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Social Distancing

PJ created this slide for his remote technology class! 
I can not believe it is the first of May. Leave to an Autism mom to let Autism Awareness Month slide by without so much as ONE blog post about it! But, these are strange times we are in. You win some, you lose some, you sometimes only shower two or three times in a week while quarantining.

Wait. What?

Anyway, today I just wanted to check in here, see how you all are, and share a little about how our things are going for us. It has been tough on and off- while PJ continues to do extremely well with his schoolwork, he is starting to feel the strain of quarantine, and it shows. When he is off, he is on edge;  cranky, highly prompt-dependant, and desperately missing his family, teachers, therapists, and peers.

Let's talk about that last thing for a second. A child with Autism does crave human contact and peer interactions. When someone approaches PJ he may seem disinterested or not engaged- he might be scripting, engrossed in something else, or not having a good moment. But PJ does want to connect with his peers, desperately so.

Think back to when you were going through that phase in life when some of your peers started to become attractive to you. There may have been one crush in particular (my first crush was a kid named Billy). You probably wanted to make out with that person but realized that even if they became a willing participant, you has no earthly idea of how these things worked. You didn't know if you should use tongue, no tongue, touch their face, cop a feel- what was supposed to be happening here? But then maybe you did get to kiss your crush, and it was awkward, but okay. You learned from the first time and maybe kissing got better, or maybe it wasn't supposed to be the person you should be kissing and you found another person to kiss.

Ooooookay. Perhaps I have been social distancing a while and there are things on my mind. But there is a point to this, just stay with me here:

The part in that scenario where you wanted to interact with your crush but did not know how to do it? PJ lives in that space all the time (I mean, I don't think he's at the wanting to make out stage yet, but the integration stage in general). I often see him watching peers play and interact, but when he approaches them, he just doesn't know what to do. Sometimes he is guided by his peers, sometime he just hangs on the edges and then fades back if there is no response. The problem is that for many children with Autism, there is no opportunity to learn from this process organically. PJ has people to help prompt him through these interactions, and even takes classes to work on his social skills. He doesn't get to just feel it out the way we all did because, at least right now. He needs help to process all of that information, and learn how to react in social situations. 

The point of all this is that social distancing in an Autism home is not just about being a little lonely. PJ is missing out on the very vital learning opportunities he needs to ensure that he will learn to understand other people and make friends. These are unprecedented times, of course, so I bear no ill will towards the people who are working so hard to keep our world afloat. But the COVID19 outbreak does lend notice to the issue that people with disabilities are often left without the supports they need during a crisis. Although our school district has been absolutely amazing in their delivery of distance learning, I have never felt PJ's need for the social aspect of school so sharply.

We are doing the best we can for now- since this is a scenario that we never imagined, there was no game plan to refer to. We are thankful that there is technology to help us grapple with Global Pandemic Life. But it is not the same as true contact with live people, and we are all feeling the strain.

Hopefully, we all only need to hang on for just a little longer.

Late Thoughts on Autism Awareness Day

Today is the start of Autism Awareness Month. I would like to greet it with some sort of pomp and circumstance, but since it's always Hey, Parent, You're On Day, I am sure I will have my hands full with distance learning and house cleaning and possibly remembering to shower. This is a pretty normal conundrum nowadays; I like to try and offer Autism some attention, but find that all of the rest of the joys and hardships of life weave their way in. Life isn't always all about Autism, but Autism is always in our life.

When PJ was first diagnosed, I went through the stages of grief like Ross and Kubler were my roomates. Denial (We need to get a second opinion!), anger (Why would God do this to my baby? I mean, what the fuck is wrong with Him?), bargaining (If I read to him every night...if we go organic...if we get all the therapies, all the meds, all the sensory toys...), and took a good long stop with depression (Lots of Crying, little friends or family or joy).

Getting to the last step, acceptance, took some work. It had nothing to do with loving PJ- I would love him if he was an axe murderer or even a Pittsburgh Penguins fan. But I thought that I could accept PJ without accepting this unwanted piece of him. I didn't want anything to be wrong with my baby. We would get ahead of Autism with therapy, with school, and with sheer will. But you don't get line-item vetoes with your kids. Loving your kid means that you love all the parts of them.

As it turns out, Autism isn't something we can outrun. Instead, it runs right along next to us. It's not going anywhere. Being aware isn't enough. If I don't want Autism to get underfoot while we run, I need to acknowledge it, make space for it, and accept it.

 I said that our life isn't always about Autism, but that Autism is always in our life. We used to worry about what PJ wouldn't do. Now, we assume he can do anything and if he can't do it completely by himself, we try and figure out what he needs to be successful. This can be in the classroom, at parkour lessons, at camp, at a birthday party. Like any other kid, sometimes he rocks the shit out of things, and sometimes it's a rocky shit show. When it's the latter, we regroup, try and figure out how and if it's possible to make it better, and take another stab. Sometimes we never go back to it (street hockey, The Lego Experience, karate), sometimes we try, try again (haircuts) and sometimes it's a win for the ages (surfing, parkour, Lego club at school). It's risky, of course, and there have been spectacular fails peppered in during his 10.5 years of living. But Autism isn't the boss of things. We are.

That is certainly not to say that Autism doesn't sometimes get...well, bossy. It is a diagnosis that is sometimes unpredictable and ruthless. But even in it's ruthlessness it is still my Boy, just magnified and intensified. I get to experience my son in the brightest of all of his shades and I am thankful for the strange and kind of messy-beautiful gift that is. PJ is an artist, an adventurer, a traveler, and a storyteller. We don't need a particular day or month of the year to want to show that off to the world. PJ isn't in the spotlight, he is the spotlight.



Real Talk from the (people who are sleeping with the people on the) front lines.

pixelated Daddy Nurse by PJ
We are in day nine million and five of quarantine, and while I am exceedingly thankful for our safety, good health, and home to hunker down in, the weeks have been on the tough side. We are acutely aware that this is not a vacation- I am still working and my son, PJ, still has school, even if it is within the confines of our little home.

I joked in my title that I am sleeping with the people- er, person. I am sleeping with ONE PERSON- on the front lines, but that is actually kind of a lie. It is true that I am married to an Emergency Room RN, but we are not sleeping together. Thanks to a combination of Coronavirus and a lack of the equipment my husband needs to keep him safe while he treats patients, we are not sleeping together, in any sense of the word.

To keep our family safe, Pete changes out of his scrubs before he gets in the car to drive home from a shift. Shoes stay outside. When he gets in the house, the clothes go straight into the washer, where they are washed in hot water with detergent, Borax, a white vinegar rinse and then rinsed again. Pete goes straight into the shower, where he scrubs down, his skin already drying from washing his hands over and over during his shift. He works nights so he sleeps during the day and when he gets up to go back to work, the bedsheets get treated to the same routine as his scrubs. Everything gets wiped down and reset to do it all again at the completion of his next shift. Starting today, Pete is sleeping in our spare bedroom to keep germs in one spot and decrease the chances of either PJ (who still sometimes sleeps in our bed) or I getting sick.

Pete is tired. He's an excellent nurse in the best of times, and I know that he's even better now. But, he is tired. He's sad, stressed, and worried about what he is seeing- increasingly sicker people coming into his ER, the ICU at capacity, and the coworkers that he refers to as "his" dropping like flies to quarantine. He's picked up extra hours to fill those holes, and there is no hazard pay. He has ordered his own masks from Amazon because his employer can't keep up with the demand (and that order may or may not get filled). There's no physical touch to take comfort in, as I am a germaphobe  we are doing our best to adhere to distancing guidelines. Family time looks different now.

We are grateful that we are able to pay our bills and feed our family and that is, of course, thanks to Pete's job. He is not working for free. But the cost of his job, which is high at good times, is astronomical now. The costs are the risks to his health and sanity, the loss of family time, and the precarious nature of getting paid to do something that could leave hims sick and not getting paid.

So when health experts advise you to stay at home, listen to them. Stay. The. Fuck. At. Home. That story I just told you about my husband? Multiply that by thousands, and throw in the doctors, desk staff, techs, custodial staff, and security. They are all out there fighting against a virus that is freakishly communicable, exacerbated by every numbnut that just had to go to the beach/store/movies/party/whatever. Remember how hard these people are working and don't make this harder for them than it already is.

Before You Read This, Wash Your Hands.

So. How is everyone doing? 


It's been a while for the ol' blog and I, but there is something about being in the house for three weeks that makes you feel mildly homicidal like you should explore your creativity, so here we are. It's been months since I have occupied this space 
We are living in the COVID19 era now, and if your home is anything like ours, you may be feeling a little unsettled. Out of nowhere, we went from our regularly scheduled programing to figuring out how to balance work, home life, online learning, social distancing, hand washing, grocery shopping, and the closure of so many of the things that we depend on in our day-to-day lives.   
I mean, you guys. The coffee urns at Wawa are closed. This is basically a sign of the apocalypse. THE WAWA COFFEE IS CLOSED. 
Wait. Let's breathe. There are so many things that are good. I've watched my son's amazing teachers create an online curriculum out of thin air to keep him learning and engaged, essentially letting us into their homes (their one area of respite from our precious kiddos) so PJ and all of our kids can attend class online, and feel connected to their peers and leaders. Facebook groups are teeming with volunteers, there to help our elderly neighbors, house-bound single parents, and first responders with whatever they need. Businesses have been outstanding, working hard to meet the needs of our community while the closures and social distance guidelines threaten to upend their livelihood. Even our kids, who are missing sports and playdates and family visits, are writing colorful chalk messages on the sidewalks to cheer up strolling neighbors. I ordered a pizza today, and my son was so excited to see a human that isn't me his head almost exploded. 
This all shows that even when we can't be near each other (#socialdistancing) we can get be there for each other. There is so much scary out there. So much. It's not something to be downplayed or joked about or not taken seriously. Many of you know that my husband is an ER nurse, and he comes home from his shifts lately worried about what he's seeing, the stress levels of his coworkers, and his fears on what is yet to come. Even the weather was uncooperative this weekend, rainy and petulant. There have been moments when I did not think I could do this. In my day-to-day life I wear a lot of hats, but I usually wear them one at a time. Wearing them all at once is hard
But...I have made it through two full week of distance learning and we're all okay. Perhaps I am better at being tested than I thought I was. 
For now, I leave you with this thought from a blogging favorite: 

You got this, friends. 


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.