These words have filled our lives for the past five years, and as any parent of a special needs or neurodiverse or child with mental illness knows, these words contain multitudes, not to mention mountains of paperwork and piled up books on bedside tables and so many phone calls and emotions.
The definitions of these words, too, are wide and deep and tell you everything and nothing at the same time.
Our amazing ten-year-old daughter, Alice, has been diagnosed with some specific things - finally - including some unique iterations of Sensory Processing Disorder (SPD), Anxiety, Obsessive Compulsive Disorder (OCD), and chronic migraines. It’s been a long arduous journey to identifying these things and I’m certain this is just one stop on a lifelong journey.
We are no strangers to mental and neurological differences in this family.
It was just before I graduated from college standing in the kitchen near the balcony patio of my apartment when I had my first panic attack. I had no idea that was what was happening at the time – I thought I must’ve got something stuck in my throat, like I’d swallowed my saliva wrong and I began choking like I couldn’t breathe for about a minute and then it subsided. It happened again and again, every few months or so, for several years, each time I was sure something must be malfunctioning in my throat, my mouth, my tongue, but never in my mind. Fast forward three years and I had moved in with my boyfriend in Oregon and it began happening weekly, this not breathing for a minute and suddenly starting up again. It scared my boyfriend and I so much that I finally made an appointment with a doctor who kept asking me questions about stress levels, mental health, anxiety. She told me I was having panic attacks. I scoffed – I mean, I was completely calm and in relaxed situations when this was happening. I wasn’t hysterically crying or angry or sad. We talked, she examined me, and then she gave me some paper tests to take and determined I was low risk for depression but high risk for anxiety.
She suggested I try therapy and a SSRI pill like Paxil. I did, and the panic attacks stopped. I also gained 30-50 pounds every time I went on a SSRI for the next decade and lost it when I went off, which was every time I got pregnant. I talk often about how important this process was to my body positive journey – the weight gain was dramatic and concerning at first but the elimination of the panic attacks, the mental clarity and the peace the drugs brought to me at the time were worth it. I discovered I’d rather be fat and happy than slightly smaller and miserable. My boyfriend agreed – and he became my fiancée and later my husband and suffers from some mental health struggles of his own, including severe anxiety and Obsessive Compulsive Disorder, two things he has managed throughout his life on his own without the help of medication.
We always joked, kind of, about how “screwed up” our future kids might be, not only from inheriting our brilliant but bonkers genes but also from how my weird ideas and his quirks might provide them lots of fodder for future therapy sessions. Only now it’s no longer a joke, it’s very serious and very, very real. And they not only inherited some stuff from us, but have added some of their own unique stuff as well.
I’ve written before about how motherhood for me has been terrifying and terrible, extraordinary and fills my heart so much I fear it might burst. It also reminds me every damn day what true love really looks like, how little I know about anything, but how much I will do to try and learn and grow and figure it out.
All bodies are good bodies and there’s no wrong way to have a body has taken on an even more critical role as our family mantra. Even when that body is hurting or feels broken. Our other family mantra, We Can Do Hard Things, has also become even more powerful as well.
We’ve been trying to figure out, as parents, how to talk to Alice about these things, about how much to focus on them, on whether or not to make it a big deal or not. We want to honor her unique traits as something that makes her special and amazing despite the challenges they might create but also don’t want these things to define her. I want to empower her to not be silent in shame but to have the ability to keep some things private if she chooses. I want to be careful because it’s not entirely my story to share. This is, quite honestly, a big struggle of being a writer - a mommyblogger for the past ten years - on the internet.
I once read this interview with Glennon Doyle where she talked about how we should write from a place of a scar not an open wound. I generally believe that to be true, but I’ve been living with this open wound for over five years now and sometimes I feel like I’ve got it well bandaged up and a care plan in place and sometimes I feel like I’m bleeding out. I’ve struggled with how and when to share this story publicly, mostly because I feel like I’ve jumped off the deep end and I’m treading just to stay above the water.
But to be honest, as a mother for the past fifteen years, I feel like my heart is always hanging out wild and naked on my sleeve - huge and throbbing and cracked - when it comes to parenting and my family anyhow. Writing through my thoughts and feelings sometimes helps, not only me, but others, too. It also helps me remember that I actually do know how to swim, and reminds me that I’ve made sure my kids know how, too.
And my Alice is one of the best swimmers I know.
A few resources that have helped our family, especially Alice, Eric and I, recently (UPDATE: I’ll keep adding to this list as I find more books, podcasts and recommendations from others!):
UNSTUCK: and OCD kids movie (documentary)
Living With Obsessive Compulsive Disorder (podcast)
AT Parenting Kids with Anxiety and OCD (Facebook group)
Support group for parents of Kids with OCD (Facebook group)
Parent support group of children/teens suffering with migraines (Facebook group)
Odd Girl Out: The Hidden Culture of Aggression in Girls by Rachel Simmons (book)
Real Friends by Shannon Hale and Leuyen Pham (book)
Talking Back to OCD by Dr. John March (book)