Did you miss me? Somehow I doubt it and that’s okay. I can live with that. My roles as a full-time mom, blushing bride, oddball artist, and mental health advocate have had me a bit distracted. But, I’m back and going to attempt to commit once again to stringing a few words together. Bear with me, I might be rusty.
I’m back. It’s been a bit. I’m going to say that I was on vacation. A really, really long vacation. Here we go.
I live with PTSD. That’s Post Traumatic Stress Disorder for those of you who don’t live and breathe mental illness. I do a lot of public speaking on mental illness and I’ve found that most people still think it’s only effecting combat veterans. I wish I had a polite way to express how wrong (and horrifying) that thinking is.
The truth is I used to think the same thing. When a psychiatric hospital doctor first probed my past and suggested my symptoms were PTSD, I was shocked. But, as it turns out, it’s a disease linked to trauma. It’s not picky about what kind of trauma. In my case, I lived with emotional, physical, and sexual abuse as a child and into adulthood. I can’t recall when the abuse started. It was always there. It lasted until I was almost 30 when I cut ties with all toxic influences and started rebuilding.
The two symptoms of PTSD that I find to be the most problematic are nightmares and exaggerated startle reflex.
Sometimes I’m shocked at my ability to normalize things that are not normal at all. The nightmares were constant. They involved the toxic people in my life taunting me in some way. My volatile mother screaming at me. My ex-boyfriend laughing at me while in my bed with a women with whom he had cheated. I would wake from these nightmares, which I politely classified as bad dreams, shaken and agitated. What was worse was that I couldn’t shake that feeling of unease throughout the rest of my day. No matter what I did, a little toxic cloud followed me around.
My nightmares became so severe they impaired my sleep. I would wake every few hours in a panic. Even when I did sleep, I never felt rested. Anyone I shared a bed with reported that I was a restless sleeper. I tossed and turned and sometimes even failed. I’ve punched more than one bedmate.
My startle reflex has been a problem for years but I always just classified myself as jumpy. A sudden, sharp noise would always illicit a screech from me. And I’d be left emotionally clinging to the ceiling like a cartoon cat. That alone might not be considered all that odd. For me, however, the aftermath is miserable. My muscles seize and are slow to relax, if they relax at all. I’m left agitated and anxious. Those feelings stay with me, sometimes for the rest of the day.
In PTSD the central nervous system (the nerves of the brain and spine that control everything) runs hot all the time. A person without PTSD could be startled by a loud noise, have a little response, and go on with their day. Since the person with PTSD has an inflamed CNS, their response to that noise is heightened and the CNS remains heightened keeping them alert for further danger. That’s the bottom line. In the person with PTSD, their body has been primed to danger and is working overtime to be ready for anything.
While I appreciate that my brain is trying to keep me safe, I would very much like to be able to open a can of Pillsbury Doughboy Biscuits without screaming and ruining the rest of my day. Yeah, I’ve got big goals.
It’s hard for me that my symptoms effect the people around me. The Bearded Gentleman is probably the person who takes the most flak. He’s developed this habit of making noises when he comes into the house or into a room where I’m not looking in his direction. We shout out the word “Moo” a lot around here. It’s a sort of demented safe word that keeps me from loosing it on the regular.
I think the symptom most people think of when we talk about PTSD is flashbacks. It’s really unfortunate that the only way popular media has found to show flashbacks is as a sort of visual hallucination. For me, my flashbacks only happen under times of extreme stress. That stress typically has a direct connection to my trauma. My flashbacks mostly happen in the form of a body memory. That means that I experience, in my body, the sensations I had during the trauma. It has to do with feelings but also things like muscle pain, chest tightness, and dizziness.
I do take a fair amount of medication to help regulate my deraigned CNS. My startle reflex is calmer than it used to be. It’s still far from the average. Because of medication, I also no longer remember my dreams so they don’t haunt me. I’m sure I still have them. The Bearded Gentleman consistently reports that I still toss, turn, and occasionally flail and talk. Therapy also has been important. I’ve done cognitive behavioral therapy for ages. In the past year I began seeing a therapist skilled in dialectical behavioral therapy. Whereas CBT is “Why is this happening?”, DBT is a “What is one simple thing do we can do right now?” approach. Both are incredibly helpful in different ways.
I think anyone who lives with a chronic illness has frustration. There are elements that can be managed but true control is an illusion. And it’s often aggravating to have something so important be out of my control. I suppose there’s a life lesson there. It’s mastery of being at peace with not being in control. I’m not there yet. What was it Scarlett O’Hara said? “Tomorrow is another day.”
If you have eyes or ears you already know there was another mass homicide this week in Charleston, South Carolina. A young, white shooter walked into a historically African-American church and killed nine blameless people. He’s been apprehended and his manifesto of racial hatred found on the internet.
As a journalist, I’m trained to always write that a person allegedly did a crime. Since this is my blog and I’m not paid to be impartial here I’m just going to work on the assumption that the disgusting maggot is the right maggot. After all, he apparently is seen on video footage taken at the church just before the gunfire began.
I’ve internally debated writing about this subject at all. On one hand, these mass murders are creating a legitimate concern for those living with mental health problems. On the other hand, I’ve read the attention media is focusing on these horrible crimes is spurring would-be homicidal asshats to copycat crimes. Yes, I said asshat. If the shoe fits, wear it. I’m no specialist in criminology so I can’t say if that theory is true or not. It seems plausible.
But from where I’m sitting, these asshats and the media, both legitimate journalists and pundits, are doing serious disservice to the mental health community. When crimes like the ones in Charleston, Isla Vista, and Sandy Hook happen, the media seem to immediately question the shooter’s mental health history. You know the internal system you have that gives you red flag warnings? This leap to assume criminals are mentally ill immediate raises my red flag. I have no doubt that some mass murderers are mentally ill but no more often than electricians, teachers, or doctors.
The problem as I see it is that we, as a society, don’t want to admit that some people are just evil. It’s far easier and quantifiable to say someone is mentally ill. There are tests. There are charts. There are doctors. As far as I know, there are no doctors with handy dandy tests to diagnose a case of evil. But evil exists. And I’m not talking about the bible and demons and possession. I’m saying that some people, for whatever reason, are wired to want to harm the world around them. Like autism, evil runs on a spectrum. There are people who kick their dog when no one is looking. There are people who abuse their spouses. There are murderers and mass murderers.
It’s also easier to blame mental illness for those evil actions rather than truly address the cancerous societal issues spurring them on. The Charleston shooter was deeply racist and supported by a culture that tolerated or even encouraged it. The Isla Vista shooter was deeply misogynistic. The Sandy Hook shooter looked to cause pain to his family and community. All of them had access to weapons that have no place being sold to the general public.
Racism. Misogyny. Hatred. Gun Control. No one wants to talk about these over the dinner table. We should.
At the same time, we should also be talking responsibly about mental illness. I live with severe, persistent mental illness and speak about it openly and publicly. I speak out because I know many people don’t understand that the face of mental illness is not only a homeless person talking to the air on the street. Many of the people I meet do not expect an articulate, intelligent, well-dressed young women with a master’s degree to have four mental illnesses. But I am the face of mental illness.
It is terrifying to me that some people, including legislators, would create a registry of mentally ill people. I realize their intentions – like trying to prevent suicidal people from having access to weapons – are good. But the ends to which that could be used are disastrous. Stigma is real. Stigma is alive. Even as a functionally mental ill person I have met with it in awful ways including bias in family court proceedings. I fear that if my name were ever put into a national database, I would lose many freedoms that my anonymity provides.
Even though I’m public with my illness, I don’t present it at job interviews, if I were buying real estate, or when I meet my child’s teachers. I don’t need to because it isn’t pertinent. Realistically, if a registry were made I would be branded in the same way as the Megan’s Law Registry keeps the public aware of convicted sex offenders. I have a genetic defect that causes my illness. I did nothing wrong. I committed no crime. The concept is as ridiculous and pernicious as rounding up diabetics, cancer patients, or people with blonde hair.
It’s not to say that crimes aren’t committed by those with mental illness. It happens. But no more often than crimes committed by those without mental illness. Studies have even shown that people with mental illness are more likely to be victims of crime than commit it. Rather than focus the spotlight on mental illness, I would like the media, society, and families to put the focus where it really belongs. Let’s attack hate first.
So, I’m about to talk about Mother’s Day again. I completely understand if you want to leave the room.
I’ve seen a lot of social media posts in the past few days addressing how to compassionately address Mother’s Day for moms who have lost a child. It’s an important topic that doesn’t get enough attention. Because of my history, I can tell you there is another underrepresented class of mother aching on Mother’s Day. It is mothers who have lost their children in court. Like me, they’ve lost access to their children in custody battles that are often contentious and heartbreaking.
These mothers are often misunderstood because there is an assumption they’ve done something inexcusable, like abuse, in order to have lost custody. In my case, it was a combination of my mental illness history, testimony of my vengeful parent, and not being able to keep up monetarily with the other side. I’m not sure I can adequately explain how awful it is when – and it really happens often — acquaintances and strangers alike assume I have custody of Mini-Me.
I’ve made my list of things to say to and consider for non-custody mothers on Mother’s Day. Whatever you say, it is imperative to keep kindness at the forefront. These woman, and I count myself among them, are hurting in a deep way. Six years after the ruling, my heart still hurts every day for my little boy. These women spend their days thinking about their child but not talking about them. When they do talk, it is guarded to protect themselves from seemingly innocuous questions that are invariably painful to answer.
Here’s a little list which I hope will help everyone have a happier Mother’s Day.
Say It: Wish her a Happy Mother’s Day. Whether you have your child or not, it is still Mother’s Day for you. She still gave life to a beautiful little person. Whether I see him every day or alternate weekends, I still think about Mini-Me all the time. I love him every second of every day. The love you feel, the concern you feel, and the pride you feel is no different than any parent in a traditional situation.
Ask: Ask if there’s anything you can do to make this day special. It is still a special day and non-custody moms don’t get the benefit of breakfast in bed or hand-printed cards. It feels even more important because it is so abundantly clear that other people are celebrating this holiday. There are those who would argue that Mother’s Day is a Hallmark holiday. That it really shouldn’t matter. It’s been suggested to me that it’s superficial to have negative feelings about not celebrating with my child. Intellectually, it makes sense but in my heart I want my baby. And I want to be recognized as his mom.
It’s Okay: It’s not a faux pas to ask where my child is on Mother’s Day. I think it’s more hurtful when people pretend I just don’t have a child. It invalidates my journey as a mother. I understand the cause is often because my situation makes them uncomfortable. They don’t know what to say, or want to cause me hurt, so they don’t say anything. For me, it is completely normal that I don’t have my child on that day. That is my life. It is the reality I live in. If you ask, I’m thoroughly prepared to answer. It is true that I don’t really want to tell you more. I don’t want to tell you that my child is celebrating his stepmother. But telling you the status is more comfortable than ignoring the fact he exists.
Stay Positive: I understand that my situation keenly strikes most people, especially mothers. Please do not tell me that you feel sorry for me. Keep it to yourself that the situation is horrible. Save it for another day. It is a torture in itself that I don’t know what pajamas my son wears to bed or what he ate for lunch. The horror of my custody situation is brought home to me every single day. I do not need anyone else telling me how bad it seems to them. It is a kindness if you keep your thoughts to yourself. Considerate it a Mother’s Day gift. Instead include me in conversations about your kids or, if you have little ones, hit me up for parenting advice. I’ve got some good experience.
Love Me: Please give me an extra long and tight hug. There have been many studies saying that physical affection is an amazing deterrent to emotional pain and depression. So help me out on Mother’s Day (or any day of the year) and give me some extra love. Don’t forget to tell me that you love me. There are very few days on the calendar when I need to hear that more.
Believe it or not, I love Mother’s Day. I think it’s immensely important to celebrate the tireless women who pick us up and brush us off when we fall. They are selfless women who guide us with love and candor. They are the center of our world who, no matter how old we get , we always want when our world is collapsing. So this Mother’s Day, give the mother in your life an extra tight squeeze and let her know how much she means to you. it doesn’t matter whether she is the one who you were born to or if she picked you up and made you her own. The result is the same. A mother’s love is a priceless gift.
I am blessed to have a mother-in-law in my life who scooped me up and made me her own. Judy, aka The Benevolent Mother, thank you so much for all that you do for me, Mini-Me, and The Bearded Gentleman. You are the heart of this family. You are a thoughtful, loving mother and an amazingly adoring grandmother. Please know we are always grateful for all that you have done and all that you do (especially trying your hardest to feed me!).
Happy Mother’s Day to my little Pickle. He’s no longer this tiny but he’ll always be my baby.
I have mommy issues. There’s no way to sugarcoat it. I haven’t spoken to my mother, or any other member of my biological family, in about six years. The painful dysfunction that caused me to turn the rift into a permanent ravine left an intangible scar. It’s brought home to me often especially as I raise Mini-me.
I’m trying extra hard to not screw him up emotionally.
Mini-me was diagnosed with Aspberger’s Syndrome a few years ago. I still am not sure I agree with the diagnosis but I know that my child is not exactly ordinary. He has trouble understanding other childrens’ motivations and hates attention from other children. He get frustrated because he can’t translate his emotions into useful actions. Basically, he’s every adult male IT professional and engineer I’ve ever known except without the benefit of alcohol, sex, and illicit drugs to burn off steam.
But, when it comes to me, he’s incredibly tender. When he thinks I’m upset, he gently strokes my arm or shoulder and asks, in the most precious voice, if he can get me anything. This weekend I’ve been suffering from some pretty awful nausea and dizziness. As we settled into bed for a movie marathon, he arranged my pillows and tucked me in under the fuzziest blankets we have. I know there’s a beautiful, caring person growing up here. So far, despite having dysfunctional parents, I’m pretty sure he’s not going to be a serial arsonist or cannibal.
So, mothering is a huge issue with me. On the day Academy Awards awards are handed out to moms everywhere, I cringe. No one celebrates me on Mother’s Day. It shouldn’t matter but it always feels like a slap in the face. I rarely have my guy on that Sunday, which is out of my control. Instead Mini-me has been encouraged to celebrate his stepmother. The intellectual side of my brain admonishes me for being petty, jealous, and putting stock in a Hallmark holiday. But the rest of me feels left out of a holiday that all the women around me seem to be enjoying.
It doesn’t help that, on that day, I remember my mother more than ever. With my mother, the good is deeply enmeshed with the bad. I might remember the boutique of lemons she sent when I got divorced and smile. Or I might remember her violent, unpredictable temper and still smile. Smiling is far easier than explaining your demented childhood. But whether I say it or no, I still think of my mom. The grief that goes with my memories is palpable.
And I don’t have my baby either.
You can see why tears are very common on that stupid, obnoxious, important Sunday in May.
For the past four years, I’ve had a mother-in-law who is kind and thoughtful and wise. She and her son have made me a part of their family. Being able to celebrate her as the Benevolent Mother in my life has taken some of the sting out. I suppose it is a matter of re-framing the situation. I’ve had mother-in-laws before. Two of them, in fact. Neither of them liked me very much. I guess I’m an acquired taste. Before the Bearded Gentleman’s Benevolent Mother, I never felt like I had a second chance at having a mom. The Benevolent Mother has given that to me. She’s also, as far as I can tell, the only person who consistently reads this blog. Now that’s a seriously mom thing to do.
When the tallies are made this year, I’m coming in with some positives and some negatives in the mom category. Some days I have tears and some days I have laughter. Some days I have both. Those are the best days. It’s been suggested that I just focus on the good things. But I’ve found that my particular grief doesn’t work that way. I do not have tunnel vision that allows me to ignore hurt. Right now, I’m finding solace in my weird, wonderful little boy. Right now he wants to snuggle with him mom and giggles while scowling when I use swear words just to tease him.
Too soon, he will become a teenager and find me impossibly embarrassing. He will go to college (preferably and probably) and lose himself in learning. He will find a love partner and maybe even start his own family. Eventually, I hope, even more than celebrating me on Mother’s Day, he’ll call me on a Tuesday night to catch me up on his life. I hope he knows I will always answer the phone.
Well faithful readers (and not faithful readers), I’m back. I hope, and doubt very highly, that my absence in the blogosphere ruffled any feathers or caused any distress. How about a quick update before I get to the point? I stopped writing mainly because I dipped my toe into the minefield of resuming work while disabled.
I landed a six-month contract with the local affiliate of the National Alliance on Mental Illness (NAMI). It was amazing. In addition to public speaking and facilitating a support group, I was handed the opportunity to run a public outreach program and spearhead the implementation of a class for peers (people living with mental illnesses).
I learned things and that always makes me happy. But even more important, I worked in an environment where I didn’t need to hide the symptoms of my mental illnesses. I could talk about it freely and even make bad jokes. It was incredibly freeing. But all good things come to an end. It’s should be no surprise that budgets at non-profit organizations are tricky at best. Although they tried, there was just no way financially to keep me.
A few things happened as my contract was coming to an end. The bearded gentleman changed jobs from a daily ghastly hell to IT Director for a little company in another county. We learned we had to move a month earlier than we expected. And, wait for it, I got a text message from Mini-me’s father saying his tumor had returned and he needed to have another spinal surgery in a few short weeks. Talk about a bad month.
Here comes the back story. When Mini-me was in the NICU after he was born, they found a sacral dimple. Basically, this is a hole at the top of his butt crack (there’s no delicate way to to go there) that goes from the surface down to the spine. It alerted the doctors to the possibility of a spinal cord birth defect. After a few MRIs on my tiny infant and a consultation with the best pediatric neurosurgeon at Cedars-Sinai in Los Angeles, it was confirmed. My baby had a spinal birth defect. My baby needed spinal surgery. My baby had a benign tumor in his lower back tethered to his spinal cord. My heart was breaking into a million tiny pieces.
He had the surgery just shy of 6-months-old. It went really well as far as I remember and the two weeks of immobilization were surprisingly easy. He healed up fine and had a hot scar to show for his efforts.
We were told if he made it to five-years old without re-tethering, the chance of it ever returning dropped substantially to somewhere around 10 percent. And he did. I thought we were home free. Check that pesky birth defect off the list of things to worry about.
About six weeks ago I got the text from his father. Let me elucidate a point. His father and I have the most ridiculously disfunctional coparenting relationship. We only communicate with text messages. I don’t know why he does it, but I do it because they’re admissable in court. Should we ever end up in a custody case again, they are evidence. Plus, it means I rarely have to put my PTSD (Post Traumatic Stress Disorder) through dealing with him in person.
So, back to business. It would be entirely accurate to say I lost my cool. Which, frankly, is justified in this instance. There were a lot of tears and some vomit involved. I immediately called the Bearded Gentleman. Even though we’re not married, he’s been around for almost half of Mini-me’s life span and he considers Mini-me his stepchild. Although he conceals his emotions far better than I do, the Bearded Gentleman was clearly distressed. I think it was harder on him simply because it was his first time through this circus.
Mini-me’s father charmingly indicated I could call him to talk about it (he never answers the phone) or I could talk to his wife in person that evening. Trying to choose the lesser of the evils, the Bearded Gentleman and I prepared to speak to the stepmother. Normally when I have to speak with the father face-to-face, we talk in the driveway. But the stepmother invited us inside and we entered the house where my worst trauma was perpetrated. This was the first massive mistake. It set off a stream of panic attacks, severe anxiety, and flashbacks that lasted for over a month. The Bearded Gentleman rarely makes demands of me or tries to lay down rules. He’s a pretty mellow kind of guy. But after seeing the results of that night, he made a very simple demand that I not ever, for any reason, enter that house again. I gladly agreed.
The information on Mini-me was pretty cut and dry. My little boy has been growing at an alarming rate, shooting up at least three inches in the past six months. It’s sort of shocking really. I’m a smidge and barely reach 5’1″. He’s 9-years old and already at 4’3″. Perhaps I have the Jolly Green Giant in my family tree somewhere. I wouldn’t know. I burned that tree to the ground awhile back. At any rate, the epic growth spurt also caused epic growth in the tumor. They were never able to remove it. The tumor had defied statistics and gone rouge, reattaching to his spinal cord in the process.
In early April, Mini-me had surgery. Again. It was surreal. This time his father and stepmother, step and half siblings, and grandparents sat in one area of the waiting room. The Bearded Gentleman and I sat a safe distance away. Not surprisingly, the reception volunteer was entirely confused that he has two mothers. Welcome to modern families lady. Geeze.
Mini-me was amazingly brave as they readied him. He held onto Dutch, a little stuffed puppy given to him by the Bearded Gentleman’s Godmother. He answered questions from the nurses and anesthesiologist with a strong, clear voice. We were prepared for an 8-hour surgery but it took just five. The neurosurgeon talked to the four parents afterward and assured us it had gone well.
And this is where my title today, A Special Kind of Hell, really kicks into high gear. We saw him first in the Pediatric Intensive Care Unit (PICU). Not entirely awake from the anesthesia, he was sleepy, confused, and in pain. We would find out soon that the surgeon had damaged a nerve ending causing severe nerve pain spanning one side from his bum to the back of his knee. It was so severe, we couldn’t touch the leg with a blanket without him crying out. The feeling that cry ellicited in my core is viseral. That scene in Terms of Endearment where Shirley MacLaine is screaming at the nurse to give her dying daughter pain medication is not melodrama. It took a good deal of thought and restraint in order to treat the entire staff, from the doctors on down, with a calm, clear respect. I don’t think it matters whether your child is crying from spinal surgery or an ear infection, that parental instinct is the same. I can’t say for sure but I expect it remains the same no matter how old your child is, even into adulthood.
Mini-me spent five days at Cedars-Sinai. His father spent the first two nights with him and I spent the rest. He had to be on his stomach the whole time, only sitting up to urinate into a plastic urinal. I can say it took me a bit to figure out how to hold the urinal while holding up a doped up kid with no aim. They did not teach me that in college. So, I learned that. I also learned that my child under-reports pain. He has no gauge whatsoever. I learned to measure his pain through his emotions. When the pain was manageable he was calm. As it grew, he became increasingly hysterical, balling his little fists against his face shedding tears of frustration as he struggled to tell me what was wrong. I learned to circumvent that meltdown by asking the nurse for pain medication early in the cycle.
I learned, or maybe was reminded of, a few things about myself during our ordeal. I’m strong. I often forget. But it is as true now as it was when I was a small child wading my way through life with an unstable parent. I am both smart and flexible. I am able to use these gifts to my, and Mini-me among others, advantage when I remember I have them. And, most of all, I am resilient. Even though the past few months have knocked me off my moorings, I am coming back. Slowly but surely, I am coming back to myself.
Most importantly, I appear to imparted my gift of resilience onto my son. After three weeks of tummy time, through which he complained very little, he returned to school last week. He’s still on restriction (no running, jumping, or generally being a physical little boy) but he’s happily back in his groove. He’ll never forget what he’s been through but he’s not letting it stop him from living an awesome third grader life.
And his Mom is so proud of him.
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.