Reflections & Ramblings: Volume Twenty-Eight —
The hardest part of raising a child with special needs
I recently finished the the HBO limited-series This Much I Know is True and I found it extremely moving and heart-wrenching. The show, which is adapted from Wally Lamb’s epic book of the same name, recently aired its last episode.
If you’re ever in the mood to watch a very tragic and sad story, you’ll be hard pressed to find one sadder than this. But its pace, stretched over six episodes (somehow condensed from Lamb’s 900 page book) allows for an almost hypnotic contemplation about life and its hardships.
I’m sure this show impacts and resonates with people in different ways due to the all the genres of grief the story covers, but for me the most powerful element of the story was found in the relationship of the twin brothers.
The story follows two troubled twin brothers throughout their lives. One of the brothers, Thomas, has paranoid schizophrenia and Dominick, the other brother, has anger control issues. But their lives from birth through adulthood seem consistently intertwined, and always full of hardships.
The brothers probably started out not so different from one another. The show did an incredible job showing the brothers age and grow, from childhood, to college, to adulthood, and into middle age. And as I watched each week’s episode, it felt like there was a heavy weight on my chest. The story pulled on my soul and has weighed on my mind for weeks now.
I was talking with my wife Sarah the other day about how the grief that comes from the losses due to having a child with special needs are overall fairly manageable; they have been for us up to this point at least. If people were asked to imagine the sorts of things that aren’t the same for the childhood of a kid with special needs versus the childhood of a neurotypical kid, they would probably be able to guess a lot of them, perhaps even most. And like those people, Sarah and I have been able to somewhat prepare for and predict the hardships in Micah’s life up to this point. It doesn’t really make it much easier, but at least cognitively we were somewhat expecting the struggles that come with raising a child with a rare genetic disorder .
But for me, the hardest part of raising a kid with special needs has not directly been about him. It has been coming to grips with how much it all impacts his younger brother as well.
I was personally not prepared for this fact. With Micah, I’ve been able to keep up with the emotions overall, both high and low, of his life. It’s a difficult thing to have these built up ideas of what it will be like to be a dad of two sons and then to see some of those dreams eroded away in front of my eyes. These aren’t life and death moments, but they are still significant moments where I experience loss. The loss of very specific dreams and hopes and aspirations. Moments like the one where Micah was at his basketball practice and instead of running up and down with the kids on the court as he was being coached to do, he simply stood in the middle of the floor picking his nose, totally uninterested and unaware.
There are other moments where I just feel sudden sadness because of how other kids respond to Micah. There was moment at the bus stop this past year where another kid his age said he didn’t want to be near Micah because “Micah is weird.”
I’ve had moments that somewhat smack me in the face throughout his entire life up to this point, and I don’t anticipate that going away. There was a time when he was three and a half and he wasn’t able to speak very many words yet and a mother at the playground acted surprised when I answered her question of how old he was. She responded, “Oh wow, I hadn’t realized he was that old because he he’s not able to talk at all.”
Micah was an incredibly sweet and affectionate baby, toddler, and little boy. And he is still that in many, many ways. His ability to be empathetic, compassionate, and gentle are some of the reasons why I don’t think he’s been officially diagnosed with autism yet. But as time has moved forward, the behaviors that would be considered oppositional or defiant have steadily increased from being rare to fairly common. He now he seems to throw fits at least two or three times a day. And sometimes he can be physically aggressive, especially towards Sarah. He’s thrown things and bit her a number of times. And that can feel scary and overwhelming. And it can make us feel pretty crappy as parents.
But throughout Micah’s childhood it has not simply been Sarah and I that have been observing Micah and his behaviors, impacted by the lows and the highs of each day, which often feels like riding a roller coaster in the dark. His brother Ezra, only 18 months younger than him, has been watching the entire time – learning, imitating, modeling, emulating, idolizing.
And that has helped shape Ezra into who he is today — for the better, and for the worse.
I’m still coming to understand in what ways this seems to have impacted Ezra the most, but, and this sounds horrible to say, it seems that Ezra’s worsts qualities often come out when he is around his brother. Ezra can be aggressive, and hyper, and oppositional, and kind of out of control, wanting lots of attention, which can be hard to come by in a home of thirteen people.
Many aspects of these behaviors have been either directly learned or indirectly learned from his brother. And that has been one of the hardest realizations about raising a child with special needs. And sadly the behaviors that have impacted his brother negatively have been quite obvious, while it is very difficult for me to notice and understand the positive qualities that have influenced him. And that bothers me a lot. Perhaps as time goes on I’ll get better at that.
Micah and Ezra do play with each other a lot. And Ezra, especially in these quarantine days, has Micah as his one major influence each and every day. Micah loves to play what he calls “closed way,” finding anything around the house or outside in our courtyard to make barricades and walls and structures to block paths and doorways. Usually its fairly cute, but Micah obsesses over it every single day.
Ezra goes along with playing “closed way” overall, but Micah is in his own world with it and eventually Ezra grows tired of it all. There’s only so many closed ways that one can build, you’d think, but try telling that to Micah.
Playing “closed way” keeps Ezra from playing in ways that I think would probably be more typical of kids his age. He does still get plenty of time to play Super Smash Bros. on the Nintendo Switch, and he almost daily plays with his action figures or with his Hot Wheels cars, but Micah rarely joins in with him. Micah’s way of playing limits the ways they play together as brothers and that feels like it robs something from them both, but Ezra in particular. And for some reason, the grief I experience from that really nags at me.
So as I watched the HBO show I was deeply moved by how much Thomas, the brother with mental health issues, impacted his brother throughout their entire lives.
For me there’s no way of knowing what the rest of my boys’ lives will look like. How much will Micah continue to impact his brother? How much will Micah get picked on at school for being “weird?” Ezra will have to choose whether to defend his brother or not in various situations. What will he choose to do?
There’s a scene in the second episode of the show (spoiler alert, btw) where the brothers are on a third-grade class trip to NYC to go see the Statue of Liberty. On the bus ride there Thomas goes into the bathroom at the back of the bus. Throughout the scene there’s a running narration from Thomas’ twin brother Dominick. As soon as Dominick sees his brother walk down the aisle toward the bathroom he worries that he will stink up the bus and make the everyone gag.
“He ruins everything,” Dominick says.
Thomas doesn’t stink up the bus, but as he tries to come out of the bathroom he realizes the door’s lock is stuck. He can’t figure out how to get the door open and he quickly calls out for his brother.
“It’s stuck! It’s stuck! Dominick, help, help!”
You overhear a nearby kid shout, “He’s probably poopin’ all over!”
Dominick, in narration, says, “I feel bad for him. And mad. And humiliated. Kids are looking at me, too. Not just Thomas. The Birdsey brothers, identical twin ret***s.”
The teacher quickly realizes there’s something going on in the back of the bus and stands up and walks towards the bathroom.
“What’s going on?!” she asks as she tries to get the kids under control. Dominick tells her that Thomas is locked in the bathroom.
Thomas at this point is panicked, banging on the door. The teacher tries to get his attention over the commotion in the bus, “Listen to me. Push the lock…grab the lock and flick it to the left!”
“It’s not working!” Thomas shouts back.
Dominick sits down, embarrassed and feeling helpless, perhaps ashamed.
The teacher shouts for the bus driver to pull over. The brakes hiss and the driver pulls over to the edge of the road and then walks down the aisle to the bathroom. The third-graders constantly yell and talk loudly in the background.
“You’ve got to move the bolt and the handle at the same time. Move them together, to the left!” he says to Thomas.
Dominick stands up with a little bit of hope, but Thomas is crying, and desperately saying “Please! Please!”
The bus driver determines it must be stuck while the kids continue their own running commentary saying things like “My 2-year-old brother could open the door!”
Thomas isn’t the only one who is desperate. The teacher is too, and she and the bus driver debate over what can be done. She asks if there’s any way the door can be opened. “I have a bus full of kids, we need to get on the ferry by 10:45 or we’re gonna miss it.” She says.
The bus driver tells her that he’ll call the bus company, but it will take two or three hours before it’s fixed. The teacher sighs in defeat and frustration, while the constant yelling and noise of kids continues in the background. It’s chaotic. The bus driver heads to the front of the bus and begins driving toward the nearest gas station to call the bus company. The kids whine, “Come on…we’re gonna miss the ferry!”
Dominick’s narration continues, “Everyone’s disappointed. The day is ruined.”
Soon after they are back on the road a boy starts walking down the aisle from the front of the bus. Dominick says it is “the know-it-all Eugene Savitsky, walking to the back of the bus with an idea.”
The teacher, tries to get him to sit down but Eugene quietly responds to the teacher, “Have him…push it to the right.”
The teacher quickly retorts, “Yeah, but the lock is to the left.”
Eugene calmly says, “Yeah, but maybe he doesn’t know the difference between the right and the left.”
The teacher with an attitude of whatever, who knows, maybe this kid is on to something?, gets Thomas’ attention again. “Thomas, let’s try something different, okay? Try pushing it to the right, ok? The right. The other way that you were.”
Immediately the lock slides, the red “occupied” light turns off, and the door opens. The teacher is completely relieved and looks to Eugene with appreciation. The bus erupts with cheers and applause. Thomas steps out of the bathroom, completely frazzled by the whole experience, and with tears in his eyes he looks up to the teacher, leaning into her in sad relief. The teacher puts her arm around him, giving a small hug to comfort him and let him know that it’s all going to be ok now.
She then asks Eugene, who had been sitting next to Thomas, to switch seats with Dominick so that the brothers could sit next to each other for the rest of the trip.
They both walk up the aisle, shuffling slowly in embarrassment. One little boy reaches out and gives Thomas a sweet little hug as he makes his way up to the front.
When they sit down you can see that Thomas is still visibly shaken by the incident, Dominick does not do anything to comfort his brother other than just be there with him. They sit in silence for the rest of the ride.
Throughout entire scene Dominick seems embarrassed and ashamed, looking like he wishes he could completely disappear. But he also saw Eugene step in and help his brother. There’s a sense that Dominick was moved and inspired by someone else actually caring and thinking about his brother. We later find out that Dominick and Eugene become lifelong friends.
When they get to the harbor, Thomas tells Ms. Hanker, their teacher, that he feels too nervous to get on the ferry to go to the statue. So she has Dominick stay behind with him and the bus driver. It seems like Dominick already had a sense that this would be the end result of the whole bathroom ordeal.
At the end of the scene there’s a powerful image of the ferry headed directly toward the Statue of Liberty, the two brothers sitting together on a guardrail, backs to the camera, watching it head farther and farther away from them.
Ezra misses out on experiences because of his brother. And even though they are still both younger than the brothers in the show, it already feels like this has been true for him many times. And I, well, I don’t know, it just doesn’t seem fair to me. But it is his reality. And in all of this, I have a very deep-seated fear that Ezra will give space for these lost experiences to become a breeding ground for resentment.
Throughout the show, even though Dominick loves his brother Thomas desperately, and is his greatest defender, you see moments in their lives where Dominick had incredible resentment toward Thomas. And Dominick would respond by getting back at his brother in some serious and even abusive ways. And those are some of my greatest fears as a father.
The whole show stirred up a lot in me. It made me tear up frequently, and it caused me to wonder, perhaps even worry, about what the future has in store for me and my family. Because life is full of tragedy and heartbreak — it’s basically a guarantee — and there always seems to be far more questions than there are answers.
But if I were to describe my life as a dad up to this point, my mind quickly runs to the memories of joy and the sense of privilege I have to be a dad of two young boys. They challenge me. They push me. They give me moments of pure happiness and wonder. I have the deep sense and understanding that I am a blessed man. And I am grateful.
The boys also stir up all sorts of anxiety in me as well. When they bicker or fight, or when they yell mean things at me or Sarah after we give them simple instructions or decisions. Micah also throws fits of pure rage and starts pushing over chairs and yelling at the top of his lungs. And when that happens, and they are still fairly unpredictable, I feel defeated. Sometimes Sarah and I find ourselves asking each other “Can we do this forever? Is this how it will be for the rest of our lives? Will it ever get better?”
Because maybe it doesn’t get better. Maybe it gets worse. In each time period or stage of the kids’ lives I’ve wondered if we’ve moved on from what was the best time in our lives. What if we’ve already experienced it? What if it all just continues to get harder?
Raising two boys so close in age is probably a challenge for most parents, and it’s tempting to try and relate or compare our situation to other families. But I’ve only come away feeling worse when I’ve done that. And so I’m learning to still accept our reality for what it is. It’s just that it is a very hard thing to do. I’ve learned a lot though it all, and will continue to do so.
The series ended with a quote (minor spoiler alert) spoken by Dominick from which the show and the book get its name. I like it a lot, and so I’ll also end with it here:
“I am not a smart man, particularly, but one day, at long last, I stumbled from the dark woods of my own, and my family’s, and my country’s past, holding in my hands these truths: that love grows from forgiveness, that from destruction comes renovation, that the evidence of God exists in our connections to one another. This much, at least, I’ve figured out. I know this much is true.”Dominick Birdsey in This Much I Know is True