“Bipolar disorder. sucks. It sucks even worse when it’s your ‘nonverbal’ 5-year-old who has it. He has been up till 1:30 or 2 every night the past four nights. His body is beyond exhausted and he can’t sleep. I feel like a horrible mom sitting on the floor in the hall outside his room, which is locked, listening to him.
He tries the door every minute or so, then jumps on the bed, screams out numbers and games to himself, laughing. He tries the door again, jumps on the bed, tries the door again, slams his body against it, then giggles and jumps on the bed again after leaping to it from the dresser. This repeats over and over for hours. I have been here since 8:30 this evening. No amount of medication can stop it or help him sleep.
Eventually, he will wear himself out. Eventually, exhaustion will take over. Eventually, he will lay himself down and go to sleep.
Until then, the safest place for him is his room. Minimal stimulus. Minimal movement. Minimal stuff to get into. Minimal chance for harm to himself. I sit here on the floor, head leaned back on the wall, tears streaming down my cheeks, waiting for him to finally wear himself out. I listen for his tears that may or may not come. I listen to the silence that can come on suddenly and just as suddenly, be broken by fits of giggles and jumping on the bed as his body decides it still has some fight left in it.
His room is the safest room in the house. There are no chairs to throw, no glass patio doors to slam his body against. No trampolines to stimulate him back awake. No technology. No TVs going. No pantry to destroy. No destruction can happen. His room is for sleep only. No toys, no games, no stimulation. We made it that way a long time ago when these manic episodes started. His playroom is separate. His room is designed to encourage sleep and rest only. Yet, I listen as my son finds ways to stay stimulated.
Then it suddenly gets quiet. I listen to make sure he isn’t upset. I am just about to get up off the floor to make sure he is tucked in bed finally asleep when it starts all over again. I open the door to check on him.
I can see the exhaustion in his eyes, but his brain is on rapid-fire mode. It’s a physical and mental tug of war. As soon as he gets sleepy, he starts giggling. He starts singing. He starts counting. He jumps on the bed, jumps off the dresser, anything to accommodate the barrage of commands his brain is overloading into his little body.
Here I sit, feeling like the worst mom in the world, even though I know he is in the safest place he can be. I feel horrible as I fight to stay awake because the exhaustion is so severe, I am in a fog. I am terrified if I fall asleep, he will find some way to hurt himself. I am afraid if I just go to bed, he will start sobbing and I won’t be there to comfort him until he finally falls asleep. I could try now but the energy emanating from him makes him restless and impossible to sit still long enough to be held. So I sit here in the dark hall, waiting with a heavy heart.
No one wants to diagnose a 5-year-old with bipolar disorder. No one wants to give him medicine that will calm his little mind. No one wants to say this giggly, rambunctious, brilliant, artistic, cuddly kid has a mental disorder. No one wants him to lose the proverbial halo hanging lopsided on his head because of the stigma that goes along with mental illness.
Bipolar is an under-diagnosed disorder in kids with so few medicines available. It has even fewer doctors willing to diagnose and treat the disorder before age 12, even fewer still willing to diagnose before age 8. The meds available can have lifelong, irreversible side effects or can’t be used in kids under 8. So we weather these storms and suffer the fallout with him. Our hearts break into a million pieces each time he tries to open the door. It breaks as we wonder if we are doing more harm than good. It breaks because we can’t take this from him any more than we can take the autism, severe speech delay, Tourette’s, OCD, anxiety, SPD, heart defect, and so much more. I would. I would take it all in a heartbeat.
Sometimes he starts sobbing. I open the door and comfort him, guide him back to bed, and sit until he falls asleep. Most days, it doesn’t phase him that he is locked in his room. He keeps going until his body just gives in to sleep. Every time I sit out here, I wonder if he can even understand his safety? Does he hate me for doing it this way? Is the doctor right in this method? I don’t know. He is diagnosed nonverbal but has a bigger vocabulary than a year ago. He didn’t speak for 23 months after he lost his words at age 10 months. He went from a very advanced talker to silent. When he was four, I was told he never would speak. He does. But does he understand what I am saying to him? Does he even comprehend my words?
Nine out of 10 times, he could care less his door is locked. He knows it is and it doesn’t bother him. But that one time gets me, the one time he slumps to the floor and starts sobbing on the other side where just a door separates him from my arms. I open it and take him into my lap. No amount of cuddles can calm him and I feel like the most despicable human on earth. His tears are from exhaustion, from the way this makes him feel, from the constant vibration of energy he can’t escape from, from that moment he suddenly just wants Mama because he is so tired, he can’t keep up with his brain.
Out here, in the rest of the house, are all the dangers he can find despite all the childproofing we do. He can bang his head on the wall until he puts a hole in it. He runs nonstop through the house until he just misses a corner wall and gets hurt, oblivious to the pain. What, on any other day, would hurt and cause tears have no effect on him in these manic days. He slams doors until their hinges break. He climbs on the console with the TV, the windowsills, and the back of the sofas. He opens as many snacks as he can but doesn’t eat a single one. His mind runs at warp speed but his body is tired. Injuries follow suit because his muscles just can’t coordinate that fast. His room is his safe place and he has to stay until his body gives out.
Bipolar disorder is underdiagnosed in kids under 12. For years, researchers have thought it started in childhood, but previous research would say these behaviors are just ‘kids being kids.’ Older doctors refuse to ‘label’ a child bipolar and it goes untreated. Bipolar disorder affects kids the way it does adults. They may not spend money, act out sexually, and do all that adults do with mania, but they haven’t yet gotten to the point in life where they have experienced all of life enough to draw from it and react in the same grandiose ways adults do.
Research is showing that bipolar kids FEEL the same way adults do. Their minds go at warp speed. Their bodies struggle to keep up. They are physically exhausted, but their mind keeps rapid-firing commands. Their little bodies physically vibrate as their muscles try to interpret every command coming from their brains all at once.
They do this for days. They go through their day with energy that runs on adrenaline and delirium. If they sleep, it’s less than a few hours. They often eat very little or will eat nonstop, and they do it for days. Then they crash. Oh, the crash!
Just as suddenly as it began, they crash. They come down off that adrenaline high. Their bodies ache because, physically, they just ran a weeklong marathon. Their emotions plummet. They go from maniacally laughing to sobbing out of the blue, without any reason. Couple that with a child who has nonverbal autism. All you can do is hold them and comfort them, let them cry it out until they have no tears left. You let them sleep in your bed where they feel safe so their bodies can recover as they cling to you, even in a deep sleep. You stay by their side because they won’t let you out of their sight. You build absences into their IEP for these days, so they aren’t marked truant. You research, try doctor after doctor until you find someone who recognizes the signs and symptoms and is willing to figure out a treatment plan and will keep trying until something works. You pray the medications work.
You feel horrible for having to use medication. You feel horrible for not seeking medication. But bipolar can cause people to do things that can cause great harm. Medications are a must. You talk yourself off the ledge every day and every night. You muster up the energy from the physical and emotional drain just to keep the house going. Gone are the days of living on that pink cloud. Gone are the days when you said you would only feed your kid healthy, organic foods and ‘never resort to using medications.’ You roll with the punches, keep a positive attitude, fight for his educational rights, and you fight for his mental well-being. You fight to keep him safe from himself and fight to keep him healthy. You feel like a monster some days and worry you aren’t doing enough on others. You put your own health and emotions aside and suffer because of it.
We are grateful we have forward-thinking doctors. We are grateful we live in a day and age where our son can get the help he needs. We are grateful for the family, friends, teachers, schools, and physicians who support us. We are grateful for our church, for faith to hold onto during these times.
People who have no understanding of bipolar, autism, developmental delays, or special needs, in general, cannot see past our son ‘locked in his room.’ They don’t see the self-harm, head banging, self-biting, thrill-seeking dangerous behaviors we live with every day. They don’t sit for hours in an ER waiting for stitches from self-harm. They don’t have special locks on the outside doors to prevent eloping. They don’t understand that harm our eloping child can do. He will run blindly into traffic and could be hit by a car. He could get lost and not be able to call out his location to searchers. They can’t tell the difference between a meltdown and a tantrum. They can’t see the signs a tantrum has become a meltdown. They don’t understand sensory processing disorder and the reason we may fix a different meal for our kids than for us or why we plan outings around him and his food choices. They haven’t spent days coaxing food and fluids into a kid who will hold out until he is hospitalized to eat only what he wants. Those mashed potatoes feel like glass shards in his mouth or water tastes like pure chlorine. They don’t understand, in these kids, every calorie counts, good or bad, and the texture, color, or temperature of food can result in complete refusal to even try it. He almost got a feeding tube due to severe food aversion.
They don’t see the years and thousands of dollars poured into doctors’ appointments and therapies to expand his food choices and to teach him safer behaviors to replace harmful behaviors used to comfort himself. They aren’t taught how to support him and prevent harm during a meltdown. They don’t understand the number of medicine he takes to just function or how a new medicine can cause us sleepless nights, from fear it will cause an adverse reaction and we won’t be awake to catch it. They don’t feel the exhaustion from staying up for days on end to keep him safe from himself, or the silent tears cried while sitting outside his locked bedroom, waiting for the calm to finally take over.
They don’t see the fear someone with zero knowledge and experience will call CPS because they can’t bother to educate themselves on any of this. They don’t know the damage and regression and possible risk to his life that one call can do. They don’t understand you can’t just drop him off at a psychiatric facility because, at this age, it could devastate and undo everything we worked so hard for. All they see is ‘locked in his room’ and immediately jump to ‘savior’ mode, thinking they are helping a child they know nothing about. They call CPS without knowing all that goes with it and the damage it can do. They don’t realize psychiatric facilities do the same thing we do but without the mother’s heart and comfort on the other side of that door. No one will cuddle him when the storm blows over. No one will sit by him until he falls asleep in a foreign bed in a foreign facility. He would lose the one source of comfort he knows is at the end of this tunnel. He would lose the one thing he knows is just on the other side of the door. It does more harm than good for him to go somewhere else, even though I still think about taking him in. I know I won’t, but I worry I am not doing enough.
Bipolar disorder sucks. It affects the parents as much as the child. That child needs the safety and security they know is there when the storm blows over. So please don’t question our actions. We have been trained in how to deal with him. WE know what works best. WE know how to coax medications into him that help, how to feed him or encourage him to eat, how to handle these days, and how to help him recover. WE are his safe place where he can let loose when he has held it together all day at school. WE know what does and doesn’t work. WE have been the ones in the trenches with him and are his best allies and his best hope.
It is a hard road. The life of a parent with a mentally-ill special needs child is devastating. It is also beautiful. Each victory after these events makes us stronger for the next one. We relish the good days and value every tiny victory.
Medicine continues to evolve and give us more hope. Our support is there, at the very least, to pray for us. Our faith is there to fall back on and that is what carries me through. That, and the prayer, one day we will find the treatment that works best, and these days will be a distant memory.
Until then, I will sit out here, outside his door, and wait for the storm to blow over. He knows I am here. I see his little fingers reach under the door and I touch them to say, ‘I am here when you are ready.’ Then he runs away giggling as the cycle starts all over again.
I sit here in the dark on the hard-unforgiving floor with burning pain in my shattered and pieced-back-together back. I sit with muscles MS has ravaged as they go numb. I sit on the other side of his door, quietly sobbing and praying for him to finally settle down. I plead with God to please give his body some rest. I pray for Him to please help our son to sleep so he can recover from this. I barter with God, make promises. I silently scream in anger, asking, ‘Why does MY son have to go through this. Why him? Why us when we have to have so much wrong happen with our family? Have we not struggled and suffered enough?’ Then I ask forgiveness for being angry and losing faith. Over and over, this cycle repeats. I wait.
And then …. silence. It comes on as quickly as the storm started. I pause, my heart pounding in my chest, my hand on his door willing him to finally be sleeping. The silence is deafening as I wait for the smallest sound that indicates he is still awake.
After 20 minutes, I slowly untangle myself and struggle to stand on legs that have long since fallen asleep. I quietly push open the door. There he is. He has put himself to bed. He is snuggled under his fuzzy blanket with a crooked half-smile on his face, deep in sleep, looking angelic. His body still twitches from the brain trying to command action and getting little response. His breathing is still fast, like a runner at the end of a race, out of breath. I tuck more covers around him, kiss his sweet cheek.
I look back once more before leaving and barely pull the door so he knows he can get out when he wakes up. I stay up another half hour, talking myself down off the ledge. I make sure he is in bed for the rest of the night as I sit in the silence of the house. It is dark. Everyone else is asleep and I’m still trying to lower my adrenaline. Finally, I check on him once more before collapsing into a fitful sleep myself. I am asleep before my head hits the pillow, knowing my alarm will go off long before I am ready if my son doesn’t beat it first. It’s almost 3 a.m. and he will be up in three or four hours to do it all over again.”
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