One morning, after dropping Tobin off at school, another mom and I pulled our cars together so we could talk and catch up.
I remember the conversation so clearly. At the time, Tobin had been attending his school for almost a year, and this particular morning, this sweet mom and I were talking through our car windows, catching up for a few moments.
She was talking about potty-training with her son. (Her son and Tobin were in the same class at the time.) She was sharing all of these really great strategies for potty training and how they were working with her son. And I was feeling myself filling up with excitement over the possibilities. Then when I was fully inflated with hope, suddenly reality sank in and I felt myself deflating inside, while still maintaining a smile, hoping my insides couldn’t be seen from the outside:
There is no way Tobin is ready for this. He’s four years old. And I don’t know if he even understands when he is going to the bathroom. Familiar desperation started to fill me up… my heart starts racing and I pictured myself changing his diaper when he is fourteen. And twenty-four. And thirty-four. Palms sweating and my insides start to sink into the big hole of the unknowns and what-ifs of the future.
Suddenly, I’m brave and I just say in a very small voice, “I don’t think Tobin understands when he is going to the bathroom. I don’t even think he has any realization.”
And she looks at me. Right in the eyes, smiling the same smile she had before, never missing a beat and says,
“And that’s okay.”
I can’t adequately express what those words meant to me. It was acknowledgement. Permission to feel. Safety. Hope.
I’ve read that sometimes parents of children with autism can be challenging to talk with because it seems like no one can say the right thing. We get upset easily or we get defensive. If we express something challenging and people respond with something trite, we can feel as though we have been dismissed. But if people respond by acting as though our child is awful, we have our claws out.
And I think this is very true. At least for me.
I can remember when I first knew that Tobin’s behaviors were atypical. And I would express our challenges to people and some would respond with their own version. For example, I would share about Tobin’s severe meltdowns. And someone would respond with their story of their child’s meltdowns.
And I would know that the person was trying to relate and calm my fears. But inside I would still feel that desperate panicky feeling creep up:
They think I’m crazy.
I must be crazy.
No, I’m not crazy. I just can’t handle this.
That’s what it is. I’m not good enough or strong enough to handle this. Because this is hard for me. Yep… I’m not enough.
No… no, it’s that I’m crazy.
But then? At the same time, if someone responded to my story with that look? The one where I can tell the person is shocked or disgusted or too sympathetic or if they respond with a question like, “Did you know his diagnosis… before…?” My blood would boil and I would rage inside as the mama bear fought to claw herself out.
It was like no one could really say the right thing.
And I’ve been thinking on this lately.
Because I think maybe this is true for anyone going through something hard, processing something hard, transitioning to a new normal. Those moments when the ground has shaken and everything is topsy-turvy, and you’re finding a new way to navigate through the world.
It’s like no one can say the right thing. And I think that’s okay.
Because sometimes, we get so bogged down with fear of not saying the right thing or doing the right thing… that we don’t do anything.
Some friends and I were talking about this recently, and my friend Nikki was talking about a Jewish custom she had heard about called “sitting shiva.” This is the period of seven days following the death of a loved one where the bereaved sit for seven days, while friends and family visit to offer condolences, share stories of the deceased, and be together. The idea is to come alongside the grieving, to “empower the community to be God’s partner in comforting those who mourn.” Sometimes they don’t say anything at all. Sometimes they just sit with the bereaved. But they sit… together.
This custom is specifically for someone grieving the death of a loved one, but the message behind it grips me because of what it communicates:
You are not alone. I am with you.
Sometimes when you are going through something hard, that’s all you need to hear. Or feel.
Maybe sometimes we put too much pressure on ourselves or on others to “say the right thing.”
Because when someone you love is going through something hard and you know it’s hard and the hard is making them hard to be around…
What do you say? What can you say? What’s the right thing to say?
That’s a lot of pressure. On ourselves and on others.
And pressure like that can actually lead to inactivity.
Maybe it’s not so much about what you communicate verbally… but what you communicate through action.
I’m a Harry Potter fan, and I can’t help but think of the moment in the movie Order of the Pheonix when Luna comforts Harry by squeezing his hand. They are standing in the corridor; she offers condolences and reaches out and squeezes his hand for a moment… then lets it go. It’s Luna’s way of communicating, “I’m here. I’m with you.”
I think when we’re going through hard things, we can be incredibly difficult to talk with, even if we’re good at hiding our twisted up insides with a smile on our face.
Words can sting. But no acknowledgement can, too.
Because hard is not bad. It’s just hard.
And Good can come from hard. But the hard is still hard.
Tobin is a light to my life and my family’s life. And to all who really know him. He brings joy and laughter and understanding of the big important secrets of life that would have remained hidden to me if it weren’t for Tobin.
But there are some things about the way autism affects Tobin that are challenging.
And that’s okay.
The hard Brian and I have been through? I never want to go through that again.
And that’s okay.
But the after? The new life we are filled with? The fresh breath that keeps moving through our family? I wouldn’t trade that for anything. It’s game-changing Good. And just keeps getting better every single day.
And that’s okay.
When we are in the midst of hard, we may have the “head knowledge” that Good can come out of it, but we may not have the “heart knowledge.” We may know but not know.
I’m an optimist. It’s engrained in me to see the bright side of things. So I’m fully aware that I can be incredibly annoying to someone who needs to just sit in the dark.
I want to get better at this.
And I want to get better at being still.
At finding my own unique way to sit shiva with someone hurting.
I want to be okay with not knowing what to say, but still moving, still taking a step toward someone’s hurt.
I think sometimes we just need to know we’re okay. And even if what we’re going through is not okay, that’s okay, too.
I think sometimes it might just be about saying to someone, “I know you’re going through something hard. And you don’t have to say or do anything. Just know that I am here. I am with you.”
And sometimes it’s just saying,
“And that’s okay.”