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 at 3

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.

My kids help me stay young(er).

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.

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.