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The news is on.

I grew up watching the news. In my house The Today Show was on every morning, and local news stations were on every night. With the exception of the time my mom literally threw me into the bathroom because she realized Budd Dwyer was about to shoot himself on live television, my parents never censored the news. I remember watching the MOVE bombing, the famine in Ethiopia, the Challenger explosion and the Gulf War. If I had questions, I asked questions, and my parents answered with age-appropriate honesty.

I remember a news story about a child abuse case in New York, one of the first sensationalized news stories in my memory- I was nine years old at the time, the same age as my son. Six-year-old Lisa Steinberg died at the hands of her wealthy, drug-addicted parents. I remember being horrified to learn that teachers, neighbors and family friends all suspected that the child was being abused,  but nobody called police or child protection. Eventually, the child was found dead in a filthy, blood-stained New York apartment.

As the news of her death trickled through the neighborhood, mourners showed up, piling flowers, candles and stuffed animals at the front stoop of Lisa's home. I remember seeing the teddy bears and feeling something well up inside. And by "something" I mean an epic meltdown.

"Mom," I asked. "Why are they bringing her bears? She's not sick, right? She died, right?" I felt my voice rising, and I started pacing the living room. I remember standing on one side of the dining room table, my mom on the other side undoubtedly having a moment of regret on her news watching policies while I shrieked at her.

"WHY ARE THEY BRINGING HER BEARS NOW? WHY DIDN'T SOMEONE HELP HER?"  Oh my God, my poor mom. Her weird, sensitive daughter was hysterical, and asking questions that there are just no answers for.

I woke up this morning and put on Sunday Today, watching with my nine-year-old son as the story of two mass shootings, mere hours apart, unfolded. It was on because despite PJ's Autism diagnosis, and his delayed language skills, we watch the news in my house. When PJ has questions, we answer them with age-appropriate honesty. He may not understand the social nuance of what happened- gun control, mental health issues, racism and domestic terrorism. But sometimes during his school day, he practises what to do if someone has a gun. He's aware that bad things happen.

He watched quietly while he played with his trains and ate breakfast. Images of people running from the scene flashed across the TV.

"They are running. Is it...funny?" He often asks if something is funny, PJ-speak for trying to tease out the emotion of what he's seeing, which can be tremendously difficult for him.

"Well, this time it's sad, Bud. They were scared and trying to make sure their bodies were safe, " I tell him. Later on, he plopped down next to me on the couch.

"Twenty people died," he said. "But, that's okay! They will be better soon!" But they won't, and I tried as best as I could to explain to my nine-year-old that twenty people would not be better.

"When you die, Buddy, that's the end of your body. You can't get better." I was my mom over 30 years ago, trying to answer a question that has no answer.

I think about nine-year-old me and nine-year-old PJ and there are things that will always be the same. Terrible things happen, sometimes as often as the great things. I never thought to ask my mom if she resented having to explain the trials of the world to me, but as I drank my coffee this morning, I felt resentment. I resent that I have to continue to have these discussions about gun violence, even though I am unwilling to shield PJ from the news altogether. Clear laws about mandated reporters will help to make sure that teachers and others in positions of caregiving (police, social workers, nurses, etc) can not turn a blind eye to instances of abuse, ensuring that children like Lisa Steinberg are helped before there is a tragedy. The Challenger Disaster  has been studied, not only by scientists and engineers on the physical breakdown of the shuttle, but as an ethics case as well. My mom could tell nine-year-old me that while awful things happen, people learn from their mistakes. On a morning where I wake up to two mass shootings, with a string of similar morning news reports in the days and months before, I don't know if I can tell nine-year-old PJ the same.

Ice Cream Triggers

My 9 year old son, PJ, is kind of a no-frills dessert guy. He likes regular old chocolate M&M's. He prefers plain donuts to iced once. He'll pick a chocolate milkshake over a cone with sprinkles and if he does have ice cream, it's "naked." No candy, no fudge, no whipped cream. It must have skipped a generation because while his mama can sweet up a storm, PJ desserts like his Zayde (Yiddish for grandfather).

I lost my Dad on November 6th, 2017. Each day I get farther from it, but my grief keeps up with me. It's a shapeshifter. It started as an abusive partner, beating me every day until I was nothing but twisted up sadness and mangled emotions. Now, it's my stalker. It sneaks up on me and scares me with how swiftly it can stab me. It's not something that will get better if I wait it out. It's always chasing me down. Life goes on and there are happy moments and proud moments and great moments. Still, it's somehow the most cruel part of grief; the world does not stop for you.

A sweet friend of mine shared a story written by Nora Wong, a women who lost her son, suddenly. He posted it on the ten year anniversary of the day he lost his own beautiful daughter (losing a child, by the way, just might be the winner if grief was a contest). I read the piece, and felt profoundly that not only did this woman know grief, she understood mine. In the piece, she said that you can't transfer your love for someone you lose to someone else, that it was for them alone. The love doesn't go away and without its recipient, it takes up a strange space inside of you.

A few nights ago, PJ asked for dessert. He had a stellar day- great behavior and awesome school reports- and was just full of joy. I offered him a milkshake, his absolute favorite, but instead, he asked for "Vanilla ice cream with some chocolate in it? I will eat it with a spoon." I smiled at how "my dad" this request was and grabbed a bowl, the scoop, and a brand-new tub of Friendly's Fudge Ripple from the freezer.

I peeled off the lid, ran the scoop through the container and suddenly, I felt my heart stop. The smell was creamy and cool and the fine lines of fudge looked like tree rings swirled through the vanilla. It was after dinner in my parent's house, and my Dad was indulging in his weirdly no-frills luxury. I scooped some for PJ, and then grabbed a coffee mug and scooped some for myself. PJ dug right in, blissfully quiet as he ate his treat. I put a bite in my mouth and felt my throat close when I tried to swallow. It was too much. I could feel a kiss on the cheek from my Dad, his lips cold. It smelled like my Dad. It filled all of my senses and flooded the space where my love for him was.

A tiny sob slipped out and PJ's head was up like a shot. "Mommy, you are happy," he said, PJ-speak for please don't be sad. I wiped the look off of my face quickly but there were waves that felt akin to panic running through me. I walked out of the room to let PJ finish his ice cream and to try and clear the decks of my overwhelmed senses, where my dad was in every one but proximity.

For a second, I wasn't sure I would breathe again, but eventually, I felt it pass. I sat back down with my Boy and we ate our ice cream, chatting about trains and Go Noodle and whatever else was on his mind that day. But my stalker doesn't leave me alone. It's that empty space inside, ready to flood if Elton John comes on, or there is a blockbuster trade in the NHL, or I'm watching PJ do something mathematical. It's the split second between wanting to call my dad to talk about it and he's not there for you to call anymore.

I have been sitting on this post for months because I get to this point- where I should be wrapping it up- and I don't know what to say. I wasn't even sure if I was ready to share these feelings. I save most of my grief for when I am alone and inside of myself. I'm not sure if it's visible to the outside. But I come back to the Nora Wong article and realize that I am not the only one with empty space not for rent. I read her piece and knew that space and was relieved that someone could describe it so well.

If you are missing someone, if you are the compliant partner to your grief and feeling the ice of that empty space and you have somehow stumbled to this inarticulate place, I hope this helps.

I see you.

Thanks for not asking.

My sister Marla burst forth into the world when I was four years old. I can remember the day she was born in little vignettes. I can't remember my mom being pregnant at all, but I do remember my father picking me from the neighbors, where I hung out while my mom labored. I remember the hospital, and someone getting me a chair so I could peer into the bassinet, and leaning close to listen to her breathing, kind of squeaky and bird-like. It was go from there- with the exception of a few rough adolescent patches, and an argument that ended with her slamming my hand in a door and leaving permanent scars, we have been extremely close ever since.

Anyone that knows me, or even follows Marla's blog, knows that my sister has struggled with health issues since that first squeaky-bird-sounds day. Born with a congenital heart defect and grown into a woman with Lupus, she is a great person dealt a shit card. She kicks ass now, but as a kid, her health care (and health successes) didn't happen by itself. My parents were absolute superheroes, advocating and learning and participating and not sleeping and sitting at the bedside of a very sick child, wondering if this would be the hospital visit they came home without her. 

I only have one child, so I can pour all of my craziness attention into him. For parents that have two or more, you understand the struggle to triage your time and energy into making sure each of your children get an equal piece of your time and attention. I imagine that it is never something that is done to anyone's complete satisfaction, but that you try to do the best you can. For my parents, it wasn't that easy. Taking care of my sister was a job and my parents did it spectacularly well. But trying to triage their time wasn't a matter of deciding who went to what event if we both had something the same day. It looked more like giving oxygen to a baby that was rapidly turning blue while hoping the older one wasn't out in traffic because how on EARTH do you divide attention in a situation like that? 

I don't think that my sister and I bear any permanent damage from that situation. My parents, if I do say so myself, got lucky in their weird, sensitive older daughter, and I always understood that it wasn't personal. I knew that my mom and dad were desperate for some normal sibling rivalry instead of the ER episode they landed in. Still, I do think it shaped me in a lot of ways. I guess that's what childhood does. As an adult, I am a private person. I'm not a fan of asking for help and I don't like to discuss my feelings. I hate when people ask me how I am- I like to keep that to myself.  The people who truly know me know not to ask. But, I think that it was less the way I was nurtured and more my nature, whatever hard-wired weirdness I was born with.

Being a parent, even to only one child in my case, is what really shifted my perspective of my upbringing. We do everything we can for our kids and going all in on something means that something else, somewhere, is missing a piece. Being a parent helps me understand that the missing piece can own an all-consuming part of your brain, the part that wishes you could clone yourself and be in four places at once. Parenthood is triage. It's choices and sacrifice. In the end, my parents gave me gifts that far outweighed the missed attention that I know still gives my mom guilt to this day. The weird, prickly parts of me would have been there no matter what. But the great stuff, the stuff that makes me a decent friend and a good mom and a fucking kick-ass Parent Partner? I wouldn't have been that without my mom and dad.

Just don't ask me how I am. ;-) 

Stumbling Towards Adulting

This past May I turned 41.

I would like to say that entering my 40's introduced an epiphany of adulthood and responsibility, but...not so much. I am still messy (thought much improved), I still swear far too much, I still have lax grooming standards (in terms of wearing grown up clothes or owning more than one pair of black pants, not actual cleanliness. I shower, comb and deodorant on a daily basis). I forget that I won't weigh 100 lbs no matter how much I eat. In all, I've not succeeded at this adulting thing.

Still, there are a number of things that I have figured out with age, from music to parenting choices to adult beverages:


The Rolling Stones- While I still don't really want to go to a concert and watch Mick, Keith, et al flop around on stage, I have grown to appreciate the mastery in their music. The documentary "20 Feet From Stardom" played a huge part in this, but songs like "Gimme Shelter," "Paint It Black," "Sympathy For The Devil" all have a sound that I have grown in to. I'm sure that the fact that Debbie Gibson (bless her heart) is no longer on the main stage of my musical tastes has much to do with this. Side note: Merry Clayton on "Gimme Shelter." Her voice makes me feel like I couldn't possibly be good at anything, at all, ever.

Keeping Things Neat- So, I am still a slob. It's my nature, but now I work really hard to try and combat it. And when it rears its head, either because I let it get away from me or because my son is actively combating my attempts at neatness, I don't just meet it where it is and settle down in it. Messes affect my psyche now, and when the house is in chaos, I am as well. Now I try to do the work needed to combat it, and it often feels like Adulting Level 10. Plus, and I can't lie, the fact that PJ has therapy at home three days week means that people are here at least three days a week. I need to keep my shit together.

Margaritas- I am not a big drinker, not in the slightest. For one thing, I was (and still am) a goody-goody, and second, I just don't enjoy the taste of most adult beverages (ie, wine). I had to work my way up to it, but margaritas, man. They're my jam.

Dealing With My Hair- The older I got, the curlier my hair got. For a long time, I had no idea how to combat that, and my head was enveloped in a cloud of WTF pretty much all of the time. Now, thanks to spray gel, wide-toothed combs, Pinterest and plopping, I have the curly thing pretty much down.

Judging Other Parents- With the exception of letting your small child ride in a car without proper safety restraints (for which I will judge you all the live long day) I have learned that there is so much more to the things you see play out between a child and his parent/caretaker. I'm sure that a lot of that is becoming a parent myself and then, in addition, becoming the parent of a child with special needs. Oh, but I will judge you a bit for being judgey. {shrug}

Love Languages: When you are little, love plays out in hugs and kisses and presents and joy. When you get older, you start to realize that the language of love is not a tangible thing. My mom speaks her love language in wanting all of the people that she loves to love each other. My dad spoke his in sharing his knowledge, and telling us things to make us smarter and better people. My friend Randi speaks hers in the way she stays connected to her tribe and my friend Amanda in being one of the most clutch friends I have ever known. Being an adult means that you understand that love is not in the extras, but in what the people you surround yourself with have to offer right off the bat.

News Radio: While music is still the mainstay in my car, and though I still love nothing more than blasting music with the windows down, I have grown to love news radio. KYW 1060 (local Philadelphia radio) is turned in for more than just traffic reports, and I ask Alexa to tell me the news as often as I ask her to play the Mean Girls Broadway soundtrack. It's become important to absorb the happenings of the world in my down-time- as a mom, as a person in a service field, as a voter and as a human. Understanding the world make my vote more powerful and valuable, and it lets me know what things I have to try and make better or different (ahemahemBETSYDEVOS.

Regular Doctors Visits: I used to be that asshole that showed up at urgent care super sick because not only did I put off handling an illness, I didn't have a doctor to go to (see me for the story about how I got fucking Rheumatic Fever in college like someone from the middle ages)! Frankly, that shit is unacceptable. Go to your checkups. Get your mammograms, butt checks, bloodwork, etc, because the bad news is that the older we get, the more difficult it can potentially be to bounce back from an illness. Also, the stakes go up as we age. The older we get , the weirder the stuff that happens to our bodies. The moral of the story? Go. To. The. Doctor.

Grocery Shopping: Eh, just kidding. I hate it. But we need to eat so I go. Adulting is also doing crap you hate.

Compromise: I am kind of stubborn. My mom and dad like to pull out a picture of me as a little girl, sweetly resplendent in a 70's pinafore dress and sandy blonde hair, with my arms crossed tightly across my chest and a pissy-ass look on my face because I was steadfastly not giving in to something or another. If camera phones has been a thing then, it's likely my parents would have thousands of pictures in a similar strain. I have a hard time giving in, but as I age, I start to understand what things can be let go and what things are the hill(s) to die on. It doesn't get any easier- I'm a control freak and always will be- but it does get more clear.

Honorable Mentions: Annie Lenox, guacamole, proper arch support, the jokes on Golden Girls, investing in good bras, most parenting decisions, flossing, how important your parents are

When did you realize you were a grown-up? Was it in your 20's? The first time you voted? Was there a seismic, life-changing event that forced it? Discuss.


Onus

Second grade is in the books for my Boy, and now that it is August, third grade is just around the bend. This was a profoundly difficult year for all of us, as we struggled with growing pains and loss. Pete and I can try to use all of the tools we have as "typically-developed adults" to try and grapple with what this year has thrown at us and even with that advantage, we usually fail spectacularly.

PJ, however, does not have that advantage. While he has all of the feelings, fears, hopes and needs of a typically-developing 8 year old, Autism has left him without the tools to properly convey those things. There are a million amazing things about our Boy that float to the  top for the people who know and love him but often, his difficulties negate those things to people unable to see differently.

Let me say this: we are not trying to gild a lily here. The things that make life hard for PJ can, in turn, make things hard for the people around him. PJ can be aggressive, and it's not okay for the person on the receiving end of that. PJ has been aggressive towards peers before, and I wear every incident like a scar- who is ever okay with being the parent of "that" kid? He can use language that sounds scary when he doesn't have the words to describe what is bothering him. PJ doesn't have the social skills that make approaching a peer easy for him, despite that fact that connecting with peers and making friends is something he desperately wants. Instead, his behaviors may come across as off-putting or rude, and without someone to prompt PJ on how to approach someone, the connection is missed.

PJ had an amazing experience at day camp this summer. He tried out new things, met new people. He was welcomed by the camp staff and community- a strong special needs program meant that he wasn't just tolerated, but made a part of the group. At family night a few nights ago, we ran into staff who knew him, each with something positive to say. It was inclusion the way it should be, and because of that, PJ was able to feel like he was a part of something.

Still, there were difficult moments. Towards the end of camp, one of PJ's more annoying idiosyncrasies started getting on the nerves of another kid, who got in his face. This is something that happens to every kid, but PJ had no idea how to handle it and quickly dissolved into a meltdown that resulted in his having to deescalate indoors and miss free swim, his favorite part of camp.

This is not to say that it is okay if PJ hits another kid, or uses language that is frightening. There aren't words for how it feels when I get a call that PJ hit a peer. When we are in those situations, the best we can do is to redirect PJ's behavior and teach him an acceptable replacement behavior. We also have to understand why the behavior happened. Was he scared? Trying to engage the other child? Provoked? Understanding the antecedent is key as well, and means that we often have to be three steps behind and two steps ahead at the same time. We do this not just situationally, but also in at-home therapies and social skills training. It is more than just a disciplinary reaction- along with that (and yes, we do discipline our child) there has to be time taken to not only let PJ know not only that the behavior is unacceptable, but HOW to behave instead. By "how," I mean literally going over the situation with him, and telling him the words to use and ways to act in order to replace the impulse to behave negatively. It's work. There are hours upon hours spent at home, trying to teach PJ how to behave like a typical child. When your child comes home from school and hops on his bike or zips off with neighborhood friends, PJ is at the table in our dining room, trying to learn how to earn that right.

I'm certainly not ready to just scrap those therapies, but I have to wonder: Why is the onus of acceptable behavior taken on completely by a child with a disability? We work so hard to break PJ of those Autism idiosyncrasies and negative behaviors that put others off, but who is working to help our typical children gain tolerance, patience, acceptance? Why is the idea of having someone meet PJ in the middle so foreign? Frankly, that viewpoint underestimates kids who, more than anyone else, are able to see what is special and interesting about my son.

In most schools, inclusion is still a tricky thing. Some districts still completely eschew the practice, preferring to place our children in self-contained classrooms or schools completely dedicated to serving kids with special needs. Other schools offer some form of inclusion, but it is a club with an application process, and only when a child is working as close to "typical" as possible are they allowed in. I have heard other parents say that a child with a disability is a "distraction" or time suck that can funnel resources away from other children.  This is an attitude that suggests that our children are not equal, and that some children are more deserving of an education than others.

PJ is a child, no more or less worthy than another. Yet so much of the focus on him zeroes in on what his difficulties can take away from his peers, rather than what his many, many gifts can offer. And I get that not every kid is easy. It takes work and resources to make sure kids like PJ have their needs met while also having access to the same type of learning landscape that all children are entitled to. Studies continue to show that both typical and disabled children benefit from an inclusive learning environment but, in terms of implementation, public schools remain very far from that goal. It's broken system, one that relies on our differently-abled kids alone to close the gap.

Parenting PJ In Alphabetical Order

Always bathe before bed, because this child has a propensity for getting dirty like nothing you have ever known.

Believe in him, even when it is hard. He is capable of so much more than anyone might think.

Cleaning up the trains is a useless endeavor. Just hang a "Sodor" placard our the mailbox and call it a day.

Discovering the amazing things about your child has no end and will always surprise you.

Everybody knows your name at two places, Cheers and our house, because PJ remembers everyone's name. Truly. He did not get this skill from me- I am the WORST with names. I am embarrassed to admit how many time I have had to ask PJ to remind me of someone's name.

Failures will happen. It's okay. Learn, even if "learning" is the thing that leaves a scar on your heart.  Dust off. Move on.

Growing like a weed, this one, but I wonder: Do girls end up in awkward in-between sizes? Right now PJ is between an 8 and a 10 and it's driving me nuts.

Haircuts are torture for him, but he gets through it and gets better every time. I try to imagine how intense the feeling is for him and can't, and somehow that breaks my heart even more.

Intense: PJ is not a cry baby, but he feels emotions very intensely. He might not cry if he falls down and gets hurt, but if he is frightened, sad, or apprehensive, he can be intense in his display. That is something he is grapples with often, as Autism has left him with little by way of organic tools to deal with these emotions. Instead, he may start to make threats, or throw things, or become aggressive. He has grown and improved and learned so much thanks to years of therapy and work (isn't that a weird thing to say about an 8 and-a-half year old?) but they can still sometimes float to the surface. PJ is old enough now to understand the repercussions of his negative behaviors, and I, somehow, seeing the shame on his face is a pain that is sharp and stinging and permanent in my mama heart.

Joy is hiding everywhere. It might be in bubble letters, it might be in farts. But my kid can extract happiness from the mundane like, whoa.

Kisses are still on demand, and I dread the day he decides he is too old or too cool.

Lettering and fonts hold huge interest for him. I wonder if maybe PJ will be a graphic designer. He is an amazing artist and his handwriting is even better. Astounding, really.

Math is his jam. Pretty soon I won't be able to help him with his homework.

Nikes. The Boy is partial to his Nikes. I am dying to get him in a pair of red Chuck Taylors but he will have none of it.

Ocean. I think PJ may have come from mer-folk. The ocean speaks to him and is the happiest of his happy places. He is basically Moana.

Parkour has been a blessing! We stumbled on lessons after he had a phenomenal parkour birthday party a few years ago. The sports has an amazing, inclusive climate and it is perfect for PJ, who is not yet ready for team sports. Parkour is individual, but the community is close-knit and welcoming.

Quiet? No thanks. He might be talking or he might be singing or he might be stimming, but my PJ knows how to make a joyful noise. Lots and lots of noise.

Religion is not a thing we have touched on yet with PJ. He has been welcomed into both of our faiths, but we have not pursued any sort of true religious following for PJ. It wasn't important before, but as he gets older, I find myself wanting more. I want PJ to know and love God, to be a good human and have a faith that he finds comfort, community, and guidance in.

Surfing. Again with the ocean, but riding the waves has made my Boy smile like I have never seen before. His first time on a board, the instructors only brought him back because he was chilled to the bone- practically turning blue. His smile is carved into my heart forever, and hearing some of the volunteers talking about the kid who was "so awesome" and a "real surfer" filled me with pride for my brave, mer-man of a son.

Thomas the Train. PJ is a little less mature than the average 8 year old, and Thomas is still his best guy...er, train. Still, as PJ has grown, the way he plays with Thomas et al has grown as well. As a toddler, lines of engines would cover any flat space- our kitchen table, the tv stand, a windowsill. Now, he builds whole worlds with his tracks, and if he doesn't have a piece that he's looking for, he creates one out of Lego's or magnet tiles or, once, Ritz crackers.  His original playmate might be the same but the way his creativity had blossomed is really something else.

Understanding my Boy can be a tricky thing. It takes work, lots of work, and without it, it is easy to simply see a misbehaving, aggressive brat. Sometimes, I see something in his face when he is in the throes of a meltdown that looks like shame, and it chips a piece of my heart away every time.

Victories come in huge doses, like his happiness when he surfs of the first time he cheered in front of hundreds of people. But they also come in small doses, like when I showed him the "Griffindor" shirt I bought him (side note: I'm a Ravenclaw) and he asked me "Where did you get that?" Follow up questions have not been his bag until recently. Small sentence, large victory.

Warrior is the term most often used for Autism parents. I get it, but I don't know that it's an accurate description of me. Frankly, I feel like I'm a cross between Napoleon and a honey badger with a smidge of Dorothy from the Golden Girls thrown in. If you asked our school district, the description would be similar, but with more swear words and eye rolling. Warrior kind of gives the impression that one is storming the castle with a plan and all their wits about them when, truth is, I can spend hours preparing for an IEP only to dissolve into tears ten minutes in because this is my baby we are talking about.

X...you guys. I just don't have anything for X. What do I look like, a sorcerer?

Yes is a word that PJ has become used to hearing. Picture it, our living room, almost 7 years ago. PJ had just been diagnosed with Autism and we were like lost souls, trying to find their way to Holland. We were desperate for PJ to have language, and when he finally started using more than just word approximations, the word he said often ended up in his hands. Come back to the present where PJ now has tons of words and...uh...is kinda spoiled. While we have certainly pared way back since  our "YES PRECIOUS CHILD HAVE THIS!!! AND THIS!!! AND SOME OF THIS!!!" days, we are still dealing with the fallout of a child who has difficulty with social skills understanding that "no" is a thing.

Zest. PJ is full of it. Some of his color is part of his sensory disorder; PJ needs to FEEL things, hard and strong, in order to get any input out of it. But I also like to think it's his nature and pure love of adventure that makes him want to jump into the roughest waves or ride the tallest ride or hear the loudest applause. He wants to feel things under his feet and in his hands, feel the wind whipping past on a roller coaster or the water engulf his body when he jumps into the pool. And sometimes it's subtle- he stopped a teenage girl the other day to talk about her bright red lipstick (and also asked to hold her hand, LOL!).


A Weirdly Sporty Post: Remembering Gordie and his Biggest Fan

An early Sunday wake up call from my son left me scrolling Facebook at 6:30 in the morning. Before the coffee is done brewing, scrolling Facebook is Top Level Brain Function for me at that hour. First coffee, then frying bacon because, safety.

I clicked into the Memories Feed and was treated to the usual montage of pictures of PJ in various stages of fun, mixed in with the Angry Flyers Updates that permeate my feed during hockey season (those should be trailing off until the fall) and other random thoughts when I came across a news piece on the life of hockey great Gordie Howe, who passed away two years ago today.

Growing up a child of my father meant that Gordie Howe was mentioned in our home the same way one might talk about a family member. My Dad was a man of science, but he was just as much a man of sport, and Gordie Howe was his idol. I think my Dad would have run away to join the Howes the same way another child might have run away to join the circus. Although Howe was done with his playing years before I was old enough to stay up to watch a hockey game, I was treated to tales of his career, told with an enthusiasm that was almost like watching it happen. He was as talented as he was terrifying, as gritty as he was great. In our home, he was The Great One, no matter what fancy West Coast-style players may have glided into the game (ahemGretzky).

Gordie Howe was a talent for the ages, but the driving force behind his success was his wife, Colleen. She managed her husband (and later, her sons) with skill and creativity in a time when it was unheard of for a woman to be in such a role. They also raised four children, one of them growing up to be the one of the finest defenseman and classiest human beings to ever play for my beloved Flyers
(Shout out to Mark Howe).  Colleen was not merely his love, she was his equal, and a trailblazer, and his support allowed her to be that in a time when few women were. My parents enjoyed a partnership that was the non-athletic superstar equivalent, my Mom the equally valued brains and talent in their little empire.

One of the hallmarks of the career of Gordie Howe was its longevity. Howe had a career that spanned six decades. Six. Decades. To give it some perspective, I won't be six decades old for another 20 years, and 20 years is considered a career of length in the NHL. Six decades, long enough to have already become a legend before he hit the ice professionally with the children he raised while becoming a legend (you may need to read that twice). The latter decades may have been missing some of the jump of his earlier ones, but teams were well aware of the value in his presence and the skills that even age could not dull completely. My Dad was a workhorse as well, never content being at home during layoffs or between projects during his career as an electrical engineer. He knew he had value, knowledge and worth to bring to employers and did so into his 70's.

Howe was gritty, fearless, and calculated in the manner that every movement sent a message. He gave up being needlessly scrappy early in his career, allowing his skill to come to the forefront but still able to send a physical message when needed (a skill for the ice, not for the non-athletic arena of school and work, lest any weirdos want to take me to task). He was an ambassador to his sport in the comparatively brief time he was off the ice. He was an inspiration to many of the players I grew up watching, and to the kids those players produced. Even my cat, named for him, led a Gordie kind of life- she lived long (almost 19 years!), tough (ask any guest who came to our house), and skilled (gentle, patient and understanding of PJ in a way that belied her general nature).

Both my Dad and Gordie are gone now, and in that cruel irony of adulthood, I can see with clarity now just what lessons my Dad gave me having introduced Gordie into my lexicon, too late to thank either of them.

Check HERE for a fantastic piece on the life and passing of Gordie Howe by NHL.com




Of which we do not speak...

A little over six months ago, I lost my father.

This is not going to be a post about that, because I am not there yet. In fact, I don't know where I am most of the time. My grief feels like something pretend, something that isn't real yet. 

From moment to moment, I catch myself feeling normal. I am in the middle of making PJ breakfast or fighting traffic to get to work and the world feels as it should, which means my father is in it. But then, triggered by nothing more than one breath to the next, I remember.

When that happens, my grief turns to cement, literally weighed down inside of me. I can talk about how much PJ reminds me of my dad when he's doing his math homework. I could talk about how much he would have loved the Eagles Super Bowl win. I can talk about how much he loved science, even though in the end, science is what took him from us sooner than his cancer may have. I can say these things with light in my voice, with love in my thoughts.

The kicker is that I know this is not healthy, that to keep all of this inside of me can equate to actual physical toll on my body (see the amazing TED Talk by Ash Beckham). I know that there are people who want to help. I know that shutting down when things get bad is stupid at best and insane at worst. I know. I know that is this not the thing to do to protect myself and yet this is what I do to protect myself. I can not talk about my grief. All those things, the math and the Eagles and the science are things I might have talked about when we still had him. My grief is that cement inside of me, a million pounds of it, and to start chipping at it feels dangerous, reckless. If I keep chipping at it, there really will be nothing left when it is gone. To hold it feels like holding on to my dad, a feeling that is stupid and sane at the same time.

The sane part knows that my Dad would not want me to go down with the ship. Even though my Dad was a man of science and math, there was also a bit of the poet in him, and I think it's that poet that connected him to his high-strung, sensitive daughter, even when the scientist wished I had majored in IT instead of social work. His duality in his existence allowed him to be proud of his do-good kid and still wish she had chosen an educational path that would not leave her on a steady diet of ramen. The problem solver in him would know that I need to face my grief. The insane part of me knows that to face my grief, to let it air out and then heal, means that I will have come to terms with losing my father. And that seems impossible, so I will continue on in this weird, self-imposed limbo.

“For now is my grief heavier than the sands of the seas, she thought. This world has emptied me of all but the oldest purpose: tomorrow's life.”
― Frank Herbert, Dune  

 

Job Description

There have been thousand upon thousands of essays written about what it is like to be a parent. We write about our strong-willed children, our shy children, our wild children. Tales are told about what it is like to raise a child who is differently-abled, a child who is gifted, a child with amazing athletic ability. When we talk about raising our kids, parents usually say that they want to raise good, kind humans, but while we are all looking for the same finish line, we are all running a very different race.

From the moment I heard about PJ's Autism diagnosis, I assumed I would take on the Mama Bear role. Want to suggest he can't do something? Want to try and keep him from services he deserves? Want to exclude him? I would be fighting it with claws out and bear strength. And I won't lie- sometimes being a Bear is fucking hard. When PJ was first diagnosed, I had so much to learn about the hats I would wear. One example was learning that gathering him up in my arms when he was upset was not always the best thing for him, no matter how much I wanted to shed my bear suit and be a regular Mama. Being both advocate and parent to your child is a tricky thing,

So, fast-forward to six years later. My bear suit had come on for school districts, teachers, insurance companies, other children...really, anyone who seemed to keep my son from reaching as far as I knew he could. I thought it was just what you did. Something in the way? Knock it down. That's the job.

Last month, I was watching the Olympics and catching up on work notes when I heard the strains of a song during a commercial. I rewound to watch it again, and the sweet voice of JJ Heller floated over a montage of tiny future Olympic athletes as they fell on skates, tumbled on skis, and endured teasing from competitors. Each time, their mom was there to soothe their bumps and bruises, warm freezing hands, and offer snuggles and words of love and encouragement.

"Go after your dreams, crazy as they may seem.
Go chase all the stars in the sky.
Baby, I'll be paving the runway
 'cause I know that one day you're gonna fly."

I pressed "Rewind" and watched the commercial again, a few times. I felt my eyes fill with tears, knowing what it is like to watch your child struggle. I could relate to these television commercial mamas who picked up their babies and let them take another shot at the very thing that hurt them. Plus, tiny kids on skis. I mean, really.

I listened to the song as it floated over the pictures. I grabbed my phone and in a minute, the song, Paving the Runway, was downloaded. JJ Heller's song now in my hand, I realized my job description as PJ's mom. I had the verbiage all wrong. I am not a Bear or a Warrior. Those words write a narrative that speaks of being adversarial or at war with this thing that is a part of my son or, more often than not, with the people who surround him. My job is to pave his runway, making sure that every opportunity, every experience, and every chance to learn is right under his feet, and I'll pave his runway until he's ready to take off.

"Paving the runway" became my mantra over the next few days. I listened to the song over and over. But, I can't just have a mantra like a normal person. I needed it with me. So...



I know. I have no chill. Normal people would have stopped at downloading the song. But something about the lyrics were so important to me that I knew I needed a reminder. When I am at a meeting that is making me crazy, when I am frustrated with so much therapy, when I am working so hard to make everything right, I just need to glance down and remember. PJ is going to fly. I'm just paving his runway.



Stumbling towards mediocrity...

If you somehow stumble upon this page, I want to apologize. I haven't been here in a while and, much like an abandoned house or the back of my car, things can get messy when I'm not tending to it.

It's been, by all accounts, two years since I have lived in this space. Once upon a time, this was my church, my confessional, my happy place. It was the literary version of those places you can go and throw axes. I came here to spew thoughts that I wouldn't share with someone in person.

Writing gave me more than an outlet. Writing gave me the chance to bask in a rare feeling for me; I could know that I was doing something I was good at. Writing gave me a mirror in which I could look, hard, at who I am and the things I was doing. And, on occasion, writing gave me a very tiny income and some free stuff. I even had the opportunity to share an essay on-stage. I have made great friends through writing and have had the chance to fill my heart with the things that other people have written.

Writing was my jam. But, somehow, I drifted away. I stopped by a few times but found that my rhythm was gone. The things that were on my mind were stuck there, left to feed and grow in my head. I was too busy to write, then things became too heavy. Facing this blog and all eight of my readers felt like facing a firing squad.

It wasn't just here- I wasn't talking to anyone. My penchant for social media was sidetracked by my penchant for shutting down. Texts went unanswered. It was bad, y'all. That kind of stilted feeling leaked into all aspects of my life. I was functioning at Mediocre at best- mediocre parent, mediocre wife, mediocre friend, mediocre employee.

It's time to try and climb out of this funk. It will be messy, and it will involve cycling back to some things I really, really would rather just move on and pretend never happened. But I am a grown-up- a middle aged woman!- and I can do this.

So, to quote the esteemed poets of our time, Salt-N-Pepa:

Here I go, here I go, here I go again.

Dipping my toes in.

I am not getting up from this computer until something is written.

I guess that last sentence would have qualified, but I know that I want more. It's been a long hiatus, this blog and I- the longest it has ever been. It's high time that I found my way back.

In the nearly-a-year that it's been since I sat down in this space, there have been so many changes, both for me and my little family as a whole. The first change is that back in September we bought our first home. It was heart-wrenching to leave our little apartment and our little town. It was the place we began our marriage, where we brought home our newborn son. We had grown friendships and has always assumed it would be where we planted our permanent roots. But, our issues with the school district became too great to conquer. There was just no place for PJ.

So we packed up and moved 11 miles away, to a much bigger town with a much different vibe, but with a place for my son to learn. The move was hard on PJ. He was terribly homesick and it took a few months for him to feel better. September and October were hell- poor PJ would sob every day asking us to take him back to his old neighborhood. Every time he cried, I cried, and I cursed the broken school system that made it impossible for PJ to have a productive place in the school and with his peers. But, things slowly got better. He is enjoying school and has an interest in his new building, new friends, and the perks of having a much larger living space! He has been invited to birthday partied, enjoyed school events, and staked out some favorite spots in his new town ( like the kick-ass playground!).

As PJ has learned to spread his wings, I have needed to toss aside some of my own social anxieties and meet some people as well. It's not really my thing, thanks to my general awkwardness and dull social skills. But, I managed, enough to make at least one great friend, a bunch of potential great friends, and to be a productive part of the school parent community.

Now it is May, and we are planning PJ's first summer in his new town. For the first time since he was 2, PJ will not be spending his summer inside getting autism therapies. Instead, he will go to day camp, and (hopefully) enjoy his first "typical" summer. I wanted PJ to have time with his peers and, even though he will have the one-to-one support of his therapist, have a dirty, buggy, swim-y summer. We are also hoping for some beach time, some surfing time, and some family time. Lots of ice cream, lots of sun screen. I hope it's the summer I have always dreamed of for PJ. Thanks to our tax return, we can even pay for it!

It's bedtime. There is a busy week looming ahead and things to do before I sleep. For now, I will hit "Publish" on this wretched post. Day One. Thanks for having me.

"I feel like all my life I've tried to find the answers."

My LTYM Experience or How I Accidentally Ended Up On A Stage

The final chapter of my participation in the Listen To Your Mother Show ended with our live performances. I turned 39 on May 3rd and on May 7th, I was on a stage at the beautiful South Orange Performing Arts Center with 12 other souls  (as well as our incredible producers, Sandy, Brooke and Deborah) that handily out-shined the beauty of the space. It all still feels as if it may have been a dream. A very gratifying, emotional dream.

It ended the same way it began, with my worrying about clothes. Before our first rehearsal, I was stressing out knowing that the next morning, I would be meeting a room full of strangers. Not only that, I would be taking a cast picture with these strangers and reading a story of the worst moments of my life. It seemed like too much to be vulnerable about my story and about my precarious self-esteem at the same time.

Despite all of that, I got into my car on a Saturday morning, armed with coffee and the soundtrack to "Hamilton." Clad in the pink and grey sweater I had chosen, I entered the loft space of the SOPAC to find a circle of chairs and the only faces I knew- those of our producers, who had sat before me as I auditioned in that very same space.

The rest of the faces trickled in, faces I knew vaguely from Facebook. I had no idea what stories I was about to hear, I just knew they would all be better than mine. I really had no idea what I was doing in this room. One of the women was even having a book published, for God's sake!

There were introductions and hugs and lots of "Hey, it's so nice to finally meet you!" We drifted to our chairs, and then it began. It sounds cliche and dumb, but these weren't just stories. There was so much truth and vulnerability and bravery, and it suddenly all made sense. I would have never made it to this room alone- none of us would have. We all needed each other. I could see the connections from one story to the next, like strands of sliver that tethered us all together. What an outstanding job the producers take on, to create this living being from nearly one hundred random tales.

We met again a month later. Instead of being impervious to the stories we'd heard, we were somehow even more open to absorbing them. We gathered after to eat lunch, giggling and exchanging pictures of our people and enjoying the indulgence of an afternoon cocktail. I realized that these were people I was going to know.

One more month and I found myself, again, stressing about clothes on a Friday night. But this time, it wasn't a pink and grey sweater at the ready, but a dress and heels, accessorized by jewelry chosen by a heavily pregnant sales girl at Nordstrom Rack. First thing that morning, I made one last drive to South Orange. I went in through the wrong door and, in a few steps, found myself onstage.

Many moons ago, in a life previously known as mine, I lived to be onstage. The itchy, awkward girl, plagued by acne and low self-esteem, would lose herself in Sandy or Mary or the screamy life of a Sweet Apple teen. Talent shows, Homecoming, every school choir concert, I would remember that there was something I was good at.

Fast forward about ten years (and at least forty fucking pounds) and there I was on stage again. This time, I wasn't playing anyone else. I was just myself. But despite the reservations I felt about being myself on stage, I found that the feeling of waiting in the wings to go on, the glow of the lights, and the sound of genuine, kind applause hadn't changed. It felt like a combination of a warm bath and an electric shock- two things that do not generally go together.



I sat on stage with my people and listened to their stories. Despite the fact that I was up there in front of hundreds, the stories felt as visceral and real as they always had. I had tears in my waterproof mascara-clad eyelashes when it was my turn. I walked up to the podium and totally blacked out. Seriously. I know I read my story, but it was like I was underwater. I forgot about the audience, didn't worry about looking fat. I could see the story I was telling as if it was happening right there.

My story was about the most terrifying moment of my life so far; I could not find PJ, and feared he had wandered from the house. As I read my piece, I was in my bubble until I got to the part where I found PJ, safe and okay, and the entire audience audibly groaned with relief.



That groan was the single most gratifying experience I have ever had as a writer. I suddenly remembered all of the people in the theater and realized that they were with me on this journey. It meant that I had told my story well enough for them to understand how terrified I was, and the crushing relief I felt when I found PJ safe. That was an amazing and unusual experience for a writer. I have no way of knowing if the things I create have any impact whatsoever because I am not there when people read it.

After the show, after all of the incredible stories had been told, I headed out to the lobby to find Pete before the second show began. We talked a bit and as we did, people came up to me with words of sweetness and encouragement and thanks. It meant that telling my story served the purpose I wanted it to- to let people know that sometimes, blame and finger-wagging and I would never let that happen's are just hot air on a fire.

We moved on to the second show, and I felt a new jolt of electricity go through me as I thought of my sister and my friends who had schlepped almost two hours to come see the performance. The second show had a different vibe, more intimate and serious. But it was a great show and before I knew it, we were backstage again, celebrating with champagne sipped from hijacked Dunkin Donuts cups. The performance space was transformed into a reception area, where I sipped a little more champagne and ate the most delicious meatball ever. I switched my very high heels out for a pair of socks that were more forgiving, if not fashion forward. We partied together until there were just a few stragglers left, and then we moved the party across the street to a great little bar.

In my grown-up life, there are not a lot of opportunities like this and that's okay. Seeing my son perform the first time, and to be witness to how much joy it brought him, eclipsed my biggest performance high times a million. I love my life, even when it's messy and dumb, but I also loved this glimpse back to who I was. Ironically, the bridge that took me there was who I am now. Either way, I could not be more thankful for this incredible opportunity.

I can not encourage you enough to visit the channel for our show and listen to all of my amazing, brave, talented, beautiful cast mates. Our stories, all together, made the show, not any one piece. To borrow a phrase, you will be changed for the better.

"My blurry lines, my messy life
Come into focus and in time, maybe...
I can heal and I can breathe
'Cause I can feel myself believe
That everything changes..."
-Everything Changes- Waitress Original Broadway Soundtrack

White Girl Talking

The news lately has swirled with stories of division, hate, fear and exclusion. From the stories that made national news in my own little town, to the stories that made national news for their heartbreaking disregard for human life, it all certainly gives way to a lot of talking.

I had a conversation with someone today about a YouTube video he had seen. In the video, an African-America.n gentleman told his story of an encounter with police that remained un-contentious (is that even a word?) and peaceful. He conveyed that the reason for this was because he was respectful and cooperative. Which, of course, is more than likely true. His tale seemed to say "If it happened to me, it can happen to you. Just behave."

Of course, in 99% of the cases, this is true. I know that most people have positive interactions with law enforcement, no matter how they feel about getting a speeding ticket or being caught without car insurance. Things almost always go a little easier when every acts like human beings.

Almost always, except when they don't. I know I'm just a White Girl Talking, but it seems offensive at best to hold up the story of one person and say "See? The cops didn't beat this guy up! You just have to know how to behave." That logic is flawed. Would one woman ever say to another "Well, jeeze! I forget to make dinner all the time and my husband doesn't beat me. You just have to know how to behave!"

Sounds asinine, right? But that's exactly the attitude conveyed when we tell people of color "Well, if you didn't talk back/have a record/resist/etc..."  Any other time, when a section of human life is marginalized, we try to do better by them. Nobody would say to a group of women, marching to being awareness to domestic violence, that "Men's lives matter, too!" Nobody would say to a group marching to prevent child abuse that "Adult lives matter, too!" I have never seen anyone standing on the sidelines at a walk for Autism yelling "Cancer matters, too!"

Yes. All lives matter. That's without a doubt. Every life is important and meaningful and necessary, no matter how much to the contrary that may seem. All of the lives matter equally. That said, it is not for anyone to look at a group that has been marginalized, that feels as though they need to raise their voice to be heard, and patently set them aside by saying "All lives matter" when they mean "...but some more than others."

Last week, the world lost a powerful voice upon the death of writer and Nobel Peace Prize winner Eli Wiesel. His memoir, "Night," changed my life, as a Jew, as a writer, and as a human being. The morning that the news of his death broke, I pulled it from my bookshelf and read it cover to cover, sobbing as I took in this story that I already knew. It's a slim novel, but so powerful in its telling of what can happen when hate spills over. The way that hatred can sweep out an entire people and how the hated can change, so quickly, into people who themselves hate as a means of survival.

It seems like every time I turn the news on, there's heartbreak. The stories get worse and the casualties pile up. And in all of that rubble there are beacons of hope but, on the whole, I don't know what the answer is, or how to even begin to go about finding it. All I can do is try to keep my eyes open and my heart open, and to make sure that my son is doing the same. I hope PJ will see color and difference and celebrate it, not separate.

Nothing's what it seems, I mean
It's not all dirty, but it's not all clean 
-"Stand," Jewel