Why We Didn’t Tell You: Learning to share our DMDD journey
Written by Sara P. who is a wife and mother to three boys, all adopted from birth. She is a two-time cancer survivor, graphic designer, recovering political strategist, and lover of all things gluten-free. When she’s not running a busy household, she can be found writing, practicing pilates, or walking on the beach.
Never did I ever imagine DMDD would define my motherhood. Ever since I realized something was not quite right with my oldest son at age three, I’ve struggled with what to share and how to share our family’s journey - especially publicly. I’m sure I’m not up to date with the correct terminology for all the things my child deals with on a daily basis. In short, he has letters that describe him, an IEP that accommodates his schooling, and a brain-based medication plan we follow meticulously. That’s the easy version of the story.
As he’s grown, our family life has grown to revolve around his diagnosis. We’ve shifted careers, moved homes, changed the imagined structure of our family by only adopting three children (we wanted more), hired helpers when it wasn’t safe for me to be alone with all of them, and sought out more doctors, therapists, and therapies than I can remember.
When I meet people, I carefully and strategically let little details of our family dynamics slip out (though sometimes the sharing does look more like an avalanche of emotion). People always seem surprised when they finally learn about our family’s struggles. I’m surprised we hide it so well (because we really aren’t trying that hard). I often get asked why we didn’t say something before – why we just canceled plans or blamed my chronic fatigue.
Frankly, our daily life feels too heavy for others. I don’t want to burden someone else, and I don’t want what typically comes in response to sharing: pity, judgement, and my reining title as “Debbie Downer” (I am the girl who has faced cancer twice before age 40).
I’m also overly aware that this is NOT my story alone. This is my child’s life and I am forever fearful that talking about his struggles will stigmatize him and label him (to others or himself). So I often keep my mouth sealed tight. It’s obvious he is difficult, but if I have a smile on my face, then at least I can protect his story.
When you dig deep down though, the biggest reason I don’t share is because somehow mental illness, differences, or whatever the correct lingo is today somehow feels different than medical illness or the loss of a loved one – especially in a child – especially when it’s MY child. Add an adoption story on top of that and I simply do not know what to say or how to share without frightening someone off or finding a wall of judgment and criticism.
The toxic suggestions pile up: Perhaps it was the maternal break, a genetic predisposition, or my inability to parent correctly that triggered it. Maybe this isn’t God’s plan for my life and I forced his hand. Perhaps I am too harsh with him, too easy, too structured, too loosey-goosey – all at the same time.
Next comes the endless solutions: occupational therapy, play therapy, crystals, essential oils, vitamins, food sensitivities, books, programs, and the list goes on……
The solutions for a difficult child are as endless as the solutions for cancer. Everyone knows someone who tried this or that and was successfully cured of everything forever amen.
This litany of criticism (both external and internal) and problem-solving consumes one every day: Somehow, I must parent this child, protect him from himself, protect his siblings from his hurts, protect my marriage from being consumed by it, and protect my own heart in the process.
For a long time, that was my motherhood – circling around one child’s needs, surviving daily, and carefully deciphering what to share and how to share with others.
Then one day, I found myself breaking down in the toy section at the local Goodwill. To be honest, this wasn’t anything new. My other two children and I would regularly drop my son off at therapy, and then walk around numbly trying to soak in a little bit of respite care in cheap retail therapy. They were contained in the cart, entertained, and distracted. I could cry and push the cart aimlessly up and down the aisles.
But this time, I rounded the corner and my Mothers of Preschoolers Group (MOPS) mentor was standing before me. She put down her armful of vases and wrapped her arms around me - and I melted. I spilled it all – about how overwhelmed and unequipped I was to handle this child, how desperately I wanted to help him, and how we were utterly failing.
She didn’t have any answers. She had prayer, a hug, and a listening ear – not only to my struggles but to other people’s struggles as well. And that’s where our long journey to healing really started – with me finally sharing it all with someone else.
That very night, my mentor mom connected me with another adoptive mom of three boys who struggled with similar issues. The adoptive mom connected me with a psychologist who specialized in adopted children and who happened to have an opening that month. The psychologist helped us identify specific behaviors which led to a diagnosis and opened our minds to trying medication. Within a few months, the medication gave us the bandwidth to get out of crisis mode and figure out sustainable solutions for our family – like hiring an au pair.
Hiring an au pair, allowed me time to connect with other moms on internet support groups. Online support groups is where I learned about similar children finding stability on a brain-based medication protocol. I started asking questions, sending private messages to other moms, and watching YouTube videos. I took the protocol back to the psychologist and insisted we give it a try. He reluctantly agreed. And after years of struggle and a breakdown at Goodwill, my son found stability at nine years old.
Don’t get me wrong: we have not found the magical cure for DMDD. My child still has many rough days. At 12 years old, we are now facing both impending puberty and the rocky transition of helping him take ownership of his own mental health journey. But, we are no longer drowning. We are living. My child is too.
My son has friends and gets invited to birthday parties. He plays sports, and can listen to and follow instruction from his coaches. He is in a mainstream classroom with few accommodations and gets good grades (when he tries). He goes to summer camp and was elected as a leader by his peers. He can calm himself down in less than 20 minutes without going into a rage, and he shows empathy and regret when he loses control. He laughs and he smiles.
Our family life has taken longer to adjust and trust the protocol. My other two boys are slowly learning to let down their guard, something time and therapy has helped with as well. We are now able to hire normal babysitters, venture to neighborhood parties where the kids run free, and even make plans that don’t have a specific accommodation lined up for my DMDD son. It’s been a slow, aching process of learning to trust his growth and love him for who he is behind those defining letters.
Little by little, I have realized the more I talk openly about and share our struggles the more company I have on this strange path. And walking this path with others is the only way to survive it.
It’s surprising, to me, that I’ve been so dense about that fact – sharing and connecting is what dug me out of the fog of early cancer survivorship. It’s what helped me gain my footing after so much tragic loss in childhood. It’s what helped us find our adoption path to this amazing child.
I talk openly and freely about my son’s struggles now more than ever. I try to maintain a sense of privacy for him, but I’m growing more and more aware that it is not just his story – it’s OUR family’s story too.
In sharing, I have made connections and friendships with others who are caught in the same trenches where I used to live. I’ve helped others find success on the same brain-based protocol that changed my son’s life. I can be a sounding board for others who are simply at their wits end and need to tell someone the horrendous thing their child did today without judgement or solutions – and they can do the same in return for me.
My son’s journey with DMDD has shaped me and my family in ways I never imagined possible. It is a refining process that I do not wish on others, but am ever willing to listen to and understand.
One never knows the struggle someone else carries.
It’s okay to talk about our pain.
It’s okay to laugh about our challenges.
It’s okay to cry about our disappointments.
It’s okay to look for solutions.
It’s okay to take a break from solution seeking.
But by all means – do not stop sharing – for the sharing is how we find what we truly need to be okay.