I’m sure you’ve seen some of the inspirational videos of kids on the autism spectrum making shots in high school basketball games. They are great examples of how we can all can feel connected to each other. I admit I cry tears of joy every time I see one.
If you have been moved by them, as awesome as these are, let me mention that there’s a great chance you will get a number of these moments if you attend a Special Olympics event. I have explained to the people who’ve never been that you will never feel so many emotions all going through you, as when you attend a Special Olympics game or meet.
Here are a couple secrets about the Special Olympics I’d like to share.
Most of the athletes aren’t that concerned if they have a big crowd or not. They just love getting a chance to be part of the whole experience. In the sports world that we live in, this is the one place where the athletes aren’t looking for money or fame, just an opportunity.
We, as parents of these Special Olympic athletes, don’t see our kids getting to compete and have success anywhere close to what the parent of a typical child does. That is why the Special Olympics is so fulfilling to us.
If you have never been to a Special Olympics event, put it at the top of your bucket list. It’s easy to make happen and I’m pretty sure you will leave changed for the better. Do it for yourself. Watch this Happy Monday with Maddie video below for a great example of what I’m talking about.
As we begin March Madness I show one thing Maddie does in the house. She likes to pretend she is out for recess and she is a method actor, as she totally dresses up to get in character. This is a Larry Bird/Kurtis Blow/Maddie Mashup.
Here is a glimpse of Maddie at school from a couple of weeks ago. Maddie loves school, but her focus in life is very short. This video gives you a good example of it.
NOTE: I’m guessing there must be some politically correct reason for Valentine’s Day to be called Friendship Day at her school. I will get Bill O’Reilly on it.
Maddie loves to pretend she has a job. The number 1 place she wants to work is Penney’s–because it’s where her bus aide works, Lynn. It could be argued the most important person in her life is the bus aide, since she spends so much time with them on her way home.
Maddie has had a number of these aides and for the most part they’ve been great. Lynn is at the top of this list, as she has built a really strong bond with Maddie over the past year.
School systems have a lot to consider and I’m pretty understanding of this, but the thing that I’ve been most frustrated about is the how many different bus aides and drivers she has had over the past 5 years. The special needs kids love the bus more than any others, but they need a good environment to feel this way. It’s amazing to me how many times the school system has hired people for Maddie’s bus who had a sour disposition. I’m not a new-age type person, but you need to bring a positive energy when you work with kids with developmental disabilities.
I dedicate today’s video to all the great bus drivers and aides who work with kids like Maddie.
When the twins were born it became way too much for 1 person to handle. (It was actually way too much for 2 or 3 people to handle–for more on that go back to early stories I’ve written about it at this site.) So when I left town each week for my standup comedy shows, we hired a helper for Maddie who shadowed her for 6 to 8 hours on both of those days. You can’t just hire the junior high girl down the street to take care of someone like Maddie, they need to have some experience/knowledge working with a person with a developmental disability.
Over a 4 year period we had some great young women (and a couple not so great) who helped us with Maddie and became like another member of our families. We can never thank them enough, as it was a high-stress gig, in a high-stress area–the Warzone we called home at the time. Today we meet one of these people, a dynamic young woman named Brittany. She’s 1 of a kind and the planet is better for having her on it, even if she is vegan:)
At 5 with her brand new brother and sister, plus friend Rachel.
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.
With Maddie’s friends Robert and John before special olympics bball practice.
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.
Maddie loves music. Her favorites currently are One Republic’s Counting Stars and Imagine Dragon’s Demons. This is actually mellow from what she liked when she was born.
When Maddie would get very upset as a baby, we tried all types of music to calm her. Lullabies, James Taylor acoustic stuff, even classical. None of it stuck. Then one day she was upset and I turned on MTV2 to try to drum her out. Funny thing happened, though. She became transfixed by the White Stripes Seven Nation Army. I Tivo’d that song and we played it over and over. Maddie has never liked kiddie tv programming for the most part, but the first thing she ever liked to watch was this video.
From there we started playing White Stripes while driving, whenever she became upset. She would instantly become quiet and fall asleep within a minute, in her car seat. I played around with this and she added Weezer to her playlist. Her favorite from there became Green Day’s American Idiot. We would play those videos for her while she would drink her bottle, as it was the only thing that she could really focus on. From these initial bands she moved onto Nine Inch Nails, Digital Underground, and OK Go. These groups had songs with a strong beat. I’m convinced she loves the beat because it connects with her heavy sensory needs. Just watch her ROCK out when she is listening during this video.
We had no idea that Maddie was on the autism spectrum when we discovered that as a baby she had eclectic music tastes. I just thought I had the coolest little girl on the planet. Which is still how I feel about her.
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.
We really love the great support of our readers. My friend, Dar Dunbar, recently sent a cute hat and scarf to Maddie, which she has worn non-stop since.
Maddie had a tough week with all the school closings and delays. This throws off the thing that helps her stability the most–her typical schedule. Even her Special Olympics basketball practice was cancelled on Saturday because of weather, so Maddie was at her most manic and anxiety-ridden by the end of this very difficult week.
The culmination of all this stress and uncertainty came to a head with her yelling and putting on her coat and snow pants–saying she was going to leave the house. Now I think most of us as kids threatened our parents at least once that we were going to leave and never come back, but when you have a child with a lower level of cognitive understanding like Maddie, it becomes terrifying to contemplate.
Later that night I sat down with her to discuss this scenario, hoping that it would make an impact with her. The video shows this discussion. I can’t be sure if it connected with Maddie or not, but I did what I could to communicate to her how this is never an option she should contemplate.
Today’s video is dedicated to Avonte Oquendo and the people that loved him. My heart is broken for his family. I wish I could say what happened in Avonte’s situation was just some terrible, but isolated incident. It’s not.
The most important tip in helping a child on the autism spectrum is be consistent. Schedules are such a vital element to helping them make sense of world that often doesn’t. Having said that, I’m going to offer this up, too. Don’t be afraid to be silly with them.
Now I know this sounds like conflicting advice. How can I be focused on consistency, but act silly at the same time? Well let me throw this out there. When you were growing up, didn’t the teachers that you had a good time in class with–connect with you the most? Thought so. Or look at it this way. When you’re on a date, isn’t the person who isn’t afraid to be a little silly, the person who teased you just the right amount, ended up making for the most memorable night? Easy now, take it out of the gutter, I meant this in a verbal way.
Parents and Educators are always trying to help build decision-making skills in kids on the spectrum. As much as a schedule is vital in helping autistic kids learn, life rarely works on a schedule outside the classroom, as much as you might try to make it work just right. I have had a lot of people who have seen me with Maddie say that I am the perfect Dad for her. As much as this isn’t always the case, it is the best compliment someone can give me. Anyone who has spent a lot of time around Maddie will mention that she has a great sense of humor. Nature or nurture? I think both and it serves her well.
In the video I offer up today, let me clue you into a few things to be on the look-out for. In first clip notice how just the singing of happy birthday can be a little bit too loud for her. (She’s not covering her ears because the singing is that bad.) In the next clip I have all my kids blow out the candles. This is something Maddie really struggles with, as she’s still not mastered blowing out well. This is why I have all 3 kids blow, so she doesn’t get publicly exposed for not being able to do it by herself, which has happened to her at past birthdays. Lessons learned.
Now to the main feature. Watch how Maddie initially responds when I do something a bit off-the-wall (throwing my actual gift on the floor and telling my kids I’m so happy they gave me a box for my birthday). It takes her a few seconds to process, but she then figures out it’s just “Daddy being silly.” So often, people on the spectrum have a very difficult time being in on the joke. I have always connected with special needs kids, way before Maddie was born, because I wasn’t afraid to gently mess with them and create an atmosphere where they weren’t going to be excluded from having fun. Look, I’m a trained professional, but if you can do it with a smile and have some positive energy in your attitude, I think you will be surprised how much it connects.
BY THE WAY: MY BE SILLY ADVICE WORKS FOR PARENTING ALL TYPES OF KIDS. Not saying to be silly all the time, but don’t be afraid to act the fool at the right moments. The real fools are the one’s who are afraid to embrace that side of them. You miss out on a lot of life that way.
