Part 2: Pitfalls of an Invisible Illness — Where’s My Casserole?
Updated: Jan 3
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 use the word unhappy, but that's tip of the iceberg talk. What I mean is depression, anxiety, angry, aggression, irritability, inattention, impulsive, grumpy, fearful, rageful, explosive, refusals, hitting, cursing, kicking, throwing, holes in the walls, and tears …so many tears...our kid's and ours.
As useless and time-consuming as Facebook can be, it's where I found my tribe. Without this throng of strong parents who understood, I think we'd still be alone and lost. As parents, we were labeled and judged, too. But all these experiences brought us to the same place on the internet. There are actually parents out there who understand the unique experience of what it’s like to live with a DMDD'r. There is camaraderie in the deep sadness and frustration that comes with the inability to figure out how to influence or change those "character flaws" the world saw and shunned.
Our son Max was labeled and judged too. He was “the bad kid" and was described in reports as:
Doesn't appropriately manage frustration
Lack's ability to maintain focus
Distracted by his own thoughts
Just want's do his own thing
Inability to compromise
Unwilling to participate
Chooses to not put in any effort
Gives up to easily
Refuses to complete assignments or discussions
Not meeting his potential
Explosive, rude, bratty, out of control
Assessment after assessment after assessment.
He went from mainstream to Special Ed. He was identified for an individual education program (IEP). He changed classrooms and moved to different schools. He’s been hospitalized two times and received every therapy you can imagine: speech, social skills, trauma-based, play therapy, ABA, OT, PT, CBT, ERP, DBT.
We’ve gone to pediatricians, neurologists, therapists, developmental pediatricians, psychologists, psychiatrists, neuropsychologists, sleep doctors, feeding therapists, naturopath's, integrative Doctors, endocrinologists, shamans, rabbi's and priests (I jest) who have given us multiple diagnoses: ADHD, DMDD, ASD. Behind the scenes, the journey for us, as parents, was difficult. Our son was kicked out of schools, kicked out of programs, and was giving up. We were dismissed from multiple therapists and psychiatrists.
We saw a highly recommended doctor who charged $650 for an appointment that was not covered by insurance. After our initial 1 ½-hour session, he refused to see us again. In his words, he “helped simple ADHD kids", and my kid was too complex. Although I'm sort of grateful he didn't waste too much of our time (and money), I resented paying that bill. I also resented the famous authored doctor at $850 an hour who tried unsuccessful med after unsuccessful med over months costing the same as a small car and then dismissed us, again, I know a favor... but I resent paying a lot of these out-of-pocket doctors. Help, ESPECIALLY for children, should be easier to find, easier to access and be affordable.
There is therapy in our DMDD group about being able to recount our similar stories of shame and judgement. Stories of angry school administrators. Countless school meetings (504, IEP) and various kinds of psych evaluations. Due processes. Special Education Attorneys. Truancy officers, or police visits. Stories of babysitters calling you at work and quitting because they can’t handle your child. No notice. No warning.
Stories of being fired by bosses who simply "can't" allow you to be “late" anymore when your child is refusing school for the 80th time this year, or because you have to leave because they are being suspended again, or just because school is calling. Extended families abandoning these already struggling families. "Sorry, Christmas with the family again this year isn't the place for your child." Special Ed teachers suggesting yet another "Behavior Chart", punishment or "positive reinforcer as we are picking up the most recent one which was torn to shreds. Ruined birthday parties, ruined family outings, ruined vacations. Broken fingers, black eyes, holes in the wall and demolished electronics.
Assessment after assessment after assessment.
Doctor after Doctor, Acronym after acronym, chart after chart, hospital after hospital, the continued heartbreak. Despite eight YEARS of expensive therapies, seemingly countless interventions and failed med trials, Max still struggled. Our family struggled.
He felt broken. He could recite all the coping skills. He knew what to do. Yet he couldn't access that knowledge in those moments of BIG feelings when waves of emotions would wash over him.
His self-esteem was in the toilet, and he was drowning. He asked for a lobotomy, at eight knowing his brain was his problem. In the poker game of life, he held his chips close - unwilling to take any unnecessary risks that had any potential to make him feel worse. Occasionally, he would recklessly throw those chips in and try and sadly, these attempts usually ended in disaster, reinforcing his worthlessness and breaking his spirit. Always asking me "Mommy, Why can't the doctors fix me?"
Thankfully, Our little family has seen the good.
His excellent speaking vocabulary..."We prefer the anonymity of a big hotel" he told Aunt Kay when she talked about the bed and breakfast, they visited, just before his second birthday.
His love of reading, humor and laughter.. listening to him read the Sunday comics in voices with intonation and passion at four years old.
His self-advocacy, despite its inappropriate timing or verbiage, "I CAN'T DO THAT! You're NOT Bleeping listening to me!"
His deep belief of Social Justice and caring for our planet.
His persistence and perseverance when trying to solve a game or puzzle.
His wildly advanced sense of humor
His desire to make this world a better place.
But it’s been an incredibly long, rough road for my big-hearted, funny, smart kid in his short life. His exterior didn’t match his interior. He’s been unable to show the world his huge heart.
It’s been a cycle of defeat …… until we found www.rdmdd.com, which outlined a medication plan for addressing Max's issues.
After eight years and hundreds of thousands of dollars and hours, there was simply nothing to lose. We were friendless, struggling with school refusal and irritability. We had not been invited to family holidays in years. We couldn’t go on vacations. We were ostracized by neighbors and schools
We have been in survival mode, barely surviving.
It was rock bottom for my child and my family.
After the long, drawn-out process of medication adjustments for this brain-based plan outlined on the Revolutionize DMDD website, I reminded myself often, “It’s a marathon, not a sprint.” And the big reminder: “there's nothing left to lose”
And now, after a year on this brain-based medication regimen, my kid has had nearly a year of stability.
I look at his report card and the comments are much different these days:
Great job, Max.
Max is very talented, and I truly enjoy the creativity and passion he exhibited throughout this year.
Shows continued effort and progress.
Does a great job participating in the classroom and enjoys learning.
Stays on tasks and tries new things.
At the end of his 8th-grade year, Max earned
A+ 4 times,
3 A- grades,
12 As and
Years of walking on eggshells and an ocean of tears have morphed into calm seas and frequent smiles.
Magic? Miracle? MEDS! The right meds.
As I sit with the sun on my face at Max's 8th-grade graduation, I'm finally feeling hopeful for his future.