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.”
Stabilizing a child is very different from spoiling a child.
A very young child can want to die, all the time.
You might be surprised at some of the darkest moments. But please know, they are real.
My son was first suicidal when he was 10 years old. Ten. He was not medicated at that time. Nothing was “causing it.” He went from being a slightly anxious and distracted little boy to wanting to die in a matter of months. People questioned it all the time.
Is he just making it up?
He is too young to really be suicidal, right?
Oh my goodness, he just needs a different diet and more time in the sun. He will be fine.
For many of our children, this is a daily reality for years. The only thing worse than your own child pleading with you to kill him so that he doesn’t have to suffer anymore, is not being able to help him feel better.
And that brings me to…
Judgment never, ever helps.
I am not sure I need to say much more here.
It’s shocking how often mental health issues are dismissed and determined to be behavioral and/or a lack of good parenting in nature. Please don’t go there. Every single study shows very real and very distinct differences in our children’s brain scans. Add to the genetic component that must exist for a child so young to even receive one of these complicated diagnoses, and I can assure you that judgment and assumptions only show one’s ignorance of a problem that is medical in nature.
We see the news too, and it’s terrifying.
This one has come up a lot lately, in support groups that I am proud to be a part of. Although I receive comments all the time online about how I am raising the next school shooter (they are promptly deleted and I move on) many parents have friends and family essentially saying the same thing.
The only response I have is that these are our children. We see the news. We know the reality of what has happened in some families. We are doing everything we can to keep our children alive and stable, with almost no real resources. This is a serious debate, and we are absolutely a part of it. But please don’t have it with us in our dining rooms, with our child right next to us.
Our children are still children.
This post is about my family’s worst days. Please know, my son is so much more than all of this.
He is bright and inquisitive. He has the best sense of humor and loves every single animal on the planet. He treats me with tenderness and affection that I consider a wonderful gift.
Our children, while complicated, are still children. They are not just a cluster of diagnoses and poor behavior. They are suffering in ways most of us will never understand. They need compassion and care. They need support and understanding.
They need to be treated like the precious human beings that they are.
**This post appeared originally on NotTheFormerThings.com.