The Most Vulnerable Child

Alex2

My son is 16 today. We’re going to make vanilla cupcakes and sugar cookies and go shopping for Nerf guns and Disney Cars toys.

 

There’s a man in town who breaks my heart every time I see him. He walks everywhere. You see him calamity-ing down the sidewalk, his backpack sliding down his arm as he juggles all the items he’s carrying. His hair is feather fine and greasy. His face is always dirty and his clothes are beyond saving. People avoid eye contact and give him a wide berth because he’s loud and he smells terrible. I can’t help but follow him and talk to him when I cross paths with him at the grocery store because I see my own son every time I look at him.

 

When Alex was younger, let’s say 6 or 7, I thought I had to use every day in April to make every person I knew aware that it was Autism Awareness month. I shared a different statistic or a link to an article or the ASA so they might make a donation. I wrote clever and gently emotional blog posts about the misadventures of parenting an autistic child. My tone was always upbeat and maybe cheekily stoic. If that’s possible. I’ve stopped as Alex has gotten older.

 

If you have a 6 or a 7 year old with Autism, the world has your back and you’re brave. When your child is 16 people get annoyed because he wanders in their path when they’re just trying to grab a few groceries and get out of the store before they see someone they know. People give him looks because he’s carrying a Build-A-Bear or a pillow pet and he does weird things with his hands. If you’re an adult with autism, maybe in your mid thirties, people give you a wide berth because you’re loud, dirty and smell like you walk the length and width of town twice a day.

 

When I talk to people about my writing, I’m often asked how I find the time to write a book almost every month. Don’t get it twisted. It doesn’t happen that often and the other question I hear a lot is “Why?”. But people are mostly (mildly) impressed because I have time for 50,000 or so words a month. It’s not that hard to believe if you take sleep out of the equation. When you have a child with severe autism, sleep stops being your friend and the nights are awful. Writing books in my head about wars and the politics of Pre WWI Europe and Russia was how I kept my brain from spiraling during the quiet hours of the night. I just repurposed that time into physical writing and that’s how we got here.

 

If you have a child with autism you go to assheaded lengths to avoid the quiet moments in your head and you save yourself by laughing as much and as often as you can. If you’re smart. When it’s quiet and there’s nothing to laugh at you ask yourself the hard questions and you worry about things that can only hurt your heart. I worry about what’s going to happen to Alex when I’m not here anymore and how much of a burden he’s going to be on his sisters’ futures. I worry about him being the man no one wants to look at or stand next to in line at the grocery store. I know the life expectancy for a woman who can’t fall asleep without a sleeping pill, a tranquilizer and smoking a few bowls isn’t that generous. I’m going out like Michael Jackson or it’s going to be cancer.

giphy-6

 

If I see 60 I’m going to be quite nonplussed. I write like my ass is on fire because my books will exist as long as there’s an internet and my girls and their children might be able to find more clever ways to market them than I can. I write because it might save Alex later. The services for people with autism wanes as they become adults, as does the compassion of those around them.

 

Autism Awareness month isn’t the megaphone for advocating and support that it used to be, for me. Now, it’s a month of reflecting on how much we’ve lost or what we’re never going to get. It’s also prom season and I see all the things Alex isn’t going to do with his peers. He isn’t even in high school. I’ve homeschooled him for the last five years because there aren’t enough resources in the school system and we couldn’t get to the root of what was scaring him bad enough to wet his pants every time I dropped him off. But he’s never going to ask a girl (or boy) to prom, drive a car or graduate from college. Autism Awareness month has become a month of disappointment as I’ve grown to realize that all the awareness, sympathy and empathy is reserved for toddlers and younger children. The awareness and support slows to a trickle and then becomes a negligent drip as autistic children become teenagers and adults. People stop making eye contact and the gentle, patient smiles and nods dry up by the time there’s acne and a few intrepid chin hairs.

 

It’s getting harder to write about Alex because I feel myself becoming more bitter as he gets older. I used to push for some intellectual or emotional growth every day. I wanted him to be better at telling time or tying his shoes because in my head, those were one less thing my girls would have to struggle with, when I’m not there. But the list of things I have to teach him keeps getting bigger and the hours get shorter. How do I teach someone with the intellectual maturity of a 4 year old to shave? How do I make the world easier for a man who will never be older than 6?

 

My little boy is 16 today. Instead of looking forward and wondering where he’ll go to college or when he’ll start his own family, I worry about how much less there is for him in the world as he gets older. I worry about how much taller he is than me and what we’ll do when he realizes he’s already stronger. I pray he’ll get to live with me until I die and he doesn’t have to go to a home or spend his days medicated into passivity.

 

I stopped writing about parenting an autistic child because parents like me don’t need another brave face or to hear an exhausted mom say “Fuck Autism.” in every way she can articulate. ┬áMostly, I realized I don’t like a lot of the people who blog about parenting. Especially those with disabled children. I can always see their forced smiles and I catch the panic in their eyes, I can hear their internal screaming as they laugh about scrubbing poop off walls and tantrums in Walmart. Stop trying to make it look fun and easy. Stop telling the rest of us that we have to act like this is just fine. Quit lying.

 

As the mother of a 16 year old with autism, I just ask that you be kind. When you see a that man in the store, don’t look away and let him struggle on his own. Know that he’s probably lost his mother and she tried her best to make him as strong as she could but there just wasn’t enough time. Remember that the world got harder and less patient as he got older. People cared less because he wasn’t small and cute and the people he spent his whole life depending on have died or have lives of their own. Autism doesn’t go away as people get older, we just become less aware of them.

 

alex1

Advertisements
The Most Vulnerable Child

After Death And Addiction

13872511_10155094101961038_765810689_n

In the summer of 1997 my family and I drove from Fort Drum, New York to Fort Sill, Oklahoma. It was a magical road trip. I just received my driver’s license and I was following my parents’ Explorer in my hand-me-down LeBaron. It was just me and my brother and we listened to Notorious B.I.G. and Puff Daddy the whole damn way. I was 18 and he was 14 and we knew we were so fucking fresh.

We were Army brats and our lives started over every two or three years. But no matter where we went, we had each other’s backs and for several weeks, we were our only friends. There were hours spent on ski lifts talking shit about who ran a trail the fastest or got the most air on a jump. Or, we swore we wouldn’t tell mom and dad about ditching trails and negotiating over fallen trees and boulders as we made our own way down the mountain. When Nintendo’s NES came out, we barely slept for weeks playing Contra, Super Mario Brothers and Duck Hunt.

Then, life happened. I went to college and into the Army. Kevin started high school and learned how to use drugs. At first it, wasn’t that serious, it was just marijuana. I smoked pot now and then and laughed it off. The two of us went to the movies stoned and thought Jar Jar Binks made sense.

Eventually, I moved on and Kevin got into harder drugs, stealing to pay for harder drugs and dropped out of high school. The sweet, funny partner in some of my favorite crimes and adventures became less and less of a person I could recognize or stand to be around. He went to juvenile detention/rehab facilities until he advanced to jail. The first few times my parents bailed him out and paid legal fees but eventually let him ride out his time. He became known to the cops as a petty thief, small time drug dealer and addict.

Every year he became less coherent. His speech and intellect deteriorated until he was a rambling, ignorant bore. Years of incarceration made him racist and paranoid. I avoided talking to him because we’d fight over his use of racial slurs and his disrespectful behavior toward our parents. I was very protective when it came to his interaction with my kids. If I suspected he was high, they were off limits to him and I wouldn’t tolerate hate speech in their presence. When he wasn’t around I went through his belongings to make sure he adhered to my parents’ No Drugs In The House rule. I resented him for stealing my mother’s jewelry or the antique guns that belonged to my father’s grandfather. He stole the medals my father received over his 37 years in the Army, he probably made $20 off the lot.

My bother’s first overdose was in the fall of 2013 but he’d been to the emergency room for numerous drug related injuries before. He burned the top of his tongue off and half of his arm was scarred from freon. In April I received a call from my mother telling me my dad found him at home, unresponsive from an overdose. A few hours later, he was conscious. The paramedics administered Narcan and he was able to go home the next morning.

The first conversation I had with my brother when I came to visit this summer was more of a lecture. I raged at him for letting my dad find him nearly dead and begged him not to die in my parents’ home. I told him it was time for him to act like 33 year old man and get his shit together. My parents couldn’t travel or spend Christmases with us in Arizona because they were afraid he’d pawn everything they owned or blow up the house making meth. They came home to strangers going through their house and feared Kevin might get high and kill them in their sleep. I worried about my father dying and my brother stripping the house of anything he could sell and the confrontation we’d have over whatever inheritance he expected.

Sunday night, my mother, aunt and my girls watched Drag Race in the living room. We ate cheesecake and drank wine (the girls drank sodas) and screamed “Yassss, girl!” until 2 a.m.. My brother stumbled in and mumbled something ignorant as he at a bowl of cereal and I rolled my eyes and waved him off. He was so high he couldn’t put a decent sentence together. My bitch face was strong and in my head I called him pathetic, worthless and selfish. My mom yelled at him for being high and told him he had to find someplace else to stay when he got up the next morning. I told her to leave him alone so he’d shut himself in the den so we could salvage the rest of the evening. He was high and I thought he was baked out of his mind on pot.

We heard a lot of moaning and loud breathing and when we investigated we found him on the couch and thought he was passed out. He did that a lot. He’d disappear for a week then come home and sleep for days. So, we stood over him and snorted at how much noise he made as he snored and drooled. Once our Drag Race marathon was over we went to bed. I was still so irritated with my brother and tossed and turned for an hour because I forgot to take my sleeping pill. I went downstairs and took my pill, grabbed a bottle of water and just as I reached the stairs I paused. Kevin made another loud “snore” and for some reason it made me uneasy. I went into the den and stared for a moment before I placed my hand on his chest. I felt it move then shook my head and went back upstairs to bed.

The next morning, I did my usual Monday morning things. I paid bills online, checked social media and did a little window shopping on Amazon. The girls and I drank coffee and ate breakfast as we discussed our plans for the day with my parents. My mom, aunt, Stella and I decided to sneak away and order Zoe’s birthday cake for Saturday. My dad mowed the lawn and my grandmother was baking in the kitchen. I got ready to head out and was slipping on my shoes when my mother decided to wake my brother up to tell him to go out and find a job or someplace else to stay.

I heard her yell for my dad and we both ran into the den. Kevin wouldn’t wake up. My dad checked him and he was cold. He was pale and a dried cone foam protruded from his nose. My mom still thinks he had a bloody nose during the night and stuffed a tissue in his nose and went back to sleep. I can’t tell her what it was or that he was probably brain dead by the time we went to bed the night before.

Death doesn’t happen to the deceased. They’re not there when death happens. Death is my mother screaming and fighting us as we pushed her out of the room. Death is my dad, shaking and struggling to tell the 911 operator that his son is dead in the front room. Death is my aunt and grandmother wailing and me rushing my kids upstairs before they can figure out what has happened. Death is my mother begging me to make the paramedics work on my brother and asking why they won’t give him another shot of Narcan then begging me to stop them from leaving. Death is holding my dad’s hand and gasping for breath as the coroner wheeled my brother’s body through the front door.

We put my mom in bed when the medical examiner arrived. She was hysterical and wanted to hold Kevin. We didn’t tell her what was going on and she kept asking “Is Kevin home?” as I held her hand and told her they were just taking pictures. I slipped away and hung onto my dad as Kevin left the house for the last time then went back and told my mom he was gone.

Death is painful. My mother’s chest ached and my stomach felt cold and clenched for days. Sleeping is hard. Even with my sleeping pills, I couldn’t close my eyes and not see my brother on the couch. My dad swore he could hear my brother banging cabinets and pans they way he always did when he got high and cooked in the middle of the night. My mom just cried all the time. During the day we float from room to room, aching and exhausted, unfocused and tearful. My dad is Midwestern and stoic and tried to keep busy cleaning the odds and ends my magpie brother left strewn about the garage. But his grief became too heavy so he’s medicated and wanders around in a xanex and valium haze.

My grandmother is angry. We decided to have Kevin cremated and didn’t have a service. The days that followed his death felt like one long service and no one would attend something in a church but us. If any of my brother’s drug user/dealer friends did turn up, a fist fight might break out. My dad and I would be happy to break their faces and claw their eyes out. Instead, I’ll transfer Kevin’s ashes into two boxes this evening and a pastor will be present to say something comforting for my mother. My dad won’t be there. He can’t see Kevin’s ashes or hear final words.

I consider myself a mindful atheist. I have always admired and studied religion but it never fit me personally. But you borrow those harmless adages in hopes they’ll give comfort. Time becomes stagnant and pointless when you’re grieving. My mother and I laid in bed, holding hands and whispering to each other for hours. She’d say “I miss him” or “Do you think he was scared or it was painful?”. I’d tell her he was tortured and trapped by drugs and was finally at peace, in a better place and able to truly rest. I promised he felt like he was in a beautiful place as he drifted off to sleep and was relaxed and happy. It was gentle and he believed he would wake up the next morning.

My own feelings surprised me. When someone you love is an addict for 18 years you think you’re ready for their death. You let go of them and resent them for the damage they’ve done. Maybe being so intimately involved with Kevin’s death made it harder. I might have been stronger and less hurt if we had just received a phone call. I don’t know if I could have saved him when I checked on him that last time. I’m not sure if I would, as terrible as it sounds. I would have only delayed his death by a few more months and my parents would be alone with the pain and senselessness. Or, he might have died behind the wheel of a car or been killed during a drug deal.

Memories catch me off guard. I’ll be driving and remember Kevin practicing softball with the girls during one of his more lucid moments. He loved my kids and tried to be a good uncle when his mind was present. Or, I’ll remember fishing with him when we were kids or a drunken night a few summers ago when we pushed my mom in the pool. I’ll miss the boy I grew up with and the stupid fights we had. We’d duel with toilet bowl brushes and I buried his baseball trophy in the litter box because he broke my porcelain doll. I’ll wish I wish there when he lost his way. He had parents who loved him and would have helped him be anything but couldn’t stop him from becoming nothing.

The day he died I hugged my girls and all I could tell them was that everything would be alright. I sat them down and promised they could say anything to me, all their feelings were safe. But I had nothing else of value to tell them at the time. I swore I’d have better words later. I still don’t know how to explain death to them or how to process it.

Right now, death is a set of closed doors and a room we’re all afraid to look at. Someone will go in and remove a few things or clean a piece of furniture but can only bear to be there for a moment or two. Alex tries to watch the TV or use the playstation, he doesn’t understand what happened or why I keep running him out. He thinks Kevin is in jail again and we all wish he was.

Death is also fiction. There are times when I think I’ll see my brother and say “See? That’s what’s going to happen if you don’t stop this.” You wake up in the morning and for a few minutes it’s just a morning. There isn’t a person shaped hole in your life and you don’t have to confront the new grief each day brings. A part of your mind can’t tolerate the reality that someone you’ve known your entire life, that was a portion of who you are no longer exists. Somehow, it can be undone.

My aunt and grandparents return to Istanbul on Saturday and the kids and I will drive back to Arizona on Monday. I worry about how my parents will face an empty house and the lack of Kevin’s clothes and belongings. I’ve spent the last week sending things off for donation or selling anything of value on Craigslist so my parents wouldn’t have to deal with all of it. I don’t know how they’ll cope with a life without worry or disappointment. Or death. For them, death is the end of hope and a battle they’ve lost to save their son from himself and addiction.

This place is where I share my happiest news about my books and the occasional observations about parenting an autistic teenager. Today, I need this place to express all the things I can’t put into words yet. Perhaps my girls will read this later or someone will find it and feel a connection to our loss. Or, if there’s any logic to the universe, someone like my brother will see this and decide┬áto spare their family the unfathomable pain and confusion a death like this leaves in its wake. Right now, I’m doing what comes naturally, I’m using words to cleanse the fog and clutter in my mind and the anxious pressure in my chest.

After Death And Addiction