Perspectives - The importance of recognizing conduct disorders as lifelong issues

[mindinggaps]

I am an adult who was diagnosed with ODD and some other related issues at a young age. If you're interested in my full story, feel free to read through some of my other posts and comments which provide more details. I am fortunate that I have transitioned to adulthood fairly successfully - I have a full-time job and stable relationship. However, ODD is still very much a part of my life and something which must be managed at all times. I take medication and engage in regular therapy.

It has taken me a while to fully recognize and come to terms with the reality of having to manage these disorders as part of life. Looking back I realize this is partly due to mixed messaging from parents and health care providers which created false expectations. There was always the hope that I would grow out of things or improve on my own. There was hope that when I was an adult, maybe medications could be reduced. I understand there was optimism and no one wants to accept a harsh reality, but I don't think this mindset helped me. By the time I was a teenager, I think it was probably quite clear to everyone around me that issues were simply a part of my existence. I wish this message was communicated to me as I would have helped me learn to manage things better.

At some point, we need to learn to cope with our situation and not have faith that things will improve. When I was old enough, I believe I would have benefited from understanding that this is part of life - medications and therapy would likely be necessary. Being a successful adult means having the ability to address these topics on our own. Yes, medications are needed and we need to learn on our own how to manage dosages and doctors. Yes, therapy is needed. Without accepting these realities, it is hard to truly manage on your own.

It is difficult because you don't want your child to feel broken or unwell. But for many behavior issues are part of life. It is like any other disease or diagnosis and patients needs to understand the implications and how they can be treated. In my experience, this would have helped with the transition to adulthood.

 

[KTMom91]

I agree, mindinggaps. My daughter was dxd in the fourth grade, was on medication, and I admit I was pretty hard on her with the logical consequences (Forgot your lunch? Guess you'll be hungry) or the time she left every single jacket/sweatshirt she owned at school and I sent her without, in December, with instructions to get her happy butt to the lost and found bin and FIND THEM, things like that. Part of that was because her father was incapable of managing his life and I was terrified she would end up like him. She is now a strong and capable young woman who handles her business with only mild anxiety. She is not on medications at this time.

Now, my husband (not Miss KT's father), who was about 40 when he was dxd, is on a seriously high dose of Ritalin and still has trouble executing. His time management skills are not the best, and his tendency to hyperfocus and then scramble to catch up is super frustrating. He forgets. A lot. When Hubby and I were in school, being dxd with ADHD or similar would get you into Special Education classes and then you were weird, so people faked competency all the time. They faked it until they couldn't make it, low wage jobs, crappy apartments, drive and determination pretty much gone because it didn't do any good anyway, and people simply existed. Hubby would have benefited from a course/program that spelled out exactly what he would need to become responsible for as an adult. The budgeting, the bill paying, the basic cooking skills, time management, all those things that we were magically supposed to know as adults.

There are options available now that were not there 50 years ago, but are we getting them out to enough kids? medications alone won't do it, and neither will therapy alone. We need to find a balance, as you said, and do what we can to foster independence, whatever that looks like for each individual.

 

[mindinggaps]

@KTMom91 Thanks for your valuable insights here. It sounds like you did the best job you could managing things with your daugther and I am sure her ability to cope well as an adult today is a direct result of that. Obviously the long-term prognosis depends heavily on the situation and the diagnosis, but for those who are capable, sheltering them from the realities of the world doesn't help long term.

Certainly in my experience, a big gap was getting the necessary information to understand and learn to live with my diagnoses as I developed. It's strange in a sense because those born with physical conditions (eg. diabetes), are often taught from a very young age about how to cope with their condition - what is required to stay healthy, how to manage treatment. etc. However, for behavioral or mental health conditions, it almost seems like people are afraid to confront that reality. As you say, I am sure this is partly due to stigma and the fact that previously such diagnoses could land children in special education or on the fringes elsewhere. However, today I think we have better awareness. I think it is extra important to teach as many life skills as possible in addition to the specific skills of coping with the disorder. It is certainly complex, but if possible, I think it will only help.

One obvious example for my case is medication management. Nobody ever really taught me how to deal with this as I grew up - decisions were made, things were not explained and I didn't understand how to make intelligent choices as a young adult. It should have been pretty obvious to me that medications were a must, but it wasn't. The result was that several times in early adulthood I discontinued medication with predictably awful results. Lessons were learned, but one of the things that ideally could have been prevented by confronting things a bit more head on.

 

[Copabanana]

At some point, we need to learn to cope with our situation and not have faith that things will improve.

Dear mindinggaps

I found your post to be brilliant and wise. So much so that I am somewhat stymied in how to respond.

I will start this way and then I will come back later after I have processed somewhat what you've written and how I feel in response.

I adopted my son as a single mother when he was 22 months and had lived in an orphanage-type situation until that time. He had been extremely deprived. Paradoxically, as a baby, I had suffered some of the same deprivation. I believed we were heaven-sent to each other I was extremely sensitive that he be stigmatized by the circumstances he had lived through (drug exposure, abandonment, etc.) and somehow I adopted the approach that love could heal. That he could be and was whole. That through intensive support and love and resources he could develop normally. In many, many ways he did. If there were problems I externalized responsibility, for example to teachers, and the school. I believed and knew our relationship was whole and loving and beautiful. If there were problems they came from outside of us. At the same time, I complied with the school's way of seeing him which was as an ADHD/Anxious type child.

What I am trying to say is that I NEVER really made room in myself, nor did I prepare him to cope with the idea that his "special" needs were okay and more than okay. Let alone did I instill in him the sense that there were resources and help and support, that he was entitled to have, and that he could access these and advocate for himself. This is to say I did not prepare him in any reasonable way to understand himself as a person with special needs and this was a solid and deserving and valid place to start. Rather I expected him just to improve, to do right, to do what I had done to make a life. What had worked for me was school and a profession. He would not or could not follow my plan.

The more he would not follow MY PLAN the more estranged we became, and the more lost, unmoored, and vulnerable he became. My entire relationship with him became that he follow MY CONDITIONS. Why? Because when he didn't I was the one who became highly anxious, completely unmoored from myself (let alone from him) brittle and rigid, and blaming. There was something in ME, not him. that could not cope with the situation nor did I seem to have faith that the situation would improve. (To paraphrase you.)

This is to say, all along I could not accept my own brokenness and therefore was completely unnerved by his needs. That I could not help him (or would not) felt like an accusation against me and my life. I became the broken one. My whole existence seemed to be undermined. (This happens to a lot of parents who come here.)

I believe now that there is brokenness in all of us. And parents (and most everybody else in this society) seem to think that there's something deeply wrong with this, and it needs to be hidden, removed, cured, treated, and gotten ridden instead of accepted as an integral and essential and even highly important and beautiful part of life and the human experience. Everybody needs some help. Everybody needs support. Everybody needs to be seen and acknowledged for who they really are. And I see that living this way, in actuality is the basis and beginning of a spiritual experience of life.

I have pretty much exhausted myself now. I don't have much else to add.

My son is homeless. In these terrible storms. I have seen him only once in the past year and it was to tell him that he MUST DO what I need him to do. To heal. I just somehow cannot accept the basic truth and wisdom that you begin with. I don't know how to move on. I don't know how to rejoin my son.

Thank you for your gifted contribution.

 

[mindinggaps]

Dear @Copabanana - Thank you for this thoughtful post and best wishes to both you and your son. I hope that he is able to heal.

Reading your post it is clear that you love and care for your son and had the best intent when raising him. Another thing we must realize is that every situation is highly complex and sometimes things can be outside of our control. While I do believe it is true that acknowledging the reality of a diagnosis and realizing it is part of life is important, of course it's not that easy. You have thought long and hard about what you would have done differently, which I think can be of benefit to others here. But no doubt you did many things right as well and you should also remember that. Our society today is also more accepting of mental health issues. I think that children now who are diagnosed and treated are less likely to be stigmatized and thrown to the fringes. Children who are told they have a mental illness are less likely to immediately think that are bad, different or that their life is over. I think many parents were right to be concerned with labeling their kids in the past.

Sometimes we also forget the power of luck. While I did okay, there were certainly times where things were on a knife edge and one subtle change could have sent things awry. In my early 20s I stopped my medications, nearly lost a job, torched a relationship and came closer than comfort to a homelessness situation. What is different between me and others - I was fortunate to avoid alcohol and durgs and to have medical intervention at a critical time, but also...luck. It could have been different.

 

[Copabanana]

Thank you so much mindinggaps. I hope you keep posting.

 

[Rockyroads!]

Thank you, mindinggaps and copabananas for your posts. There's a lot of knowledge and understanding!