No Matter What (Doesn’t Make It Easy)

I watch a lot of TED lectures. If you read this blog, you’ve probably picked up on that by now. Among my favorite speakers is writer Andrew Solomon. He is eloquent, funny, and has a deviously charming smile. The topics of his TED lectures span love, parenting, and psychology. Today, I settled in to watch a lecture that I thought was going to be about mental illness but turned out to hit just as close to home.

It hits me where I live because, from day one, Mini-me was never what you could call normal. The product of a horror show delivery, he had to be restarted (which is my polite way of saying he died) twice. Within the day, doctors found a spinal birth defect which necessitated surgery to repair at five months old. From the outset, he had developmental therapy and regular testing which also revealed something unusual about him. While physically he was always a little behind, cognitively he was far ahead of his peers. He still is. Right now, there’s one other child in his classroom who keeps pace and even slightly outshines him. I give him encouragement and kudos for his accomplishments. But I’m careful that his intellect isn’t the only thing I praise. I know all too well from my own upbringing the damage that can come from thinking the only thing you’re good as is being smart.

When he was about 2 1/2-years-old, he started showing behavioral problems. He could only identify emotions as angry. He pitched epic fits just at preschool. I didn’t see it as anything other than difficult preschooler behavior. Sadly, I had other worries distracting me. My relationship with his father was on a down slide so steep and fast all I could focus on was how to fix it. I was laid off from work. And the mental illnesses I’d been staving off set in with vicious intent. While he didn’t go ignored, I fear that Mini-me’s behavior didn’t get the serious scrutiny for bigger diagnosis that it should have.

Time flew on.  My mental health imploded. My relationship with his father imploded. Our custody case imploded. With mental illness and no financial resources, I had no way of putting up a good fight in court. In the end, I was left with bare bones visitation and legal custody that was no more than a  joke. Although legally his father couldn’t enroll him in school or take him to a doctor without informing me and getting my consent, it didn’t stop him. Immediately and effectively, I was cut out of my son’s care.

When he was in the first grade, Mini-me started telling me that he wished his father would run him over with a car so he could die. Calmly and conversationally — because I’ve been through a whole lot of therapy — I asked him why. He told me that life was too hard. And my heart broke. All of the hurt I feel because of the cruel things my own mental illness says to me was revisited tenfold. I would give anything to keep him from feeling that pain. Anything. And I couldn’t stop it from happening.

Up until that point, I hadn’t given a lot of serious thought about Mini-me having a mental illness. I thought in a vague way that, if it were to happen, I would love him just the same and do whatever I could to get him treatment. I’d never really thought about having a critically ill newborn. The effect was the same. The wind was knocked out of me in one brutal blow.

What I didn’t know, because the school didn’t know I existed in any official capacity, was that Mini-me was terrorizing his classroom. His out of control behavior included pounding on the windows, running out of the class, dissolving into crying jags, and yelling. Now, this is one of those things I think every delusional parent says about their child. But, this behavior is bizarre for the Mini-me I know and love. My son, when he’s with me, is quiet, polite, thoughtful, funny, and easy to handle. He does have a hair-trigger on meltdowns. If he thinks that he’s in trouble, he will dissolve into tears in a nanosecond. But I can’t remember the last time he was really in trouble. I don’t think I’ve put him in time out since he was in diapers.

That year, his father asked me to sign a form from the school so that a counselor could go talk to Mini-me in the classroom. I thought it was great and didn’t think much of it. That winter I was first diagnosed with ADHD. Because it has a huge genetic component and I could clearly see the signs (now that I knew them) in Mini-me, I called his father. It took a week to get him to return my call. When I told him I thought Mini-me should be tested, he replied that testing had already been done and Mini-me had been diagnosed with ADHD and high-functioning Autism or Asperger’s Syndrome. It’d been five months and this was the first I had heard of this.

I could write this post about co-parenting with a person who has no intention of co-parenting. I won’t. I have a certain amount of anger but it’s on Mini-me’s part. I wonder, in that nearly half-year, what I could have done differently to help him had I known all the facts. I often wonder what I still don’t know. I’ve resigned myself to doing the best I can with what I know. It’s not ideal for Mini-me or my sanity. I don’t believe in God or praying, but there’s a famous prayer and the first line (other than God) is basically how I’m trying to cope. The Serenity Prayer  starts with: “God grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference.”

I could write a lot about co-parenting with a jerk but this one is about Mini-me who is a sweet little boy struggling against something he doesn’t understand. When he has difficult behaviors, I try my best to talk to him about them. I make sure to keep my voice quiet and calm and I ask him direct questions about what he did and why. Mostly he can’t tell me why. He just feels like he had to do it. One of his big issues is not understanding the behavior of other children. He doesn’t like to be the center of attention and he really doesn’t like other kids getting up in his face. Often, he will put on a growl and tell them to get away from him. Friendly, right? I try to help by explaining why the kid or kids are acting the way they are and talk him through what he can say that’s direct but not mean to get them to back off. I’m not sure how much really gets through. He gets upset talking about these incidents because he feels he shouldn’t act “bad”. Once he’s upset, it’s hard to talk to him. If I push too much he shuts down or if I don’t push enough he changes the subject.

In the past two years, he’s started on medications. The first one, an antidepressant, really made a difference. He’s not talking about suicide anymore. In fact, we recently came across the word suicide and he asked me to explain. It made him sad and he said he didn’t know how anyone could be so sad they would want to kill themselves. The feeling it gave me to hear that is tantamount to relief but so much bigger. Recently he started an atypical antipsychotic. I have no idea why because I can’t seem to get the psychiatrist   — who is new and doesn’t really know the family dynamic — on the phone. I took this medication myself and it made me lactate so I’m not a huge fan of giving it to my third grader. Plus, he appears to have developed a kind of tick where he clears his throat. Someday I’ll get the doctor on the line and get some answers. Someday.

I still don’t really understand his diagnosis. I don’t know what it means for his future. I’ll be honest, it scares me. There’s only so much information you can get from Google. I think it would have been easier for me if he’d been diagnosed with mental illness. At least then I would understand what we’re attacking and how to go about it. This feels like groping in the dark for a light switch. While we all are looking for a way to navigate this challenge, I think he’s thriving or at least surviving.

Andrew Solomon is right. Because we love them, we all want the best for our kids. Having a child with disability or a challenge doesn’t change that and it doesn’t change the love you feel. I know that we’re chemically preprogrammed to love these screaming, pooping, drawing on the walls little monsters. But I’d like to think it’s more than that. The qualities I love about my son are many of the same qualities I love about the Bearded Gentleman and my family of friends. They have great senses of humor, they’re kind, they’re generous, they’re sort of goofy. I love my son not only because he’s my progeny but because he’s a cool little person. And I have every confidence that, should we survive puberty and being a teenager, he’ll be a really cool big person too.

Often I hear friends who are trying to conceive say all they want is a healthy baby. I speak up and tell them that they’ll love their baby no matter what they get. When I met my son, he was on a ventilator. He had an intravenous line going to his heart and several more going to other destinations. His head was bruised and scratched. His eyes were black. A few hours earlier we had been told that the doctors didn’t know if he would have normal intellect or be profoundly handicapped. I couldn’t hold him and I couldn’t walk because of the epidural. I was wheeled up to the side of the neonatal intensive care unit crib. I looked into his little dark eyes and took his little hand.

He grabbed onto my finger and my heart. I knew with surety, no matter who he is or the challenges he faces, this is my baby and I love him like mad.

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