Holding on While Letting Go

The contradictions of teenage mental illness


Reprinted from "Families" issue of Visions Journal, 2004, 2(3), pp. 20-21

stock photoOur 16 year-old son had just emerged from his bedroom. For most of the day, he had been agitated and uncommunicative. At one point, he was aggressive and intimidating. By the evening, I needed to take a drive to help me think clearly about whether we needed immediate intervention for the safety and well-being of our family. This usually meant calling emergency mental health services, who were familiar with us by now.

On this night, I had reached my limit of endurance. I needed to know whether our son was a danger to myself or another member of our family and whether he would abide by the rules of our home. When I returned from my drive, I conferred with my husband in our bedroom about a strategy to address our current problem. We mutually agreed on a plan and sat down to ask our son for clear, simple answers to some short, direct questions. He said he would not physically harm anyone in our home and would abide by the rules.

Our frankness seemed to open the door to new communication with our son. As I write, he is distributing a few resumes in search of a part-time job (a monumental effort — and though I have my doubts that he is ready, it at least has him looking to the future and engaging in a positive activity).

Our journey began several months ago, when after a breakup with a girlfriend, our son cut an arm and a leg in a criss-cross pattern over a large area. A knowledgeable friend assured us that self-harm and suicide were different matters and directed us to find some support.

We visited our GP, who decided that our son was depressed (after a very few questions) and prescribed 30 days worth of Prozac. He said he would see him again in 30 days. When I asked for a referral to mental health care, he told us that we would find resources in the community. Our next GP did not like antidepressants and reduced our son's dose by half. He talked of a psychiatric referral, but never followed through.

After the frustration of watching my son's health decline and of being told, "I don't have time for this," I asked my husband to accompany us to the next visit, so that we could express the concerns we shared more clearly. But as soon as the physician saw my husband and I standing in the room with our son, he became defensive and promptly told us he was not comfortable with adolescent psychiatry. He said he felt that he was not the doctor for us.

During this time, our son had been cutting himself deeper and more frequently. Rather than hide the cuts, he would stand in the open with blood running down his face, arm or leg. At times, he was blank and distant. His suicidal notions became apparent now, and he was determined that he would die. We became involved with Project Alive, and found a worker who became our greatest advocate. She saw the need for immediate treatment, but it took Emergency Mental Health, an urgent psychiatric assessment, and a few visits to emergency before our son was finally admitted. I had slept in the living room with him for at least three weeks before he was hospitalized. It was hell.

Our son spent almost five weeks in a youth psychiatric facility. He was diagnosed as having major depression and was released with a prescribed antidepressant and no follow-up. While there was a half-hearted effort to recommend follow-up therapy, our son refused the notion of any kind of therapy.

Back at home, things went fairly well for the first week, though we have noticed some odd behaviours. Some of the distressing behaviour occurred towards the end of his hospital stay when he initially did not want to come home. He also directed most of his anger towards me, which added to my distress. Since then, his behaviours have become increasingly odd and entrenched. He has begun to exhibit some risky behaviours, such as shoplifting and hypersexuality.

Thankfully, he has now agreed to additional psychiatric help, and we are waiting for his referral to be processed. Our wonderful Project Alive worker had the foresight to keep our file open a while longer and has continued to be an advocate. My husband and I are attending a psychoeducational course and have joined a family support group, both of which are invaluable resources. We are looking into a class or support group for our 13 year-old son, though there don't appear to be many resources for siblings in this age group.

Our family is tired and stressed. We don't live day by day; we live hour by hour, and minute by minute. In an unpredictable world, we have to be prepared for anything during the course of a day. Some of the greatest frustrations we have encountered so far, however, are the bureaucratic roadblocks and the health care professionals who neither take the time to get to know the family as a whole, nor listen thoroughly, objectively and empathetically to their concerns and observations.

Judgments and assumptions are still alive around mental health issues. There is no greater feeling of helplessness and hopelessness than having the people you most need to trust dismiss or minimize your concerns, leaving you to flounder through the system on your own. It is equally distressing to watch your child become replaced by a stranger, while each day begins in hope and ends in grief. Will our journey end in acceptance or recovery, or will it end at all?

Of course, although we've had frustrations with professionals, I do have to note that all the emergency services — aside from one particular ER doctor — have been fantastic. The problems generally lie on the other side of the crisis. Though we have been told our son has major depression — and certainly depression was a piece of the puzzle — what we see now is that when the mood is stable, what is going on does not look like simple depression. He had been on antipsychotic medication when in care, and this was tapered off as the doctor felt the medication may have been doing our son more harm than good. He finished his last dose when we brought him home and though he seemed more 'normal,' we have watched him slide every day since then.

The trick is getting people to listen now that he is not suicidal. Now that he has a diagnosis of major depression, it seems that anything I tell the doctor and certain professionals about the symptoms he is experiencing is met with the 'hysterical mother' wall. (Again, emergency health and some other advocates listen to us, and can see). I find the doctors typically listen better to my husband than to me — and though this must sound stereotypical, it truly has been my experience. Because of all the work my husband has missed attending appointments, and me being at home, we are pretty tight financially. We can't afford for him to miss a lot more work, and I could not leave our son at home all day if I went to work.

We are trying to find a day program, and he is being ping-ponged around in the meantime. We're told by the community support people that he is still in crisis and not ready for the program. He is on a wait list for a psychiatrist, and he just doesn't 'fit' anywhere right now. For now, he is involved in a youth program that he attended pre-illness.

He quit his band and has not been playing his instrument. He becomes bored with his friends very quickly, aside from a young lady who exhibits very risky behaviour. It is difficult to keep him occupied, especially during the day-time hours. Some days he sleeps a lot. Then we pay, as he won't sleep at night. There are other days when he is agitated, when dealing with him requires a great deal of tact and energy from us.

I miss our son. I want nothing more than to make him soup and make his problems go away. I am learning that all the love in the world likely makes a difference to him, but doesn't cure him and, at times, feels painfully futile. I am learning that there are moments that give you hope and sustenance. A genuine hug from our son at the end of a few hellish days seems to erase pain and revitalize energy.

We are getting to know him as he has become, and I am feeling myself begin the grieving process for the person we've left behind. He had so much promise, and I am trying to reframe my feelings so I can see that he still has promise, though sometimes it is hard to shift gears. He is very artistic and very bright. He was a high-functioning 16-year-old before he got sick, so he has a bank of skills to draw on.

But he can't seem to learn anything new. He doesn't read anymore, although he will listen to books on tape. He can't do his schoolwork, but he does remember most of what he had learned scholastically prior to his illness. In other ways he has regressed. He is learning about the pain of cruel comments from people about his 'weird' antics. We experience the pain along with him. We keep encouraging him and loving him and advocating for him — and that's all we can do. He will be an adult soon, and we are trying to maximize the window of time we know we have to be most helpful to him, to give him every chance possible.

I am grateful for the help our son and our family has received so far, but sometimes it is hard to express gratitude when you feel 'beat up on' and unheard by some of your encounters. I guess we are all vulnerable right now, so those feelings are greatly intensified. We advocate for our son, but as this is all new to us, we fall short with our lack of knowledge. This is why we are working so hard to learn as much as we can. It is an overwhelming task at times. We try to make hay when there are good days, but that also comes with all the other tasks that have been sliding and thus building. We are practicing — it's a big life change.

About the author

Pam's family lives in Victoria