Maddie breaks down her thoughts on a very cold Midwestern Halloween. She also discusses how she has joined a great new organization called Best Buddies and her new friend there is named Shea. Sam and Mallory offer up their points of view on what candy they prefer.
Madeline Long is a 10 year old girl on the autism spectrum. She has become a minor star among people who watch her weekly Happy Monday videos, as these fans have been taken in by the sweet charisma that she has for life. Maddie greets people at the start of the week with the phrase Happy Monday. I’m sure most of you are wondering, And what is so great about the start of the week? The answer is pretty simple. When you are someone who craves a schedule as much as Maddie does, you are confused by the lack of structure that a weekend brings and love nothing more than going back to the regimented life that school provides.
How would I describe Maddie? She’s manic in her energy levels. Her attention span is very limited. Because of these things her interests in life are active be it basketball, swimming, or pretend play. Those of you that think most kids on the spectrum are like zombies sitting in front of the TV–well spend a day with Maddie and that notion of yours will disappear. Here’s another thing that might surprise you. She’s very much a people person, as long as they are adult people who facilitate helping her do the things she wants to do. She rarely connects with peers because despite her sharing the same chronological age, her developmental age is more like a 4 year-old, so her play reflects that.
I give you this background about Maddie so you can understand how rare it is for her to display the calm nature Maddie offers up in the video below. I have seen Maddie be this way very few times and it’s always been when she is around another person with a developmental delay that is more global in nature than her own. She has no Rainman savant-like gifts, but Maddie does have an instinct to go inside herself and be the calm vessel that the person she is with needs at that point. As much as I would like to have someone to help me beat the Vegas house at blackjack, I wouldn’t trade it for the sensitive trait my girl has in dealing with people with bigger challenges than she even faces.
The other person in this video is 11 year-old Matthew. Besides being on the spectrum, Matthew was born with tuberous sclerosis. The very non-medical description is that he has non-malignant tumors that can pop up all over. When he was in-utero he had one of these tumors in his heart. He has battled way more than what you and I have had to do to survive in life. Don’t be fooled by his sweet smile, this little guy is 100 percent American tough guy. Matthew would have the right to call Chuck Norris a wuss.
Maddie and Matthew met through Special Olympics basketball. On the court Maddie is like a lot of NBA players, as her focus wavers when she is on defense, but she had a successful season as she got through the noise and distractions that in the past often had her emotionally unable to stay on the hardwood. Basketball was newer to Matthew and he struggled most of the year to even take his hands off his ears. The whole thing often just seemed too much for him, but that is one of many of the great parts about the Special Olympics. No judgments. I’m not a big fan of cliches, but I do truly believe that so much of life is just showing up and my man Matthew did, despite how tough it often was for him.
At the end of the season, Matthew’s wonderful parents invited the families of the teams to a celebration party at their house. When you have a child on the spectrum you don’t get invited to too many parties and you are very unlikely to attend anyway, as the atmosphere isn’t generally conducive for the challenges that are always at hand. This was a different type of party, as the vibe was perfect for all the kids. One player was absent, though, Matthew. He was holed up in his room the whole time. At this point I should mention that the one teammate that I had noticed during practice and games that Matthew would take his hands off his ears for was Maddie. He had even hugged her a couple of times. Knowing this I mentioned to Maddie that we should go into Matthew’s room and see if we could get him to join the rest of us at the party. The video below is what happened when we did this.
Life is much different for Maddie and Matthew than it is for typically developing kids. Having said that, what I see in this video is a 10 year-old girl who wants to be a good friend. And I see an 11 year-old boy who has fallen for the charms of a pretty girl. Autism spectrum or not, that seems pretty typical to me. The world can be so complicated, but so simple at the same time.
Scott Long is a nationally touring standup comedian who discusses the journey of his daughter’s autism during his performances. His latest cd, Good Dad…Not a Great Dad has gotten great reviews including an A grade from Under the Gun entertainment website. They said about the cd, “I’ve listened to and reviewed 52 comedy albums in 2013, but Scott Long’s is probably the one that touched me most.” The website that Scott does with his daughter Maddie is itsanautismthing.com.
The song used is titled Brand New Day. It’s by a great artist named Joshua Radin. You should check him out at his website or buy his stuff on iTunes.
So Maddie was my co-host for the standup to Autism Fundraiser I put together this past Saturday. It was truly the best event I have ever been part of. Magician Cody Comet burned the stage up so much he left it to a standing ovation. Special guest Jared Hiner passionately brought a spoken word piece that left no eye dry by the time he finished. And my girl Maddie was her sweet, charming self. We raised a nice chunk of change for 2 great charities (Special Olympics of Hamilton County and Noble), but even more, brought a show to the audience that they will never forget. I don’t mind being 4th best on the bill, as long as I’m part of a killer show like what happened last Saturday night.
More great video to come later this week, but today we feature the opening of the show.
I try to show a positive reflection of life with my daughter, Maddie, but sometimes I feel a bit guilty in not giving a more complete picture of life with her. So many parents of kids on the spectrum go through constant struggles and are in a complete place of mental breakdown from the stresses. We are no different on that front. Today shows that other side, as lately Maddie has spent a lot of her time at home out of control of her emotions. These are actually pretty mild examples, as she tends to calm down some when the camera is on. She has no problem acting out of control with her family, but does not like her fans seeing her this way:)
I had a corporate event in Fargo, MN on Sunday night and then battled a massive winter storm for a few hours on Sunday and then the whole rest of the day Monday, so I could be back to get Maddie and her twin siblings on the bus for Tuesday. Rock and Roll!
Like most people on the autism spectrum, Maddie is a very literal thinker so phrases like bags under my eyes are hard for her to process. In the video, I use my method of helping her understand it’s just a figure of speech.
I’m on the standup comedy road and won’t be back until Tuesday morning, so this is my effort at trying to bring a Happy Monday video to Maddie’s fans. This is Maddie at I believe 6 years old.
A few things to notice. Maddie still struggles with her balance a lot at this point. To protect her knees we pretty much always had her in pants, because she fell so much. She also did not have much speech at this point. Just a few basic words that we knew what she was saying. For the most part, her personality has always been so magnetic that she was able to express herself, though.
Since I don’t get any paid vacation pay, I can’t travel anywhere without working. This trip was really cool because the great Joke Joint Comedy Club was at the time based in the hotel right across the street from Mall of America. It worked great and the club helped me get an attached room so we had enough space for Maddie’s special needs, plus the twin cacophony of baby twins.
I will get try to get up a Happy Tuesday or Wednesday video this week, to make up for our lost Monday.
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
This site is about raising awareness of what 1 person’s life can be like who is impacted by autism. This autism has wide ranging impacts on that person’s family, as well. I have friends with children on the spectrum whose lives are less difficult and friends with children on the spectrum whose lives are more difficult. While I want to show the sweetness that emanates out of my girl, some days she can act like she’s filled with demons.
Holidays are a tough time around the Long house as Maddie gets thrown off her regular routine. I explain more at the beginning of this video and then I film Maddie when she is going through one of her outbursts.