Parenting Disability

It was supposed to be peaceful Saturday. Almost Christmas. Not much left to do thanks to my amazing wife. We looked forward to a simple day. Time together, hanging out on the couch. A welcome and rare thing for us. That’s part of the deal when you have seven kids, not much downtime typically. We also looked forward to the Notre Dame football game that was set to begin at 4. We all look forward to the tradition or routine a football game brings to the day. I think we both love how excited our 3-year-old gets too. A little normalcy in a crazy life and crazy year.

Reality set in around noon. The crash of a large Pyrex bowl shattering as it hits the floor brings us back to reality. If something bad and unusual is going to happen, it is almost always going to involve the younger of the two 11-year-olds. Let’s call her Child 2. Glass was everywhere. We reacted perfectly. No big deal just an accident. I won’t let this “accident” mess up the day.

My wife and I go into cleanup mode. We are experts and a sight to behold. Get the little ones. Sweep it. Vacuum it. All set in a matter of minutes. We are incredibly efficient. We are very experienced. We will keep the peace. We will ignore the fact the bowl dropped because Child 2 was pissed we asked her to eat lunch. We have to encourage her to eat because she continues to lose weight. That’s over, all is good.

About 15 minutes later we must intervene between Child 2 and the other 11-year-old. Let’s call her Child 1. Child 2 has gotten her feelings hurt, again. Child 1 does this deliberately and far too often. We need to address this. Child 2 needs to know we have her back. It’s really hard to talk to Child 1 about these things though due to her trauma and maybe FAS. It tends to be very frustrating and we are unsure if she understands the pain she causes. It’s very difficult to know how to parent her. What words to use. What is the right amount of force and disappointment? How much follow-up reassurance is needed? Will this ever get easier? Will she ever feel like our child?

We made it through. It’s hard and stressful, but that is really relative. This is typical for our life, so we know how to grind through very difficult situations. We are still primed for a relaxing afternoon. Take a deep breath and move on.

Yes. We made it. 4pm. Game time. Bonus, the 1-year-old is down for a nap. Our 3-year-old is ready for the game. This does feel like a nice break from the day-to-day grind.

We are into the second quarter. The game isn’t going well for our team. I don’t really care. One of the few areas I’ve matured in over the years.

The doorbell rings. Ok no big deal. Probably the neighbor kids. Nope. Child 1 and Child 2 are screaming from the front door, IT’S THE NEIGHBORS. (Our neighbors are a great couple. They are a little older than us, their kids are long out of the house by now.). The screaming at the front door is a little embarrassing, but very much expected at this point.

I get up to answer the door. My wife is getting the 1-year-old up from her nap. Our neighbors are very nice. We aren’t close, but they have seen us outside many times this summer and we have talked on a number of occasions. They know we have a big family, and we have big challenges. They don’t understand the depth of the challenges, but they are aware of the issues. How thoughtful. They stopped by to bring us a Christmas card and homemade cinnamon rolls.

We are chatting in the doorway. It’s a little odd that both Child 1 and Child 2 are standing on our stairs inside the doorway while the adults talk. It’s not really surprising and I’ve learned it’s better to ignore than to say anything. All is going well.

We show our neighbors around the house a little. We have made a number of changes they were curious to see as they know the house well. Within 5 minutes of our neighbors coming in, our 9-year-old makes an appearance. Let’s call him Child 3.

When Child 3 makes an appearance, with company around or not, sirens go off around the house (not literally). We immediately move to DEFCON 3, maybe 4. With company of any kind, family, neighbors, or neighbor kids, we go directly to DEFCON 5. My wife and I seem to have developed hypersensitive sensors in our brains that help us navigate when he is around. The only question we have now is how crazy will this get? There is no hope for a reasonably normal interaction. There is nothing left to do but pray – pray no one gets hurt and we aren’t too embarrassed when all is said and done. It’s kind of like watching a funny (or sad) tv show and we are the stars. Buckle up!

He’s clearly ramped. The standard 0-100 mph is less than a second. My wife and the neighbor lady are in the dining room, while the neighbor guy and myself are in the living room. In just a couple minutes he gets his hands on a spray bottle. He sprays everyone in sight. Luckily, he misses the neighbor lady. I’m still in the living room listening intently while still trying to appear engaged in our conversation. I’m waiting for my wife’s call to intervene. Wait, what is that noise?

Why the hell is someone emptying ice cube trays right now? This was clearly not a visit where a drink needed to be offered to our guest. Immediately my mind runs through the standard scenarios. Who could be doing this at such an inappropriate time and within a couple feet of where my wife and neighbor are standing? Child 3 is not capable of emptying the ice cube trays. It’s only Child 1 that would do something like this. Why would she be doing it now? It’s actually very simple. Anything new is the best thing that’s ever happened to her. She can’t miss a minute. Four adults shooting the shit is amazing.

Child 3 has moved to eating. At his last psych visit, I heard a new term – hunger aggression. Why wouldn’t he have that too. He gets an apple sauce. He’s a gentlemen’s so he offers one to our 1-year- old and one to the neighbor lady as well. She politely declines.

The apple sauce goes down smooth, just like that shot of whiskey I desperately want to dull this pain. I work my way into the dining room area to try to better monitor the situation. I’m just in time to hear him tell our neighbors how he doesn’t sleep at night and sneaks down and steals things. Both comments are accurate, so how can I be mad?

Now he’s found a large red bouncy ball (thanks grandpa for winning that damn thing). He is running around the dining room table like a maniac. The sounds coming out of him are unworldly. The chaos is reaching a tipping point it seems. Luckily Child 3 disappears. Where did he go? I’m not sure, but we are moving in the right direction.

Child 1 is now summoning me from upstairs. She tells me Child 3 is using the spray bottle to spray the walls upstairs. I apologize to the neighbors and excuse myself. I don’t think they understand this apology. This one is meant to be a blank check. I’m sorry for everything that has happened and everything that is about to happen. It’s also a signal for them to leave.

The most poignant moment happened around this time. The neighbors were telling us they were headed to their friend’s house after this visit. My wife instinctively turns to me and says, “wouldn’t it be nice if we could have friends?”. I instinctively respond with a yeah, that isn’t going to happen anytime soon. We can see this statement catches the neighbors off guard. My wife immediately begins to explain our situation in a little more detail, so they can better understand why she would say such a thing. We like when people have some understanding of how the disabilities our children face feel like they turn our home into a prison. The locks on every door and most cabinets help to hammer home the point.

We rarely say things like this out loud. It catches us both off guard later in the night. It’s a brutal truth we choose to not speak into the world most of the time. We generally keep those thoughts private. Locked down between her and I. More than anything I think it’s a survival technique that we have mastered.

I head upstairs to deal with Child 3. I’ve learned over the years that trying to take the spray bottle away immediately would be a catastrophic mistake. We distract and pray. Communicating with him sometimes requires a special language and always require insane amounts of patience. I’m lucky tonight. I get the spray bottle away from him after lots of communication about random apps he likes. Most important he is not mad. Everything is ok. I head back down and try to pretend I’m a normal adult.

I find the group in the basement chatting. This seems good. Normal. Just the two little ones and the adults. Totally normal. We are shooting the shit about plowing the driveway. Will I do it myself? Hire someone? Hey who mows your yard? This I what normal adults do right? Just then Child 2 sprints down the stairs to tell me Child 3 is threatening to throw his iPad (most prized possession) and himself over the upstairs railing. It is unclear what order he was planning on. I very quickly apologize again, for everything, and run back upstairs to what feels like my second full-time job.

He quickly informs me he does not want his iPad anymore. I remind him we played this game several days ago. He didn’t want the iPad and within minutes he came out asking for it again. His brain is so messed up, it’s painful to watch. Reason never works, so I am forced to take the iPad with me.

I’m not dumb though and I do not want him back downstairs. I stand outside of his door with the iPad and tell myself to give him five minutes. If he doesn’t come out, I will head back down. In less than two minutes he pops out asking for the iPad. I hand it over and say one more prayer – please don’t come out of your room again. His brain should be studied. Will this nightmare just end?

I head back downstairs and realize the neighbors are gone. Thank God! Emotions now are allowed to be felt. Our heads are spinning. Our two neighbors coming over to say Merry Christmas turn our house into total chaos – immediately! They were here for maybe 15 minutes, but it felt like hours. Each of the adopted kids put their disabilities on full display in a very short amount of time. It is really hard to see and believe. I promise it is much harder to live with each day (for them and us).

My wife and I decompress after the kids are in bed. We deal with the stress and sadness. We are reminded of many things. This is why we rarely leave the house. This is why there is stress around every interaction with people. This is why we have few friends that “know” us and certainly none that come to the house. We are reminded why we have so many rules and so much structure. It’s also a reminder why we fight like hell to keep the peace. It’s also a reminder that every time we let our guard down, we are disappointed.

I feel all kinds of emotions tonight. I feel anger and lots of it. I’m not ashamed of this anger. I feel sadness. Sadness for how limited our lives have become. Sadness that having people over and leaving the house is something I don’t look forward to. Sadness that literally anything outside of our very restricted normal will fuck up the day in a major way.

I’m also sad that these kids struggle in the most normal of situations. It’s hard to see their future and have anything but anxiety and fear. There is not much they won’t struggle with every day for the rest of their lives. This reality always is starring us in the face. We are pretty good at ignoring it most of the time.

I feel stress. I feel exhausted. I’m tired of having to be on all the time. There are no breaks from this kind of parenting.

I’m committed to finding my win though. There are always wins. Today it’s actually easy to find those wins. I spent quality time with my wife and little ones and that is always amazing. I put my 3-year-old to bed tonight, which was such a sweet experience. I will miss them when I get older. I chose to get a little cardio in as well, which is always something good for me mentally.

As I type, my wife is snuggled up to me on the couch sleeping soundly. Days like today take a major toll on us. Sleep helps! We both enjoy the peace of her falling asleep on me on our couch. I know we will be ready to attack another day tomorrow. I also know it won’t be easy. In about ten minutes, we will go to bed, together. We always go to bed together. Our bed is our safe place, our place of peace. Going to bed together every night, together is something we look forward to and will always fight to protect. No matter what bullshit goes down during the day, and there is often a ton of it, we always go to bed together. Together we can get through this and live an amazing life. We know we have each other’s backs. We also know that our love is unmovable. There is no amount of chaos that can close in on us that affect how we feel about one another. We take great comfort in that strength. When we have days like this, I think of “our song”. Jack Johnson’s “I Got You”, and specifically these lines:

This weight’s too much alone
Some days I can’t hold it at all
You take it on for me
When tomorrow’s too much
I’ll carry it all
I Got You
And when tomorrow’s too much
I’ll carry it all
I Got You

We will find a way to win tomorrow too!

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