This car we found on vacation is big enough for her, but it takes more strength and steering ability than Maddie can manage for very long.

The world is not built for Maddie. The truth is that a 10 year-old, who is developmentally closer to a 3 year-old, is constantly struggling to fit in. This is not a new phenomenon for my girl. The age math between these 2 factors has always been a battle for her. It just gets tougher as the years go by. This is one of the main truths that hits you fairly early on as a parent of a child with special needs, especially when you have a child like Maddie who has always been in the 95% of height and weight for her age group.

Maddie’s motor skills were always very delayed, so by the time she was ready to ride a tricycle, her legs were already too long to fit properly. They do sell specially made trikes, but the expense is way too much for most families who are already over-burdened financially by their child with special needs. It is a parenting rite of passage to teach your child how to ride a bike without training wheels. Well considering Maddie’s balance struggles I just don’t ever see that happening, especially because our crappy insurance would throw a 4k deductible right off the top, if she did break a bone falling. Instead you find other things that are her version of riding a bike. You see when you have a developmentally delayed girl like Maddie, you become even more excited by seemingly small achievements because you know she has to work so much harder to get there.

There was no toy that has ever made Maddie happier than getting to drive a motorized car around the neighborhood. It didn’t require the same coordination as a bike, so she was in heaven when she was able to use it. After a couple of years, though, her physical growth made it impossible to fit into it anymore. It was one of those many heartbreaking moments trying to explain to her that she could no longer ride in it because of her size. While she might not be as cognizant of everything around her as a typically developing child is, she still gets frustrated and asks why she can’t do things that neighborhood kids that are around her age get to do. It’s really hard to come up with an answer to these questions. The world around Maddie, despite the love she has for it, is often a tough fit. The square peg in a round hole cliche doesn’t do justice much of the time to how difficult it can be for her. And you think the world is sometimes unfair to you. I know when I feel like I can’t seem to catch a break, I think of my girl and realize that I at least have the skills to make things happen. For many people like Maddie, that just isn’t the case.

Maddie at 3.

One of the great programs that has really helped kids on the spectrum is called equine therapy. Many autistic children struggle to connect with people and the world around them, but when they get on a horse, they come more out of their shell. It’s a wonderful program that people are always mentioning to me, because your local TV news is constantly using it as their feel-good story of the day. The problem for my family is that it would never work for Maddie.

Maddie likes people. Sure too many of them can bother her, but as her Happy Monday Maddie-self demonstrates, she likes to be around them. She does not like animals, though. Take  her to the zoo and the highlight will be the car ride down and back. There is no way we could try equine therapy with her because not only does she not connect with animals, but she seems to suffer from the same exact allergic reactions as her Mother.

On one of the first dates I ever took Susan I thought I would be smooth and set up a carriage ride downtown. Well that did not work well. Come to find out she’s deathly allergic to horses. The rest of the date she spent sneezing and she felt miserable. Sexytime! You live, you learn. Sing it Alanis. You Learn.

My favorite story on this subject is that the 2 of us went to St. Louis for a weekend of romance and we kicked it off by taking a tour of the Anheuser Busch factory. Well let me state that Susan has no allergies to beer. Barley and Hops are her friend. So things are off to a great start when we decide to go check out the Clydesdale stables. Not a good decision. Susan didn’t touch or pet one of these animals, she just looked at them from a safe distance. (Kind of like how she is with me.) Well, even from that distance, she started to have serious problems soon. Within an hour her eyes were swollen shut. They were so bad that the only way she could have seen out of them is if Burgess Meredith was her cut-man.

So we aren’t going to give the equine therapy a try with Maddie. We did get a dog before Maddie was born, though. His name is Angus and he was a rescue dog. We went into the Animal Rescue League looking at another dog, but the way he looked at me, I knew I couldn’t leave him. He wasn’t a puppy and he’d been there for awhile, so his bill was about to come due. I guess I’m a sucker for underdog stories and everyone there told us he was great with kids who came there. Bingo. That was our most important factor, so we brought him home.

We figured that Maddie would soon come to love him just like we did, but it just never happened. Angus is sweet and gentle, but he has a loud-ass bark that is the worst thing ever to Maddie. We are always trying to beat someone to the door when we see them out the window, because we are afraid the doorbell will set off a Mousetrap game which starts with him barking like a lunatic and ending with Maddie in a 10 minute meltdown. It’s gotten a little better, but she still holds her hands tightly over her ears when he does bark. They are kind of like new step-sisters, still learning to tolerate each other.

Here’s the best story I have about Maddie and Angus. Check out the video.

Maddie and Mommy.

The mother of a child with autism in Canada received this letter from a neighbor. Click on this link before you read any farther.

“To the lady living at this address:

I also live in this neighborhood and have a problem!!! You have a kid that is mentally handicapped and you consciously decided that it would be a good idea to live in a close proximity neighborhood like this???? You selfishly put your kid outside everyday and let him be a nothing but a nuisance and a problem to everyone else with that noise polluting whaling he constantly makes!!! That noise he makes when he is outside is DREADFUL!!!!!!!!!! It scares the hell out of my normal children!!!!!!! When you feel your idiot kid needs fresh air, take him to our park you dope!!! We have a nature trail!! Let him run around those places and make noise!!!!!! Crying babies, music and even barking dogs are normal sounds in a residential neighborhood!!!!! He is NOT!!!!!!!!!!!!!!!!

He is a hindrance to everyone and will always be that way!!!!! Who the hell is going to care for him?????? No employer will hire him, no normal girl is going to marry/love him and you are not going to live forever!! Personally, they should take whatever non retarded body parts he possesses and donate it to science. What the hell else good is he to anyone!!! You had a retarded kid, deal with it…properly!!!!! What right do you have to do this to hard working people!!!!!!! I HATE people like you who believe, just because you have a special needs kid, you are entitled to special treatment!!! GOD!!!!!!

Do everyone in our community huge a favor and MOVE!!!! VAMOSE!!! SCRAM!!!! Move away and get out of this type of neighborhood setting!!! Go live in a trailer in the woods or something with your wild animal kid!!! Nobody wants you living here and they don’t have the guts to tell you!!!!!

Do the right thing and move or euthanize him!!! Either way, we are ALL better off!!!

Sincerely,

One pissed off mother!!!!!”

By no means do I think that this is the general attitude towards people with developmental disabilities, but it is far from unique. It made me think of a video that hit the internet last year of a teen boy with Down Syndrome who kicks a young child, which created a quick response from the child’s father of throwing a knockout punch to the teen boy. http://www.keepbusy.net/play.php?id=down-syndrome-guy-kicks-kid-gets-knocked-out

I noticed some people on Facebook commenting on this video then and almost everyone there was laughing about it saying things like I would’ve knocked the Tard out, too or Hilarious! 

I was a buzzkill, as I brought a different viewpoint. I said that I can see why the Dad was upset and I understand instincts, but he totally overreacted. The kick seemed pretty minor.

Most of these Facebook commenters continued to disagree with my viewpoint and some responded with how the Mom should have a leash on her son.

I battled it out by myself for awhile and then just let it go. I thought about the Mother who was just trying to order some food for the 2 of them. I thought of how she probably has spent her whole life trying to protect her child from himself and others. I thought of how she had no idea what had happened to cause her son to be laying out on the floor, but how her heart was broken and she was scared of what this angry, violent man was going to continue to do to her son.

I also thought about the times when my girl Maddie has been upset over someone in public making a loud noise and setting her off. I thought about how loud sounds or sudden action can be like a drill going off in her brain. How my girl has physically lashed out her own family members before when things have happened like this and how I know this same type of incident could happen to her as she gets older.

I don’t bring these stories up for you to feel sorry for me. I’m a strong motherfucker who can take care of myself. I bring it up because I hope a few of you that are reading this thinking that the letter had some merit and the reactionary father was justified, might look a little more deeply when considering people with special needs. It’s why I created this site. Let Me Help You Understand.

Maddie gives you a tour of all the things she brings to school. There is a reason she needs to bring a backpack and another separate bag with her. Madeline uses backpacks as her own personal security blanket. She wants to bring them with her whenever she goes anywhere, school or even a car trip. The more stuff in them, the better, because it feels good to her body, kind of like a weighted vest. Many people on the spectrum have balance problems because they have a difficult time connecting with their own body.

I don’t like to get technical here, because I know my brain locks up when I read stuff that isn’t based in entertainment but this is kind of an interesting element that especially people on the spectrum face.  I will discuss proprioception in greater detail some other time here, but it’s definition is this.

Refers to one’s own perceptions. It an unconscious perception of movement and spatial orientation controlled by nerves within the body.

While most of us don’t have to think about this, it’s instinctual, for many people on the spectrum they have to learn to and really focus to do these same movements we take for granted. While a heavy backpack would be a detriment for a lot of girls her age, the added weight it offers helps Maddie achieve better proprioception.

Ok, enough with the science. Let’s get on to Happy Monday Maddie.

(1st let me say that Maddie and I would appreciate if you pass this website along to any people who you think would enjoy it. Thanks.

When we last left Maddie, she was having a Meltdown Monday, as she was thrown off by not having a structured day. Maddie loves school and camps because they have a schedule that helps her make sense of the day. Well after a tough week for us, this past Wednesday brought much needed relief. Here is Happy Maddie getting ready to get on the bus. With guest appearances by Mallory and Sam.

Maddie has had a very unhappy Monday, as she has a REALLY difficult time being patient the week between camps and school. The lack of structure makes her skin crawl. This has been her general disposition for almost a week. Can’t wait for school to start on Wednesday.

…Not all the time. This is another cliche that parents of special needs kids hear. And where it is true that I am a better person for having Maddie in my life, there are plenty of moments where it has made me a worse person.

Now you brats sit still while I read this damned book to you!

My wife Susan and I were together for 15 years before Madeline came into our life. I am being truthful when I say that we had around 3 major arguments in those 15 years. For the first 4 years of Maddie, we continued to be pretty blissful, as she was such a sweet girl and we were so happy after trying for so long to have a child. Then came the twins…

Now I cannot stress enough that having twins is not a good thing. A lot of people make the claim Oh, wouldn’t it be great to have twins, then we can get out of the way having our 2 children all at once! No parent of twins has ever listened to these words and nodded their heads with a smile on their face. Here’s how I describe my duo in my standup act.

Look, I love my twins, but I call them the Dallas Cowboys. Good individually, but they suck as a team.

Imagine having 1 baby, then double that. Double the shitting. Double the spitting. And definitely double the crying.

The crying was our worst part because Maddie, like a lot of people on the spectrum does not like loud noises. As I’ve outlined here before, it was a nightmare for the first couple of years. Then it got gradually better. Very gradual.  For those of you that are curious, the Terrible Two’s do exist, especially when you have 2 Terrible 2’s. What isn’t discussed is how 3 years old is pretty much just as bad. Now there are plenty of great moments during these years and they are cute as fuck (which is the only reason you don’t murder them), but even if I take Maddie’s special needs out of the equation, having 2 toddlers is a recipe for insanity.

Despite being a sometimes foul-mouthed comedian on-stage, I’m not a big cursor off-stage. I can recall only cursing a handful of times around my kids and they don’t seem to have picked up on it, since I have never heard them repeat a bad word I’ve uttered. This is an important parenting battle. In 2 parent homes a badge of honor is not being the person that your kids picked up a naughty word from. My wife and I are still battling it out. On one of the few occasions she does curse around the kids I get a perverse pleasure out of it. You see if they pick it up from her, I will have a major victory in my column. (Susan is a great Mom, so I need all the little victories I can get to come even close to balancing the ledger.)

Now don’t get me wrong, these 3 do have me cursing all the time–internally. I am muttering under my breath some of the most vile words all the time, when I’m by myself with these 3. It’s like a steady stream on the level of Ralphie’s Dad when he is trying to fix the furnace.

When people meet me at a party they are often surprised that I’m a standup comedian because I’m not the life of the party type guy. Actually most standup comics I know are far more like this and way less like Robin Williams. While I wouldn’t call myself as laid-back, I was never very demonstrative off-stage, until having the twins. Since then I have become a crazy person. I’m constantly screaming at my kids or just the world in general. I’m continually yelling at my crew, then grabbing them and hugging them. If I only had Pasta bolognese on the stove, I could technically classify myself as an Italian mother.

So when people say to me, I bet you can’t imagine your life without your kids, I respond with try me. Some days that’s all I can hang onto.

Having multiples and a developmentally delayed child has made me reconsider people I used to condemn. Perfect example is Kate Gosselin of Jon and Kate Plus 8. I used to think this chick was a total witch, but after having just twins, I can’t imagine how insane I would be if I had 8 kids. That woman deserves to be a complete bitch. 8 kids will make you Octomom crazy.

Now that I’m reaching the end of this essay, I want to make this perfectly clear (since someday my kids will read this), I LOVE YOU AND YOU ARE THE BEST THING TO EVER HAPPEN TO ME!  Sure I even yell at you when I write, but do not judge me, as I am doing the best I can. Well, most of the time I am. As you are well-aware of, sometimes Daddy is a dick and needs to chill the fuck-out. Oh and just so you know, I learned all these bad words from your Mom.

Is it the best day of the year. For Maddie it is. August 5th is her birthday and she discusses her annual vacation week in Wisconsin, land of magic!

If you haven’t noticed, my girl Maddie is beautiful. In her case, it’s definitely a blessing and a curse. Just like beautiful people not on the spectrum, her beauty is a gift that leaves others being more patient and understanding with her. Think about how different you act when you’re at a restaurant and your server is really attractive. Most people would accept slower service and more mistakes from someone they see as attractive. I worked as a waiter for 5 years and I know that the better-looking people made better tips. It’s human nature.

Maddie came out of the womb pretty. I would take her everywhere with me when she was a baby because she was so easy to take care of, but just as much because it was fun to hear all the comments about how gorgeous she was. I knew this was kind of pathetic, but damn if it didn’t feel great hearing the compliments. In some ways it still hasn’t stopped, as I know that her beauty helps draw more readership to this site. I feel okay about it, though, as it’s just another case of a beautiful person being a spokes model for an important cause.

So what is the negative? According to a study done in 2007, 1 of 10 boys and 1 of 3 girls with special needs will be sexually abused by the time they are 18. It seems beyond comprehension that anyone would take advantage of someone like this. This is precisely why it happens so much. What better group to abuse for a predator than kids who have communication difficulties and are less likely to discuss the crime? It’s the worst fear that we face about our children and these frightening numbers sit there punching us in the heart. If having a child with developmental difficulties wasn’t isolating enough, this potential nightmare keeps us even more locked down on not letting our children out of our site.

As much as I believe having Maddie front and center on this site is important to introduce others to one example of the autism spectrum, I do question if I’m not possibly putting her in some potential harm. As parents, we (Susan and I) have spoken to her about how no one is to touch her private parts and if someone does she is to say to them that is inappropriate, STOP! Then find us or a teacher, as it’s never okay for someone to touch her private area. There isn’t a lot more you can do besides this except keep a diligent lookout for everyone. All fathers face this in today’s world, but for Dad’s like me it’s only escalated.

I know this isn’t uplifting or pleasant to contemplate, but it’s the truth of our existence. I’ve decided to go ahead and keep Maddie in the spotlight, despite these fears, but let me stress that anyone who hurts my girl will face the wrath of not just me, but the many fans and loved one’s she has. Protecting the most innocent in our society has to be our number 1 priority when it comes to law and order. It’s sickening enough that any kids are sexually abused, but when a special needs child is more than twice as likely to be a victim as a typically-able child, it screams for more action.

With Cody after the show.

One of the big transitions in my life that has occurred from Maddie being my daughter is that I’ve written a whole different standup act. My previous act which was focused on the macro of the world, (pop culture, politics, etc) seemed kind of hollow to me after Maddie came into my life. Outside of my pained relationship with my father, I hadn’t really spoken the truth of my life onstage. I didn’t even discuss being married, because I didn’t have an angle on it that I thought worked with the rest of my act. (Plus my wife Susan is a private person who was happy not to be exposed in my material.)

In the current version of my act, the first 10 minutes is from my older act, as I go for bigger laughs and provide the audience with what they’ve come to expect at a comedy club.  From that point, though, the rest of the show discusses the journey I’ve been on from trying to conceive to the changes Maddie has made in my life. Wanting to go even further, I have branched out with this show, as I want to be a voice for raising money and awareness for people with developmental disabilities. I’ve done a few of these shows and the response has been very encouraging.

This past Saturday I did a show in Louisville to raise money for the Special Olympics of Kentucky. There was a lot of time and hard work put in by a few of us to get a big audience for the show, but for whatever reasons, it didn’t happen. I push hard when it comes to any project I’m involved in and after whoring it out on social media, doing 2 radio shows, a TV show, and a very cool local podcast, we still only had around 40 people at the event. Hey, that’s still a nice amount of money raised for this cause that means so much to me and my family, but when I hit the stage, I felt a little dejected.

Now at this point I should mention that the week before the event I had decided to add another act to the bill, a magician/comic named Cody Comet. He had been referred to me from an old friend and a great magician, Taylor Martin. Cody is on the autism spectrum, so I thought it would be great to have him be part of the show.

So as I said, I went into this show thinking it was a failure of some sorts, as it didn’t reach even 50 percent of the levels I was hoping for in attendance. I got up onstage, though, and did the old “let’s put on the best show I can” thing and then I brought up Cody.

Now I had watched a couple clips on Youtube of him, but it’s hard to really judge someone as a performer from an online clip. This is definitely the case with Cody.  Now I’m not an expert on magic, but I can tell you that he has something magical. While he’s onstage conducting his illusions, what is going on with him is the opposite. Cody is totally transparent. He is unadulterated joy and passion when he’s performing.

So I went into this show feeling like it was a bit of a failure, but all it took was to see Cody onstage for 10 seconds to realize it was a triumph. The biggest goal with my show is to help others learn that people that are autistic are as diverse as people who are not, which is why I always stress the words autism spectrum. Parents of children on the spectrum often are filled with concern that our child will never be able to connect with the world. Cody was an inspiration to me, as he demonstrated how when you find something you are passionate about, it will work on a few different levels, beyond just the surface stuff that most performers bring to the stage.

NOTE: It must be stated that it quickly becomes obvious that Cody has great parents (who were at the show) that have helped him reach this point. I can’t imagine there is anything more satisfying as a parent than to you see your child achieve their goals in such  a public forum. This is why I’m such a big supporter of the Special Olympics.

I’m a fan of great magicians like Penn and Teller, the Amazing Jonathan, and Mac King, but what Cody did during his set was every bit as impressive to me. He is still early in his career and is not technically as gifted as some, but he offers something else they can’t provide. He brings pure sweetness in what he does. Call me a sentimental fool, but the pure moments of sweetness that my daughter Maddie can offer is the most magical thing in the world to me. Cody brought that to the audience yesterday and helped me put things in real perspective. Thanks Magic Man.

Postscript: The Special Olympics of Kentucky told me after that they would like to have Cody appear at other events of theirs. What a success this show ended up being, despite my initial stinkin’ thinkin’.

Here is Cody’s website

We are off to Wisconsin for our family vacation. Our dog Angus makes a quick appearance, as well.