Pitfalls of an Invisible Illness — Where’s My Casserole?
Written by Max’s Mom, Maggie, who is a proud and loving mom to an alternative kid on a wild alternative path. Maggie has been married to Max’s dad for 20 plus years and works hard daily caring for her family of four and on lowering her golf handicap of 13.
I sit in my car in the school parking lot waiting for my son, Max, my 5th grader to be dismissed. I watch for him as the other students pour through the school doors.
Most are walking in small groups with big smiles on their faces as they chat with their friends -- so close together their gangly little limbs are banging into one another as they laugh and joke. Then I spot Max slogging alone. I’m not surprised, and yet, my stomach still sinks a bit for him. He looks around nervously and appears uncomfortable as though he wants to cover his ears from the noise. Maybe it's the car sounds, the nearby buses, or groups of kids squealing and laughing. He pulls his dark blue hoodie up to dampen the noise. He finally spots me waiting.
I watch the other kids’ faces brighten at their parents as they hop in their cars, bubbling about their day. The groups of kids piling into minivans and SUVs headed for activities or playdates. Max, with his well-worn furrowed brow and scowl, approaches my car. I can see him struggling to hold a book (his hardcover security blanket), a sweatshirt (he lost two weeks ago), and papers from a teacher (probably telling me the bad things he has done today). As Max reaches for the door handle, his backpack swings down off his shoulder. “F***!” he says. As he flops in the car, throwing his backpack across the backseat he says “Can we just GO?” in an angry tone. ”We ARE going home, right?” I nod yes. We don’t have any appointments with our psychologist or psychiatrist -- our only after-school activities.
I give him an unmet smile in the rearview mirror and pull out. “Oh, Aunt Kay is coming over later,” I say, hoping this doesn’t escalate the already tense mood. The cursing starts, “F***! I JUST want to be left alone!” “She is dropping by to see me, Max, just for a few minutes. Nothing for you to do.”Sigh.
The black cloud. “Irritability in the brain field,” doctors called it. This ominous, black cloud dampens every waking moment of my child’s life, and thus, our family's life. He has DMDD (Disruptive Mood Dysregulation Disorder), ADHD - both kinds - anxiety and depression.
We were told that it’s like a recipe where there's “not enough” of this and “too much” of that affecting the recipe that is Max. Constant low levels of sadness and irritability are always fighting inside him, creating high levels of anxiety and depression. There are times when he melts down, breaking everything in his path. He screams and curses so intensely that veins bulge from his neck. And then there are the cold, dead shark eyes that don’t seem to recognize anyone during these meltdowns. This fury can happen over something simple like tripping over a string in the rug or a major catastrophe. The result is the same, Kaboom explosion!
Then his eyes change back to a warm brown as he realizes what's occurred, although his memory is blurry after these rages. An overwhelming sadness rushes in, followed by waves of guilt, shame, remorse, and horror of facing what's occurred.
“ I just want to die.” “Why, WHY do I do this? What's wrong with me? Please Mom, just kill me, because I can't live like this. I want to just die!” Harsh words from a 10-year-old. Yes, I hide the knives, pills, cleaners, and scissors. I constantly worry he will attempt to take his own life, again. Yes, again. Yes, he is 10. He was only 8 the first time he tried to kill himself.
I was exhausted from a run of difficult weeks, with work and too many complaints from school about Max. I was sleeping in his room because I was worried about him, and rightly so. A little before 3:00 AM, with me sleeping next to him, he tried to swallow a toy to block his airway and end his life.
“I don’t know how you do it?” my sister-in-law says during her biannual visit from a few towns away. I nod and smirk thinking, “Am I given a choice?” I understand why this visit is so infrequent and why we aren't invited to Christmas or Fourth of July like we were before Max. But it hurts. She talks about my fantastic nieces and nephews (and they are!). Their high grades, upcoming college acceptances, fun trips, and baseball league. They are happy and that's awesome. “You have no idea how expensive baseball is.” No. No, I do not.
Just like you have no idea how expensive psychiatrists ($850 an hour) and psychologists ($300 per hour) are. Often these medical specialists are not covered by insurance.
And boy … comparatively, doesn’t baseball sound like such fun!? I’ve noticed no one plays therapy sessions on ESPN. “There goes Jim, trying out that new coping skill. Let's see how diversion works here.” “Ooohhh Bill, looks like that medication is a no-go! He’s gained 30 pounds in four weeks and still melting down!” “Looks like it's back to the drawing board Jim.” I digress … While I am sincerely thrilled about her kids’ successful futures, I’m thinking about how I’m just praying Max makes it to 11.
During Aunt Kay’s visit, Max hides in his room. She pops in tentatively to just say hello.
I get it. They don’t have a relationship because Max is difficult and anxious. A bi-yearly popover isn’t enough for him to lower his anxiety to trust. Aunt Kay is afraid of him. He isn’t a crawl-into-your-lap-and-cuddle kid (until he trusts you) and, well, that would require an amount of time that few people have. Max has no friends and no playdates. His dad and I are his only playmates. The silent illness.
There are no after-school activities. Most recently we were kicked out of swim class – which is the ninth or 15th after-school activity, I've obviously lost count. Aunt Kay says, “Do you think his therapy or medication is working? I’m so thankful I didn’t have to medicate my kids. Don’t you worry about what it will do long term?” Can you imagine saying that to a mom of a child with diabetes or cancer? My thoughts are more focused on the short term. When I think about the long-term, I think about ensuring he lives to see 11.
I try hard not to wallow in my jealous, monstrous feelings about how my life would be different if my kid’s illness was visible. Where people would show empathy and bring casseroles to my doorstep. Is it sad that I fantasize about having casseroles and cards (instead of stares and glares)?
After Max was hospitalized for his suicide attempt, I drove two hours one way to see him and talk with doctors. I cried all the way there and all the way back, for 15 weeks. I missed my kid. I was sad, mad, and conflicted. I didn’t sleep. I didn’t eat. And I worried about him constantly. Was he safe? Was he getting the help he needed? Did the Doctors understand? It was exhausting, and there were no casseroles on my doorstep when I returned home from those trips. The food train schedules and get-well cards are made for families who have visibly and socially acceptable catastrophes, unlike our invisible and unacceptable one. No one at the bus stop even ASKED where Max was. Instead, there were faces of relief that no one had to deal with Max for those seven minutes each weekday.
I'm tired of going through this alone, in blame and shame. So, I wish for a socially acceptable illness that would have people offering to help and not constantly tell me what I'm “doing wrong.” No one ever suggests the child in the wheelchair just isn't trying hard enough to get up the stairs or that Mom and Dad aren’t motivating her enough.
I wish others -- neighbors, teachers, family, friends, moms at the park, the man online in front of us at the checkout – knew about this invisible illness. I wish people would stop blaming me. There is nothing I am doing or not doing that controls his BIOLOGY.
I want people to know I am searching high and low every day for ways to help my child. Please know I've tried every behavior intervention out there, diets, vitamins, minerals, allergies, parasites, viral loads, a dozen types of therapies, and two dozen different medications. I’ve devoured countless books, listened to infinite podcasts, read endless articles, and watched endless YouTubes. Nothing has changed the trajectory of my child's illness. Even the doctors don’t seem to know what to do. I wish for doctors (who are covered by insurance) who have a treatment plan, an actual path to potential help. Most have a willy-nilly plan: “This medication works for 30% of the people, 30% of the time with 30% different behavior interventions when the moon is full, and he is spun counterclockwise (or was it clockwise?) while having cinnamon sprinkled on him. Try it for a month, see how he does?” Months turn to years of medication after medication and struggle after struggle.
Do I think therapy is working? Yes and No.
I think Max can tell you what to do (or what not to do) when he is calm.
When he is calm, he has access to his frontal lobe, which helps solve problems and is the voice of reason. When Max is upset, that part of his brain is offline. When the frontal lobe is down, his amygdala – that flight-or-flight irrational part of his brain is running the show. The amygdala can’t tell if I’m a friend or foe and everything is perceived as a threat. With the voice of reason offline, just DUCK, COVER. All these things come together in a perfect storm. But Max is a kid that is smart enough to know that his brain lacks the ability to control this biological chaos, so he prefers to be alone. That way he avoids all the things that could send him into a tailspin.
He hates when the rages happen. And he hates himself. I certainly don’t love the cursing, breaking, and refusals. I could punish the behaviors that occur during the rages. But I tried that already and it didn’t work. IF it’s biological like doctors suggest, what good does a punishment do? Does it decrease dopamine? Does it increase serotonin? Does it make him act differently? No. These punishments don’t change his biology. Medication has been the BIG promise to control the biology. To have some medication combination that would kick his frontal lobe in gear would be great. A medication that calmed the fight-or-flight response from his amygdala would be wonderful, too. And something for the constant irritability would be the icing on the cake. We have tried and failed on several. Too many attempts all crash and burn. So, no, basically no, not yet. Keyword YET! But I'm hopeful. I’m finally hopeful. I found a website that talks about DMDD and an actual treatment plan developed by a doctor in Texas. Now, to find an affordable, willing psychiatrist to listen, not lecture, and take the plunge with me, trust me, to possibly help and guide my kid and our family to some semblance of happiness. I can’t wait to follow up with our success story!