A little insight about my daughter Maddie is that she has no more than a few seconds interest in TV, Movies, or Books. There is no sitting her down with Toy Story or Dora and then getting some things done for the next half hour. She’s wired to constantly want to know what’s going to happen next and it is your job as parent to find something or there’s a good chance a meltdown is around the corner. It is by far the most difficult thing about being her parent. Translation: It fucking sucks.

There are less than a handful of things she has interest in and number 1 on that list is basketball. Ever since she discovered she really liked it when she was 7, she has kept a basketball with her at all times. For the past 3 Christmases and the past 3 birthdays the number 1 thing on her list was to get a basketball. I’m not exaggerating when I say we have over a dozen basketballs in our house and garage. She actually brings a ball to school each day in a separate bag. It’s like her security blanket.

When she first got into basketball it was Fall, so when the Winter happened it posed a problem. This was the only thing she liked to play with, so the answer was to move the kitchen table back and let her dribble the ball on the small hardwood we have in that room. When you have a child that has no other real interests besides wanting you to do some type of pretend play, which you don’t have the time to do for very long, you are willing to let her make like Marques Haynes (look him up), even if it means the constant pounding of rubber on your formerly shiny wood floor.

Last year Maddie was old enough to sign up for Special Olympics basketball and it became her biggest focus for the week. Her attention span is practically non-existent, but the b-ball practice gives her something to really look forward to and the volunteer coach is great. I know for some of you that the Special Olympics is just a punchline, but I promise you that if you go to a Special Olympics event sometime you will feel more emotions (like joy, heartache, laughter, etc) than any other sporting event you’ve been to before.

Since Maddie is younger than everyone on her team, plus has such a poor attention span, she struggles with some of the elements of practice, but my girl can shoot a 5 foot shot better than anyone on the roster. (My guess is she makes 75% of her shots from that range.) I was a good athlete growing up and I’m not going to pretend I didn’t have big sports star plans for my child. I have adjusted them, but to see my daughter score a basket and run down the court with a happy smile on her face is huge.

I don’t want to give you the impression, though, that it is just an easy time for her out on the court. Maddie struggles with loud noises, which can be a struggle when the cheers happen after someone scores a basket. She had some major crying fits over this at a couple games last year, but by the end of the season I thought she had grown past it.

Last night was her first game in 10 months. She had been excited about this date since her last game. Her former early childhood teacher and the teacher’s fiancee had told her in passing at some springtime Autism event that they would like to see her play sometime Maddie had mentioned excitedly to me at least 5 times a week for the past 8 months. When you mention something Maddie, you better end up coming through, which her teacher knew. They showed up as did Maddie’s current classroom teacher.. So with them and our family, she had a good cheering section.

She excitedly put on her uniform. She walked out from her team huddle to start the game for the first time and something snapped with her. She got very emotional, crying and saying she didn’t want to play. She then went to the ground. Here is the video to give you a better idea of what I’m talking about.

After calming her down from the sidelines, Susan (her Mom) went over to the bench to try see if she would go back into the game, but it wasn’t working with Maddie. Susan told me I should run out to the Van and get her headphones, as the sound might be the issue. (For many kids on the autism spectrum, loud noises–like at a basketball game–can unnerve them. So I raced out, came back and put them on her. It still wasn’t working and she didn’t want to wear them.

I’m not going to pretend it wasn’t an incredibly heart-breaking moment. This is the most important thing in the world to her. The event that she had been aching to be part of for over 42 weeks…and her autism takes over. Autism can be like a demon, taking away from her what she wants the most.

Still crying her eyes out I took her out of the gym and walked and talked with her in the school hallway. She started to calm a little. We walked by the girls bathroom and I told her why don’t you go potty and then wash your hands. She agreed with this idea. My goal was to take some of her anxiety away by getting her mind off what was troubling her. After she came back out I told her I have a schedule I wrote on my phone with going potty and washing hands first, then you playing basketball, then you thanking the people that came to see you play and then going out to McDonalds for dinner, after. If you are able to do these, I promise you will get a carmel sundae there as a treat. This seemed to do the trick.

I will get into this in more detail some other time here, but the thing that calms Madeline more than anything is a written schedule. It’s the only thing that seems to help her make her world make sense. That might sound like a fairly easy thing to do, but just stop and think a minute what it would be like to constantly write down and plan every moment of every day for a child. It’s not only exhausting, but it’s totally impractical, as life doesn’t work that way, especially when you have 4 year old twins you are parenting at the same time. Like most other things when dealing with the autism spectrum, you do your best.

So we walk back into the gym and she is able to come back out on the floor pretty soon after. She gets up one shot that rolls around the rim and falls out. Just another reason for me to know for sure that God isn’t helping people win or lose at sports. It could have been such a Hoosiers moment for her fans, but it wasn’t to be. Considering what she was going through, this was the perfect time for a God who gave a shit about stuff like who wins and loses to tilt the axis just enough to make sure it rolled through the net. A lot more important than him helping someone like Ray Lewis get one last chance at a Super Bowl.

After a couple more trips down the floor, one of her teammates accidentally elbows Maddie in the mouth. The waterworks begin, as I walk on the court and bring her out of the gym. She is crying hysterically, which I can’t blame her for doing, since his elbow opened up a small cut and her lip was swollen. Back to the bathroom. I ran cold water on the elementary school brown paper towel, holding it up against her lip to stop the bleeding. I went through 3 towels and the bleeding was stopped enough that she could have even passed the NBA’s Magic Johnson rule.

Wiping the tears and the snot from her face, I washed my hands and then brought her back. Both my wife and I are from the school of brush yourself off and give it another try. Maddie went out there again, ran up the court a couple of times. Then one of her teammates was fouled and this girl went to the free throw line. She made both shots, which brought a thunderous roar of excitement from the crowd. It was the best moment of the night for our team. I cheered too, then noticed that my girl was holding her ears crying again.

I tried hard to put a smile on my face and then told the coach Maddie was done for the night. Maddie came over to me and I held my 9 year-old girl on my lap. It probably looked strange to most people as she is the tallest person in her class, but while she is 9 in age, her emotional and academic level is more like a 3 year old. So cradling her in my arms while we sat on the bleachers is what was needed. I said to her that I was proud that she tried so hard tonight.  The game ended soon after. I told her if she wanted to get a treat she needed to walk the line with her teammates and slap hands and say good game. We brushed away the tears and she walked the line.

This whole story took less than 45 minutes, but it seemed much, much longer. Having a child like Maddie is mentally and physically exhausting. You don’t have to be told to appreciate the small things, because that often is the best you can hope for. This is the real truth.

Our crew went to McDonalds on the way home. I was able to buy dinner for all 5 for less than 12 dollars, abusing their dollar menu. It was like I was Jesus turning 5 McDoubles into enough to feed a multitude, while still getting fries, apples and sundaes for my kids.  There was no turning water into wine (or lemonade), as water stays water to afford the going out to McDonalds luxury. At this point the kids don’t realize how cheap their parents are, but that is what we can afford. At some point my twins are going to learn how much their sister’s autism costs our family financially. I’m sure they will have moments where they resent it, but the love they have for her will override that. I know it does for me.

So on the drive home, Maddie mentions that she had a good time and asks when her next game is? I laughed like a lunatic, but guess what? I am looking forward to the next game because I know she will make a couple buckets and I can’t wait to see the joy on her face. If I’m going to be totally honest here, the smile on my face will be even bigger.