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.
Time to Elevate.
People tell me, “you make jokes about your kids but I bet you can’t imagine your life without them.” Uh, try me. Sometimes that is all I can hang onto. –from my standup act
I’m not very proud to say this, but sometimes I resent my own 5 year-old twins. I know this statement sounds horrible, but hear me out. This problem of mine comes from my childhood. Considering how young my parents were when they had me (20 and 18), it’s remarkable how much they did provide for me, but as I’ve outlined before, it was a very dysfunctional situation. In comparison, my twins are growing up in a great suburb, on a cul-de-sac, with a life of pretty much anything they want–they get. They can’t help it, but I sense the entitlement they have to their nature, which triggers the resentment I feel towards them.
It’s nice to hear from so many people that my twins are well-behaved, but my wife and I are constantly working to improve upon them as little human beings, as they are definitely still a major work in progress. As parents the goal should be for your children to have a better childhood than your own. I know my Mom tried hard to do that for me, but life kept overruling her dreams. The most important thing to me is creating a great life for my children, but there is a nagging doubt about how good always creeping in. The nagging doubt is wondering if I’m not making my twins too soft.
My guess is this thought-process comes from growing up with a bi-polar father who often had views that reflected his split-nature. He would come home from working in the factory and tell me he would never let me follow him into that place. You can do better than that. (Closest thing to a pep talk he ever gave me.) On the other hand, he would constantly tell yell (at) me that I had no idea what hard work was and I needed to toughen up. Listen Papa Roach, you can’t have it both ways. You can’t tell me that I will never do that job, but belittle me for not having done that job. Well, come to think of it, I guess you can if you are a really big man with an explosive temper. No such thing as double jeopardy being illegal in the house I grew up with.
As an adult I sometimes have guilt for living such a soft life. Don’t get me wrong, I put more hours into my job per week than my Dad ever did into his, but comparing the level of manliness between working on a Maytag assembly line and coming up with a clever tweet are miles apart. Evolution has brought us to a point now where physical size will become less important as technology has taken us out of the industrial revolution. Even nerds have less reasons to be strong considering the advances in computers. The 2013 moder of nerd doesn’t have much chance of pulling out their back lifting an iPad, unlike the 2003 model who had to clean and jerk up a Dell monitor and tower.
I know I have wandered from my main point. It comes down to this. I’m not sure it’s that important to toughen up your kids, as it’s not as much of a hard-scrabble existence. My instincts, though, fight this potential reality. This is where Maddie is my great helper.
No matter how great my 5 year-old twins lives are, they will always have a sister with developmental disabilities. Her special needs often trump the attention they get from their parents. Susan and I feel some guilt about this, but ultimately, you just do the best you can. They might not like it, but that’s what it’s like at our house.
There are a lot of challenges that Maddie’s autism brings to their lives. Now at the age of 5, they don’t feel embarrassed by their big sister’s quirky behavior and public meltdowns, but this will change soon. It will be hard for them to recognize in the moment, but I’m confident that growing up with Maddie will inform their lives making them deeper, more caring people. It will also make them tougher, as they have went through things most of us never did as children.
For those of you that grew up with sibling(s) think for a minute about the things that pissed you off the most about your childhood. My guess is that them getting away with things you didn’t feel you were allowed to would be right towards the top of the list. I can tell you that there are things my brother did that I would’ve never thought of doing that still piss the living shit out of me. (Which I will admit is much better than pissing the dead shit of me. That really is an icky phrase, isn’t it?) Well try to contemplate what it would be like to have an older sister who is held to a completely different standard than you are. A sister who is coddled during a meltdown, while you are chastised for just talking too loudly. I’m sure it chaps their little 5 year-old rumps, but that is the way life works at our house. Total double standard as Maddie’s autism usually gives her a get out of jail free card that they can’t pull out on their way to buying the Boardwalk.
So ultimately, I need to get past my own problems about my twins not being as tough as I think they should be. They are a lot tougher than I give them credit for, as life with a sister on the autism spectrum has brought them a different view of life that they could never get from a TV show or even a great story like the one you just read:)
I’m predicting that when my twins get older they won’t agree with everything I write, but I’m betting they will buy into this one. Considering how much better of a person Maddie has made me, I can’t imagine how they could have any other view.
Really looking forward to the event we have coming up this Saturday, July 27th at the Comedy Caravan in Louisville. Showtime is 5pm. The ticket sale proceeds go to the Special Olympics of Kentucky. Tickets are 20 dollars at the door or 15 if bought in advance. Click on the event brite link to purchase them.
This show will be feature my It’s An Autism Thing: Let Me Help You Understand performance, which outlines the journey I have undergone from in-vitro fertilization to having a child on the autism spectrum. Oh and did I mention having twin babies, too? It’s a Real Reality Show. Opening the show will be Louisville’s own, Cody Clark, an illusionist who considers himself magically autistic. (Cody is on the autism spectrum)
I hope you can be part of this event which will be raising money for a great cause! Don’t forget to get the discounted ticket price at this link. Email me at insidescott@hotmail.com if you have any questions.
Clips from the show
Shorter Clip
Longer Clip
Madeline has really come to love doing these videos. Since I was traveling all day she didn’t get a chance to do her video until after dinner. She was a little stressed about this but she is a pro and came through as usual when the iPad camera was focused her way.
Maddie at 6 years old.
Beats me.
Tune into tomorrow for a more lengthy post on a different topic.
Ok, maybe I can try a little harder to answer this question. I mean I did name this site It’s an Autism Thing: LET ME HELP YOU UNDERSTAND. The problem is that I have a child on the autism spectrum and even I often don’t know what to say to another parent with a child with a similar disability. Hey, fellow parent of a child with special needs, some days really suck and some days are pretty good.
So I don’t really know what to tell you for an answer to this question. What I can speak to with total clarity is what I don’t want to hear. Here are a few examples of things people have said to me and how I’d like to respond them.
Guess what, neither do I. Here’s the deal, though. No one else is going to show up to fill-in for me if I don’t. There is no Kelly Girl or Manpower Temporary Services we can call to give us a break. Woody Allen said that 80 percent of life is showing up. Sounds about right, though I’m a little uneasy about the part of using a Woody Allen quote in regards to something that has to do with my daughter.
You are totally right. I’m a way better man than you. You see, you are what I call a selfish prick. Considering you’ve consistently run away from anything in life that was difficult, you would’ve hit the next Greyhound out of town if this type of responsibility was thrust your way. Hey, but thanks for the compliment.
Uh, thank you? (I look towards my daughter) Maddie, hold still for Daddy. (Looking her over from head to toe and then turn back to the person.) Huh. Well you know something, you just might be right. She does look pretty “Normal”. Not really sure what normal is, but I guess by the standards society has set, she does fit the criteria. Hey Maddie, guess what, you look normal. You got that going for you!
That would be alright, especially since I don’t have enough money to get someone to fix our shitty Windows based Desktop. Truth be told, though, I would prefer her to become the next Steve Jobs, as I’d love to get a new iPad, but that shit is way expensive.
Well isn’t that wonderful. I’ve got an idea to test out your love. I’m going to leave my girl with you for a month. You will get to be on call 24-7 worrying about whatever issue that can pop up at any minute. Act now and you get the extra bonus of experiencing the crippling financial burden of spending *91% more than you would on a typically developing child! You finish this task and I will believe you. It will also be good training for being picked as a participant on the show Survivor.
(*(91% figure comes from a Washington University study published in Pediatrics Magazine.)
Damn, someone has finally figured out why autism rates are exploding. Who would’ve thought that a woman running a Bedazzler kiosk at the Mall would be the one to accomplish it? And to think that the rates of 1 out of 50 people born with autism is actually way too small. According to your accredited research done at the Fashion Institute of Fort Wayne, it is actually 1 out of 1, since we are all a little autistic. Thank you so very much. You are a modern day Louis Pasteur, if his main skill had been bedazzling pill boxes and armpits.
I want to add that I never try to pretend here that I’m speaking for every parent of a child with special needs, but I do know a lot of parents in my shoes that are shaking their heads yes to my full-flavored snark. I know that people say these things because they believe they are kind comments. I also realize that by publishing these I’m making some people even more uncomfortable of dealing with me, as I put your words under a magnifying glass.
I’m sorry about that, but remember this site is about helping you understand the way things hit me–a parent of a child on the spectrum. I don’t think I’m talking out of my ass when I say that we walk around like Mama panthers trying to protect our kids who are wounded cubs. The world is not designed for our kids so we are ultra-sensitive.
Let me try to leave you with some positive things you can offer up when you meet with someone who has a child with a mental or physical disability. Begin with a smile. Then just do the basic talk you would do with a parent of a typically developing child. How old are you? What grade are you going to be in? What kind of music do you like? Oh and here’s the most fail-safe one you can offer up.
Your Child is Beautiful.
No parent ever hates hearing that one. You want to tame a Panther with a wounded cub? Throw that beautiful compliment out. Remember that many parents of kids with special needs don’t hear that often. They are used to the uncomfortable behavior that people have when they come in contact with their child. A smile and a your child is beautiful will always get you off to a good start.
Sisters Mallory at 3 and Maddie at 7
I have noticed as my 5 year-old twins get older, their lives become more impacted by their older sister on the spectrum. Don’t let the looks fool you, Mallory can be a handful, but she also fills the family roll of helping Maddie when we (her parents) are busy doing something else. I like a lot of who she is becoming…most of the time. 
I thought it would be interesting to get the perspective of a 5 year-old who has a sister on the autism spectrum.