Monday, July 1, 2024

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?

Sunday, June 16, 2024

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


Wednesday, June 12, 2024

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,


Friday, May 31, 2024

the start of summer

Our time on earth is so finite. I learned that at three years old when my brother was hit by a car and killed near our house. Maybe that’s why I love so big. Why I cry over the simple things like the ending of a school year. Why I loved pouring my whole heart into each classroom I was lucky enough to substitute teach in this year. 

Gosh- there is so much good in this world. So many people that are so freaking lovable. The school custodian breaking his back vacuuming and working until midnight. The woman at the bus stop, going to school at night after working at a fast food restaurant all day. So many people and so many stories of good. We don't even have to know people to love them.

And sometimes we've known someone a long time and we get to love them too. There are no guarantees of time with the people we love. Each goodbye could be our last. The amount of love we can give is truly infinite, but the time we have is not. So love as big as you can as long as you can. Grief and love are so similar because they are both actually love. 


The bar is so low for our Summer that we are doing the limbo over here. WHO is supposed to be entertaining these kids?! (I swear I'm not qualified.) Parker is 13 and Grey is a week away from turning 15. 

This is the sign on Parker’s door. Please note: I am the only girl that lives here. He is 13ing SO HARD, and I am on his short list of people he's just not that into. That is unless he needs access to fast food or Target.

For the most part, I'd say 98% of the time, I’ve welcomed their growing independence. Cherish the tiny things that make life easier. Their ability to dress and feed themselves- literally. Things hard fought and won due to autism and accomplished years after same age typical peers. They are growing into more independent young humans and it's awesome.

But 2% of the time their teenage aloofness has my feelings are hurt, or I get angry, or just plain sad. I just miss the small version of him that would curl his arms around my neck so tight.

I miss the kid who thought I hung the moon and would laugh hysterically when I tried to be funny. The one who begged for one more god awful round of Baby Shark. One more push on the swing even though my arms were going to fall off. Being a Mom was so physically hard, and there were moments I was desperate to NOT be so needed. But it was such a sacred time in life where you offer your entire soul to helping to grow someone else's- it's parenting when they are little.

This is the process, the circle of life many have walked before me and many will after. I accept. I am grateful for it too. We all talked about how freaking hard babyhood is, but we don’t really talk about this part as much. How it feels to be less needed and less adored. (Sigh). If you are in the thick of parenting little ones- I'm so proud of you. You are doing awesome.

There are hard parts and good parts in every stage, I remember. I don't have to push anyone on a swing. Now we can go out to eat at restaurants without being an absolute mess. Parker and I love to drive around and listen to music. He's currently on a 90's kick. I actually love hanging out with these teenagers.

Some sinus cold funk circulated through our house which left me in bed for a couple of days. The boys diet consisted of iPads and TV. Today I was fully ready to be human so I forced the only inside outing I could fathom- the mall. I know- still awful. I’ve been purposefully driving the route opposite the community pool near our house. I need green beret skills, and physical health and to be mentally prepared. Perhaps we’ll go on Grey's bday. Parker loses all cool and the ability to hear adults when it comes to high up swirly slide. When the attendant says- you need to be sitting - Parker goes headfirst before the person in front of him has landed. So we have to go UP THE JILLION stairs to monitor him and sometimes he will still pull a ninja move and change poses at the last second as we are running back down the narrow people filled stairs you are only supposed to go up  yelling- I SAID NO HEAD FIRST NO MORE SLIDE FOR YOU!!! Hoping to catch him at the bottom before he runs off to his next location.

I'm off to hopefully buy cute Summer shoes- all on my own. Kids at home and perfectly content on their own.I don't have to beg my husband to stay with them as he texts me, "how much longer???" every hour.  Maybe this stage isn't so bad at all. 

Monday, May 20, 2024

sunglasses on

We will never get this exact slice of life back again. Not in this shape and this size and this specific flavor. We will never be this age and this way and this exact make up of cells. It will never be this weather on this day in this year at this time. 

This morning I felt the heaviness of change that is rapidly arriving. It’s the first Monday I haven’t substituted in a school because there were no spots available. No part of me wants a day off- a day with just me and a mind that thinks in overtime. 

We finally got the morning drop off nailed for Grey. It only took 6 months. Ha! Some mornings it just took too long to put his shoes back on if he took them off, grab his communication device, take his water out of the cup holder, pick his backpack off the floor and get out of the car. The last time I tried, months ago, he noticed he had the wrong color straw in his water cup, and the conservation about- yes that is upsetting, and no we can't fix it right now took too long and the impatient asphat behind got mad. So I just went back to parking in a spot and walking him up to the entrance where all the Special Education classroom support staff waits for "our" kids. 

Two weeks ago, maybe three-we tried again. What almost 15 year old likes it when their Mom walks them up to school? Not mine. I sure as hell didn't. "Grey- do you want Mom to drive you up and you can walk into school by yourself?" I asked him. The answer has always been a big fat yes

As my car slowly inches forward, I call out reminders. Put your shoes on! Take your seatbelt off! Pick up your words! STOP DON'T OPEN THE DOOR YET! (Luckily that only happened once). I stop, roll down a window and make eye contact with a member of the staff as we watch him cross the street. 

Today I had to wear my sunglasses for the drop off because the tears kept coming. It's the boys' last week of school. It's the basic, mundane parenting jobs that I find the most sacred; things like school drop off and pick up. I know decades pass minute by minute, and its always so fast. It's usually Mr. Smith that sees us first- almost instantly.

Remember when I shared about Mr. Smith here?

Mr. Smith lifts his hand up like a wave, I've always known it's meant one part hello, and one part- I see him, I got him now. When you are usually deeply needed, it's hard to let those reigns go. 

Mr. Smith made it easier. That wave means the world to me.

Sometimes sad swells up like the tide, temporarily overtaking the good parts. You just have to let it move through you. The change. The sadness, the joy, the grief, the fear. It's moving through me today and it's heavy. If you see me this week and I'm wearing sunglasses- you know. 

Parker and I get to his school a little early, like we usually do, and we sit in the parking lot listening to music. He yells at me if I sing or attempt to tap to the beat, like he usually does. 

I watch the kids pour out from the School Bus and funnel to the front of the school. The sunglasses stay on. Parker hears my sniffle and looks at me curiously, this Mom of his who shares his huge joy for the world, but can also share huge sadness.

This school will never be this exact mix of staff and students, I think. New 6th graders will come in, and graduating 8th graders move on to what’s next, and that makes everything different. It’s hard to believe that the machine still moves on without them but it does. We've all been the ones left behind. We've all been the ones to move on. I hold those feelings close.

After Parker is inside, I drive away so slowly, examining the faces as they pass, many who have been in classes I've taught. Sunglasses on. Heart hurting, yet also full.

We can’t call time a thief unless in the very same breath we acknowledge what a gift it is too. I stop and feel gratitude for this day, in this very way it exists right now, tears and all, waiting for the next change.

Saturday, May 18, 2024

decorating your life

I'm always looking to define joy in terms of permanence. Yes, I know joy, she lives here, I want to announce. But joy isn't permanent. She is fragile by design, because life is always playing football inside the house. Sometimes joy breaks. She shatters. She scatters and can't be found. Available to all, guaranteed to none. 


When we die, we won't care how much money we saved or made. We won't care if we have 10 loads of laundry to do still. We won't care if our hair holds two inches of grey roots waiting to be colored. 

We will however care that we knew Joy. We shared her with the people around us. We can aspire that when given the choice, we loved. We held those who needed it. We noticed the gifts that were set out before us in our life. We made sure others felt SEEN. (If you are longing to be SEEN, start by truly seeing another, that's where the magic unfolds). We will hope that we lived our days in the ways that align with our souls work.

This week has filled me with a clarity I am attempting to claw on to, so I don't forget. Spoiler alert: clawing never works. So I remind myself to work harder on letting go, then I do on trying to control. Such good, easy words to read- but much harder to actually live. Joy is here now, so I will take good care of her instead of worrying about when she might leave next.

Whatever comes next, we are ready, you and me. We are ready.

When decorating a house, it has to be done in layers. Sure, you can run to Target and buy all the things and place them just so, but that's not what makes a house a home. That's what staging is- buying all the cute, shiny,souless things and placing them around. It's the highlight reel, because one might look at the picture of that souless decor and think- mine doesn't look all brand new and matching like that. 

They instead think, some of mine has permanent finger prints on it. I bought this on my honeymoon. This is stained.  A corner is broken on this one. There are scratches on it from when my puppy was teething. I found this at a thrift store. I lost one in this set. It doesn't match anything, but my daughter painted it when she was in preschool, and it helps me feel her now that she is away in college. It's dated-but it was my grandmas so I keep it.

The same can be said for rebuilding a life. It's been eight months since we moved from California to Missouri. I knew we would have to register for school, find new  doctors and dentists and pharmacies and grocery stores and basically ALL THE THINGS. But I didn't realize how it would feel to look at my life and see an empty house waiting to be furnished. My voice echo'ed inside it, and it felt hollow. In some ways going out around town when you know no one is freeing. But after time it is achingly lonely. It's a human condition to want to know and be known. I was desperate to go to Target to quickly furnish my life. 

But that's not how life works. At least not the kind of life I want to live inside. There were months over the Winter where I thought we would never get there. When will this feel like home?  I wondered regularly. Shouldn't that have happened by now? When will I make friends? Will I ever make friends? What if no one likes me? the 4th grader inside me asked. My purpose in California was hard core advocacy and intense focus on education for my boys. I didn't need to do this in Missouri- but now what will I do to fuel my soul?

You can't build a life all at once. At least not a good one. You must create little light bulbs. Those tiny little moments when something small just finally clicks into place. 

When I learned it was autism, I wanted that one big fix, one big switch I could flip on- to cure them, or fix it or make it stop. But there is no such thing. Instead what we have is Little Light Bulbs. Small things daily we can do to help them, to meet them where they are.  And although they are not the biggest or brightest of all lights singularly, together, they will light our way. 

This week I realized, there are enough lights on now for my path to be lit. I thought of our old house and our old life in California, and I didn't feel crushing sadness that it was over- I felt joy that it happened. And then I cried, because although that is a welcome change, moving on is still hard. 

Teaching fills my soul (and drains it sometimes! Ha!). I get to be my real, sometimes completely ridiculous self with the kids and it feels like home in my heart.

BONUS: collateral friendships like this GEM of a human and AWESOME Teacher, Mrs. Rose right here! 

My best loves, Jennifer, Angie and their kids. Having friends who have kids with Super Powers is wonderful and sacred stuff. Thank you for adopting me into your friendship!

I spent time with these gals from College, many for the first time in 25 years! It felt like old times in ways I can't explain. Genuine and authentic are musts for me, and these gals have that tenfold. 

Having my Mom, and my sisters and their families near is the best. 

If you are there in a new place, and want to know how to decorate your house? You just have to look for the next little light bulb to turn on. It's hard, sacred, tedious work. It takes putting yourself out there, and diving head first outside of your comfort zone. Making friends as a grown up is harder, but absolutely possible. You can't go to the playground and hope to make a pal like a little kid can, but you can go and try to find the places that make your soul come alive, and then just look around. 

Joy is always right around the corner. Sometimes it just takes time.

So much love,


Sunday, May 12, 2024

not the end

Do you know what this week is?

It's a great week to be alive. And right now is a great time to take in a big gulp of air and feel grateful you have lungs and you can breathe. Take your open palm and place it on the left side of your chest right now. NO CHEATING! Feel your precious heart beating. Today is also a day to wiggle your fingers in amazement of their perfect design. Look at those suckers! They are pretty brilliant contraptions. They can help us write, and eat, and wave and hold hands and flip people off if they piss you off when you're driving (KIDDING!). They even help some people speak.

This week let's make a plan to look around and notice the abundance. Abundance- one of the best words. It means overflowing with more than enough.  Enough to share even. Share your abundance with others. Even a smile is abundance if someone else doesn't have one.

Life is gift. And one that we often turn into a chore. A burden. Mundane scrolling nothingness. We stress and complain over things that feel so important, but often don't matter at all. But really, life is a freaking miracle. So this week we will remember, just how lucky we are to be alive. (I'm so glad you're on earth with me, friend).

Do you remember being a kid towards the end of the school year? You  count down the days with eager anticipation. You think of all the goodness summer holds: skin tanned brown like a coconut, sleeping in, running down your slip and slide so many times you rub off the grass, hoping that someone with a pool will invite you over, hearing the ice cream man bell,drinking water straight from the cool, metallic tasting hose, staying out past dark to catch lightning bugs. 

Greyson is finishing his Freshman year of High School, and Parker is finishing 6th grade- his first year of Middle School. It was so fast. We’ve found our routine and it feels safer and more cozy than I ever could have imagined. I’m not quite ready for this chapter to end. The countdown to Summer has begun.

For once in my entire life, I am not dying for Summer. In fact, typing this out made my throat tight and my heart beat even faster. Transitions are never easy, but especially when something good is ending. It’s something hard for kids with autism too, and is referred to as, “transitioning to non-preferred activities.” I don’t know exactly what comes next, and that is a place the world takes me to a lot. A place where this “Control Enthusiast” (who wants to be a freak?!) is not in control of.  Perhaps that means there are lessons out there I am still meant to learn.


Some endings are good. Like when you finish a project that’s been consuming all of your time. When the 9 months is up and it’s time to meet your baby. Or when you finally get your braces off. 

But some endings are so hard. Especially when the middle of that ending was so dang good. If my life had a theme, this weeks would be “endings”. It seems that endings is the theme for so many right now. 

Next week is also our last Special Olympic swim practice and I want to tantrum on the floor like a toddler refusing to go to bed. I can't explain the ordinary magic that became our Sunday afternoons. Parents of kids with Special Needs often say this was a club they never wanted to join. But guess what?  Being a parent in this pocket of life is a club I am so incredibly honored to be a part of. There is so much comfort in being with people who get you and your unique family. People who understand the normalness and the weirdness. People who can offer advice. People who know when to not offer advice. People who don't bat an eye when your now teenage son thinks the main pool area is the perfect place to take off his wet trunks. 

You can't help but fall in love with the swimmers. MY FACE HURTS FROM SMILING as I think about them. They are beautiful and smart and funny and stronger than any person who doesn't have Special Needs. They work so hard to navigate life in a world who doesn't always get them or truly SEE them for all they are. They inspired me weekly and I already feel lost without it. 

Last week there was a young man who was setting on the edge of the pool, hesitant to get in. I bent down to encourage him. "You can do it bud! The water will feel warmer once you are in and moving around." He pointed to me, and then into the water. "You are supposed to get in, not me!" I told him. 

He pointed to me, and then to the water again, a little more definitively. "HA! I can't get in" I told him. He smiled slyly and repeated the gesture a third time. I didn't have it in me to deny him, so I just slid into the water with my clothes on. And it was one of my favorite swim practices ever. My friend Angie snapped this picture of me and Parker after I finished swimming with my new buddy.

If you are going through transition and change, I SEE YOU with my whole heart. It's sad. It's hard. It's scary. If life was a Choose Your Own Adventure (and it actually is) what do we choose next? It’s almost time to turn the page. Change is hard because we know what we are leaving behind, and that makes us sad. We don't know yet what lies ahead, and that makes us scared. But every new beginning is how the awesome middles start, and let's just believe that is where we are headed to now- another awesome middle.

Life is freaking miracle. We got this.

So Much Love,


Friday, May 3, 2024

best buddy

***This post is dedicated to all the students in the Peer Buddy programs in the entire Kirkwood, Missouri School District. I got to see buddying in action yesterday, and it was nothing short of magical.***

Dear Best Buddies,

I haven’t met most of you- but I consider you my best buddy too. I don’t know quite how to thank you, at least with words that match what I feel in my heart.

We don’t always get to choose the details in our life. Especially when we are young. We don’t get to pick how tall we are. We don’t get to pick who our mom and dad is. We don’t get to pick where our house is, and who our relatives are. 

I have two sons, Greyson who is almost 15 and Parker who is 13. They are my whole world, like I bet you are to the people who love you. As soon as I became a parent, I was filled with almost equal amounts of the craziest kind of love, but also fear. The kind of love you can’t imagine until it happens to you. It feels like magic and insanity all at once. And fear- this perfect and amazing human is totally my responsibility. It wasn’t required that I get trained or become certified in parenting- I just decided to have a baby and POOF- I’m a mom. (There’s a lot in between, but we can save that for Health/Wellness class).

I remember holding my first born son, just hours old while we lied in the squeaky, uncomfortable hospital bed. I stared deeply into his stormy eyes and promised him, “I will never let anything bad happen to you.” I knew I would do whatever in the world it took to make that promise come true. 

I also remember, three years later sitting on a hard plastic chair in a florescent lit room where a doctor with the kindest eyes told me, “Your son fits the diagnostic criteria for autism spectrum disorder.” All the oxygen left the room, and I waited until I got to my car until I broke into a million little pieces. I felt like I had failed my son, and broken my promise. Just two years later, my youngest son Parker was also diagnosed. 

I didn’t choose this for my boys, and they didn’t choose it either. No parent would choose something that would make their child’s life harder. No parent would choose something that makes their child excluded from the world in so many ways. 

It took years for me to realize that there were so many gifts buried in our sometimes hard story. (So many!) I also realized that my boys are not broken, and they are certainly not less than people who don’t have autism. They are just different. Letting this different into my life brought back all the colors that had been drained from it, colors I wasn’t even able to see before. In my boys I see magic, and it’s always my hope and prayer that other people see it too.

There was something you did get to choose to do with your time- and that was to become a Best Buddy. I am overjoyed that programs like this exists. I am ecstatic that you signed up for it. You know that we all have things we are good at, and we all have things we struggle with. Since you’ve spent time with kids like mine, then I know you see the magic too.

Yesterday I saw hundreds of students in action, when Kirkwood High School hosted a Special Olympic Track event. It's the world I want to live in- one where students with Special Needs are supported and celebrated. Seeing the buddies in action has left a permanent impression on my soul.

You know that we are all equally deserving of friendship, regardless of how the world perceives us. We can never choose that- how other people look at us. But we can certainly choose how we look at the world. And I just want to tell you, I like the way you look at the world, my new best Buddy. 

Greyson at the Special Olympics track event, surrounded by volunteers (and a super awesome para) And a special Thank you to Sophie. You are amazing. (photo cred: Dr. C)

To all the buddies, I send you endless gratitude.

Greyson and Parker’s Mom