#16 Ring Leaders of the Shit Show

Welcome back. For those of you who may have missed it, check out Ring Leaders of the Shit Show: Part 1

Part 2:

Disclaimer: As I was drafting this blog about our marriage, I figured it would be fair to ask Chad some questions, solicit his comments, and then provide my reader with a few quotes. Well, he wrote stuff, I tried to edit it, he couldn’t explain what he wrote, I got frustrated, he said, ‘okay forget it,’ and I wrote the whole dang thing myself.

“No relationship is all sunshine, but two people can share the same umbrella and survive the storm together.” ~author unknown

Our marriage is, by far, considerably more stressed by the day-to-day stuff, as opposed to the fact that we are raising a son with Down syndrome. Chad and I are on the same page about the bigger picture, such as Ian’s future, and how we ultimately plan to get there. Often, however, this truth is overshadowed by our constant discussions about the appropriate discipline for any given situation, whether Ian has had too much gluten, or if we should set him free to bike alone to school down the street. It is these little things that wear us down. Consistently holding Ian accountable, and staying true to our word when we request something of him, pushes us to our limits on the daily. One of us always needs to be ‘on duty,’ supervising Ian. So, many times, the only way we cope is by taking turns, so the other parent has a few minutes of respite. If we disagree about anything, it is likely over some of the ongoing, repetitive choices we make regarding Ian that are never ending. Or when we are caught off-guard, with Ian’s outright belligerence. 

Like the time we were trying to leave the house, but as usual, Ian would not comply and get in the car. We needed to be somewhere pronto, and unfortunately, he sensed our urgency. After what seemed like an hour, Chad finally had to manhandle Ian into the backseat. Before Chad made his way around the van, Ian proceeded to quickly open the window and launch himself out – a very ninja- like move, I must say. I am sweating bullets by this point, wondering if this is really how it’s going to go down. Anger over how Chad is handling this situation is bubbling up in me, yet I am at a loss for a solution. In these moments, the one who is least likely to completely lose it, puts on their superhero cape and leaps tall buildings. Yes, sometimes, it feels that monumental. Grace was trying to contain her laughter, so she was clearly not planning to be Wonder Woman. In this case, it was Superhero Chad who literally sat on Ian, while we locked the doors and windows, so he could climb over the seat to the front without even leaving the van.  Whew!  Now that took team work.

Other times, the issue is more subtle in nature but still has a great impact on all of us. One night after dinner, Ian was ignoring everyone and refused to clean up. He proceeded to eat ever so slowly, watch his iPad and talk smack at the same time. As Grace helped clean, she was visibly upset that Ian wasn’t pitching in. Grace and I agreed that someone needed to take the dang iPad away and direct him to the task at hand, yet that is easier said than done. I know she often feels that Ian gets away with this kind of thing all the time. She started berating him for his lack of teamwork, even though she is not the parent, which caused some of Chad’s anger to land on her. In an attempt to avoid conflict, Grace and I tried to reason with Ian, and warned him that he may lose a smile on his chart or the chance to have the nightly popsicle. We were unsuccessful. From our perspective, Chad was just allowing Ian to get away with not cleaning – taking the easy way out. Grace and I wanted accountability, but that is difficult to implement, when the family dynamics and expectations in the moment are not in sync. Although Grace is removed from these situations for the most part now that she’s away at college, I know Ian’s behavior – seemingly being let off the hook – always bothers her. Our continued response cannot always be, “Grace, we know it’s not fair, but we are the parents, so let us handle it.” 

Healthy communication is key, but often it is overlooked when we are all angry and tired. Grace and I felt powerless and frustrated. When we had a moment to step into the other room, Chad explained that if he took away the iPad in the heat of the moment, it would have caused more issues than it would have solved. Ian would most likely have hit Chad or thrown the iPad, resulting in the need for force, which Chad tries to avoid. We were unaware that Chad planned to talk with Ian later when he settled down, as opposed to being subjected to physical altercation. Ian is bigger and stronger at fourteen, so unfortunately Chad is the only one who is able enough to handle him. This burden has been Chad’s to bear for many years, and he stressed to us the importance of strategic timing and word choice, instead of physical action. We all learned that night to take more cues from each other, and to trust that the other person has everyone’s best interest in mind. Ian will be held accountable, just maybe not immediately, if that does not serve him or the family best. 

When Ian was born, my good friend Jenny reminded us to set aside time for ourselves, and for each other, no matter how crazy life was with Ian. We took Jenny’s advice to heart, and for years we have employed many Personal Care Assistants (PCAs) who supervise and care for Ian on a daily basis. We are also blessed to have Grace step in as the perfect caretaker. She is often more in-tune with Ian and knows him better than we seem to know him. When we leave Ian in her trusted hands, we are truly able to take much needed breaks.

In order to continue to cultivate physical and emotional connection in a marriage, there is no substitute for just being together. When we do have time alone as a couple, we often default to talking about Ian’s progress in school, his recent meltdown, or how one of us poorly handled a situation with Ian. We are ultimately striving to make life better through these types of conversations, however, spending our coveted alone time rehashing these events defeats the point. There is a time and place for this of course, but a true break from Ian is not to be spent talking about Ian. We are not really connecting with each other as Chad and Lisa, but as Ian’s parents. Recognizing this tendency, we think of more fun things to discuss, such as, ‘What was the high and low of your week?’ Or, ‘where would you like to travel for our next vacation?’ We rely on these techniques in hopes of being transported back to the light, dreamy conversations we enjoyed before kids – if even for just a little while. When we have a reprieve, we both feel replenished and ready to get back to raising Ian, with a full heart and an open mind. 

Before everybody starts thinking that Chad is always the perfect Yin to my Yang, a funny thing happened while writing this blog. Even though we work together more often than not, sometimes it feels like I actually do everything, and Chad is a clueless member of our team. Here is a prime example. Ian had finished his shower and was on a mission to eat his popsicle. Chad was in the kitchen. I figured even though he should already be aware,  I would remind him that Ian needed to prepare his things for school tomorrow, before he got a treat. Chad agreed. Yet it wasn’t 20 seconds later that I heard Ian opening the popsicle wrapper, and I realized there’s no way any of the school preparation had been accomplished. I walked into the kitchen to see that Chad’s eyes were glued to the computer, Ian hadn’t done anything, and his popsicle was about to be eaten. Startling Chad from his concentration, I sarcastically announced, “Hey, Ian is about to have a treat, and nothing is ready for tomorrow!” Chad replied, “What? I can’t keep track of it all!” I shook my head, smiled a little, and thought, ‘Yeah I do everything and you just…show up.’

It’s a known family fact that I am more in the loop regarding the coordination of Ian’s paperwork for services or doctor visits, and the oversight of his school, sports, and PCA schedule. This sometimes frustrates and overwhelms me, yet it is no secret that I like to be in charge, and do it my way. I realize my relationship with Ian as his Mom looks differently than Chad’s as his Dad. We each have our part to play on the team, like we do for Special Olympics Track. The role Chad plays with Ian, that only a dude (as they would say) could assume, is priceless. I wouldn’t change it for anything. Chad and Ian go for long bike rides, on a custom-built bike with big, off-road training wheel tires. They talk about body hair and how Ian is starting to look more like Dad. They match their superhero t-shirts on a regular basis: Hulk or Captain America is the big decision of the day. When I watch the guys head off in their matching Flash tees for another epic ride, I smile, knowing that yes, the dudes have their thing, but only Ian and I can rock a session of dancing in the kitchen. 

Chad and I may not always see eye-to-eye on every aspect of parenting Ian. I might roll my eyes, shake my head, or think, ‘once again, I did all of the work, and Chad ‘just shows up’ – but ultimately, having Ian in our life has encouraged us to grow more together, than apart. And for that, I am forever grateful, shit-show and all!

“Children with special needs aren’t sent to special parents, 

they make parents special.” ~ Unknown

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