The first time I knew something was wrong, my son was two years old.
Call it a mother’s intuition,
but it doesn’t take a genius to figure out that a barefoot baby in a diaper shouldn’t be physically capable of ripping his bedroom door of its hinges.
It isn’t normal for a child to literally never sleep and stay up in what can only be described as an INTENSE RAGE.
We tried everything. Early Intervention, play therapy, occupational therapy, you name it.
Do you know how hard it is to find a therapist who will agree to see a toddler? Everyone around me kept telling me he was “just being a boy” and we should eliminate red dye or have him tested for Lyme’s disease. That child just needs more time outside or maybe he needs a spanking, they’d say.
A firmer hand would do it, obviously it was through some shortcoming of my own that this was happening. At least that was the common thread. Maybe we could try essential oils. They helped someone’s third cousin’s neighbor.
I asked the pediatrician if he thought maybe it was lead poisoning. I tried to deny what I didn’t want to be true, but my heart knew. This was much more serious.
Please not my son. Not him.
My sweet boy who is my most affectionate child, who holds full conversations with adults, and loves music and airplanes. If he sees you in the grocery store he will remember that your son’s name is Jack.
He will ask about your grandma because she was coughing the last time he saw her at the park and he was worried. Who will ask for second helpings of food he doesn’t even like because he wants to make his mommy happy.
When he was seven, I heard the words “psychotic break” in reference to my son for the first time.
He had tried to punish himself for being off-task and losing a behavior ticket by removing his own arm. He was not successful in hurting himself and was physically fine, but it had taken four adults to subdue him, and he still didn’t seem rooted in reality as he rocked on the floor of the principal’s office.
That was the day I learned there can be a months-long waiting list for families in crisis. It took three months before we could see a qualified child psychiatrist. When we finally did, our son had already been in therapy for years and was prescribed anti-psychotic medication. It helped.
I felt like I had my baby back for the first time in years. He was also tested more than he had ever been before. A full-battery evaluation they called it this time.
We came out of the room with more than one diagnosis.
We transferred to a different SCHOOL, into a classroom where the number of students was smaller, teachers were trained to deal with neurological issues, and a therapist came in on a regular basis.
The next year he made a suicide threat in school. He’d been saying similar things at home. He was eight. I called Crisis Intervention. Did you know when you call Crisis they tell you to hang up and call 911 if it’s an emergency? I remember thinking to myself “Who calls Crisis Intervention unless it is an emergency?”
I talked to a counselor. They told me to take him to therapy immediately, but in the future unless he has actual intent (describes how he will do it) and access to a means to do it (are there weapons in the house?), not to worry too much. Kids say things.
I tried, but I couldn’t get an immediate appointment. I called our church, sobbing. The pastor was very clear that this was beyond the scope of what the church was equipped to handle, but agreed to meet my son for pastoral counseling so that at least we would be doing something as we waiting until his next appointment.
On the way to the church my son asked me if the light sabers from Star Wars are real. I told him no and asked him why. He mused from the back seat, “Oh, it’s just that if they were that’s probably what I would use when I cut off my head.”
There was no anger in his voice, just childhood curiosity.
The same curiosity was still there when he asked me at bedtime if boys needed nipples. If they don’t why couldn’t he cut his off?
A year went by, then another. We continued seeking treatment.
Sometimes he would get aggressive. He broke picture frames and ipads, but never hurt anyone. We would adjust his medication. Then one day he got upset because we said computer time was over and he wanted to watch a YouTube video.
He went straight for a butcher knife, and so began our first experience with inpatient treatment.
It wasn’t our last, he’s there now as I type this. In the past two months, he was transported to the hospital twice by ambulance and twice by police. I got a phone call this morning from the nurse because he needed to be put into the safe room after being violent with other patients and staff.
What I want, more than anything, is to break the stigma that surrounds mental illness.
I want people to understand that, although it sounds scary when you read these things about my son, he is not HIS ILLNESS. Your toddler is not defined by that one time they bit their sister or stole a candy bar from the drug store counter, and my son is not defined by his suicide threats or sometimes violent outbursts.
He needs medicine to control them, just like a child with Type 1 diabetes needs insulin. Sometimes those medication changes need to happen under observation. His illness is only a fraction of what makes him who he is.
Brains can get sick just like any other part of the body and when that happens, people need hospitals.
There is no shame in that, yet I cannot put his name or mine on this essay because I don’t want his diagnoses and hospitalizations to follow him into future job interviews or relationships. I want him to share his story on his own terms. Society is not there yet in accepting people with mental illness.
I am not brave enough to attach my name to this piece, yet I wish more people were willing to talk about it out loud. Because my son is not his illness, and I know that I’m not the only mother out there FIGHTING THIS BATTLE every day.
It is very compassionate of you to share your story. The stigma of mental health and “those” people are what makes seeking help so difficult. As a mother of four I was terrified of the things my community would say….I am deeply moved by your story and want to thank you for being brave enough to share it.
It took A few years to reach a diagnosis for our radically changed son. Psychosis was mentioned my bad parenting was mentioned everything you can imagine diet Lyme disease everything. We finally discovered that our child has post-infectuous autoimmune encephalitis. I’m not saying that this child is experiencing the same thing my child is experiencing, I’m just saying it took a long time for us to find the answer and the treatment and our son is forever changed and experiencing stigma of mental illness. The medical community is too slow to respond. My love and hope goes out to everyone trying so desperately to help their children.
This was my life for many years. It can feel like such a sad existence and at times I’ve feel completely alone in his battle. I’ve also blamed myself for doing this or making him this way. We have pretty much lost everything – friends, family, money, dignity but we continue to fight for our son.
Our son is now 14 and we have finally reached a semi- normal life with him. During his last hospitalization, his doctor took him off his meds and finally has a good combination that appears to be working.
Bottom line is that even though things may seem helpless there is still hope so hang in there. Thank you for sharing your story. Sending prayers to your family that your son will find health soon.
Wow. This story sounds so familiar. We still refer to my daughter’s fits as a youngster as “rages.” I’ve seen how a seemingly small child can destroy a bedroom, furniture and all. I’ve heard the term ‘psychotic break’ in reference to an incident that happened at school …looking back, it wasn’t the first. My mom is a big, “kids will be kids,” type person, but these episodes even left her (for lack of a better word) puzzled.
I kid you not, I thought she may even be possessed at times.
And I heard all the parenting tips… And none of them worked. Friends would be frustrated with their kids and say things like, “I don’t know why they’re so out of control today,” and I would look at them and say, THIS is out of control? Because it would’ve been a good day in my house.
It wore on me in every way. I was physically and emotionally drained. I had to switch insurance to help get her the care she needed. We’ve seen psychiatrists and therapists, there have been several hospital stays, different meds, etc.
Most people don’t really understand unless they’ve lived it.
She’s now in her 20’s and has her struggles, but has also learned a lot and thankfully knows how to advocate for herself.
Whenever I read these stories, I wish I had known at the time, it’s not just me… I thought support groups were silly. I didn’t realize until years later, reading articles like this, how much it may have helped.
Thank you for sharing.
I had similar issues with my son as a toddler and young boy, however, all doctors we spoke with said he was perfectly normal and so smart that he knew exactly what he was doing and was basically playing us. We got firmer with him and although that seemed to mostly subdue a majority of his violent outbursts, he never ceased to be extremely self destructive. I always knew there was something wrong, but never quite knew what to do, so I just tried to let him know I would be there for him regardless while giving him the s ok ace I thought he wanted. On October 19, 2018, at 20 years old, our son committed suicide. He had just gotten out of prison bootcamp after a year for driving a friend to an attempted robbery. He was staying with my nephew and his wife on my mother’s property, where she resided as well. There were not supposed to be guns on the property due to our son’s parole requirements. My mother and nephew told me they were all removed. They were not, more were they hidden from my son who had clear mental health issues. I will never erase that call at 12:48am on October 20th from my brain, ever. I will always wonder what I should have or could have done when he was younger. I will never not have that guilt hanging over my head. I will urge anyone and everyone to not turn a blind eye. Seek all the advice you can as early as you can. In the end, you will at least be able to say you tried everything, where as I feel I did not. I just didn’t think it was that serious.
My daughter was 14 when she had her first psychotic break. Came out of nowhere. She had all the symptoms…hallucinations, poverty of speech, catatonic, paranoia, She’s 26 now. About 28 hospitalizations until now. She lives in a group home, on the more independent floor and hopes to get an apartment in the community when they become available. She has held a part time job for over 3 years. It took a long time to get here and at times I never thought any of this would be possible. Hang in there, advocate for your child, contact NAMI to find help and support in your area. There is hope, sometimes it’s a very long road.
My middle step-grandson has been a ‘problem child’s almost from birth. He Screamed about EVERYTHING!!! He was mean, hateful, defiant, a bully who lied to Everyone and nothing was Ever his fault, and it just got progressively worse. I am the mother of a special needs daughter with some behavior challenges that we’ve struggled with for many years. She’s 38 now. She kinda grew out of the behaviors. Anyway, I taught kdg. special and reg Ed. for several years and we had an in-service about ODD-oppositional defiance disorder. It was almost a textbook definition of our little guy. ?? Unfortunately his mom and dad were Very offended when I suggested that they have him evaluated. He started school, had many problems, then,Thank God Finally!!! A school counselor recommended he be evaluated after he had been expelled for several days, Again! Anyway, it’s tough!!! We All want our babies to be perfect and we sometimes can’t accept that Anything might be wrong with our child. I knew at birth my daughter would have difficulties. I figured it out. I was her advocate and I learned all I could, got her into every therapy and program I could and worked thousands of hours with her, not to try to ‘fix ‘ her, but to help her learn as much as she could whenever she could. She has had Epilepsy from birth and memories often are lost with each seizure and it is a side effect of many meds she has taken for many many years. It has been the most frustrating, patience teaching experience, raising her alone. I wouldn’t trade it for the world, but having one child with problems is a little easier than having one very troubling child and three others who need attention and love too. Just know you are doing all you Can do, pray for guidance, LEARN All you Can!!! Be your child’s Advocate, Always!!! It Can be thankless at times, but we Love our kids, so we do all we can, that’s all we can do.
Thank you all for sharing your stories it helps me not feel alone . It also gives me a better understanding but I have such a hard time getting him a IEP even though he has ODD & ADHD so far but isn’t a discipline child at school so it’s almost impossible to get help and I’m just trying to get him the help before he becomes a issue . Any advice of ways to handle the school
I’m almost in tears right now. This could almost have been written about my son. So many similarities… He is in treatment right now, my husband and I are hoping to god it helps because we don’t know where to turn after this. Thank you for telling your story.