Being a mom to three children -- an 8-month-old girl and 4- and 6-year-old boys -- is stressful for anyone, but for Jennie and her husband, Jim, who own a Mexican restaurant in upstate New York, the challenges have been acute. Alex, their eldest boy, has been increasingly consumed by the tantrums and obsessions that are hallmarks of oppositional defiant disorder (ODD), OCD and ADHD. As part of our series on families of children with mental health conditions, Jennie opens up about the fear, sadness and isolation her family experienced in their journey to get Alex the help he needed.
Early Signals
In retrospect, there were signs from birth. Alex would cry a lot and has never been a good sleeper. He had GERD [a digestive disease] so we attributed a lot to that. When he grew out of it, around 1, he seemed pretty happy for a while. But there were things. On walks with his babysitter he would pick up every piece of trash or lint and put it underneath his stroller. It wasn't something he seemed to be doing for fun; it was obsessive.
He is our first child, so my husband and I didn't have experience. We'd ask other parents, "Does your kid hit another kid when he doesn't get a toy?" And they would say, "Yeah, yeah. That's typical." Or, "Does your kid have tantrums?" And they'd say, "All toddlers have tantrums." But it was the intensity. It was overwhelming. We also started noticing sensory issues, like [Alex] not liking the way certain socks felt, not liking his hair combed, not liking his teeth brushed and not liking the bath.
Worsening Symptoms
The tantrums got worse and worse. Some kid might be playing tag and Alex would just tackle him, like it was a fight to the death. He didn't get that line of, "We're just playing."
He became more obsessive compulsive about things. I'd have to try and open the door handle five times, exactly, before we got him out of his car seat. If I didn't do it, he would erupt. Sometimes, the tantrums would last for two hours and they were really violent. He'd hit and throw things, and he was getting stronger.
Between ages 2 and 4, things escalated and escalated.
Searching For Help
People kept saying things like, "Oh, he's just tired. He's cranky." [So] we looked for different solutions, like seeing a naturopath and trying homeopathic remedies. We tried a gluten-free diet for months on end. I read every parenting book out there, thinking, "He’s just spirited!" We took all media and screens out of the house for months, thinking maybe that was contributing to this hyperactivity and aggression.
When he was 4, we took him to a developmental pediatrician who diagnosed him with autism spectrum disorder. We were surprised because Alex was very, very verbal. On one level, we embraced the diagnosis, because it was validation that something was there. At a certain point, we had begun to feel that maybe we were just really bad parents … maybe we were just failing. But on another level, it didn't really help, because it wasn't so much that we were having trouble getting Alex to talk or make eye contact; it was his tantrums. It was him bouncing off the walls to the point where it would take him two hours to unwind and go to sleep.
As time went on, we saw a psychologist, we saw a pediatrician, we saw a naturopath, too. He also received a diagnosis of ADHD and obsessive compulsive disorder. We said we'd never put him on medication, but we went back to the pediatrician who diagnosed him and said, “This isn't working, he isn't functioning. It's really, really not OK.”
Around the time he was going into kindergarten, they put him on an ADHD medication -- not a stimulant, but something to calm him down -- and it did make a difference, but his other behaviors were getting worse. We ended up putting him on an SSRI as well.
Our Breaking Point
By the time my daughter was born last year, Alex had just spun out of control. We couldn't get him to do anything -- it was harder and harder to even brush his teeth. He would make himself throw up. People would say, "Oh have you tried a sparkly toothbrush? Have you tried a rewards chart?" And we were like, "Yes, we've tried everything." So he had a mouthful of cavities and we were feeling incredibly guilty and stressed.
The tantrums got more violent. He'd give his brother bloody lips. He'd get ideas into his head that somehow his younger brother had wronged him -- it could be something like, “He's wearing a red shirt and I don't like red shirts, so I have to get him.” We tried our best to explain it to his brother, but he was 3 years old -- so little. We'd say, “Your brother has a boo boo on his brain.”
Then Alex would turn his anger to us. We stopped going out to family functions, we stopped going out much at all. It became so bad, Alex punched and kicked me in the stomach when I was still pregnant.
In our darkest moments we thought, We can no longer handle him. We didn’t know how much longer we could have Alex continue to live with us, but he's our baby. Our first baby.
As frustrating as it was to deal with someone who was constantly kicking at you, and spitting at you and pulling your hair, I remember one day when he was sobbing in the midst of his tantrum and he said, "I am just never going to be happy, ever again." It was so heartbreaking.
A New Approach
We got a recommendation from a friend to go to the Child Mind Institute in New York City, because there aren't a lot of child psychiatrists where we live. We were thinking it was going to be a one-time trip -- we'd get advice on his medications and maybe follow-up on the phone. We were going to wait to go until the [new] baby was 2 or 3 months old, but Alex became so bad, we went when she was 3 weeks.
We saw a psychiatrist who gave him an ODD diagnosis and recommended parent-child interaction therapy. It would last twelve weeks, with sessions once a week. It was expensive and all the way in New York City which is a five-hour drive. I remember driving back thinking, We can't afford this. How are we going to do this with three kids -- a new baby -- and the restaurant? But it was a medical emergency.
I have to admit, I was very skeptical -- it seemed similar to play therapy, which we had tried and it hadn't worked. At the first session, Alex threw metal chairs and punched the doctor. But around Thanksgiving he started to improve and by Christmas, he was like a different child. The therapy was intense -- it was behind a two-way mirror, the parents have a wireless earpiece in the air, and the psychologist is behind the mirror directing you as you're playing with your child.
During our first appointment, the psychiatrist said, “I would love for you to try this therapy,” but also warned us that the next step, if Alex got more aggressive and violent, was an antipsychotic medication. That was devastating to hear about our 5-year-old.
I couldn't understand it. Alex has never been exposed to violence, or poverty and he’s in a loving family -- kids with ODD have often been really traumatized. But they explained to me that Alex's fight or flight response is very easily triggered, and toward the "fight" response.
Where We Are Now
You graduate from the program after the child is in a typical range, but I'm not going to say he never has tantrums or doesn't get upset. He still struggles a lot more than a typical child might -- he's never going to be "cured" -- but now we have tools to help.
I think Alex is going to great things. He loves animals. He's been taking horseback riding lessons for over a year and he went to nature camp this February. He recently saw a news story on a project they’re working on at Cornell University to save the elephants, and he says to me that he wants to go to Cornell and be an animal scientist. And I tell him, I can see you going there. I believe you.
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