If I were to write a fictional tale of a Mother Daughter relationship, let’s call it “The Fruit of my Labor.” Chapter one is, “Listen to your mother!”  The tale begins with a Mother making an impassioned plea, “Listen to me!” And the obedient child replies, “Of COURSE I will listen to you, oh wise, omnipotent mother!”  Isn’t fiction fun?

However, the non-fiction reality of life is that every day, each of us adds a page to a chapter in the book of the story of our lives. Watching my children write their stories has been a uniquely terrifying experience. My youngest daughter and I wrote chapters 1-9 of her life together, Epilogue, “My Mother; My Goddess, My Life.”  She clung to my every word.  But, I know as she takes over the journalistic duties of writing her own story, my reign is coming to an end.

While her brother and sister are simultaneously collaborating on chapter 13, “I hate you I love you, I hate you, my baby is mid-way thru scribing chapter 10, “Screw every word that trips off my Mother’s tongue.” She’ll continue to write these chapters day by day, page by page and a theme will emerge.  Chapter 11, “Yeah, DUH.”  Chapter 12, “YOU DON’T LOVE ME!”  Chapter 13, the aforementioned “I hate you, I love you, I hate you.” Chapter 14, “Happy now?” Chapter 15, “Screw you!” Chapter 16, “My Mother, my oppressor.” Chapter 17, “What do you mean my boyfriend can’t sleep over? And chapter 18, “MMMMHHMMM, Whatever.”

In anticipation of the puberty chronicles and to gain some much needed perspective, I took on the emotionally gargantuan goal of revisiting the early chapters of my own story. It required deep inner reflection and soul crushing therapy.

I had to do it. I had to use my experiences with my own mother (soul crushing therapy) to help me understand my daughter’s emerging story. So I turned back the pages:

Chapter 20, “This is a joke, right?” Chapter 23, “Dude, what do you mean, IT BROKE?” Chapter 25, “Always a bridesmaid..”, “But it wasn’t until chapter 27, “I’m gay, please don’t disown me,” that “it” happened. First off my mother didn’t disown me…. The “it” was I started listening to my Mother.

More than just listening I began asking questions. I wondered about her life story. How did her chapters unfold?  What were her hopes and dreams? What was happening in her life that led to the arrival of me in chapter 21?  I wanted to know everything. And she shared her story with me. She read from the chapters of her book and I listened to my mother with the same adoration and wonder of my 5 year old self.

That’s when my own story changed dramatically. My chapters were suddenly filled with great irony. Chapter 30, “Oh, my God my mother was RIGHT!”  Chapter 35 “Shoot, why didn’t I listen to my mother?” Chapter 37, “Did I do this to my Mother when I was a teenager?”  Chapter 40, “Dear Mom, I’m so sorry.”   Chapter 50, “Dear Mom, Thank you.”

Taking the time to re-read those chapters of my life has helped me be more patient and understanding of my child as she struggles to write her own magnum opus. Now, I remind myself its ok that she won’t listen to me. Because I know one day she will.

When she least expects it something will happen in her life, mid-chapter; It could be anything. She’ll get married, have a baby or maybe have her heart broken. Who knows? Whatever it is; a spark will ignite and she will remember every single word I have ever said. That vast cavern in her brain will open wide and my every utterance will spill out onto the pages of her life story.  And it will shock the hell out of her.

And if history repeats, she’ll put down her pen, have a good long cry, and then and only then will she truly have “Listened to her Mother”.  We’ll title that chapter, “All the wasted years.”  I can’t wait.

Brown Hair, Brown Hair have Mercy on Me.

“Brown Hair, Brown Hair, Have Mercy on Me. “By Doreen Chila-Jones

When my daughter was 18 months I noticed her soft, downy, brown- girl hair had fallen out and in its place had grown this thick thatch of curly brown goodness that I had no idea what to do with. Greatly intimidated I sat my daughter down, stared at that gorgeous mane and thought:

“Brown hair, brown hair what do you see?” And Brown Hair replied:

I see a frightened white woman staring at me.”

I was a little shocked, but answered on cue; “Brown hair, brown hair, what do I do?”

She was direct, but warm, clearly nobody’s fool and said, “Stay calm, say a prayer and log onto You- Tube.”

You-Tube? I thought. I’ll bite; the advice is free, so I asked her,

“Brown hair, brown hair, what will I see? “

Without skipping a beat, She said, ”Child, please you’ll see endless tutorials about how to style me.”

Excited, I ran to my computer feeling hopeful, nay giddy! I logged onto You-Tube and cried, “ baby I’m ready!”

She said: “Ready, for what? And don’t call me baby. You have nothing you need. Girl, you so crazy.”

I shouted, “WAIT! You Tube, please, where do I go? Don’t leave me hanging I’ve got to know!”

“Prospect and Springfield, Minns beauty supply, how do you not know?”

“Whoa! Minns? Are you crazy? I can’t shop in that store!”

And with no hesitation, into me she tore:

“Girl, stop it, get in there and leave your racist crap at the door. Nobody cares if you’re black or you’re white; unless your child’s hair is a mess so please… get this right.”

I was humbled, embarrassed to say the least. “I’m, so sorry,” I cried, ”won’t you please forgive me?”

She nodded her head, said, “hold onto your wallet; this list is long and not for the faint hearted. “

Then she started…

“A rat tail comb, flat iron, shampoo and some grease, shower caps, silk night hats, extensions; their cheap. Good conditioner, wide tooth-combs, hair bands, and big beads. Barrettes, bobby pins, hair clips, and girl PLEASE… have a friend sign you up for a hair care Go-Fund Me.”

It took me three days… I returned poverty stricken; I had product for days, but no focus, no wisdom.

“Ladies,” I begged, “I’m a ship lost at sea, I’m starting to panic you’ve got to HELP ME!!!”

And like a church sermon, solemn and true, the ladies, they said, “Sit. It’s time to school you.”

“This isn’t about the products you use, or even technique; that will come to you, truth. And it’s not about black, white, yellow or red, what’s important is that you understand and respect that her self-esteem is on top of her head; she needs to learn now she has nothing to dread. Foster in her a love for her locks, it must happen soon before life’s hard, harsh knocks. Teach her well to hold her head high. That nappy hair is a blessing and a source of great pride; remember, it holds the DNA of all time. And you are the keeper of that history, Mom…so be wise.”

I quietly nodded, respected the lesson, rolled up my sleeves and went on without question. My mission was clear; they’d made quite an impression.

I spent months with the ladies. I practiced and listened. Learned when to wash and how to condition.

The lesson to part with which comb was important. You comb the ends first because tangles are abhorrent.  And tender headed children make a deafening torrent.

But, I quick got the knack! You start at the back; you can twist it or plait, lay it straight or braid back. I could extend it or mend it or leave it be…set it free to fly up to the sky; an Afro so high it can be seen from the heavens! Oh MY!!

Over the years we’ve outgrown ribbons, beads and bows and moved onto, wigs, weaves and whatever trends are a go. The passage of time is a heart breaker…you know?

I treasure the lessons I’ve learned from Brown Hair, although she is stubborn and some days unfair.

And may I dare say she’s oft times quite bitchy! But I respect the hell out of her and her awe-inspiring history.

And just few final words I have to imbue. If you plan to partake in this humbling milieu, remember all it takes is great love for your child, patience and hours on You-Tube. I wish you luck and Peace…. be with you.

Chuck E. Cheese.

Dear Chuck,

I’m writing today to tell you that your establishment is truly disgusting.  Your games suck, your prizes are tiny plastic pieces of shit, the food is beyond inedible and for the love of sweet baby Jesus could you at least ease my suffering and keep your ice dispensers full?

I know you are filthy, smelly, fat pig rich.  However, since you’ve already made more money than you could ever spend in 10 lifetimes let’s make it a less horrifying place for parents, shall we? I’d like to make a few suggestions.

Please immediately install a separate sound-proof room for grown-ups that contain the following:

  1. A full bar
  2. A coffee/library corner
  3. Soothing live music
  4. A spa which includes, massage, mani/Pedi, and sauna.

As for price; since I’m dropping $100 anyway, please make the children’s food and games free. I’m likely to spend $200 for the amenities listed above including the privilege of having my children fed, entertained, watered and watched by the giant rat relative you parade around every hour on the hour.  I can’t imagine it’s actually you, Chuck. Admit it; you are clearly living the high life at an all the cheese you can eat resort in Switzerland.

Whiskers twitching?  Of course they are. It’s a win-win.  You’ll get richer, parents will be happier and my kids won’t notice a good god-damn difference except that mommy might be a much calmer woman after leaving your pseudo kiddie-carnival, crack house and daddy might get laid as a result.

As always I wish you the best.  Please speak with my 9 year old daughter to work out the details of this clearly brilliant plan.  It was all her idea in the first place.


Fuck you, give me back my $100.

Life with Cooper: In the Beginning

Chapter Four

In the beginning the Lord said, “Let there be Cooper!”

I suppose now is as good a time as any to go back to the beginning of life with Cooper and reflect upon how we got here.

November 2004 was a particularly blustery winter. Shove that factoid away for later. We had a 12-month-old foster child (our soon to be adopted daughter, Olivia) and had been anxiously waiting several weeks for a call from DYFS hoping to be placed with a second adoptable child.   As the Christmas holiday approached we were becoming increasingly doubtful we would hear anything before the new year.

The next morning DYFS called to say there was a 5-week-old girl in need of a temporary home. Her Daddy was finishing up the required parenting classes he needed to be awarded custody of his child. Hooray for him! We were admittedly sad it wasn’t a permanent placement, but thrilled to help. I saddled up Olivia, borrowed a car seat and off we went to Newark Beth Israel Hospital to pick up our little ward.

After several hours of waiting and filling out the required county paperwork I was on my way home with two kids. 12 months and 5 weeks old. It was going to be a fun Christmas!

Approximately 30 minutes after arriving home the phone rang. It was DYFS. “We have your adoptable baby!”  WHAT JOY! A two-week-old baby boy would likely need a permanent home and he was being placed in our care that day; Two weeks before Christmas; With a 12 month old and a 5 week old. Oh, shit.

I made a call to borrow yet another car seat and once again I loaded up the kids (this time with Julia who had excitedly rushed home from work) and off we went to collect the two-week-old boy, whom we would eventually name, Cooper.

Honey, where’s my super suit?

We sat nervously in the neo-natal, border-baby unit waiting for the moment we would finally meet this dreamed about baby. Julia went to see him first. After several minutes “Mommy” came back and uttered with a wry smile, “We’ll love him anyway.” I didn’t know what she was talking about. And then it was my turn. I entered the nursery and as he was gently placed in my arms I looked at him and thought, “Oh my God… this is one ugly baby.” The boy was cross-eyed, yellow, and had a cry that sounded something like the wail of a young, dying sheep. And I was instantly in love.

We were informed he was scheduled that day for a circumcision. He could go home with us immediately after and were assured we would receive instructions about how to care for his wee…wee. Two hours later, armed with ointment, gauze, a state approved bag full of formula and diapers we were once again homeward bound with a 12- month old, a 5- week old and a freshly circumcised two week old. What could go wrong?

Later that evening, (after several changes of the bloody circumcision wound dressing) the DYFS case worker called to ask if, “anyone told us he had tested positive for Hepatitis C?” and that we should, “take proper precautions when caring for his penis.” You would think that alone would be the shocking, but what was most disturbing was the caseworkers assumption that we would want to return the child to foster care.   We were horrified. The caseworker was also shocked. According to her many people would have “given him back immediately.”

Oh, hell no. This was going to be our kid. God or the Universe or what ever you believe in had sent this boy to us and we were in it for the long haul. No matter Hepatitis C, cross-eyed, or bleating. He was our man! Well, he was a ward of the state, but we had no doubt he would be ours. Again we thought, “What could go wrong?”

Off to a great start!

Exactly 24 hours after all babies were home I got sick; not head cold sick, but 102-degree fever, bronchitis, can’t move sick. We called in the big guns. My parents drove up to New Jersey from South Carolina. They did the night shift while Julia worked and Julia took the day shift while I slept.   My Mother, a ward of the state herself in 1944 England, LOVED it. My golf-obsessed father was indifferent as long as he could watch TV. Poor Julia was just plain old tired. We all survived and soldiered forth. Christmas was just a week away!

With me back in good health, my parents retreated back to their happy place of retirement and our little foster girl went home to her Daddy.  We decided it was time for Julia’s family in St Louis to meet their future grandchildren, niece and nephew. Holiday surprise! Charged with great excitement to finally introduce the kids to the Jones’ we packed, boarded our trusty mini van and headed out on a 16-hour road trip!

Let it Snow!

Unfortunately, because we were so wrapped up in our own euphoric holiday joy, we failed to check the weather report and drove headlong into the worst snowstorm in Ohio’s history. 18 hours later the snow was blinding and a foot deep. We saw a motel in the distance, but there was no way to get the car to it.  We were exhausted.  No choice. We pulled off on the side of the highway, each grabbed a kid and started walking thru a foot of snow toward our destination. They had one room; one nasty, smoking allowed, dirty room. And we were SO relieved.  Of course the second our heads hit pillows both kids woke up. Yes, they had slept thru it all. After a crushing game of rock paper scissors, Julia won the first right of sleep while I watched the very awake and well rested Cooper and Olivia.

We each got about 3 hours rest. The storm had passed and we trudged back to the car on the side of the highway and after 18 more hours the four of us arrived in St Louis. MERRY CHRISTMAS!!!

Reflecting back on our first few weeks with our son I think it is now safe to say that we have weathered many storms. I could never have predicted that snowy ride to St Louis was a metaphor for my future. “Life with Cooper.”


TRUMP WARS: a play in one act

The Players

Donald Trump: as Darth Donald

Hillary Clinton as: She-Han SoloGal

Americas Young Woman: As themselves


Election Day in a Galaxy (not so) Far Far Away…

Darth Donald: “America, I will be your next president!”

AYW: “NO!!!”

She-Han: “Darth Donald, I feel the good in you! Join me. Come back to the Force of the Democrats from whence you came!”

Darth Donald: “Never! Though I feel the force is strong with AYW. “

She-Han: “In the name of AYW and people of all races, sexes, sexual orientations and ethnic origins, I shall defeat you!!”


(Darth Donald and his Minions, Goth-RuGiull, Palin-Palpapee-pee and Newt-Gingrich prepare to do battle in their XY Chromosome Fighters. Not surprisingly, Palin-Palapee-pee’s ship blows up on take off.

She-Han boards her trusty Millennial XX Fighter and a great battle ensues.

Darth Donald is fighting to advance his powers in the name of bigotry and hate. She-Han is determined to stop him and assume the throne in the name of AYW and equality for all.

She fights a fierce battle. Her wing women are historic and strong: Edith Wharton, Margaret Sanger, Amelia Earhart, Sandra Day O’Conner and Madeline Albright. They lead the charge.

For 100 years the battle ensues.

One by one the XX fighters clear the path to victory. The women advance the cause breaking down the patriarchy; victory after significant victory.

But alas… Our champion, She-Han suffers a fatal blow.

Darth Donald hyper drives to the other side of the Universes Glass Ceiling!

She- Han is blindsided!

He is wounded, but it’s not enough. She-Han has only one choice. Just before she crashes thru she must retreat and admit defeat.


With one final blow she proudly adds one more devastating crack to the ceiling and declares AYW everywhere…

She-Han: (To AYW) “OK KIDS! YOU’RE ALL CLEAR!” You’ve got 4 years! Prepare! Train hard! Take your best shot and blow that Glass Ceiling wide open!

The End…Or is it?




Life with Cooper. Ch-CH-CH- Changes.

Chapter 2

Life with Cooper. Ch-Ch-Ch- Changes

The summer of 2016 will go down as the most challenging of our life with Cooper.   We hear over and over how cognitive growth comes, but it comes slowly and will level off at some point. Well this summer it came, but it wasn’t slow. It was disturbingly fast. Hold on to that word disturbing.

Our family was “vacationing” in Chicago, taking advantage of my wife Julia’s corporate housing situation as the Production Stage Manger for the out of town run of “The Sponge Bob Musical” which is headed to Broadway this spring. It was a great opportunity to get away as a family. We were crammed together in a tiny utility apartment, but we made the best of it and were having a great time.

Keeping track of Cooper in a large city was a challenge as he proved just as savvy on the Chicago Transit Authority as he is on NJ Transit. I was constantly on his case about staying off transit, but no matter the correction or how it was delivered he responded with anger, foul language and defiance. The usual.

After a particularly difficult day spent chasing him around town I was exhausted and launched into a tired, frustrated rant around 11:00pm declaring, “I am sick of being treated like the shit on everyone’s shoe!” And snap! Just like that, with one honest, weary outburst I became the object of my son’s affection.

Let me elaborate. In that moment I went from being the most reviled, gross creature in his world to his most coveted possession and it manifested itself in the strangest way. My son became obsessed with my pajama pants. My soft, cuddly, Target pajama pants. Cooper was suddenly fascinated with women and the way he was going to express it was by stealing, hiding and wearing my pajamas. And that’s where the journey of summer 2016 begins.

After two days of Cooper harboring my pajamas we found him parading around in a divine, women’s pink pajama set. Not mine. It had soft flowing pants and a long caftan that matched. It took a hot second to figure out that he had stolen our debit card and bought the combo from Target. We took the clothes away and gave him the standard don’t steal speech. He had no idea he’d done anything wrong. Cognitively he didn’t understand. He wanted women’s PJ’s; I wouldn’t let him have mine. His solution was to get himself a set. We tried our best to help him understand the potential consequences of his actions.  Also, we couldn’t let him parade around in the flowing pink pajamas. Not that we care what the kid wants to wear. More power to him, but right now he’s not prepared to deal with the back lash he’d get for roaming around in women’s wear.

Things held steady for a day or two. When it was time to prepare for the journey home I pulled out our hero’s suitcase. I opened it and found myself staring at a huge pile of clothes that I didn’t recognize. It was all women’s wear, size small, clearly not a new store purchase. My wheels started turning. Were they Julia’s? No, not her size or style. Maybe one of the actresses in her show needed storage? It was possible, she was there for 6 weeks before the kids and I showed up. So I took a photo and texted it to her, “do you know to whom these belong?” She answered with a confused, “No.” I replied, “I think we have a problem.”

After a remarkably calm conversation Captain Autism revealed that he went into apartment #3507 because there was a sign on the door that said the door is open, come in.  So he went in and took the clothes. He entered a stranger’s apartment and took things. The implications were too huge. The WHAT IFs were endless and terrifying.

The walk to apartment #3507 was a long one for me. I had folded the clothes neatly, placed them in a bag. With a serious amount of trepidation I knocked on the door. I was greeted by a 30-something year old woman.“Are these yours?” “Yes,” she answered with justified concern and confusion.

“Hello’” I said with that bit of defeated sigh you usually hear in my voice. My name is Doreen.  I have a son with autism. And I have a story to tell you.

As fate would have it this lovely young woman was a medical student at Northwestern, specializing in children with special needs. Fate? Karma? Guardian angels? Luck? Call it what you want. After the shock wore off, wonderfully she understood. We all ran into her the next day and she tried to offer Cooper a kind word. At the sight of her he fled. She turned to me and said, “You are the strongest woman I have ever met.” And I stood there and cried and accepted a hug from this stranger who entered our world on the bazaar impulsive whim of Cooper.

During our last two days in Chicago there were no more break-ins; however, Cooper seemed to be using his new-found powers of “cognitive growth” for evil. He regularly took our credit cards and went off on shopping sprees. That or we were finding clothes with the security tags still on them. All pajamas.

The stealing in of itself wasn’t as upsetting as the hard, harsh reality that by this time next year Cooper was going to be a big black guy and won’t be met with the same big-hearted understanding when he gets caught. Changing ATM Pin codes was small potatoes.


I was hopeful that returning to the home routine would end my sons thieving ways. I wrote off the “apartment-enter” as a “one-time” thing. That fleeting wish died within two days. First, we found women’s pajamas from Old Navy, security tags still on. Then he went mall- hopping with our credit cards. Merchandise was returned and our new normal of locking everything down began. We couldn’t chain him down physically, so hyper vigilance became our new way of life. Exhausting.


If you’ve been following along you know Cooper has a penchant for trains. His jaunts have become famous in our little hometown and have brought us a fair amount of worry, but mostly they’ve provided great fodder for Facebook, an eye-roll, and a weary sigh. Definitely the need for a stiff drink.

Suddenly, what were once random joy rides to Hoboken became epic journeys to places far and wide. Waldwick, NJ. Spring Valley, NY. Trenton, Weehawken…. Then it became bus journeys to the Livingston Mall or Midtown Manhattan. Cooper would visit the Nintendo shop, then hop a subway turnstile and grab a 1 train downtown to Queens.

Tracking devices relieved the terror of not knowing where he was, but how to get him home? These jaunts usually ended with picking up my son at police stations: Jamaica Queens, Montclair, and Secaucus to name a few.

Cooper has always been very polite and shown the proper respect to police. One particular night he went roaming, but was hungry and tired and upset because NJ Transit Police caught him. He hadn’t taken his meds that morning. By 8pm, he had one of his scary rages and called a police officer a fat, fucking faggot. (“Faggot” was a word he apparently learned from a friend with two dads. Go figure.) When I picked him up (Secaucus) and learned of his disrespect, I lost my ever-loving mind. All my fear and anxiety exploded. And the police stepped back and let me have at him. “BOY, DO YOU HAVE ANY IDEA THAT IF THIS WAS NEXT YEAR YOU WOULD BE IN HANDCUFFS?  IF YOU’RE LUCKY YOU’LL END UP IN JAIL AND NOT DEAD!!”

I knew that Cooper didn’t understand a word of what I was saying, but out the words came. “THESE OFFICERS RISK THEIR LIVES EVERY DAY TO KEEP YOU SAFE!  HOW DARE YOU BE DISRESPECTFUL?!  STAND UP AND APOLOGIZE!! NOW!!!!” He did. Apologized. I thanked the officers and we left. And I knew nothing would change. Cooper had his cognitive growth spurt and the prize has been hormone-driven actions to sate a natural curiosity he can’t fully understand. Awesome.

The fun continues!

A few days later my friend told me she found my son in her house. “Oh, shit.” Another friend told me she found him in her bedroom. “Fuck.” Then our former next door neighbor called.  Apparently, Cooper tried to walk in the back door of the house where we used to live, only to be met by the new owner. “Hi, I’m Doreen. Welcome to the neighborhood.” That was a fun first meeting. Again, I was met with kindness and understanding. I handled it with my usual flair for humor and humble, abject embarrassment.

Next Cooper disarmed the security system of yet another a friend’s house. How? We went to walk their dog. He noted the code and where they hid their keys and decided to go back in search of new pajamas. My friend walked in on him during his quest, which scared the crap out of her. He managed to get away with yoga pants.

Our next-door neighbor called the police one day after work when she thought her house had been broken into. “Strange,” she said. “Nothing was broken or disturbed, but my pajamas were missing.” I found her belongings under his dresser.

None of this was happening because my man cub had a sudden love of women’s pajamas. The culprit: puberty. Suddenly my sons penis was “really big” and ladies’ things “smelled good”, and were “soft” and made him, “feel funny.”   Puberty was going to get my high functioning felon killed.

Coopers most recent jaunt brought him to Waldwick NJ-40 miles from our house. He caught the attention of an ice-cream shop owner who happens to be a Special Olympics coach. She engaged him in conversation, got our number, and kept him fed and occupied until we got there. Another guardian angel? More dumb luck? I didn’t question. Cooper came home safely and I can add that woman to a long list of living angels who have been mercifully kind.

All of this happened in the span of one month. During that time Cooper’s therapists, CMO and psychiatrist worked feverishly with us to help keep him safe. We have explained (over and over) that his new feelings were good and normal, but stealing and going into people’s homes is bad. He just doesn’t understand. It’s too far beyond his scope.

After a particularly bad rage episode I had police take him to the only hospital nearby with a child psychiatric ward- the one his Bi-polar sister spent time in last year “(more about that in chapter three).” They did a full evaluation and told me they “weren’t equipped to help him.” There are no hospital wards for kids with ASD that are “high functioning.” There’s that phrase again. High functioning. Meh.

The challenge!

We had to lock this kid down before he got hurt, so I reached out to a program called “Challenge.” in which Cooper was enrolled for a week last year. The fear at the time was that he would pick up a lot of undesirable behavior from the other kids who were less functional than Cooper. Instead we opted for in home therapies with Partnership for Children. And let me say it’s been great. They have helped lay a foundation for the future, but the game has changed suddenly and dramatically. I am trying to keep him alive in the now.

So here we are. Cooper will begin his new school soon. TCI (The Children’s Institute) is designed to help kids with special needs and from there each day he will go to Challenge, a partial hospitalization program with intensive cognitive and behavioral therapies. We have to to keep him continually monitored over the next two weeks until it all begins on 9/8.

Two weeks to watch and worry, pray, breathe and be grateful for all the support, understanding and seriously inexplicable luck that has kept our genuinely good kid safe. Meanwhile, we soldier forth waiting for the next great cognitive leap forward that may or may not come. But, thank god he’s high functioning. Smeh.

Life With Cooper

Life with Cooper

“High-Functioning is an oxymoron”

 By Doreen C. Jones

Somebody, please tell me again how “fortunate” I am that my Autistic son is “High Functioning.” I understand the sentiment. He requires some, but very little attention from us regarding personal hygiene. Against all odds is progressing with his academics. Slow and steady as they say. Special skills? The kid can navigate the NJ Transit commuter train system like a human GPS and he can work his way around a computer web site like a ninja.

So, why the bitter discontent? Have you ever released into the world a child that, while “high functioning,” isn’t fully functioning? This is a child who appears to have the skills of a “normal” 11 year old, but in truth has the emotional intelligence of a 5 year old and zero ability to regulate emotions if “triggered” in a certain way. Still confused?

His disabilities are such that you can’t see them.  Cooper, in the heat of the moment, doesn’t understand consequences therefore won’t honor the boundaries we’ve set for him because cognitively he lacks the ability to control his impulses. He sees only what he wants with his narrow scope of understanding. For example: he can navigate the NJ Transit train system like a boss, but he boards a train impulsively. Yes, he can skillfully surf the web, but does it while simultaneously entering our credit card information to purchase something he “needs.”

We discovered his many talents the hard way by receiving weekly (sometimes daily) calls from NJ Transit Police informing us of his whereabouts in NJ, NY or PA. We’ve entertained several surprise visits, sometimes daily, from the UPS deliveryman regardless of spending countless hours chatting (pleading) with Amazon and e-bay’s cancellation departments. The seemingly endless quest for a tracking device that he can’t remove or turn off has been exhausting.

So what happens post puberty when he is no longer viewed as a child with “behavior problems,” but as a grown black man reflecting in the eyes of society as, “Angry?” No one will see an Autistic man with poor executive functions, Oppositional Defiance Disorder, and any number of stew-pot, special needs issues.  We fear for his safety in a world that is fraught with unforgiving, unsympathetic and downright violent people.

We are in a must win race toward the rapidly approaching  post-pubescent finish line.

This book is a collection stories cataloguing some of Coopers many adventures. Reflecting upon them has provided us blessed cathartic relief. They assist in our ongoing recovery from the moments of abject terror our sons “episodes” instill in our hearts and souls. Read on and see why I say, “High-Functioning Autism” is an oxymoron.

Back to Basics: A Foul Mouthed Rant.

I love to curse.  A well placed F-bomb at exactly the right moment is the best release of pent up frustration I have ever experienced.  Oh, sure, I color with crayons in my grown up coloring book, love my therapist, meditate, exercise, etc. and while I find it all valuable, a well placed, “fuck it all” is the penultimate stress reliever.

Don’t misunderstand.  I’m not advocating cursing at people or being rude. No-no! This is what I do in the privacy of my own home, car or with close friends to avoid exactly that. I especially frown upon the use of foul language in front of kids. Sometimes shit happens, but I avoid it at all cost. (See what I did there?)

If you are sensitive to the potty talk you should move on now, because I’m about to start a frustrated tirade about getting back to basics. i.e. Common courtesy, common sense, everyday things that have somehow fallen off our radar as a society.

Dear, Whoever You Are:

  1. Public Restroom user, please flush the fucking toilet.
  2. If you have something nice to say, say it.  If you don’t, then shut the fuck up.
  3. Stay to the right.  Y’all are just messing up societies flow.  I’m fucking serious.
  4.  For fuck sake, cross at the goddamn crosswalk.
  5. Teach your kids some fucking manners.
  6. Hold the door open for the person behind you, for the love of fuck.
  7. Appropriately stow away your frigging grocery cart.  How fucking lazy are you?
  8. For christ sake, say “hello,” Good Morning” or “How are you?” to your trash collector. That son of a bitch works his ass off all day collecting your funky shit.  Show the man (assumed) some fucking respect.
  9. Your kids teacher isn’t a frigging babysitter.  Don’t be a douche canoe and pick-up your kid from school on time.
  10. Are your parents still alive?  Don’t be an ungrateful little asshole, call them.
  11. You’re going out for dinner? You know you have to leave a tip. Budget that shit in and tip your server a full 20%. Don’t be a dick.
  12. Would it kill you to smile?  Don’t be a insufferable twat waffle.
  13. Clean up after your fucking dog if it takes a shit on my lawn.
  14. A rant for my children.  Brush your fucking teeth.  Your breath smells like a donkeys asshole.
  15. How Fucking hard is it to________________?!!! (Fill in the blank with any chore your child is supposed to do.)

Ahhhhh! I’m feeling better now.  It’s cathartic, really. Go ahead, unleash all that pent up frustration before the kids get home! Take a drive,  have a good laugh, have a good cry, throw your hands up in the air and just say, “FUCK IT!”

Mama Out

I know you…

I know you.  You say, “hello” to me and I say, “hello” back. I don’t recognize you at first, but I think, “I know you.”  And then you leave.  I walk for a bit and turn back.  You are wearing a fur lined trench coat and shorts.  Unshaven.  Not quite present behind your eyes. You are a complete stranger, but “Yes, I know you.”

I stop into a local shop and when I come out, you are there.  Not smiling.  Agitated.  Speaking aloud words that are all too familiar.  Everyone stares, giggles.  Nothing funny.  I know you.  You need help. I make the call.  “What’s your emergency?”  I say, “I know him.”  “Please come.”  You walk quickly, anxiously toward the trains.  You sit. Unsteady.  I call again.  “I know him.”  “He is here.”  “He needs help.”  You see me.  You know I made the call.  I hear those familiar words again. “Fucking, faggot, nigger, police, I’m not crazy, mother fucker.”  I’m a trigger, I retreat.  They come.  You go with them.  I know you.

Now what?  I know.  You’ll go to the Ward.  They will find your family assuming you have any.  Or you’ll stay.  In the Ward.  Until the state won’t pay. Or until you are “well enough” to send away. Then you’ll ride the trains again; Saying “hello” to anyone who dares to make eye contact.  You will make them nervous and you’ll sense their discomfort, their uncertainty, their fear.  It will hurt you inside and your “soul-wound” will rise to the surface and unfold as hurt, confused, angry, vile words.  And the manic cycle will continue to spin, unstoppable, seemingly uncontrollable, maddeningly and indefinitely.  I. Know. You.

You are beautiful.  You are a person.   You are humanities child.

I know you.   

Are you being your Best Self?

Have you ever had a moment when  you realized you were being the best version of yourself?  Yes? No?    I’m not talking about the elation that comes from scoring the winning goal, not that kind of moment. What I’m referring to is a feeling of complete and utter satisfaction; of being calm,confident, unapologetic.  Just being.

I was my best self today. And bonus I was being my best self while I was advocating for my child.   I can’t recall ever having this feeling so allow me to share it with you; it’s magnificent, transformative, soul fulfilling and may very well have changed my life forever.

There is no turning back.  I have now experienced what my best self actually is and I can’t imagine I’d ever look back at any other version of me, but to remind myself how I arrived.  I’m not going to dwell on how long it took me, or what ill-chosen paths I’ve ventured down to get here.  Call it what you will, but I’ve docked, landed, parked, touched down.

And it was so bloody simple; It’s embarrassing, really.  And to think it was in me all along.  All it needed to emerge was something that mattered deeply to me .  Today, specifically, it was my son, Cooper.

The ability to know our best selves is in all of us. I’ve struggled for years to find that “thing.”  That peace and self confidence comes with not just knowing, but accepting who your best self is and whole heartedly embracing that person. Here is some unsolicited advice.  If you don’t like unsolicited advice exit BLOG now.

  1. Find something you care about more than yourself.
  2. Change what you can change and accept the rest.  Seriously.
  3. Be kind, always.
  4. Reflect for a second on the past,(hold onto the lessons) glance briefly into the future,(be prepared) but live fully in the present.
  5. Get out of debt.
  6. Respect nature.
  7. Put. Down. Your. Cell Phone.
  8. Read books every single day.
  9. Change is good.

I’m going to meet a friend for coffee now.  Because it will make me happy. Go do something that makes you happy.  Go on.  Shoo.  Do it.  I highly recommend you begin with the list above.  Start with #1 then recite #9.

Live it, love it, own it.

Mama, out.