Happy Monday with Maddie: Comedy Fundraiser Show Edition

Maddie's Special Olympics of Hamilton County Bball Team

Maddie’s Special Olympics of Hamilton County Bball Team

Today Maddie and Scott promote the Indiana Standup to Autism event on Saturday, April 26th. The show will feature Scott doing standup and Cody Comet performing his totally unique magic, with added bonus Maddie hosting. Last year’s event was a great success. Proceeds in 2014 will go to NOBLE and Special Olympics of Hamilton County. Go to itsanautismthing dotcom to purchase tix or buy Scott’s cd. It’s Pledge drive time party people!

Here is the link to purchase tix to the April 26th show at Pinheads/Britton Tavern in Fishers, IN.

If you can’t make it to the show but want to help raise money for these great charities click on this link to Scott Long’s Good Dad/Not a Great Dad CD.

Now here is Happy Monday this week.

Happy Monday with Maddie: 2014 Super Bowl edition

Maddie post-meltdown at BW-3's. See story for more details.

Maddie post-meltdown at BW-3’s. See story for more details.

When you have a child on the autism spectrum, your life changes in many ways. One thing that happens is that you aren’t going to be invited to as many parties as before and even when you are, your concern for how the party might disrupt your child (and how your child might disrupt the party) usually keeps you home, anyway.

Today we discuss the 1st Super Bowl party Maddie has ever experienced. I decided to have the party because my 5 year old twins are starting to get into sports and I didn’t want to deprive them of this American tradition. To split the difference between their best interests and Maddie’s, we just invited their Grandparents, as they know not to yell loudly when something good happens. The party itself went well, though, with any new event on her schedule, Maddie was totally on edge, obsessing on the subject and made us pretty insane until Grandpa and Grandma arrived after 5pm. Yeah autism!!!

On New Year’s Day we made a rare family excursion to the local BW-3’s to attend a University of Iowa alumni football watch. Within the first 5 minutes, Maddie had went into total meltdown, as when the Hawkeyes scored, the alumni roared. We knew that this was a possible outcome, but we wanted the twins to get a chance to experience this type of partisan energy. In doing so, we failed Maddie, though. At soon as meltdown commenced, I sprinted to the van to grab Maddie’s headphones, while Mommy tried to console Maddie. When I got back I placed them on her head, walked her to the quietest place I could find and then craddled and rocked all 95 pounds of her, until she could calm down from the shock her system had taken. It took awhile and I can’t say I saw much of the game, but considering Susan is with her almost all the time, which means an amazing amount of sacrifices, I feel like when I’m with Maddie I should take on these moments as much as possible.

This site is not about making anyone feel guilty. I just believe the truth of our family’s life is the best way for us to raise awareness and understanding. Now watch Maddie’s video. She really loves that you do.

Happy Monday with Maddie January 20th Edition

No one loves her bus rides more than Maddie. Wishing she had school today.

No one loves her bus rides more than Maddie.

On Friday our great neighbor Mike had mentioned to Maddie that they have a dance video game she could play sometime. From that moment on, this was the main focus of Maddie’s obsessive brain. Today he makes good on that offer and more, which is great because Maddie has gone stir-crazy because of having no school on MLK.

We have a great neighborhood with people who are there to look out for Maddie. Today Mike is a superstar in my book blog.

Happy Monday w/Maddie 9-16-13: Dogs

Many kids on the spectrum are very connected towards animals. A great example is the amazing Temple Grandin. Maddie doesn’t subscribe to this view, though. She has little interest in animals, as she loves people. She especially doesn’t like dogs because their potential bark hurts her very sensitive ears. Learn more today from Maddie.

Here is a standup bit I’ve done on Maddie’s relationship with Angus.

Happy Monday with Maddie: August 26, 2013

I thought it would be fun for Maddie to show you her basketball collection. This is the main thing she wants for Christmas and birthdays. Meet the opposite of Lindsay Lohan/Miley Cyrus, our girl Madeline.

Maddie Saves the Day

Time to Elevate.

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.

Happy Monday: School Holiday

Maddie Long is a 9 year old on the autism spectrum. She likes to greet people at the start of the week with Happy Monday! Each week we will check up with her on a different topic. Today is how it isn’t fun to have a holiday for a girl who loves school and doesn’t function well when there is change and structure isn’t set up for her.