We often communicate with abbreviations or brevity as placeholders when we don’t want to get into the details. How are things going? “Hanging in there” is my favorite response. It keeps things vague, not too negative. But in leaving out the details there is so much I don’t share, and with that, so much that isn’t seen or understood. I appreciate when others are blunt and honest, so why shouldn’t I be too?
An example. Monday I had my bi-weekly Zoom support group. It’s scheduled for 7 PM. At 6:45, we’re all hanging out in the living room listening to music: one of V’s Spotify playlists on my phone is blasting through the speaker. He’s calm and content listening to Vampire Weekend, the Killers, an assortment of familiar bands and songs. I plan to use my computer for the meeting, but there’s a new login link I was texted and for some reason (I’m usually passably adequate but I’m not the most high-tech person) I can’t get it to work. I don’t want to miss the meeting so I tell V I’m going to take the phone for a little while. I login on my phone with no problem, appearing briefly on the screen with the other women in the group, when V has a complete meltdown.
Sorry I couldn’t participate in this week’s session, I explain, V was having a rough time – that’s another shorthand I use a lot – but what exactly does that mean? What I appreciate about the support group is that even though our kids have completely different diagnoses we all can relate to the challenges of parenting a child with severe behavioral or emotional issues. I can, if I choose to, share the details, although sometimes I feel too burnt out to explain and leave it at that, a rough time.
What it really means: V stomps his feet, he cries out, he tries to grab the phone back, I have to lock myself in our room, he starts banging on the door and gnawing on his hand, close to biting but not quite. He doesn’t have the words or maturity to say “I want my music back!” We can’t have a reasonable conversation about it, where I tell him it will be back in 45 minutes and find him something else to do. We choose our battles and in this case it seems more important to skip the meeting, much as I’ll miss it, than to have to have an entire evening with V being out of control and likely having trouble going to sleep later. So I disconnect Zoom, put Spotify back on and watch as V goes back to his favorite chair with the speaker on the table next to him and listens to music until, with the help of his evening meds, he is tired enough for sleep. Crisis averted.
Having a difficult day or a rough week or a hard time can mean a lot of things. And while most of the time he’s well regulated enough to function fairly well there’s that 20% or so when he’s not, when something sets him off and plans get cancelled or changed. This summer when he went to camp in August there was one day each week when he was completely out of sorts and unable to attend or participate fully: the first week it was that he refused to get out of bed one morning, the next week one day he went racing out of the doors once he arrived and wouldn’t go back in, the next week there was a day when he spent the entire time hanging out in a hallway, refusing to take part in activities. We had no explanation for any of these off days, how they would occur in the middle of an otherwise good week. I was grateful that he had such a great time the other 4/5th’s of the days, but making plans was challenging.
The extreme weather we’ve had this summer is a good metaphor for the type of caregiving I do. Moods move in like clouds before a storm and what was a bright cheery day erupts into something it’s hard to handle. “We’ll be there shortly” becomes “We can’t make it.” It’s why support groups or just having a few people you can be real with is so important. It’s why I want to explain some of the details a little more. To gain some understanding and acceptance (and hopefully not garner any pity, which is the last thing anyone ever wants when they share their truth.) When I listen without judgement to the other women in my support group, I really grasp their unique struggles; I see how, like myself, they feel frustrated and exhausted when the storms occur and yet find a way to celebrate the smallest achievements. When we had all that rain and lost power during Ida I was as flooded with appreciation as our basement was with water, relieved that V, while upset when the lights went out, did not have a complete meltdown, that he somehow adjusted and got to sleep alright.
And so I work on cultivating equanimity – to have some evenness of mind even under stress. That means not to get too upset when V is dysregulated, whatever that means at the moment, not to get too complacent when things are going smoothly, yet not to be on edge all the time waiting for when he will fall apart, when the weather patterns will change. I sit here now and the only sound I hear is Ruby snoring. I know this calm won’t last but I enjoy it while it does and I trust I have the resilience to get through the next storm, whenever it arrives.