the pursuit of everything

Sometimes you are smack dab in the middle of a perfect moment, and you don’t even realize it until looking back because it presented itself as regular old life.

A couple of years ago I was discussing Parker’s soon to be entrance into Middle School with my friend, Wendy. It’s a tough age, wrought with hormones, insecurities, friend drama, a lack of impulse control and a student who finds themself no longer a tiny child but is not yet an adult. “I always told my kids, Middle School is just something you need to endure,” Wendy shared. She's been through the experience with four amazing kids, so I trust her implicitly.

A few weeks after we made a cross country move from California to Missouri, we enrolled Parker in Middle School as a brand new 6th grader. After our hellish Special Education experience in CA, I was nervous, but the bar was low. We just need to get endure it, I told myself.

Parker is now in 7th grade. This week his school had something called Pursuit Week, where 6th, 7th and 8th graders got a break from traditional learning to embark on a more hands on, immersive experience, exploring topics they might not otherwise get exposure to in traditional curriculum. The possibilities were endless when it came to pursuits: Happiness, Space, Anatomy, LEGOS, Scuba Diving, Worldwide Desserts, Exploring STL and more.

Parker took part in the “Welcome to Hogworts” pursuit. The day it started Parker jumped out of bed, (on a Monday at that), excited to go to school. It was just the thing he needed after the ending of a long third quarter of focus and hard work. 

Each day he came home with trinkets and new creations. I saw pictures of his group playing Quidditch and making butter beer, creating art and making potions. New friendships were made since all three grades were in groups together. Every morning he looked forward to going to school.

Trying Butterbeer

I had the opportunity to Chaperone on their field trip, first to the Missouri Botanical Garden for a Herbology class. I rode the bus with them, because I wanted a truly immersive Middle School Field Trip experience. We attended a Harry Potter themed classroom Herbology presentation which was fascinating. We learned how plants are essential for human life, and offer numerous benefits from healing to overall wellbeing.

We then explored the grounds of the garden in a guided tour. It's an incredible 79 acre garden in South St. Louis, founded in 1859 and ripe with culture and history. It was an educational and spiritual experience as we fed the koi fish and geese, and learned about the Japanese and Chinese Gardens.

Kami is divine energy that influences our lives 

Next up, we headed to the St. Louis Zoo for a scavenger hunt of Hagrid's magical creatures. 

I was in charge of a small group of students as they completed a scavenger hunt of animal photos. Students navigated the Zoo as they creatively snapped numerous pictures of proof along the way. All the kids treated Parker like any other student, even when he was scripting a Youtube video or eating a rouge skittle off the ground. At the end they all got ice cream and they all looked like happy little kids on a field trip. It goes so fast, and it's truly an honor to spend time with other peoples kids.

At the end of the trip, sweaty, sticky and happy.

Yesterday marked the last day of the much anticipated Pursuit Week, and I heard Parker walk in the house after school. I ran up to greet him. "Parker! How was your last day of Pursuit Week?" I asked as my voice suddenly cracked and my eyes filled with tears. He looked up at me curiously, and responded “good.”

Tears plopped down my face, and I had to laugh that it was HIS magical adventure ending, yet I was the one crying because it was over.

Never have I ever seen him so immeshed in the heart of a school. It was the very living definition of inclusion, and one many people with autism don’t always get to experience. Everyone in the class was learning together. Most had the same baseline for the topics and activities. He understood what he was learning and could be a meaningful contributor to others. They taught him by their example- norms like sitting and waiting and taking turns. He taught them how to look at things differently and how it’s still ok to show unbridled enthusiasm for learning and for life.

I'm sending a very special heartfelt message of gratitude to the Teachers and staff that made this week happen for my son, and for ALL students. I can imagine it was expensive and exhausting and time consuming, but the magic they brought will be remembered for a lifetime. 

It turns out we are the lucky ones. Our Middle School experience is not something we’ve had it endure, it is something to be savored. 

real life

I love to share the good and shiny parts. Partly because there are just so dang many. It's so much better than I ever ever expected: this little life of mine. Some moments feel like a movie, a golden light casts over my entire view. A good movie- with a happy ending. There's been moments where I've just stopped time and thought- Wow, I am so grateful for this life, these boys, this community and these people in this particular slice of life we are in right now. I never want to make my boys autism about ME. When Greyson was newly diagnosed, I complained about it- this terrible beast that stole the light from his clear blue eyes. I went to one Parent Group meeting and everyone took turns complaining about their life, trying to one up each other's woe is me story. Everyone grieves and heals differently, and I realized that way does not work for me as I sobbed into my steering wheel as soon as I got into my car afterwards. And then in my seeking of knowledge and in my pain I softened. My empathy grew. I heard from adult autistics who shared how gutting it was to hear, "I love my child but I hate their autism", because where does that line of separation lie? They said it felt like hearing, "I hate my child." So every day I try to grow and learn and change into a better Mother. The kind of Mother my boys are worthy of having. 

But sometimes the mental load of it all threatens to crush me. When I wake up at 3am and wonder who will visit them when I die as my heart pounds into my covers. I read gutting statistics like people with disabilities are three times as likely to be sexually abused. I wonder who will be their legal guardian and hope they will be taken care of. 

Early intervention was so hard. Behavior Therapy is best delivered in the natural environment, so we were home 30 hours a week, Monday through Friday, sharing our home with therapists. Mostly only leaving for a quick trip to our neighborhood playground or our two hours of Speech Therapy each week. I am so grateful for that time with them, and grateful for the incredible team no one other than God could have provided me with. I am so lucky I didn't have to work and I could show up for Mom'ing in the way I wanted to and needed to at the time. 

The mental load of advocating against a District that was failing their students with disabilities daily chipped away at my soul little by little. I remember little moments, the First Grade Teacher who told me having Parker in her reading group "was a nightmare because he doesn't pay attention to anything",after I asked how he was doing in class. I remember having to fight for them to let him have lunch at the same time as general education peers instead of at a different lunch time where all the kids with disabilities sat in the back at a table alone. I remember going to so many board meetings, some ending late at night, where I had to walk back to my far away parked car downtown alone. I remember practicing my three minute statement to the School Board over and over and over again, praying that this time someone would listen to me this time. It's an honor to be able to speak up for such an important cause. You can watch my Board Statements HERE and HERE.

Sometimes fighting for something that means so much to you, can rip out your heart.  Every new year of life is left with new challenges and I go from advanced to beginner over and over again. You can't even ask your friends who also have disabled kids because every child and every need and every therapist and every school and every Teacher and every placement and every opportunity and every challenge is so incredibly different. A person with autism can grow up to be an investment banker, or grow up to roam the aisles of Target while supervised as part of their Adult Day Program. Most of us are left floating somewhere in the middle.

I meet with Greyson and Parker's IEP team and work on coming up with goals and try to be an equal member of their Individualized Education as the law provides. But the whole process is so dang overwhelming and complicated and so much is left up to interpretation. Imagine trying to be an equal member of a team when they all meet frequently and work for the same company. Plus you don't know: all the placement options, the language they use, the curriculum available, the possible placements, the teaching methods, and all the rules. Some schools are required to use certain curriculum- even if it sucks- but they can't tell you that. They just have to toe the company line. They have to teach aligned to same grade standards instead of current developmental baselines which makes no sense to me at all, because if they could learn what their age equivalent peers are learning they wouldn't need an IEP.

There are times I feel so overwhelmed and so alone. I've left meetings over their future and walked briskly to my car so I can cry once I get in and shut the door. I research constantly and know my boys so well, yet it still feels so hard trying to get them what they need. I hired an advocate once for help, but she was adversarial and a little crazy so I don't think I'll do that again. 

Sometimes this has nothing to do with how wonderful the other members of the team are- it just is, and you can see how it inherently makes it harder to feel like part of the team when you are the parent.

I'm by no means a School expert, but I am a Greyson and Parker expert. At least the closest one can get to being one on earth. I used to make these sheets each new year of school, but lately I've made entire videos. If you want to see one, click HERE.

So here I sit and share the less shiny parts with you. Seeing some school work samples of Grey's from yesterday pulled me into a tailspin and I'm writing to you now in the hopes of pulling myself out. Sometimes when you share the monsters out loud, they lose their scariness. 

Even when it's hard I'm still grateful for this story that I get to live. Life is a package deal, you can't sift out the bad or the hard parts so you can only live the good ones. I'll take them all. 

shit happens

Shit happens. (But sometimes it doesn’t ). However, I am always expecting it- ruining happiness for future me with mental simulation rides of worst case scenarios. 

I read a quote the other day, "Yes, but what's the BEST that could happen?" and I thought- YES! Yes, I need to try and think that way more. Maybe you do too? It's hard (so hard) but what's harder is living with the daily mental calisthenics of the constant creation of worst case scenarios. I tell myself I do it so I can "be prepared" for the worst, but the truth is- it just robs me of joy. If we have no joy, we have nothing. I want to take my joy back.

Shit happens. (But sometimes it doesn't.) I'm going to break rule #345 of mine: Don't talk about poop on a public forum. I'm about to bend that rule til it snaps. I mean- I'm in the privacy of my own room so I don't have to look you in the eye for this. And you are reading this is the privacy of your own whatever. If you are under 35- please read no further. This is for people in the trenches. 

Aging is a plot twist nobody prepares you for. It will humble the hell out of you, your ball-sack looking neck, and your aching joints. The older you get the less modest you become when it comes to the increasingly occurring medical stuff. At least I'm hoping that's the case because some of this stuff truly sucks. 

My latest venture- the dreaded Colonoscopy. Lord knows I've been putting this off like it's my job. But finally at my last physical, I caved and agreed to a referral. I had plenty of time to mentally prepare as the next available appointment wasn't for 6 months- which led me to February of this year. One minute I have six months to prepare, and the next I'm chugging prescription colonoscopy prep by the name of, Polyethylene glycol- which sounds like something used to slowly poison a spouse on Dateline. They try to give it a fun and sporty brand name, GoLYTELY, but I can assure you there is nothing lightly about the going.

The night before my procedure, I was instructed to drink two liters of Goviolently Golytely at 6pm. It is conveyed to you that, "Most people have a bowel movement within a couple of hours, but it varies from person to person." My husband, Michael, told me it took about ten minutes for him- we are in that sexy stage of marriage where it is acceptable to talk about shitting your brains out. In fact I think the traditional 20th anniversary gift is Preparation H.

As instructed, at 6pm, I chug liters of sad, salty tasting, butt-blast water and wait. And I wait and wait and wait. The low temperature for the day is ZERO degrees, and I am chilled to the bone with the copious amount of cold liquid sloshing around my stomach. Finally I go to bed, covering myself in heating pads as I shiver. I sleep poorly, waking with each stomach rumble and feared toot. I wake up at 5am and head to my kitchen for Colonoscopy Prep part two: The Sequel. I feel like a (slowly) walking and talking Goodyear Blimp. (Wait- do those even exist anymore? Do people even know that analogy?If you are old enough for a colonoscopy you probably know.) 

I've been instructed to drink another two liters of Gopainfully Golytely, so I do and I feel like freezing cold death. My eyes are swollen, I slept horribly, and I am as bloated as a chimpanzee looks. My headache feels like a near death experience. I had been planning on ignoring doctors orders and sneaking a little caffeine, but honest to gosh I could not fit one extra ounce into my person. 

At this point, it's been about 11 hours since my first dose of Gofrequently, Golytely, and still basically nothing. Because, as I mentioned before, sometimes shit happens, but sometimes it doesn't. Sometimes we are so expecting shit to happen, that we don't even know what to do when it doesn't. Seriously. I was so full of it, I felt sick. What is wrong with me? Am I dying? I wonder.

My head hurts so bad and I am nauseous. Everyone said drinking the prep is the worst, but for me it is everything after. I couldn't watch TV. I couldn't read. My head even hurt too bad for even a nap. However I am no longer allowed to eat, drink or even Advil at this point. I'm not supposed to arrive at the outpatient center until 11:15am, so I know I am in for a long day. Finally, after my second dose of Goloudly  Golytely, I started to get some action in the poop department, albeit much later than expected.  

One minute after introducing herself, my intake nurse asks, "What do your bowel movements look like?" as we are walking towards the scale. I look around in shock- does she just expect me to answer this right here in the open? I quickly scan the hall hoping no one is around.

"Ummm....murky like a swamp? Liquidy?" I state like a question. How detailed am I supposed to get?  Or is this simply small talk in a colonoscopy center? Is it rude if I don't return the question? "And how are your bowel movements, Nurse Linda?" I get on the scale, and after two days starvation and nothing but a liquid diet, I am currently FOUR POUNDS HEAVIER. My head pounds worse. I hate everyone right now.

We go into a room where I answer a million questions and get the dreaded HAND IV. My hands look like something from Tales of the Crypt. All skeletal and tendons and veins. The hand IV hurt more than the epidural I got when I gave birth to Greyson, I swear. Why couldn't that extra four pounds I've gained gone to cushion my hands? I wonder.

In addition to, "The prep is the worst," the other thing I'd heard was, "The nap is the best". They often use Propofol, a short-acting anesthetic that provides deep sedation. This is supposed to be the good stuff. The shiz that killed Michael Jackson. My pounding head couldn't wait for respite. 

Finally after three hours of waiting, I'm wheeled into the procedure room. I am transferred to another bed, and asked to lay on my side with my upper leg bent in a 90 degree angle. (Easy butt access.) I can't look anyone in the eyes, knowing what they are about to see. I watch a nurse testing the colonoscope-a small, lighted camera attached to the end of a long, thin, flexible tube called a catheter. I see the monitor set up for my very own colon viewing party. I can't believe I'm going to go to sleep and they are going to look inside my butt with this snake.

But then I feel the magical juice flow through my IV, and I can finally let go and float. Ahhhhh. I have no headache or fear. I dream of cheeseburgers and fries...

"Christina," the dark angel says, backlit by the harsh overhead lights of the procedure room. I use every ounce of energy inside to open my eyes. Why is she ruining my much anticipated nap? "We were unable to complete the procedure due to incomplete bowel prep", the GI Doctor says. I know I am sleeping, but I must fight back against this false accusation. WAKE UP. TALK, I urge my brain. "But I drank all the prep! I was pooping liquid!" The talking took so much energy that I passed right out again. And the next thing I am aware of, I am waking up back in my original room. That dark angel had to be a dream, I thought. It was so realistic, but they wouldn't give me important medical information while I am as high as a giraffe's eyebrows.

Apparently they DO, and apparently there was a big scary doodie monster waiting in my poop shoot. (You are welcome for not including the picture they included on My Chart.) "The procedure was aborted due to improper bowel prep" is written on my record. I feel shame when I read it- like I got called down to the principal's office for misbehaving in class. I feel like I need to hire a lawyer to get this expunged from my record. Or perhaps force them to add an asterisk that also states, *But she did ingest the FULL four liters of that disgusting drink.* It is not my fault I'm full of it. I tried my best.

I was so pissed I couldn't even enjoy my post (failed) procedure graham crackers and 7-up.

My discharge papers gave the recommendation that I repeat this procedure in three months with a "more intensive bowel prep." Michael and the boys picked me up and as soon as I got in the car I started sobbing. "I'M NEVER GOING BACK AGAIN! I WON'T DO IT! AND NOW I'M GOING TO DIE FROM COLORECTAL CANCER." It's funny what terrible sleep, no caffeine and not eating solid food for days does to a poor girl's heart. 

It's been a week since then. I've forgotten the intensity of the prep, the starvation and the shame. I am going back for round two- it's already booked. YAY ME! The intensive bowel prep is RIDICULOUS, but I'm going to do it. Because sometimes shit happens. (Even when it doesn't.)

With love and soft toilet paper,

Chrissy 

PS- I seriously can't believe I put this all in writing.

priorities

It's so easy to lose yourself to the obligations of life. 

Transfer the wash into the dryer. Go to your dentist appointment. Go to work. Schedule your physical. Don't forget eggs at the grocery store. Get gas. Pick up the kids. Pay the bills. Day after day after day. And then we wonder why we feel burned out and life feels unfulfilling. 

And then on top of all the minutia, we have guilt for the things we didn't do. The card we didn't send, the present we forgot to buy, the closet we meant to organize, the old person we didn't visit, the job we didn't do our best on, the kids sport thing we didn't volunteer for.

As humans, we are drawn to self help books. "Let Them" by Mel Robbins was a big topic at our girl's trip this weekend.  It's a good and important message reminding us that we don't have agency over other people's thoughts and behavior. If they want to do that- if they want to think that- then let them. I poked fun of it- claiming that it applies to like 2% of my life's big stressors and just doesn't work for me. Parker just recently learned how to turn on our stovetop and light paper on fire. He's been caught TWICE doing just this in the last week. "Let them" is going to get my house burned down. 

Lord knows most of the time it isn't "them" I'm fighting anyway. It's ME. (Please cue Taylor Swift singing, "It's me, hi, I'm the problem it's me.")

Most of us know WHAT to do to live a happy and fulfilled life. Just like we know what to do to lose weight or decrease stress any other accomplishment we want to tackle in life. But we dread the hard work of the middle. We don't trust ourselves. Or sometimes we know what to do- but we are just stuck in figuring out HOW to apply it to our own life and circumstances. I get it, and I fall victim to that too. If a book can help us unlock the wisdom we all carry inside ourselves- then why the hell not?

We also know what makes a life fulfilling- and chances are it's not the mundane crap I listed above, like laundry and dental check ups and an obligatory dinner with the Boringsons because you already committed to it. We must make an effort prioritize the things that matter to us. What do you want your life to mean? What do you want it to be about? When you die do you want people to say, "What a woman, she never missed a teeth cleaning." Most people have a list of their own priorities. Some say God, or creating things or family or friendships- ticking the things off that matter most to them. 

But if we aren't pouring into those things at all, let's face it- they are not a priority. And I'm going to hold your hand while I say this, priorities can't be based on wishful thinking. That would be like saying your health is a priority while you eat McDonalds cheeseburgers and lay on the couch every day. We must give our time to the things that make our own life a living, breathing, beautiful thing. And sometimes it is hard to remember what matters most to us, in this once in a lifetime, life we are living. 

So how do we change this? Sometimes it's just a matter of taking inventory and putting words to our priorities and values. We are all busy- but we need to make time for the things we value. Write yours down, speak them into words. 

I value learning new things, pouring my soul into things (substitute teaching and writing does that for me), being creative. I value connection with others as my authentic self. This is a great topic to journal on because I know there's more to my list.

Let's say you value friendship, for example- one of my priorities is meaningful connections with people. And because of that I have learned I HAVE to dedicate time to that. It takes showing up for others and yourself. It takes seeing and being seen. It takes making plans and showing up for them. It takes remembering the important things about people. Sometimes its easy, sometimes it's inconvenient- but you can't say it's a priority if you don't DO as if it's a priority too. 

Which is how I found myself on Saturday afternoon, driving to meet my old college friends for an overnight in Cuba, Missouri. It is so hard for me to leave the house overnight. It's part anxiety, part homebody, part I despise disrupting Greyson's comfort- and when I leave, it's hard on him. It's a struggle I carry. But I believe the struggles we are given in life are there to help us become the highest potential of who we are meant to be. 

So I took the 80 minute drive while I listened to the music I wanted to listen to, and I sang my heart out and not one teenage boy told me to stop. It was lovely. 

I was taunting my friends with a dead mouse stuck in a trap because I don't act anywhere near my age. My friend Sarah, has the most perfect little space for weekend get aways.

I have numerous memories that were not photographed, partially because we were all just present in the actual moment, and partly because we are 90's girls- pre cell phones and we know better than to incriminate ourselves with documentation. I'm kidding! (Not really). These people just feel like home.

So now here I sit with you and think about my priorities. Some people are stone. Unchanging. Hard. Impenetrable. Nothing comes out and nothing comes in. 

I want to be clay. I want to continuously be molded and shaped by the experiences I have and the people I meet. I want to be open to new shapes and sizes and ways of thinking. Moldable. Adaptable. 

If living a beautiful and authentic life is on your to do list too- take inventory. What do you value most in your life?

So Much Love,

Chrissy

Summer Vaca 2024

I wish I was just a regular feeler. 

But it’s hard for me to be in the middle of most feelings when life is just so hugely happy that your whole entire head smiles, and it's so freaking hard that in moments you can't fathom moving on, and so over the top amazing that it feels like a drug, and sometimes so heart bleedingly sorrowful that it hurts to breathe. 

It's no wonder most people will do anything- including self destructive things to avoid feeling feelings.

I was excited as I packed our family for Hermosa Beach, a beautiful beachfront city in Los Angeles, California. A place I called home until right after Greyson's First birthday. Greyson has been asking to go for months now- "First Hermosa Beach, then hotel pool and hot tub" he declared multiple times daily. Apparently his trifecta of perfectness, and a place we've visited every Summer since we moved away. "I heard you are going on a trip?" One of his Teaching assistants asked on our last day of Summer school, reciting the trifecta that everyone in Summer school apparently also had memorized. "We haven't booked anything- but I guess we have to now!" I declared. So we did.

Our travel day, complete with a 3:45am wake up call, and multiple air ports sucked every ounce of energy and caffeine I had in my body. The now, two hour time difference was foreign.

On our first morning in Hermosa, I woke up before the sun rose and was anchored down by an unexpected heaviness. I was hungry and exhausted and empty, and despite wanting to stay in bed, I knew I needed to walk to the beach instead. The beach can cure everything- right? I snuck around in the dark room as to not wake anyone, got dressed and headed out.

I walked towards the pull of the ocean with tears going down my face, I couldn't stop them if I had tried (and I did). This emotion in this location felt so foreign. I felt foreign. My life didn't feel like mine. I wish I had known that adults get sad and confused and don’t always know what to do because i thought I’d have everything figured out at this stage when I was a kid.

Last I lived here, I had a one year old baby. And now I have sciatica. Where did the time go from then until now? 

I  forgot my sun glasses and my hat, so I just cried out into the open. That's ok, everything's normal in Los Angeles. 

Most people slap a picture on Instagram declaring the beach, "My happy place", but I couldn't stop aching and sniffling, wiping away tears with my head down. Living in Missouri feels so so far away from Los Angeles now. It's like Hermosa doesn't even belong to me anymore. How does this exist every day and I'm not there to experience it? I don’t know how to be here and not live here. Even though I don’t want to live here anymore. So many feelings that couldn't fit under my skin so they leaked out my eyes.

I'm pretty certain Heaven will feel like the beach before the rest of the world wakes up. I felt the sun rise from the pier every morning we were there. 

People often ask me - Don’t you miss California? 

The real answer? An irrevocable, pound my fist across my chest kind of yes. But the truth is- I deeply miss everywhere I’ve lived- I miss how I feel when a place truly feels like home in my soul. I missed Springfield Missouri, my home for the 5 1/2 years it took me to graduate college. I missed St. Louis, Missouri when I moved to Los Angeles in 1999. I missed Hermosa Beach when we moved to Fresno, in the Central Valley of California in 2010. And I miss Fresno now with a herculean weight on my chest. I just want to hold tight to all the places I’ve loved in a basket and carry it with me everywhere I go. But I can’t because it’s too heavy, so here the tears of the ghost of past me fall down my face as I walk the strand by the Pacific Ocean. I listened to the Counting Crows as I walked...

And the price of a memory is the memory of the sorrow it brings. The Counting Crows, Mrs. Potters Lullaby

I cried because sometimes we have to move on from the people and things that we still deeply love. We don't just stop loving them. I cried because I realized I loved all the me’s that lived there too- even if I didn’t know it at the time. 

Some are the same, but so many of the places have changed as I walk on the pier. I remember when it all was so familiar. Every crack in the sidewalk on my nightly run back home. You think you will never forget the details, but you do. And as a feeler and a writer- the details make up my life. So it felt like my life was slipping away right now. 

It took me a couple of days to move through this sadness. Luckily I could still feel all the beauty.

Grey got Beach, Pool and hot tub daily. It's a pretty good schedule if you ask me.

In life, we want the drugs but we don’t want the side effects. We want to worship the sun but don't want sun spots or cancer. We want the wave but not the waiting when it comes to surfing. We celebrate the love but not the loss. But life is not ala cart, and everything good has a cost. 

My heart finally came around. What a gorgeous gift: to have lived here and experienced it all. Los Angeles has a magic that I just can't explain. The nostalgia turns from a chokehold to a comforting hug. Life is a process of letting go, of moving forward, a process of creating new to fill old holes, and a process of embracing what you have, not what you miss. 

Author Yann Martel, (Think Life of Pi), wrote, "I suppose in the end, the whole of life becomes an act of letting go, but what always hurts the most is not taking a moment to say goodbye".

So, with fresh tears and a new perspective I say, Goodbye (for now) Hermosa Beach, I will never stop loving you. 

EPILOGUE: It was nice to see the things about Los Angeles I didn't love: fresh puke on the street due to someone who had one too many shots the night before, common place car chases on the news, the road rage- where people don't hesitate to lay on their horn for a minute straight, and the weirdo asshole who said to Parker, "Get the F away from me dude", to 13 year old PARKER at the airport, and then proceeded to tell me to S his D when I told him where to shove it. 

to tell or not to tell, that is the question

My boys don’t necessarily look like they have a disability at first glance. There’s good and bad to that. 

The world has this expectation that we should all do things in a certain way. That can be beneficial for society as a whole. It’s why we have laws and standard operating procedures and rules. Like drive on this side of the road and put trash in a trash can and wear pants out in public. All good things.

But then we have very little room for people who don’t follow rules. People who may not look you in the eyes. Someone who doesn’t follow social norms. Someone who might not process directions the first time, (especially if they are verbal). It can be assumed they are being disobedient. 

People have asked me- How do you handle it in public? Do you tell people they are autistic?

When the boys were little, I felt the need to tell so many people we encountered that they were autistic. I think I thought I was being “helpful” at the time, but with time and so much reflection- I think it was because I was concerned with what the collective "they" thought. I don’t want them to think my boys are bad. I don’t want them to think I’m a bad mom. (Why did I care what they thought? Why do I still sometimes care what they thought?)

Over time- I’ve become more selective - but please know this should not come across as someone who claims to have the right answer and always feels peace with what they share. I've definitely gotten into my car and asked myself, 'WHY DID YOU SAY THAT?" I can do that in regards to pretty much any topic, which also includes autism.

Some people need to know- dentists, doctors, teachers, coaches, certain interactions we may have out in the world. Part of me says- But I don’t think autism is “bad” or shameful, so why not share?

I’m realizing the right answer is to first ask myself- Why am I sharing? Is it to make my boys understood, is it to advocate, or is it to make a stranger, and therefore myself more comfortable?

I think it all depends on intent. I'm trying to navigate from a place of pure intent.

I know- the potential hypocrisy! I write a blog and share about my boys being autistic.  I sometimes look back at beginning posts with shame. I hadn't yet heard adult autistic perspective on how awful it is to talk horribly about autism. That by saying anything along the lines of, 'I love my child but hate their autism" feels exactly the same as, "I hate my child", because how can they be separated?

I've tried to evolve as my thoughts and beliefs have evolved. My blog, my social media- my life is so much more than autism. We are all more than one thing that might define us. Not sharing doesn’t mean shame. It just means it’s not always my own story to share.

I’ve shared many times that I struggle with anxiety and depression. These wretched beasts that I wrestle, sometimes daily. I try to share in line with things that I would be ok with a friend or my husband sharing about me publicly. 

“She has anxiety!” Blurted to the Trader Joe person after I awkwardly answer their friendly small talk. 

“She’s depressed”, told to the person wondering why my eyes look sad and I’m wearing what I slept in at the grocery store. 

No. That would feel violating and awful.

There's my line. If I'm not ok with it being said about me, then I'm not ok saying it about them. I don’t share specific struggles my boys have due to autism. The hard stuff- their own beasts they wrestle. I will share about struggles my boys or I have due to the world in response to them being autistic. The world has a lot of growing to do to include and understand the Disability Community.

Every day I’m learning more about who I am and how I want to be. Sharing in response to looks or behaviors that challenge societal norms are not ok - for me. I love advocating for my boys and so that the world can understand them and people like them better. I want to do right with my words. It means everything to me- and I am still a work in progress. 

Aren’t we all my friends?

growing up 80's

In the rear view mirror, coming of age in the 1980s was a simple time, yet I can still intimately recall how complicated it felt on the inside. Many of us raised ourselves through the complex nuances of being a teenager. Hormones, acne, fashion, economic and social classes, friendship and love. We had the world on our shoulders and and not yet our own fresh slate to begin a life of our own creation. Fitting in whilst desperately trying to create and find yourself was the constant quest. 

We wore neon colors, bold patterns, shoulder pads, leg warmers, French rolled jeans, stirrup leggings, and huge bangs with a mother load of hairspray. Punk one day, preppy the next. We bought Swatch Watches, Guess Jeans, Espirit, Benetton, and Forenza. Rubber bracelets donned our Madonna inspired arms. 

The hair...this was the goal. You were only limited by your imagination and Aquanet or Still Stuff Hairspray.

Proof I existed in this decade. Permed hair, probably from JC Penney, and an Espirit sweatshirt. Circa 1987-ish. 13 years old.

There was no online shopping, so malls were EVERYTHING, including the first place your parents let you go by yourself. It was a place to discover fashion and socialize, eat a burger or pizza and drink an Orange Julius. You could get your hair and makeup done, your ears pierced or Glamor Shots taken, the outside world only reachable by payphone.

There was no social media. We got advice from MTV and highly anticipated monthly magazines like Seventeen, as well as the movies that ended up defining the decade. Ones like Pretty in Pink, The Breakfast Club, St. Elmo's Fire, and 16 Candles.

These movies united the otherwise nothing in commons. They made us believe in love and friendship, and perhaps more importantly, finding ourselves. We quickly learned, movie soundtracks were as essential as our beating heart.  The 1980s were a transformative decade for music, marked by a blend of traditional rock, the emergence of new wave, and the advent of synthesised pop. We saw ourselves in the characters we were like and the characters we wished we were.

Listening to the St. Elmo's soundtrack with my 13 year old this morning.

I think it’s easier to look at life through a lens of retrospection. When we've skipped ahead, and we know the ending. Collectively we review these times through, hopefully, an older and wiser lens. Holding onto what we forgot that matters and cherishing what still matters that we could never ever forget. We are no longer defined by our parents choices, their divorce, or car or income. Our life is our own creation.

Over the weekend I revisited the decade through the documentary “Brats,” where Andrew McCarthy attempts to come to terms with being part of the Brat Pack, the not so affectionate term for the group of young actors who were ascendant in ’80s movies. The movie centers on for some, the profound impact that term had on these young stars lives- some like McCarthy much more than others. 

Writer for CNN, Jeanne Bonner says, “When I watch the trailer for Andrew McCarthy’s new documentary, “Brats,” my pulse races as if I’m watching old home movies of myself and my friends.” 

As McCarthy examined his past, I examined my own. In it you can feel the decade, you can see your own younger self, and feel the angst McCarthy feels for not being seen as how he saw himself. You can feel the pain of being 20-something and not yet having a therapist or the communication ability and self awareness to articulate your own struggles to then be able to work through them. 

Bonner also writes, on a deeper level it also appears to be about the passage of time, the vagaries of fate and the way labels can loom large enough to change lives. Mccarthy was so viscerally affected by this term, by his ‘label” it’s as if he absorbed it and it became reality. His fear of being ostracized or typecast becoming a self-fulfilling prophecy. In it he authentically discusses his own constant fear and shame based internal voice. The irony being, the original article didn’t even list him as part of the "official" Brat Pack.

We are Gen X, a product of the 80s-our “good old days”.  Like every decade before or since thinks of their own childhood. Through the gift of time and retrospection, we know we are not the labels bestowed on us by media or society. We have learned that we all have so much more in common than we ever could have thought. 

Screenwriter of The Breakfast Club, John Hughes, already knew that. The plot of this movie follows Five high school students in vastly different social groups, as they report for Saturday detention and ends with the a written letter I will never forget, illustrating the changes the students undergo during the course of the day; their attitudes and perspectives have changed and are now completely different. 

Dear Mr. Vernon, we accept the fact that we had to sacrifice a whole Saturday in detention for whatever it was we did wrong, but we think you're crazy to make us write an essay telling you who we think we are. You see us as you want to see us... In the simplest terms and the most convenient definitions. But what we found out is that each one of us is a brain... ...and an athlete... ...and a basket case... ...a princess... and a criminal. Does that answer your question? 

Sincerely yours, the Breakfast Club

 

all summer

Like an obstinate teenager being forced to do something, I am making myself write. It's my way of organizing my brain closet. Looking through what's in there, keeping the gems, discovering things taking up space that I had completely forgotten about, and throwing out what no longer serves me. 

That pile is often pretty big. Why do we hold on to those kinds of things? Sometimes we have to get rid of those things in order to make room for the good stuff. What do you need to throw away?

So forgive if this post doesn't follow a nice little sequential path. Do our inner most thoughts- our own brain closets ever really? 

For the month of June, both boys are attending whats called ESY (Extended School Year) in Special Education Land. It's kind of a fancy term for Summer School. According to the Missouri Department of Education, Local school districts are required to consider the need for Extended School Year Services (ESY) for each student with a disability. ESY may be necessary to provide a particular student a free appropriate public education- which is Federal Law. 

This is the first year they've actually attended ESY. It's easy for my boys to lose skills that had previously been learned or "mastered" if they are not exposed to them, so I'm already gathering some materials to work with them once Summer school is over. I'm not going to lie, the four hours they are gone in the morning are an absolute chocolate covered godsend, and I'm trying not to fret thinking about what I'm going to do to stay sane once June is over. 

I remember when I first moved to Los Angeles in 1999. I left my job in St. Louis in Entertainment Marketing and was looking for employment in California. I had money to tide me over and a boyfriend who insisted on paying for everything- in fact- he told me I didn't even need to get a job- but I was sick to my stomach over wanting to be settled instantly. I was also fiercely independent, so I didn't want a man taking care of me anyway. I lived in Brentwood - an affluent Westside neighborhood- bookeded by the Pacific Palisades and Bel-Air. 

Palm trees lined the streets, and you could walk everywhere. It was a slice of heaven, yet I longed for stability, routine and consistency in my life. Malls and coffee shops were filled during the day with actor/waiters and people who just seemed to hemorrhage money. WHY ISN'T EVERYONE AT WORK? This 9-5 gal wondered. 

A job in marketing came with time- (maybe three weeks total). But the part that made me regretful, was the fact that I didn't enjoy that free time at all. The days spent exercising and shopping and walking up to The Coffee Bean and Tea Leaf at my leisure. The only thing that can truly hold someone prisoner - is your own mind. It doesn't have to be a place, proven by the fact that I was in one of the most gorgeous cities in the world, but still in prison.

I reminded myself of that today when I worried, "What am I going to do with the boys all Summer?!" I've spent too much time holding onto that exact thought. I make sure we leave the house, preferably doing something where we move our bodies at least once a day. Their childhood is already so different from other kids their age. They don't play sports. They can't go and ride bikes with friends, or hit up 7-11 for treats. They can't be at the community pool unsupervised. And especially for Parker that literally means my eyes have to be on him at all times. The boys don't have safety awareness.

But this is our life. My life. The one meant for me. The one meant for my boys, so sadness or regret over what isn't, although- understandable- doesn't serve any of us.  I guess one of my goals is that they don't feel like they are missing out on a beautiful childhood. 

But if I spend this time worrying about, "What am I going to do all Summer?" it's not possible to truly enjoy this time with them. What am I afraid of? Boredom? Exhaustion? Parker lighting the house on fire?  Greyson spending 8 hours glued to the television if we don't do anything? Yes, maybe all those things. But I can get so caught up in worrying about forever, that I forget to enjoy today. That is no longer serving me, and I need to throw it out. 

Today's outing took us to one of my favorites, The Magic House. While we were there creating, I saw this quote, and had to take a picture. 

"It doesn't matter what you make, it's the process of making that matters." Dale Dougherty 

I kind of paraphrased it for our Summer: "It doesn't matter what we do, it's the process of doing that matters." Besides, there's no such thing as forever, all any of us has is today. And guess what- today we can absolutely do. 

Brentwood Park

And we are already doing it- Summering. We've had fun. Sure, sometimes it's hard and hot and sweaty, but the process of doing is what matters. I mean- ask Nike- JUST DO IT.

Kirkwood Aquatic Center

On a tour of Chocolate, Chocolate, Chocolate. Click HERE to sign up for your own tour!

So what if we have a day or three of non stop television and Parker lighting our kitchen on fire? HA! I don't know what we are going to do all Summer, because that doesn't even exist. We've got today, and today is just fine.

So much Love,

Chrissy