the girl she was supposed to be. Over the past 4 years she has been on this drug, taking a little more as she has grown. After she started to backslide some we added another drug to the mix a couple of years ago which has helped her with her impulse control. Maddie was far from calm, but she at least didn’t seem like she was on a constant tweeker binge.

So finally we get back to the Minivan. What had happened to cause Maddie to flip out? Over the past 5 years our friends at the insurance company had raised our private policy rates from 700 dollars a month to 1400 dollars a month and they were set to boost it another couple hundred. Keep in mind our deductible wass super high and we were not getting any therapies, so they were definitely making money off of us. Despite this, I’m sure their algorithms tell them to keep gouging since a family with a child with special needs is always a potential money loser. At over 1600 bucks a month, it was time to pull the white flag out. Assholes 2: Our family still at ZERO.

Even though it was going to be nearly impossible with our schedules, Susan decided to amp up her hours so she could qualify for health insurance at work. It would leave us paying about half of what we were before, though some of that savings would be swallowed up by paying more in deductibles, especially impactful when it comes to the cost of prescriptions. Still we were going to be able to make it work, as long as we could drop one of her drugs, as it was going to cost us around 200 dollars a month more than before. We weren’t sure this latest drug was doing that much for her, so we decided to take her off it.

We slowly started to ween her off it. It didn’t take long, though, for us to figure out that this drug had been working. Maddie started behaving badly at home and at school. This is the kind of going broke versus trying to do what is best for your child decision that parents of children with special needs have to make all the time. We came up with the best solution we could by going to a generic that isn’t a time release capsule like the previous one she was on, but still works pretty well. I can see arguments for both sides on the government health care debate, but not having affordable health care for children and those who cannot take care of themselves is a disgrace. Working families shouldn’t have to go into bankruptcy just to keep a loved one healthy.

I have tried to make this site a place where people with special needs can be celebrated, but I also want to reflect the truth of our situation. Thanks for hanging in on this one with me. Happy Monday is less than 2 days away!

There is a misconception out there that people on the autism spectrum sit around focused on just 1 thing, be it video games, TV, etc. This could not be further from the truth for my Maddie. She has never had any interest in movies and only a handful of TV shows have kept her watching for more than a minute.

The first show she did feel some connection to was Calliou. If you don’t know this character, he’s a 4 year French Canadian albino who is drawn like he suffers from Alopecia. If you ever wished Charlie Brown was whinier and said eh a lot, Calliou is your guy.* Most of the episodes seemed focused on hockey, maple syrup, and Labatt’s.* The parents dress like they own 2 sets of primary colored outfits and 1 of the grandfathers speaks with the fake sound of an out of work voice over actor. Do you get the vision that it’s an annoying show to me? But since it was the first thing that would hold Maddie’s interest for a little bit of time, I will be eternally grateful to those Hosers from Quebec. *my facts maybe skewed a bit.

The next show she started liking was Little Bill. This show was created by Bill Cosby and is a major step-up from Calliou. It has a Peanuts vibe with it’s cool jazz music and simple animation. While not as funny or edgy as Fat Albert, it really is a great show for young kids. Since the death of Gregory Hines, who was the voice of the father, the show ended it’s run, but I would seek it out. In contrast to Calliou, the characters are black and the show is set in Philly, so basketball has a stronger presence than hockey.  There are a couple episodes that Maddie has watched from beginning to end, which is amazing considering her very limited attention-span.

Let me mention at this point that I think it’s a natural reaction to believe that your kids are going to want to watch the same shows that you did as a kid. Well that’s probably not going to end up happening. I bought tons of Sesame Street DVD’s and none of my 3 kids have had much interest in what I consider hands down the greatest children’s show in the history of TV. I mean just look at the diverse mix you have in characters. It’s like The Wire with puppets. 

• Cookie Monster- Is out control with his eating habits= bulimic
• Grover- Skinny, filled with endless energy, and possesses no teeth= crackhead
• The Count- Dresses up in a costume and spends all his day doing math= NERD.
• Oscar the Grouch- Angry, isolated muppet who lives in a pig-sty= Hoarder.
• Bert and Ernie- 2 guys who live together= Not gay. They sleep in separate beds. Come on!
• Elmo- Sweet, happy little guy= Now the guy who has his hand up his ass. Not so sweet and happy:(

The one the thing that is worse than your child rejecting your childhood classics is them embracing shows you really hate. She did do Barney for awhile and it definitely lives up to the hype of being annoying, but I find the Wiggle worse. If you are unaware of the Wiggles, they are 4 Australian dudes who dress like they are on Star Trek, but behave more like they are the Village People. When the best character on the show is fella named Captain Feathersword, I don’t think I have to say much more. So here’s a tip. Do your research to find out what children’s shows are going to make you insane and then be diligent of NEVER letting your kids see them. Some people raise their kids with a Gluten-free diet. My kids have been on a Wiggles-free diet.

The only other show I can recall Maddie watching is Wipeout. You know the water obstacle course show where people get hit in the balls by balls. Maddie is very sensory by nature, which is why the show is so perfect for her, as Wipeout might be the most sensory thing every filmed, well if you don’t include that scene in the kitchen during the movie 91/2 Weeks.

During the past year, though, a miracle has come to our home. The iPad. I bought it for her hoping that it would be this great tool to help her learn more, which has been the case for some kids on the spectrum. The good part was that it did enable her to do things with a computer that she couldn’t manage before, as using a touchscreen is way easier for her than clicking on a mouse. We have bought her tons of educational apps and a few have kept her attention for a few weeks, but the great thing the iPad has brought to Maddie is Youtube. She discovered kids songs on it and it is the first time in her life that she will sit for 15-30 minutes at a time on her own. She uses it like a karaoke machine singing along and it puts her in a happy place. Kind of like listening to speed metal on my iPod does for me.

I’m not embarrassed to admit that I have tried pushing lots of other shows that I grew up loving on her. Outside of liking to watch Pee Wee Herman ride his bike at the end of each episode, none of them ever connected with Maddie. This lack of connection will happen with all kids to their parents, (the only shared program from my childhood that my twins have gravitated toward is Scooby Doo), but it definitely magnifies itself when you have a child with special needs. As hard as you try, there is often such a huge distance between your common interests. That is why when you do find something that does connect you with your child, it is revolutionary to your heart and soul. This is a big reason why I’m such a HUGE fan of the Special Olympics. A little secret about the Special Olympics. They are as important to the parents as they are for the kids. They are the one program that parents can feel some of the same feelings that parents with typically developing kids experience all the time. (So go over to the right of you and buy a damn shirt.)

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.