Doors and Damage Control

The poets, dreamers, and optimists in general say that when one door closes, another opens. Maybe this is true, but sometimes a closed door isn't about new beginnings. Sometimes it just means, "Stay out. Don't go in there. Fair warning."

A few nights ago, Ben had a meltdown about something--could have been anything, really; I don't recall what started the incident--and to express his frustration he began opening and then slamming shut his bedroom door. Over, and over, and over: slam... slam... slam... slam... slam... slam... You get the idea. Most kids do this a few times and then move on to something else. Autistic kids (mine, anyway...) do this for hours if left to their own devices, until you feel you might spontaneously combust. In response to the relentless slamming, my husband did what he's done with all the kids when they behave inappropriately in their rooms: he went upstairs to Ben's room, extracted the pins from the door hinges, and removed the door entirely. He leaned it up against the wall outside Ben's room and then glanced at the disaster Ben had created behind it: an enormous tub of legos had been dumped upside down, clothes were pulled from the dresser and flung about the room, and a few other books and toys had been strewn across the top. As disasters go, this actually wasn't one of Ben's worst.

Until the door was removed. At that point Ben truly lost it, and in an instant was clearing off the top of his dresser by the armful, sweeping every single toy and tool and tchotchke onto the floor while intermittently screaming and then breathing like a Lamaze coach. Chris pulled Ben away and moved him into the doorless doorway just before Ben got to the tv and blueray player that sits on the far end of the dresser. Being physically touched and relocated did not go well with Ben either, and so he began swinging his fists and kicking out at anyone and anything nearby. There was no reaching him at that point--for the time being, he was no longer in the room with us.

The commotion brought my 16-year-old son Zach up from the basement, and as soon as Zach heard Ben's breathing pattern and saw his behaviors, he jumped into action. Zach quickly and very quietly wrapped his arms around Ben, drew him into the hall, slunk down against the wall with him, and began whispering: "Shhh. It's ok Ben. Shhh. It's ok. It's ok. Shhh." Eventually Ben stopped struggling enough that Zach could start talking to him about a computer game they like to play together sometimes, and within a few minutes Ben sighed deeply, laid his head back against Zach's shoulder and the storm was over.

I wish I were a painter, so I could capture that moment on canvas: a narrow, half-lit hallway, a teenage boy with a lost, struggling child in his arms, sitting next to a crooked door that leans askew against the wall--a door that is closed and open at the same time.

Both Zach and my 14-year-old daughter Izzy (and sometimes even my 11-year-old son Joey) have learned now that when Ben melts down, the only solution is a quiet and gentle one. As much as Ben's tantrums make us feel upset, and scared, and frustrated, and angry (especially when the meltdown involves punching and spitting on us, as it often does), the only way to bring Ben back is to do exactly what Zach did the other night. What I feel most grateful for is that my older kids have joined in on this solution. Because, when Ben is upset at me or my husband, we can no longer calm him--he simply won't respond to us. If we try to touch him, or speak to him, he reacts violently. But in these situations, he will often now (this is a relatively new development) allow one of his older siblings to draw him close and help bring him back.

Watching my older children as they learn to take care of Ben in moments of crisis is actually quite miraculous, and the journey to this place has been a long one. For many years, the older kids haven't understood why the rules seem to be different for Ben, and why he doesn't receive the same consequences and responses to his behaviors that they get. It's taken a long time for them to begin to see that as much as we all want Ben to be the same, he just isn't. And as a parent I feel a great deal of love and respect for my older children as they are learning to embrace their youngest brother in spite of his differences and his challenges.

Speaking of challenges, Christmas shopping for Ben this year has been one. Most parents (including me when I'm shopping for the older kids) ask themselves questions like, "Will my child like this present? Will he/she have fun with this present? Will he/she use this present for more than a couple days?" These are normal questions that normal parents of normal kids always ask before buying gifts.

This year, as I shop for Ben, I'm asking different questions:

"Will this present break when Ben gets angry and throws it down the stairs?" "Will someone be injured when Ben hurls this present at them?" "Will this be a present that helps Ben feel calm and focused, or will it agitate and upset him?" My questions as I shop for Ben are only partially about whether he will enjoy the things I get him, and are equally about how much damage control I will need to put into place when the inevitable meltdowns occur.

Autism is a door askew. Would I want to close it entirely? I don't think so. We all have challenges, and we all face various trials in our lives. Ben is no exception. His autism brings a fair share of complexity to our family, but at the same time, it brings wonderful things like unity, and love, and patience, and understanding that in some ways make our family unique. Maybe the door doesn't open and close at all. Maybe it leans against a wall, and we with it, while we hold Ben in our arms and whisper quietly, "Shhh. It's ok. Shhh." Maybe we could all use a door like that.