When Your Child Has Disruptive Mood Dysregulation Disorder

Disruptive mood dysregulation disorder (DMDD) is its name. Not that I care to know what it is after what it has done to us.

My life’s mission, my world, his name is Sterling. This boy is my heart outside of my body. The countless hours I’ve dedicated to simply understanding him have been endless, and will continue to be. The minutes I’ve spent crying over circumstances or situations that DMDD has created for us. The unending stressors that it has cause for my sweet baby. The unknown time that I will tirelessly look into his eyes not knowing how to hold him closer. All of the medications take such a toll on his body, his mind, his clarity, his ability to know who he is for himself. I’m not even sure who he is anymore. I’m haunted by the times I thought to myself, “why is he like this!?’’

It’s not him though, it’s the imbalance. It’s the inability to regulate his own thoughts, feelings, reactions to his environment. Mood stabilizers, anticonvulsants, stimulants, antipsychotics, anxiety reducers, sleeping aids. What a way to live, knowing you have to take this many meds in a day to function safely for yourself and others. This is what disruptive mood dysregulation disorder has done to him.

Imagine not being able to uphold “normal” relationships. Imagine being 10 and not being able to maintain a trusting friendship with a peer. Imagine the feelings of intense jealousy and being simply ashamed of the jealousy you project. Imagine knowing you are the reason that other kids avoid you. Imagine your own siblings building walls to protect themselves from your rage. Imagine not having the learned social skills required to repair relationships.

Why must there be mood cycling? Why does there have to be highs that are too high, too grandiose, too unsafe? Why must there be lows so devastating that he hates being in his own body that my body created for him? Why does he have to go day after day so tired and empty inside? Let the boy sleep through the night. Let him wake up rested. He gets night terrors that seem so real that he screams and hates his own bed. Why does this all happen to a child?

Why must I have to do things that most parents will never have to do? Why do I have to board up windows to keep him from jumping out? Why must I set alarms in my house to keep him safe at night? Why must the local police have to know me so well? Why must I have to call them once a month for help. Why must I know the hospital walls so well that I can spot new scrapes every time we go? Why must he go inpatient for days at a time so many times in a year? Why does DMDD take him from me when he needs me most?

I know disruptive mood dysregulation disorder is not a forever diagnosis. I know where we are heading: bipolar will more than likely be the diagnosis. Whatever mental illness, I will still be here. I’m still fighting for him. DMDD won’t erase me; shield and sword, though it may be heavy, I will defend him until he can defend himself.

I am tired yet invigorated at the same time. I see the other parents out there. They are screaming inside for help, for advice, for a break. What a community has risen up to fight. These moms, their journey begins with heartache and worry. Then they find others, then they begin learning, they begin researching, they learn every medication out there and what reactions it gives their babies. They learn a whole new method of parenting, they learn co-regulation. They begin to look to each other for support, motivation, validation. They become strong, a force.

DMDD will not win. At the end of the day, we will defeat it. Our sons and daughters will learn to live with it, and push it down so that they can be their true selves. These kids will grow and thrive with it under their feet. DMDD will become the foundation that they walk on. A house is stronger with a solid foundation, so these kids will learn how to cope and rebuild their brains to handle it. They will use the tools they had to adopt to turn it into building blocks for their futures. And in that way, we have found it useful.

DMDD, after all, is a disorder. It is just the disturbance of “normal,” and normal is only normal. Disorders can be sublime. When one takes charge, learns everything they can, adopts new techniques, and educates loved ones, they can live a resplendent life. My son, my precious Sterling, will be extraordinary.

There will be life after disruptive mood dysregulation disorder for my son, for all of these kids. This will not defeat my child. This will be something we never forget, but it will be of the past. Isn’t that just remarkable? My son is a trailblazer. He is not alone in teaching the world of psychology, psychiatry, pediatric medicine, schools, and families everywhere just how to fight against it. DMDD’s effects on his life may be lifelong, but he will know how he alone stood against it with an army that we have built for him.

DMDD is so destructive, but I am great at rebuilding its mess. Look at me, I’m still here, he is still there, it has not won. It is a complex diagnosis that can be improved with parent education, meds, therapy, and compassion. Dare I think to myself now and reflect that it may have possibly been a blessing? I see some silver linings. DMDD taught me of my inner lioness, my inner desires to protect my children at all costs. This disorder may have in fact changed my life.

We can now rise up with the day and take charge, step into our power, engulf ourselves with dignity and slough off our misery and gloom. We are trailblazers, the architects for the foundations for these children to build upon.