It happened so fast.
Usually I can pick up on the signs and have time to redirect or move us to a safe location. But this time, I missed all the signs.
We were sitting, breathing in the September night air, enjoying the last few moments of one of Knox’s baseball games.
Brian had to miss this game because of a conference he was attending for work.
My parents had come to the game, but they had to leave early.
No sweat, though, because Tobin was locked in on searching for images of cars on Safari and had enjoyed the game so far.
But I missed the signs.
I didn’t realize how much the glitchy technology had been frustrating him. Looking back I see them now, but at the time, I didn’t realize he had reached his max capacity. And with no way to communicate to me his frustration, it makes sense (now) that things spiraled so fast.
One moment I’m laid back soaking up the ballgame. The very next moment, my phone is tossed and Tobin is on the ground, transforming from our sweet, precious boy to a tornado of emotions.
It’s challenging for me to explain what these meltdowns are like.
Because he truly does transform. He’s not himself. He’s buried down, lost within the fury that has taken over… fury that becomes thrashing and biting and pulling hair and lots and lots of screaming and crying and kicking.
When I’ve been vulnerable enough to describe these moments to others, I usually get one of two reactions: 1) shock and horror (in which case I feel the need to immediately backtrack and explain how wonderful he is and how these moments are reflective of autism and not my sweet son) or 2) dismissal and/or comparative stories that don’t really compare (both of which leave me feeling unheard or unfelt or as though the person thinks I’m over-exaggerating).
And the truth is, both are correct. These meltdowns are BOTH: They are absolutely awful and absolutely NOT my son.
But that’s challenging to explain or communicate. Even to myself in the middle of one of them.
With Tobin, there are tantrums and there are meltdowns.
Tantrums usually precede a meltdown. Tantrums are the beginning, the start of communicating the frustration. Tantrums can often be redirected or calmed. But a meltdown? Meltdowns are different.
In a meltdown, Tobin is gone and there is no turning back. And for me, when Tobin has a meltdown, I just have to wait it out and let it run its course.
I feel so helpless.
So Tobin’s in the grass. And he’s lost somewhere deep within the thrashing and lashing out. I’m on the ground with him, my only goal is to protect him from himself, to keep him safe. I’m locked in on his eyes, holding his hands/arms that keep trying to escape my grip and reach for my hair. He’s screaming and my heart’s pounding and I’m trying to keep my cool, and his arm escapes and his hand gets tangled up in my hair. I leave one hand holding his other arm and while I’m trying to get the other hand untangled, he lunges to bite my arm.
We’ve done this dance before. Many, many times.
But never in front of so many people I know so well, people I live life with. So many people as our audience.
All I can think of is how to keep him safe. And I know he’s moved beyond comprehension, beyond tantrum mode. I need to move him. But my car is so far away.
Knox is wrapping up his ballgame. And I have no one to help me.
Heart pounding, I feel another hand reach in and wriggle his hand free of my hair and I look up.
She begins talking softly and calmly to Tobin, “Hey, Tobin, you’re okay.”
I look up but no words come out. “Try holding him like this,” she says, and shows me a better way to restrain him. And the realization of her years of experience with special needs children sets in. We work together to reposition him.
He’s not calming down, only getting louder and more physical—and I’m getting panicky.
“Let’s move him,” I say.
We pick him up together and move him behind a shed, for privacy and more grass for cushioning. As we transport him, there is more thrashing and lashing and when we reach the shed, I get in place to restrain him and Tobin screams, throws his head back, and spits out a wad of my friend’s hair.
And I can’t help the tears. “I’m so sorry,” I say.
But she doesn’t miss a beat, “They’re going to turn the lights off on us.”
I have no idea how much time has passed. All I can think of is getting him to the car. And the car is a mile away. My heart is pounding in my ears and I’m trying to think past tears while my son thrashes under my hold. He’s getting so big. So strong.
“We need to get him to the car. Because I have no idea how long this will last. I’m not very good at resetting him, and these can last—well, really long.”
(At least I think that’s close to what I said. Things are a little fuzzy in the emotion of the moment.)
In these moments, I can’t adequately explain what I feel and think. It’s a mixture of so many things:
And it all gets wrapped up in a big dose of helpless tears.
But usually I get to feel all these feelings in the privacy of my home.
Or my car.
Or in the midst of people I don’t know.
I’ve always feared this moment would happen in a situation like this. The anxiety always grips me when we brave outings in my small town… when Tobin draws near to a child’s toy, or wanders over to meet a new person—what if he gets upset? What if I can’t calm him down? What if he hurts himself?
Tantrums I can deal with. Meltdowns? Really hard stuff.
I want to keep him safe. And Tobin is lost somewhere deep down. And I don’t know how to bring him back.
A friend in special education once told us that when a child is in a meltdown s/he loses 30 IQ points.
This is both incredibly sad and incredibly helpful to keep in mind as I stare in the face of my son who is lost in his fury.
Here’s a rundown of things I know happened in this memory fog of emotions:
- Friend 1 gives my keys to Friend 2. Friend 2 pulls my car as close as she can get it.
- Friend 3 grabs all of my things along with all of his things and navigates Knox and his son to our car.
- Friend 4 lifts Tobin, along with Friend 1—using the proper restraining technique because both of them are trained in this area—and they begin “walk” Tobin the long journey to the car.
- Tobin is still thrashing and lashing and screaming and dragging his feet. I’m walking helpless and say to the friend carrying piles of belongings, “Here, let me carry those,” to which he replies, “Absolutely not.”
- Tobin loses a shoe. I’m not sure how, but somehow I find it in his bag when we get home.
- Friend 4 (the one “walking” Tobin) decides to pick Tobin up. This friend has short, short hair, so Tobin can’t pull any of it. I watch Tobin wrap his arms around our friend’s neck. And I can see he is beginning to calm.
- He takes him to the car and buckles Tobin in. My stuff is loaded in the car and Friend 2 says “I’m going to drive you.” (It’s a twenty-minute drive.) But I insist that we are fine. That we’ve done this many times. That I can drive and they have done so much more than enough.
- There are hugs and tears and “thank yous” and I open my driver’s side door, only to find Friend 1 sitting in the passenger seat. “I’m going with you,” she says. Her door is closed and she is sitting on top of the PILE of “stuff” I have in the passenger seat. “We’re fine,” I say. “This is happening,” she says, and I take the stuff to the back of the car so she has room.
We drive home. Knox is smiling, talking about the game, and I zone out, coming down from an adrenaline high, crying, mind spinning about all the things I should have done and replaying everything that happened. I say, “I’m sorry Tobin got so upset, Knox.”
“That’s okay,” Knox says. “It happens.”
And he proceeds to talk about the game and school and Halloween and baseball cards and Playstation, and my friend responds to him, answers every single one his questions… so I can fall apart and put myself back together while we drive.
And Tobin sits calmly in the backseat.
We make it into town and she says, “We want you to go all the way home and he’ll pick me up there and take me to my house.”
“You don’t need to do that. We are okay,” I say.
“Just go on to your house,” and she smiles.
There are check-in texts when we get home. I send a smiling picture of Tobin as I tuck him into bed. My sweet boy has returned. And we text thank-yous and encouragement…
And I can’t shake it. Any of this.
This happened several weeks ago, and I’m still processing.
This is more than just a hard moment for me.
Because this moment speaks so much to how I think love works.
For most of us, I don’t think we think about it when we’re growing up: meeting new people, making new friends, going on dates, falling in love. I don’t think we think of it when we say “I do,” or hold our children in our arms for the first time, or we take in a friend and make them part of the family.
But I believe LOVE is the greatest risk.
When we open up our hearts, when we make ourselves vulnerable to other people, we get everything that comes with that. Both the hard and the highs. The camaraderie and the betrayals. The support and the failures.
I mean, I’ve taken Tobin to stores before and he’s had very loud tantrums. And I’ve heard the comments. The lady who used us as an example to the young children with her when I’m checking out at the store and Tobin is doing his shrill scream that makes your ear drum dance: “It’s that little boy over there!” she pointed. “Ooh, he’s so loud!” Over and over while Knox is pushing Tobin around trying to get him distracted so I can try to use the credit card machine while my hands are shaking, shaking.
I’ve been in the car with Tobin and my mom during a meltdown while he’s thrashing and my mom has to get out and explain to the lady the next car over what is happening because the lady looks concerned and about to call the police.
(Once my mom explained she understood, but still—she was about to make a call. That actually happened.)
So it’s much easier for me to keep Tobin at home. It’s much safer for me to keep Tobin at home. It’s much more convenient for us to take turns in public events—one person attending and the other person in the car or at home.
This is also true with our hearts.
And sometimes, we DO need to make that choice. Just like sometimes, we DO need to set boundaries with our heart: we need to make decisions to step away from toxic situations and people and end relationships. Sometimes we DO have to amputate a relationship. Because there are wolves among us who dress as sheep. (Or spiders in praying mantis costumes, as I like to say.) This is all true.
And all you have to do is turn on the news to find a million and half reasons to stay home, to lock your heart up, to guard everything you love and not let anyone else in.
If all we did was play it safe we would miss out on moments like the other night at the ballgame:
Moments when the “village” goes into action, without waiting to be asked.
Moments when you feel like you’re standing in your underwear in the middle of Busch Stadium—then Grace comes in like a big, warm blanket around your shoulders.
Moments when all the goodness and kindness and compassion and understanding reach out and wrap their arms around you in a tangible way.
We’d miss out on the very real and very present LOVE.
We’d miss out on the Good.
(And people would miss out on all the unbelievable light that Tobin radiates wherever he goes. They’d miss out on getting to know our precious boy.)
I was in the hospital recently. For an extended period of time.
I’m still processing all of that, but one thing stands out that I can’t shake: the people.
See, there was this time when I was going through something really hard. And I felt so alone. I had gotten burned and my first response was to retreat. And it was the right thing to do.
But it was so incredibly lonely.
However this time, when I’m laid up in a hospital bed, my family is reaching out to people and explaining what is going on—letting people in, opening up their hearts—people responded. In huge ways. They sent texts, flowers, messages, meals. They visited. They called. They helped take care of our little event venue. They helped take care of my boys.
These simple acts of kindness were absolutely incredible. I didn’t feel alone. My family didn’t feel alone. We felt truly supported by those far and near. And it was such a tangible LOVE, I can’t even express.
It’s what we were meant to do, to love like this.
And to feel it in such a real way? I’m convinced it’s part of why I healed so quickly.
When I first drafted this post, I knew I wanted to convey that “Love is the greatest risk.” I had everything lined up in my mind to show that opening up your heart is taking the biggest risk I know:
It can make you broken and jaded.
It can smash your world into a million pieces.
It can make you lose everything you thought was important.
It requires so much of us.
I was going to show that even though love is the greatest risk, it’s our biggest superpower… and it’s worth the risk.
That was my first draft. But now, I think I’ve changed my mind.
Now, I’m convinced that while love is this huge, vulnerable act that is risky but worth it, the greatest risk is actually something else:
Choosing to close up our hearts—that is the greatest risk.
Because LOVE can transform people and relationships and helpless situations. It can fill up the empty. It can soak in the dried up. It can revive the dead.
Because in this imperfect world we are promised hard. And we are promised highs. That’s how the whole thing works—it’s an “and” kind of world. You can’t pick one.
Because fencing up our hearts may keep us “safe,” it might protect us from those wolves, but it also keeps out the beautiful wonderful that only humans being humans can give.
Because we need each other.
Because loneliness is no friend of ours.
The next morning following Tobin’s meltdown, I received this text from Friend 1:
“I was thinking about last night. I know you live in a semi-constant state of fear that something like that would happen. But don’t worry about it anymore. Now you know what it’s like. You’ve lived through it and come out the other side. And everything is okay…”
She’s so right.
We take risks with our hearts and sometimes we get burned. But then, when the smoke clears, we stand up. We dust ourselves off and realize, “I’m still here. That happened and I’m still here. I’m okay.” And sometimes, we’re even better than before.
So I’ll keep moving toward LOVE. Because it’s too risky not to.
Emory- I am so proud of you for all that you do and have done but most importantly because you “get it” and are willing to share the amazing insight- highs and lows- for all to learn! Because after all, isn’t that what we are supposed to do live, love, and learn every day! I know you when learned so much these last 4 years and I continue to learn from you and others about how best to help or deal! I love you girl!
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Thanks so much, friend. ❤
So thankful for your friendship on this journey.
Anna-Marie, you radiate light. People will always be there for you, because you are always there for others. I love this post and I love you. Thank you for sharing so much of your family, even at your most vulnerable, with us. You tell us things we need to hear. You remind us of things we know, but have forgotten. You make the world better by being in it.
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Thanks so much for your kind words, Sharon. I am so thankful for all the ways our paths have crossed. So thankful you are a part of my life. Love you, friend. ❤
Tears streamed as I read this. You are so amazing. Over the years I’ve watched you hide the real stuff and put on a brave face, the face you thought you were supposed to make sure everyone saw. But just like you described with Tobin’s meltdown and with your hospital stay, when you let the people who love you LOVE you, you realize how much you (we) need to let those people in. It’s lonely without them…we’re weaker without them…more fearful, too. Yes, that is the greatest risk.
Love you. Love your family.
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Love you so much, friend.
You have definitely been a key person on my life journey… you have seen me in so many different phases of life and have been there to offer wisdom, insight, love, and a listening ear for so much of my life. I’m so grateful for your friendship.
And you are so right about being alone. I keep thinking of the Luna Lovegood quote from Harry Potter, “Well if I were You-Know-Who, I’d want you to feel cut off from everyone else. Because if it’s just you alone you’re not as much of a threat…”
We are weaker without each other.
So beautiful. Thank you for sharing this part of your heart and story. I connected with you in so many ways.
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Thanks so much for reading and for your kindness. I appreciate it so much.
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