Kids on the spectrum rarely have same age, typically developing peers who show any real interest in them. It takes a really special child who will accept the lack of connection that someone like Maddie struggles with. Today I wanted to celebrate Maddie’s friend, Sloane.

After a seemingly never ending winter break from school for Maddie, it became torturous where we live when the whole past week that followed it was cancelled because of weather issues. Maddie is almost shot out of cannon in her body language ready to finally get on the school bus. Bonus: Look for little video bomber at end.

Maddie Long loves nothing more in life than Special Olympics basketball. Today we get a “scouting report” on her game from former Los Angeles Clippers scout, Slick Popashot. Next we see a couple clips and meet the 2 awesome coaches Maddie has this season.

Maddie and Mommy.

Where we live got blasted with a foot of snow on Sunday and it reached a windchill of 45 below today, which is the coldest it’s been here in over 20 years.

For regular readers, when school is cancelled that is not a good thing. No school tomorrow either. Not great, but Maddie did pretty well for her today! Bonus for today’s video, Maddie and Sam make an appearance with her.

Maddie does not like to play with toys, read books or watch TV. Her favorite thing to do at home is to play school or pretend she’s at a sleepover.

NOTE: Tomorrow’s post I think will pretty good. It has Maddie bball highlights and the debut of a new character.

So last night our family did something together for the first time ever. We watched a game…well, at least for the 4th quarter. My twins are starting to like sports now and they sat next to my wife and I sat on our sectional. Maddie was tired and she slept next to us.  This is the first time I can ever remember in the twins 5 and a half years on this planet that we had all sat on the couch for more than a minute together. It felt good. Wow, is this what it can be like for typical families?

We are Colts fans and if you don’t know how the game transpired, they were down 28 points in the 2nd half to the Chiefs, only to come back and win the game. It was about as thrilling as it gets. Now of course, we had to mute our cheers, as Maddie has a meltdown when you yell loudly, but it still felt nice to have our whole group together. When the final tick went off the clock, I pulled everyone (including Maddie) up to hold hands and do a victory dance. Knowing Maddie was not going to be totally into this, I chose the song Turkey Time to make as our dance song, since it’s her current fav to watch on youtube. So we are singing the lyrics in a ring around the Rosie manner. It was goofy as shit, but everyone was laughing. It was the laugh of victory pulled from the tight jaws of certain defeat.

Families of kids with developmental disabilities (and especially families that have twins, as well) don’t get many moments like this. As I said, this was the first time I can remember watching a completely uninterrupted quarter of the game with Susan in over 5 years. It felt really good. I’m sure most families don’t think twice about sitting on the couch and watching a show together, but for an hour we did something that seemed as unlikely an occurrence in the Long house as us scaling Everest together.

After the celebration, Mom got up to do some things in the kitchen and within a minute of turkey time, 1 of the revved up twins bumped their head into Maddie’s nose. This set her off into a crying hysteric. I shook with anger, as it had happened because they had jumped on the couch. I had told them each of the past couple of days not to do this. Between warning them against this action and getting my typical instant sense of protective rage when someone hurts Maddie, I sternly told them WHY DO YOU DO THIS WHEN YOU’VE BEEN TOLD NOT TO! I continued to rant and rave at them, as they look very sorrowful at me.

At this point, Susan tells me that I’m overreacting as they (twins) were still excited from the game and it was an accident. She also added that Maddie was fine. She was more tired than hurt, which makes her more edgy and likely to have a meltdown over the smallest thing.  Well, I can’t tell you how good it feels to have your wife tell you in front of your kids that you are overreacting and that you need to calm down. Top of the fucking world!

I cool down after a few minutes and then as the night goes by, I start to realize the worst possible result. My wife was right. I then thought about how much harder in many ways my twins life is. How their sister’s special needs often create a stress around the house. They are held to a higher standard than their sister, even though she’s twice their age. I felt like a total dick as I went to bed last night. These five year-olds had just had a moment with their parents that others have happen all the time and right after this rare moment they got an unwelcome bonus–an angry father lecturing them on what they did to hurt their sister.

I know I seem very calm in the face of the storm when I post a (Not S0) Happy Monday with Maddie video. Surprise! That isn’t always the case. I do a pretty fair job overall of keeping my cool, but I have my own meltdowns. It’s interesting how Susan and I were pretty calm people before the twins were born. I mean both of us grew up in a White Bread Protestant existence, so showing our emotions on our sleeve was not something that seemed part of our makeup. Well circumstances changed that. As calm as we try to stay, since the twins were born, we yell at almost the same rate as a High School Line Coach.

I apologized to my twins this morning, but I feel like I need to make a public version of this. Sam and Mallory, I love you guys, and Daddy tries to do his best. As you guys and your sister get older, things seem to be calming down around our house. Hang in there. I think Daddy will start to control his emotions better, too.

Plus a resolution that we need you to join us in.

Halloween 2006

Maddie and I want to thank everyone who checked in here from the beginning. For a site that started on May 10th, it is off to a good start. I have some different ideas for next year that I think you will enjoy. Please keep spreading the word about itsanautismthing, as I’m proud to say that it’s made a difference in helping others get a better perspective on people with developmental disabilities.

WORDPRESS STATS FOR 2013

Crunchy numbers
A New York City subway train holds 1,200 people. This blog was viewed about 8000 times in 2013. If it were a NYC subway train, it would take about 7 trips to carry that many people.

In 2013, there were 80 new posts, not bad for the first year!

The busiest day of the year was August 20th with 188 views. The most popular post that day was This is Not an Isolated Thought..

Maddie and Daddy on Xmas Eve.

I thought I would put together a starter kit for people who have never seen a Happy Monday video. Here are a few sides of the girl I love with all my heart. If someone wanted to get a quick sampler platter of a beautiful girl with autism, I think they would find this to be a good start.

This past summer I did a show that I will never forget at the Comedy Cafe in Milwaukee. I wrote about it here, but a brief synopsis was a woman in the audience I had a dialogue with who I quickly surmised was on the autism spectrum. Because of my having Maddie in my life, I took a kinder approach to her and it ended up becoming one of the best shows I’ve ever been part of.

One of this woman’s friends who was attending the show with her is a professor at Marquette University. She asked if she could use some of my standup clips and some of the video from this website in her Introduction to Philosophy class. I told her I would be honored and it seemed to really connect with her students.

Here is the video they sent to Maddie afterward.

I will tell you that this video brought tears to Susan and my eyes. It was incredibly moving to know that this site has reached people from different countries and cultural backgrounds.  I cannot thank Jennifer Marra enough for her efforts in bringing more awareness to the subjects of standup comedy and people with disabilities. Here is in her words how the whole project came together for her.

I teach an introduction philosophy course called Human Nature. This course is designed to cover a range of considerations for what it means to be a human being – topics like mind versus body, spirituality, social interaction, and questions of free will. Throughout the semester we studied the history of philosophy and what various philosophers believe are the essence of the human being; rationality, a soul, a free will, etc. In the final unit, the social unit, I spent a week on comedy. For most of my students, my class was their first exposure to philosophy, and throughout the course I did my best to make sure they not only saw the relevance of the topic, but were able to relate the questions and concerns of the philosophers to their lives. Comedy is the best way to do this. In refocusing away from the abstract and not so easily accessible to the concrete and highly accessible, the plan was to show my students that not only does philosophy happen everywhere, even in the comedy club, but also that the questions we had been asking have very important implications.

I first showed them clips of stand-up comedy and asked them to analyze them in terms of the theories of humor we had learned. Then, I asked very generally about ethics and humor and if they believed a joke is always just a joke. With these ideas in mind, I played a clip of your stand-up (you are talking about Angus, then transition to talking about the R word). Afterward, I asked their impression of this. Is this what we expect of comedy? Can comedy be serious? Was this an appropriate use of the stage? I then told them that I knew you and that you and Maddie make videos together. I showed them a Happy Monday video and asked again about your use of comedy to talk about raising a daughter on the spectrum. At the end of class, I asked them to reflect on the semester and consider whether any of the philosophies we had learned accommodate Maddie or others with special needs. All semester (and very commonly throughout the history of philosophy) we were talking in abstract terms about what it means to be human, and making sweeping universal claims about what consititutes personhood. But were we really getting to the core of what it means to be a person deserving of respect or consideration, or were we being exclusionary to a fault? We had talked eariler in the semester about how Aristotle’s philosophy was used to exclude slaves from personhood and classify women as subhuman, how the way in which someone defines human being can be used to justify atrocities like the Holocaust, and how even religious leaders excluded some from moral consideration because their definitions were so narrow. But while we talked about race and gender, we had not yet talked about special needs. You and Maddie allowed me to work this into my course as a very serious consideration in a very nonthreatening and non-confrontational way.

In class my students weren’t very vocal – a few here and there expressed opinions but many sat in the most contemplative silence I had seen all semester. It was later that night and over the next two weeks that they began to send me emails or talked to me privately about that lesson. Not only did this stick with them, it got them thinking about the topic long after the class was over. Many just asked me to tell Maddie hi and to thank you. Others were much more detailed about how they were affected. One students didn’t know what autism is, and we spent some time together doing research. Another emailed me to tell me he was a member of the Best Buddies club at Marquette, a sort of Big Brothers/Sisters group that teams up students with people with special needs for fun events. Another student told me with tears in his eyes how when he was younger he called his friend the R word at a restaurant without realizing that sitting right behind him was a little girl with Downs. He’s never forgotten it.

My students were more than happy to make videos, and I’m impressed at how many responded given that it was so close to finals at the time. I’m so proud of them, and so glad you and your family enjoyed it. Especially Maddie.

This is super long winded, but I felt it was important for you to know the impact of the videos for my class, not only for my students but for me as their teacher.

Jenn

We had a long night, as Maddie woke up at least 5 times last night. Tough night to not let your mind wander. Maddie discusses this and most importantly, we see her Santa gift…Her 20th basketball. She was so excited about it you would think it’s her first. Add to this her 30th backpack and she was totally fulfilled. (Hey, if you like Pizza, why eat something else you don’t like as much?)

Happy Holidays from itsanautismthing.com

Do you ever feel less than important? Well, no longer should you have that feeling. Many people would love to receive this holiday letter from me, but you are the chosen one’s!

As much as I’ve enjoyed being a standup comedian, this is the first year in my career that I’ve really felt like I was doing something special. The 1-man show I wrote about the journey of being a parent of a child on the autism spectrum I’ve converted to my standup show and it’s really connected with audiences. I had success in doing this show as a fundraiser for developmental disability charities, which has been very rewarding. I’m proud to say I raised thousands of dollars this year for a few organizations that do some great work.

Branching out from the stage show, I built a website with some major help from my friend, Ken Arneson. Itsanautismthing.com has grown steadily starring my girl and her Happy Monday with Maddie videos. Elementary schools, University classes, and even police training groups have used the website to better understand what life is like when you have a disability. If you haven’t checked it out yet, what the hell are you waiting for? itsanautismthing.com

I released my newest comedy cd, Good Dad, Not a Great Dad, in late November on Rooftop Comedy Records. (They were great to work with.) I’m proud of how it turned out, as the cover I think is pretty awesome and I think the material isn’t bad either. It’s sold pretty well, so far, which is fairly remarkable considering we are in the age of the free download.

My standup calendar has never been more busy, so that is great. It was needed because after a decade of writing for the NFL on FOX I finally faced the chopping block. Combine this with astronomical health insurance increases, Susan (me wifey) bumped up her hours at her job to qualify for the health benefits at work. This insurance covers way less and is still very pricey, but so far it’s enabled us to keep the roof over our head. Yeah for us!

At the home front a beautiful thing happened. In August Sam and Mallory (twin terror) began full-day Kindergarten. I’m not Catholic, but sweet mother of Mary was that a Godsend. Maddie has been her up and down self, but she has been greatly aided by the iPad, as it’s the first thing that she likes to entertain herself with. She also has enjoyed the new stardom the website has brought her.

I would suggest you take a look at the link here, as it gives you some of the visual highlights of 2013. It’s our version of a holiday card from the Long’s.

I hope you are having a great holidays and don’t be a stranger.

Scott Long
http://scottlongcomedy.wordpress.com/