When my son was diagnosed with bipolar disorder almost two years ago, there was so much I didn’t know.
I knew about manic and depressive states, but had no idea they could be mixed. I knew about cycling, but had never heard of rapid cycling. I knew of medications, but did not know that for many of them, the side effects can actually exacerbate the disorder.
I knew my sweet boy needed help, but I had no idea how to get it for him.
Two years later, I can honestly say that almost every practical thing I have learned has come from a single, but necessary source —
Other parents of mentally ill children.
Yes, there are great books that provide the basics — the medications available, the school accommodations necessary, the steps and tests for proper diagnosis, and a best guess as to treatment. These books covered about 25 percent of what I needed.
Everything else has come from living through my son’s own painful experience and the help of other moms and dads in the same boat.
No matter what the actual diagnosis (bipolar disorder, schizophrenia, schizoaffective disorder, major depressive disorder, etc.) there are parts of our experiences as parents that are shockingly similar, and yet, they are the parts no one really talks about when it comes to parenting a mentally ill child.
In an effort to help parents who do not walk this path with us understand a bit more, and to encourage all the moms and dads who do, I put together a summary of what we wish was better understood about childhood mental illness.
What Parents Of Children With Mental Illness Wish You Knew
We are doing everything we know to do, and it still isn’t enough.
It may not seem like it sometimes, but we have spent years trying to figure out how best to help our children. Medication trials, therapists, hospitalizations, and more medication trails — we are and have been doing every single thing we know to do and often, it still isn’t enough.
And that leads me to…
Resources are shockingly lacking.
When my son was first diagnosed, I thought it meant we would now have access to treatment options and doctors that would greatly improve his quality of life.
I love the doctors we work with, but I could not have been more wrong. Let me share a painful, but illustrative example.
Last fall, my son went through a horrible mixed episode with psychosis. He was literally out of his mind and sure that he needed to kill me and himself. I won’t go into all the details, in an effort to protect his precious heart, but it was really, really bad. We went to three ER’s (the only option we are given for these types of situations) and were turned away. My son was hurting himself and me, all the time, and there were simply no beds available anywhere in the area.
Luckily, we have a wonderful psychiatrist who helped us come up with a home treatment plan that stabilized him within a few weeks. But please hear me when I say, it took weeks and we had no recourse in the meantime.
The younger the child, the less anyone really knows what to do.
Because most of these diagnoses didn’t even exist in pediatric practice ten years ago, the truth is, we are on our own. Yes, we have wonderful therapists who give us ideas for behavioral management and doctors who work with us to see if any medications might help, but the reality is that there is just not enough information about how all of this works in children under 12.
Add to this the still very present myth that children can’t have these types of disorders (yes, many doctors were taught this in medical school and still believe it to this day, despite study after study to the contrary) and parents of young children are often working with professionals who are medically throwing spaghetti at the wall to see what sticks.
Stabilizing a child is not spoiling a child.
The nature of mental illness is chaos. When a child is unstable in every way, parenting looks very, very reactive and chaotic. Please don’t mistake this as “giving in” or allowing him to “get away with things.”
