It was a great week all in my all. My youngest son (Mater) and I had a TV night just yesterday. I held off on watching Stranger Things for the past year (I’m a sucker for wanting to have enough episodes to truly binge watch) so we knew just what to watch. Monkey had been easy-going all day and though Mater didn’t have school due to intersession, Monkey still had to get up early for the school bus. At this point the intermediate schools haven’t lined up the year-round schedules so my boys seldom have the same breaks from school. It adds to the need for sitters, but nothing is perfect, so no big deal.
We went ahead and had Monkey’s favorite meal for dinner and hung out together for most of the night, but inevitably there was a point where Monkey had to hit the sack. At this point Mater and I are three episodes deep in Stranger Things. Edge of our seats we sit as more and more of the missing story plots begin to make sense. I figure why not make it a party and get my buddy a soda and a bowl of chips to split with dad? It adds to that memorable night with dad from Mater’s perspective. He kicks back and cracks open his soda as we debate what might happen next. Before we know it Monkey is getting out of bed. It’s a normal routine, but Mater is normally getting to bed as well so he doesn’t see it. After Monkey’s third time of entering the living room to scavenge our sodas and chips I grow a little more stern and let him know it is bed time. Now Monkey doesn’t get aggressive all the time, and last night was one of those calm disagreements that Monkey couldn’t let go. The first two times. The third time, apparently, was the straw that broke the Monkey’s back. He wasn’t having it. A mild tantrum started. As he morphed from my sweet little Curious George to the aggressive host from Outbreak I began to feel the strength of his wrath. Lying down was an option, but only if I proved it was indeed going to be a reality of his immediate future. It takes some time but really requires nothing more than some patience.
Thankfully, this was only a partial transformation as Monkey just needed me to wrap him up like a burrito in his blanket and then cower to rubbing his feet like a peasant working for tips. I joke and I remind him that I know my name is, Toby. He laughs believe it or not and settles down. Done and done!
I exit Monkey’s lair only to find Mater walking down the hall with his PJ’s in hand.
Me: “What are you doing bud? He’s all set so we can get back to the show.”
Mater: “I’m just gonna take a shower and get to bed.”
Me: “But we still have a bowl of chips and a new soda to kill. Are you just tired?”
Mater: “No! It’s just not fair to Monkey”
His eyes well up and I can see how torn he is as he obviously wanted to keep the night going. I mean what kid wants to turn down a late night of hanging out with their dad on a Thursday? However, that guilt of the idea of fairness for his brother was too much to overcome. The pressure that sweet boy must feel.
It took a second, but I assured him that Monkey getting out of bed is like any other night, and has nothing to do with us hanging out. Pretty much every night it is anywhere from 1 to 20 times that Monkey will walk out, act like it’s normal to be out of bed, and then turn and go back when I say “it’s time for bed, bud”. The nights of fighting tooth and nail have passed for now and that is about all it amounts to. Thank Jebus!
Mater got over it, and we carried on to make it to midnight and/or episode six in our Stranger Things marathon. It was getting pretty good and creepy as the show’s story unfolded so I made a deal with Mater and slept on the couch while he slept in my recliner. He was relieved to know that if he had a bad dream he could wake up and see me a few feet away. It was a great night, and one that we will hold on to.
The point here isn’t that we had a night to hang out and kick back despite the fact that this alone was a rarity Mater and I cherish when they come. It’s that I always need to remember the pressure Mater must feel as a younger brother to a child such as Monkey. He has a brother, but in so many ways he mine as well be an only child. Not one of those only child situations where they are showered with attention and activities. More like one that inspires a song such as Cat’s in the Cradle. We’re together, but all activities revolve around what we can and can’t do with Monkey being factored in to the day. (If you’re short-sighted or want to find the negative in everything you read I would like to make it clear that this doesn’t make Monkey an unwanted burden, however, it doesn’t change the fact that he is a burden to the activities we can take part in.) Yeah Mater is an only child, but everything has to be filtered through the reality of what can be done as a result of his older brother. As a result I have always tried to be mindful of how that could build resent from Mater towards Monkey. It wouldn’t be something I could blame him for in many ways. We have spent many a nice summer day inside when Monkey has rough periods of aggression and rage. It would only make sense to be resentful when paintball isn’t an option, bowling is out of the question, and a bike ride is about as realistic and riding in a Volkswagen to the moon.
The beauty and damning effect of autism is both inspiring and demoralizing respectively. I’m patient and understanding in most situations, but I also have this very dominate personality. Between that and a big voice that can scare the neighbors it is kind of an interesting mix where I can be seen as the great dad or an angry person to those who don’t know any better. Those personality traits have become quite familiar to Mater over the years much like they would for any boy who keeps an eye on who their dad really is from day-to-day. I’m patient, but I have my breaking points like anyone else. Though a loud voice is the most that comes from it, I can’t pretend that I’m some always zen father despite the stress.
That’s where I see how autism has brought out the best in Mater. Here is a boy who has spent one summer after another hearing what we can’t do for fun. One day after another of building snowmen with dad foiled by the fact his older brother wont wear gloves and needs to go inside five minutes after we get out there. Movie nights interrupted more often than not by angry tantrums over things we can’t identify. Constant turmoil and interruption and this boy still stops his night, on his own accord, out of respect and compassion for his brother’s feelings. It fills my heart with love to see such a young boy act so selflessly year after year. I’m patient, but I will fully admit I get stressed. Not Mater. I have never seen that boy get angry or disappointed by the limitations we live with as a result of his brother. Never embarrassed or resentful. His bond is that of a true brother despite the reality that there aren’t many ways to bond with such a brother…. well not that I can understand. However, Mater has done it and understands it, and because of that I know he is so much more intelligent and selfless than I could ever understand how to be.
I’ll always try to field the balance between Monkey’s needs and Mater’s needs to be a normal child. I won’t always make the right choice, or see the problem heading our way, but I’ll try. What I can rely on is the immense amount of character that Mater brings to our family. People can compliment me all day on how great of a dad I am to my sons. I never take it with much more than a grain of salt. Typically downplaying it and saying something like “we’ll see when they’re thirty how well I did or didn’t do”. What I can say is that without Mater around I don’t think I could have done this well for this many years. He is the youngest person in the house and somehow he has always been the glue and the optimism that our family needs. People think about the parents of autistic children, and how tough it must be on them. I can understand why, but we deserve little credit when compared to the other children. The brothers and sisters that never get the childhood of the neighbor’s. Childhoods filled with carefree play dates and trips to ride go-karts. They truly are the strongest ones in the family. Whether Mater knows it or not there are so many times I have only had his influence to remind me that our setbacks are nothing compared to Monkey’s realities.
Mater has skipped being a normal boy as a result of his brother’s condition. It just never became a reality for him. In the process he has led this family from behind as a young man well ahead of his age. I have spent many nights wide awake worried about what will happen to Monkey when I die. Who will care for him? How will he understand that dad didn’t leave him, and just never come back? I tell Mater that he should know that he needs to live his life when he gets older. That he can’t feel guilt for his brother and let it keep him from leading a full life for himself. Good or bad I feel that is something he needs to hear to somehow relieve any guilt he may feel after being so thoughtful of his brother throughout his childhood. Something that needs to be said for Mater’s well-being despite my fears and love for Monkey. However, I know that isn’t my choice. I feel that somehow Mater is going to figure out how to overcome that and be the one to take care of his brother after I’m gone. Judging by his character and incredible smarts I see him doing it better than I have. Figuring out how to do this and still live a full life for himself.
God, I hope I am right.
Either way, that is all I can see when I think about their future. Whether or not that is true is something none of us can predict. Maybe it is just what I use to sleep at night, I really couldn’t say. Life can be hard and work against you at every turn. It can shatter any desire you have to do things the way you would prefer, and typically does. All of that being true I get so much relief from knowing that Monkey will not be alone for a lack of trying regardless of my advice for Mater’s future. That’s a debt I can’t repay. I only hope Mater doesn’t feel the pressure the way I see it all around him in everything we do from day-to-day.
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