The Ups And Downs

It was a more intense weekend than usual for Max, and this post comes from a heavy state of mind. I don’t know how much benefit this will be for the reader as it takes a pretty transparent turn at the end. If you know someone with a special needs child, I’d love it if you shared this with them. No matter what gets written here, I want it to benefit others somehow.

As I was saying, it was a pretty intense weekend. We had my entire side of the family (15 total) in our house for 2-3 days. Plus it was an NFL playoff weekend. For Max, there was maybe too much stimulus. Honestly, he did pretty good though, overall. But there were some ups and downs.

We are fortunate enough to have a resort community not too far from our house, and so on Saturday, we decided to go sledding and ice skating with the whole crew. After sledding, we were all pretty soaked and headed over to the ice skating rink. They were closed for another hour while they did their routine maintenance. We sat by the fire pit and tried to keep warm, but it was pretty uncomfortable. It was chilly enough to revisit our plan and maybe attempt to go ice skating the next day instead. As soon as Max got wind of a schedule change, the anger flared up immediately. With clenched fists and teeth grinding, he angrily disagreed. His face got beet red and the tears began to flow because he thought he wasn’t going to get a chance to skate.

After fighting with Jamie about it for a few minutes, I stepped in, got down on his level, and tried to reason with him. His autistic brain thought the schedule change meant that he would never be able to go ice skating ever again. That’s just how his brain works and its pretty disheartening as a parent. I had to calmly explain to him the reasons and assure him that if it didn’t work out today, that we would try again tomorrow. He had to ask a few more times and make me repeat myself each time. Finally, he got it and calmed back down.

And then unexpectedly, he came in for a hug. And if that weren’t enough, he ever so quietly said to me, “You always make it better.”

My heart melted. Those words brought tears of joy. Max is rarely complimentary nor thankful. So those words carried the weight of a Mack truck. And they were so glorious to hear.

Fast forward, not 24 hours later, we’re back home in the living room with most of the family present. I asked him to turn off his video game so the family could watch football. He got pretty fired up at me in front of everyone. After he got angry and threw out some rude comments, I asked him to leave the room to go have a time out by himself. Right there, in front of everyone, he looks at me and firmly says, “YOU SUCK.”

All the elation that had come from those gently spoken words the day before was instantly washed away and these new words carried the same weight. Only this time with devastation.

Fast forward another 24 hours. I had a break in the action and decided to take Max night skiing. It would be just him and me. We don’t get to do that very often, so I thought it would be really special, especially since we haven’t been up yet this year.

In the car ride to the pass, he and I got to do a fun video recording where I interviewed him about skiing, chair lifts, autism, trying new things, etc. It was really cool and actually pretty interesting (be looking for the video to be published eventually). I almost felt I was breaking through some of our barriers, and he was even talking about other autistic people.

It wasn’t ten minutes later that the topic of sleeping came up (off the record). This is the biggest battle in our home. Max has incredible fear around sleeping and the dark. I was trying to encourage him and talk through what it might look like to move from sleeping on his sister’s floor to being back in his own room, in his own bed.

It was almost as if someone lit a bomb off in the car. He was instantly screaming at me and crying, saying he was done with the night and wanted to go back home. I forced the issue, and we stayed the course and went skiing. But it was rough. He was mad at me most of the time, and we cut the evening short at 5 runs. So our father-son adventure turned about to be a bit of a bust, even after starting it off great.

I’m writing this with a heavy heart as this all happened over the last few days. There were some really fun and touching moments. And there were some hard moments. When you add it all up, the best way I can describe it is heavy.

After the dust has settled, my head goes to a few places as I process it all.

First, I love that boy so much. As mean as he is to me sometimes, I love him so deeply. If you’re a parent, you probably understand. I think though, that what makes it so heavy is that his autistic brain will never fully understand how much I care for him. The ‘justice’ side of me wants him to understand. But the ‘justice’ side of me takes away the ‘unconditional’ in unconditional love. If I’m to love that boy without strings, I can’t care if he ever fully understands the love and care Jamie and I have for him.

Second, my chemical makeup is such that I gather all the information provided by all of life’s circumstances, and the sum of it all establishes a sort of baseline attitude. I actually don’t like this very much about me. The biggest reason is that it doesn’t allow me to get super excited about the most epic moments. In the back of my mind, I know a blow up or argument is right around the corner and I have to maintain an even keel. It’s as if the ups and downs make me stay level, not getting too excited, not getting too down. But honestly, this sucks. No, I don’t want to get super depressed about the crappy parts. But I do want to get jacked up with excitement at the precious or breakthrough moments. I need a re-wiring.

Third, I need to stay in shape more than ever. Never in my life have I found it more important to stay healthy in all aspects of my being. It used to be just physical workouts. But with the advent of parenting an autistic child, I’ve had to add mental exercises, more meditation on God, nutrition, counseling, cryotherapy, mobility, and plenty of other things. It’s just what I have to do. Most special needs parents will go to the ends of the earth to find help for their kid(s). If I too choose to do that, I have to recognize that the ends of the earth starts with me. If I am to parent Max the best way possible, I have to stay fit in all aspects of my being so I can be ready for anything and everything.

That about sums up where I’m at today. If you are out there, parenting an autistic child, or in a similar circumstance, I hope you got something from this. Maybe leave a comment below and let me know.


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