Two years ago, before we understood all that we do now, we were making our way through a very difficult time with our daughter. She was self-harming, and as it is for all families supporting children who have this disposition, we were frantic to help.
She was just plain as day, telling me her problem and the solution as though to say, “I am thirsty and am getting a juice box about it.” She said, “Mom, this is where I put the nail so that my bad brains could come out. I don’t want to be mean or mad anymore, so I am going to let it out.”
We spent an overnight and the following morning talking about how diabetics take insulin, and they have to do that forever to help their body work its best way.
At that time, I told her about my Polycystic Ovary Syndrome. I explained that one of the most difficult parts of having it was that I couldn’t have children.
Then I explained that not being able to make a baby led me to her. She thinks the words “silver lining” are silly because she isn’t lined in silver at all. Plus, now and at that time, she would much prefer a rainbow color scheme.
We talked about how when you have autism, we aren’t looking for a cure in our Ville.
We chatted as best we could about brain damage by way of alcohol exposure before she was born. I explained that we can’t take it out, even with the meticulous hole she had suggested in her beautiful and tiny temple. I told her that was an understandable idea, but it was the wrong choice.
Next, she and I discussed ways she could adopt a new way of thinking about the damaged parts, then find a new way to handle when she is mad. I reinforced that putting a nail in her face to let the brains out isn’t at all like letting the slime out of a gross old stress ball.
We also talked a lot about how when you are a teammate, you talk to your team about the next play. So if she gets another idea to solve this problem that we will talk it through together over popsicles.
So, to be clear, I was winging it.
My whole heart has always been in the job.
I think we are surviving with more grace and strength than I could have ever imagined. But still, I mostly just question my performance.
Again, I was winging it then and I still am. At that time, and to this day, the biggest heartbreak of all is that she thinks she has badness in her.
Seeley was diagnosed with autism and ADHD at four years old; at five, anxiety and depression were added, and we talked about fetal alcohol syndrome. At age six, her team at Mayo Clinic diagnosed and began treatment for Bipolar 2 with rapid cycling; they also noted ‘sleep disturbance’ at that time. She was seven when we got an official diagnosis of the fetal alcohol spectrum disorder that she lives with.
Back then, this situation started with a small bonk while swimming in the hot pool with a friend, only a small bump and a fast bruised area. That swollen, tender feeling always pulls at Seeley’s attention, and if self-harm happens, it will often explode over a prior boo-boo.
I didn’t expect to see my daughter scratching her face with a screw when she was seven years old. I didn’t expect to feel the heartbreak I did when I heard why.
I didn’t expect her to make an arrangement of metal objects into brass knuckles.
I certainly didn’t expect that this is how momming would go. I had no idea that two years later, we would still be fighting the urge to use makeshift stuff into arm scratchers and hard things into clubs to pound our property and worse.
I am still so bewildered by the fact that children so small battle matters of mental illnesses so big.
I didn’t know that a great big team, two rock-solid parents with a gifted, beautiful, and tough girl at the heart of it all, would feel so lost.
At that time, we decided that in order to best support her and to sustain the caregiver role with any grace, we looked into and implemented many more safeguards for our home, process, and plan for support looking forward.
Since then, we moved into a safer home, built a solid respite plan, and my husband and I are both actively working on goals physically, emotionally, both together and separately. I am also happy to report that each day we have great moments, even if the super challenging stuff still surrounds those sparkling parts.
Over the past couple of years, we have challenged each other, grown a whole bunch, and still we struggle with the same things.
All of our understanding has grown, even hers, but the ability to change the course of these problems still hasn’t, though there is way more aggression than self-harm now.
My husband Billy and I have been told that we need to reframe our hopes to us handling what happens better because she won’t be able to get better.
You simply cannot grow past brain damage. We can’t get meds balanced to help her bipolar, and her challenges around rigidity seem to grow.
We have gotten better at handling it with and around her, and her dad and I are both comfortable saying it’s the hardest thing we will ever do. We have also shown so many that they are not alone if atypical looks like this in their homes.
We will continue to break stigma by sharing because understanding grows with every post.
My whole soul felt recharged today so it makes looking back easier. This morning Seeley and I were calmly sipping my coffee. She even left with a coat! After a hellish few days this week, it made this start the best ever.
