The past year has been quite a struggle and while we have made improvements, it is far from over yet. Raising a child with ODD brings stress and exhaustion as well as great disappointment in the mental health services that are being offered. The understanding and improvements that we have made so far were not because of the therapists, psychiatrists and doctors we saw, but from our own research and study. We still would be in daily crisis mode if we hadn’t started to find solutions on our own. Currently, we are on a waiting list to see an ODD specialist, it has been a month of waiting so far. It feels pretty lonely. I am glad to have found in a Facebook group for parents of children with ODD that a lot of other parents feel exactly the same.
Our son age 11 has been diagnosed with Generalized Anxiety Disorder including OCD behavior and tics and with Oppositional Defiance Disorder. The ODD diagnose is misleading and frankly not very helpful, because it only describes the symptoms. Often he is oppositional and defiant. However, this causes most people to think he simply misbehaves and needs to be disciplined. It is true; my child will often lose his temper, deliberately annoy, actively defy, argue, blame others, use abusive language against us and have violent outbursts. In fact, bad behavior is exactly what I first thought was wrong with my child. And despite taking lots of parenting classes, I felt like an absolute failure. However, the commonly practiced parenting strategies do not work on my child. I read recently a good article describing the cause of these behaviors. A child with ODD is not adaptable. If they cannot adapt, the child will go into fight or flight response and usually choose the behavior that is most upsetting to the adults. This response is most likely caused by missing or not working neurotransmitters. For example, if he comes to the dinner table and the food is not what he was expecting, my son might throw himself to the floor and cry or he might yell at me: “Mom, you suck, this is disgusting.” It does sound like he is just a privileged, spoiled brat. It has been the hardest not to take his behavior personally, or in other words, not to react to this scenario, because it hurts very badly. And this kind of outburst has been happening several times a day. A reaction to it, while he is still in fights or flight response, will make it worse. It is not the time to teach him that it is not okay to talk to me like this. It has taken me long to learn this and I still struggle to not respond. Later I might tell him that I would rather have him say: “I do not like the food.” So far he still will choose the word disgusting over everything else. We still have a long road ahead of us.
He has a LOT of lagging skills (www.livesinthebalance.org by Dr. Greene) and he has a LOT of unsolved problems. For example, he has difficulties transitioning from one mindset or task to another or in other words, one of his unsolved problems associated with that is that it is hard to get him to go to school in the morning and that is mostly every morning and to pick him up and just go home or get him to do homework after playing or get him to go to sport practice after playing at home or get him to stop screen time. He has difficulty doing things in logical order or prescribed order. He has difficulty persisting tedious tasks. He has difficulty maintaining focus. He has difficulty considering likely outcomes or consequences (impulsive). He has difficulty considering a range of solutions to a problem. He has difficulty managing emotional response to frustration so as to think rationally. He has difficulty deviating from rules and routines. Chronic irritability and anxiety significantly impede capacity for problem-solving or heightened frustration. He has difficulty handling unpredictability, novelty. He has difficulty shifting from one idea or plan. He has difficulty taking into account situational factors that would suggest the need to adjust the plan of action. He has inflexible, inaccurate interpretations/cognitive distortions or biases (for example “Everyone’s out to get me,” “Nobody likes me” “It’s not fair,“ “I’m stupid”). He has difficulty attending to or accurately interpreting social cues. Difficulty starting conversations, entering groups, connecting with people. He has difficulty seeking attention in appropriate ways. He has difficulty appreciating how he is coming across or being perceived by others. Sensory and motor difficulties, for example he still will prefer to only use his hands to eat every single meal. Each lagging skill can have several unsolved problems that are associated with it, which I will not list, the list is simply too long. It is somewhat overwhelming but we are taking it one day at a time.
One of the hardest days for me was Christmas Eve. I am working on Christmas Eve as an Organist for our church. By the time the service started I was already pretty exhausted because as it is my family tradition we had opened our gifts that day. And while our son reacted to some gifts with great appreciation, it was my gift that upset him and causes him to say: “Mommy, you suck. I have the worst family. Worst gift ever.” It just was heartbreaking. And all because I gave him a gift that he had asked me to buy, so he was not thinking he would get it, because he felt Christmas gifts need to be a surprise.
I had arranged for several kid musicians to play their instruments during the Christmas Eve service. My son was playing viola, we had borrowed his 800$ instrument from school. We had practiced the day before and it went fine. As he got nervous before the service he was not able to play in tune anymore which he was able to hear and which is not surprising, as he only has played viola for three months. In ODD fashion, he went into fight or flight response and blamed his bow for it. While the service was going on and I was trying to focus on the very many Christmas Carols and how many verses to play on each and what setting to use he kept telling me: “I am going to break my violin. I am going to break it.” At one point he stabbed me with the bow and was pushing it together with one fist.
It is hard to love your child in a situation like that. I felt threatened and while I was able to stay calm, I was not able to focus on my job. Unfortunately, I will not be able to have my son play in church again, in order to keep my job. While I always have considered myself very patient, this has challenged me to an absolutely new level of patience that I am still working on to master. There are good moments. Yesterday, he made crepes for lunch all by himself and my hope for this new year is to see an increase in these good moments.
*The author of this essay wishes to remain anonymous.