When my son was diagnosed with bipolar disorder virtually two years ago, there was so much I didn’t know.
I knew about manic and depressive countries, but had no idea they could be mixed. I knew about cycling, but had never heard of rapid cycling. I knew of medications, but were not aware that for many of them, the side effects can actually exacerbate the disorder.
I knew my sweet son required assist, but I had no idea how to get it for him.
Two years later, I can candidly say that almost every practical thing I have learned has come from a single, but necessary source —
Other parents of mentally ill infants .
Yes, there are great volumes that offer the basics — the drugs 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 mamas and papas in the same barge.
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 portions no one genuinely 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 promote all the mamas and dads who do, I put together a summing-up 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 expended years trying to figure out how best to assist most children. Medication trials, therapists, hospitalizations, and more drug 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 intellect 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 therapy 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 truly knows what to do .
Because most of these diagnosis didn’t even exist in pediatric practice 10 years ago, the truth is, we are on our own. Yes, we have wonderful therapists who devote 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 age 12.
Add to this the still very present myth that children can’t have these types of ailments( yes, many doctors were taught this in medical school and still believe it to this day, despite survey after study to the contrary) and parents of young children are often working with professionals who are medically hurling spaghetti at the wall to see what sticks.
Stabilizing small children 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 permitting him to “get away with things.”
Stabilizing a child is very different from spoiling small children .
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 simply making it up ? He is too young to truly be suicidal, right ?
Oh my goodness, he only 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 “re going to 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 rejected and determined to be behavioral and/ or a lack of good parenting in nature. Please don’t go there. Every single analyze presents very real and very distinct differences in our children’s brain scans. Add to the genetic component that must exist for small children so young to even receive one of these complicated diagnosings, and I can assure you that decision and presumptions merely prove one’s ignorance of a number of problems that is medical in nature.
We find 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 creating the next school shooter( the objective is promptly deleted and I move on) many mothers have friends and family essentially saying the same thing.
The only response I have is that these are our children. We watch the news. We know the reality of what has happened in some households. 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 room, with our child right next to us.
Our infants are still infants . 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 countries around the world. 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 require compassion and care. They need support and understanding.
They need to be treated like the precious human beings that they are.
** This post seemed originally on NotTheFormerThings.com.