thoughts from the high school parking lot

18 years is SUCH a long time.

Imagine having a cold for 18 years. Or how about an itch?! (That would be awful.) But for some crazy reason, when it comes to raising your own humans, it's really no time at all. People often say, "Time is a thief", but I mostly disagree. Time is a gift -and if you are here reading this now, you have this gift. We are alive. It's a good thing to remember to be grateful for.

When I was in high school, I thought I was so old. (Chances are I knew everything too.) When the boys were little, I thought kids in high school were SO OLD. And now that I have a son in high school and have spent time on campus, suddenly I look at the high school kids and just see babies. Sure, they are at the top range of being a kid- but they are still just a kid. They are not young adults, they are old children. And still practicing kid things in a world that is so adult- with social media, and kids wearing lululemon and getting highlights and having a skincare regime at 10. 

I often comment that in so many ways, my boys are just like other kids their own age. They want to be happy, they want to spend time doing what they like, they want to have friends and be liked. But there is also a grand canyon sized difference between them and kids who don't have special needs- aka "Super Powers". I don't have an idea of what our life will look like when they are done with high school- and to be honest, I'm just trying to deal with this week. One week at a time. I can't think that far in advance. But I do know that I have an intense ache in my heart for the parents of Seniors this year, who are getting ready to say goodbye to the tiny little babies of their own as they leave for college. I can't relate to that specific experience, but I can relate to a heart in pain. I'm thinking of you. 

When I was in high school, I didn't have a car until my Junior year. And let me tell you, she was a BEAUTY. And by beauty, I mean BEAST. The car was my grandmother's army green 1973 maverick. It was older than I was. The sides were rusting, so they were "fixed" with silver duct tape. She had an AM/FM radio, a bucket seat up front, manual roll down windows, and a coil cigarette lighter and ash tray. 

"The Mave" looked just like this. 

Sometimes the horn would sound all on its own- continuously. Hoooooooooonnnnnnkkkkkkkk!!!! Can you IMAGINE my humiliation- desperately trying NOT to be noticed in this BEAST while being as loud as the krakatoa eruption while driving down main street? (I don't even know what that is- but I asked google- "What is the loudest sound in the world? and she said, the krakatoa eruption.) People staring at me- pissed off- wondering why I was lying on my horn. 

When I went to the all girls, private high school and had to drive the beast, I would go 30 minutes before school started so I could pull all the way into the back-back where the nuns parked so I could go unnoticed. All the nuns had a hoopty so it blended right in! Don't mind me, just a woman of God here! Too godly to care about material possessions and cars! Now this car was not just ugly, she was incredibly unsafe too. I wouldn't even let my boys ride as a passenger in this car now. The battery died constantly, and the seat belts didn't always work. 

I will tell you, not getting a lot growing up definitely taught me a lot about character. It taught me about what I valued, and what was important to me. I had to work for everything. I didn't instantly absorb these lessons- in fact, I would cry and fight with my parents over this car. It took years for the lessons to soak in. 

My Dad taught me that money can not make a person- and not having money did not break a person. Money will just bring out what is already there. If you are kind and generous, you will be a rich, kind and generous person. And if you are an asshole- you will just be a rich asshole. 

I barely see any hoopty cars in the high school parking lot. In fact, a lot of the kid cars are nicer than the teachers. The world has changed a lot, but the lessons we need to learn remain the same.

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Both boys are eligible for school provided transportation as a provision of their Special Education Program. I've always declined- instead taking and picking up myself. To be honest, it's some of my favorite parts of my day. I love to be there when Grey and his classmates get out. I can't explain the energy and light these kids emit. I can be in an awful mood, and then interact with them, and my whole day turns around. 

Junior Year

I was so caught up in wanting to say and wear and be the right thing in high school. But Grey just isn't desperate to fit in on a superficial level. He is just so fully himself, in a way so deep it's enviable. I see this in many of Grey's classmates.They hand out smiles and hellos freely. They walk into school with a little hop in their step. I'm smiling ear to ear as I write this. I wish you could experience it once if you haven't. Today I was overwhelmed with gratitude for this experience after an interaction with one of my favorite students who always greets me with the hugest smile.

I don't even think high school me would have been open to this. There weren't kids with Special Needs at my private high school. My Senior year I went to public school. There had to have been kids with Special Needs there- but I don't remember ever encountering them. I wonder how I would have reacted. Would I have said hello?  Would I have felt sorry for them? Would I have averted my eyes as to make sure no one thought I was staring? 

I don't know, but I do know- I missed out. I'm glad that I now know. It's so easy to get bogged down by day to day life, that we forget about the gift that is time. I'm glad that at least for today- I remembered.

train station

I do my regular Trader Joe's run on Sunday mornings. If I go around 9am, it's usually pretty quiet. I prefer to avoid crowds when I can. As I rolled my stocked grocerycart up to the check out line, I tensed for the usual, "So, what do you have going on the rest of today?" conversation that ensues. Small talk is my kriptonite. I tend to give answers such as, "Fine, how are you?" (Oh wait- they asked WHAT I was doing. Not HOW! Idiot!) 

Once I went the morning of Memorial or maybe it was Labor Day. They asked what I was doing to celebrate later. We didn't have plans that day, and I felt stupid saying that. Like a loser.  So then I randomly say that we are attending a BBQ at a friends. The next thing I know, I am answering random questions about my made up BBQ and friends for the remainder of my time in line. 

Up until I was in my late 30's, I always thought I was an extrovert. I love people and their stories. I talk too loud, and I frequently overshare. I don't mind speaking to a room of hundreds of people. Sometimes I love going out. But I didn't understand why I was such a broken introvert. As far as social gatherings go, I prefer a small group of people versus a roomful. I hate small talk. I panic if the doorbell rings and I'm supposed to answer it. I have to recharge alone after being around a lot of people. 

According to verywell.com, Introversion is a personality trait characterized by a focus on internal feelings rather than on external sources of stimulation. Introverts also typically get more energy and recharge by spending more time alone than with others. That being said, introverts and extroverts are often viewed in terms of two extreme opposites, but the truth is that most people land somewhere in the middle.

Ah ha. I like that descriptor. We can be both. (Most personality tests show I am).We can be anything, even though the world finds it much more convenient to put people into one single basket. 

So today, when the Trader Joe's Employee asked, "How are you doing." I responded with, "Great! I love coming early when it's quiet, and all the good people are at Church." The man started belly laughing, and then I thought- oh, crap. I just inadvertently called him 'bad people' because like me- he isn't at church. But unlike me- he is working and I just chose to come here now. "You aren't bad people though. You have to work. So you can guess what category I am in." I replied. 

The lady bagging my groceries said, "We were actually singing gospel songs this morning, so that counts for something- right?" As the man ringing up my groceries started to quietly sing:

Swing low, sweet chariot

Coming for to carry me home

Swing low, sweet chariot

Coming for to carry he home 

I quickly pulled up the song on my phone and turned my phone to the loudest setting as I lifted it in the air. The three of us clapped and stomped along, as I slowly waved my phone back and forth. My face hurt from smiling. 

Apparently I can't do, "What do you have going on later today," but I can do a full blast spiritual hymn in communion with others in the middle of a check out line. There's just no box for that, and I am ok with it. 

(Here's a link for a free personality test. I like this one because it gives multiple personality aspects, and what percent of each you are. I've noticed mine has changed slightly the older I've gotten.)

We never are just one thing. Screw the boxes. 

This week I took my 100th Barre class in St. Louis, commemorated with new socks, and plenty of fanfare. I was part proud and part humbled. Before we left California, I took my final 1373rd Barre class. I thought- this kind of sucks to be starting over.  

As I let my mind get lost in the exercise I realized- When we have experience- we are never really starting over. We are starting from where we finished, and there's a huge difference. Experience counts for something no matter the skill, the job, the life event. We are not starting from scratch, unless of course we are. But even then, I still believe with age and experience comes wisdom. Don't knock the wisdom. 

Since we've arrived in Kirkwood, Grey has been asking to go on a train ride. Seriously- it's daily. He actually doesn't ask, he just tells us, "Let's go to Kirkwood Train Station." Finally on Friday, all his wild dreams came true.

This train station is straight out of a Hallmark Movie. It's been here for 131 years, with a little sprucing up in between and it still has all of it's vintage charm. 

According to Kirkwood City Records, "In 2002, Amtrak was on the verge of closing the Train Station as part of cost-cutting efforts. Not wanting to lose this vibrant and essential downtown icon and meeting place, the City bought the building. It continues to serve as an Amtrak station and Visitors' Center, staffed by a group of dedicated and enthusiastic volunteers." 

I love a good story of community and perseverance.  

As soon as we got there, Parker spotted a darling gentleman with silver hair waiting for his train. "That's my new grandpa," he announced. "What's your name?" he asks his new Grandpa. Ted comes from Illinois once a year to visit his high school girlfriend. It turns out, Ted went to the same high school as my Mom, and they were just a couple of years apart. Small small world. Parker doesn't have any living Grandpas and it makes me so happy (and a little embarrassed) and sad when he frequently appoints one in public.

The excitement of waiting for the train was almost as good as the ride itself. 

For the first time in a month, the snow started pouring down. It was absolutely magical. 

We took a twenty minute trip to Downtown St. Louis and then right back. It was a perfect adventure. 

We are all writing our own story, so let's make it a good one. This week we have big plans, you and me. We will:

Focus on what I can, not what I can not.

Wake up and say, "I choose hope over fear" every damn day. I will remind myself when I forget. 

I will accept myself as enough  the awesome human I was created to be. Enough is not enough to describe you and me. We are more than enough in the best possible way.

I will look for silver linings amongst the hard things.

So much love,

Chrissy

the power of why and special education

Who do you want to be in life, my friend? I was ruminating over this very thought early morning driving home after a workout. My mind is always clearest then. 

The truth is, I am fearful of living an uninspired life. But it is also incredibly easy for me to forget what matters most to me. I live in my head. Like all.the.time. Underlying anxiety helps me obsess over things that don’t matter one bit to me- that in the moment, I think matters so (so) much. There is so much noise out there, AND there is so much noise in my head. Sometimes I write for the quiet.

Popular author, Simon Sinek, says great leaders and organizations start with "why" they do what they do, rather than simply focusing on "what" they do or "how" they do it.  He defines your why as being your purpose, cause, or belief. It explains why your business exists and why your customers should care. It should guide every decision you make, and if your actions are aligned with it, build trust with the kinds of customers that align with it. 

Understanding your why isn't just helpful for business- it's helpful for humans like you and me who want to live an inspired life. So here I think about why I wake up every day, why I do what I do, and why I believe what I believe in this noisy world.

• I want to be kind. I don’t mean that in a virtue signaling kind of way. (Virture signaling: a derogatory term- the public expression of opinions or sentiments intended to demonstrate one's good character or social conscience the moral correctness of one's position on a particular issue.) I can be kind when it’s convenient, but I want to be kind even when it’s inconvenient. I know how dang warm and fuzzy kindness feels and I want to give others that same feeling. Kindness and connections with others is part of the very marrow of life. That’s why I love writing- it helps you and I connect.

• I don’t want to be so hurried that I don’t see others. Truly, deeply SEE others who are doing great small things with their time and talent and life. People who serve me or my boys. People who inspire me. I want to SEE the people who may go unnoticed or under-appreciated. I’m so inspired by the stories others are quietly living. Not the rock star or the politician but the every day human. 

• I want to be self aware in a way that is empowering, not paralyzing. (self aware is NOT self-critical). According to Understood.com, “Self-awareness is the ability to tune in to your own feelings, thoughts, and actions.When people are self-aware, they understand their strengths and challenges and know what helps them thrive.”A lack of self awareness can hurt those around us. If you grew up with parents who lacked it- you understand. When we refuse to examine who we are, how we are, and most importantly why we are the way we are- we can’t grow. 

• I want to be curious. Open to people and opinions that are different from mine. I want to continue to learn about things that make me feel alive. I want to try new hobbies and learn new skills. I want to write and share with me and with you.

The boys are about four months into their school year in St. Louis Missouri, and the routine finally feels like our new normal. In so many ways my boys are just a normal Middle and High Schooler, they want to do well in school, they want to have friends, they want to spend their time doing things that matter to them. But in many ways they are so different too, and what they need and who they are is unique.

The amount of time and effort I’ve put into advocating for the boys, and getting them the outside resources they need to make up for what they weren’t getting in school was a full time job, and now I don’t quite know where to funnel that time and passion. 

People ask- "How is Special Education so different in Missouri versus California?" I’ll speak in generalities- because it’s a much bigger concept than my boys needs. Keep in mind we are one family and this is our experience, although I hear from many who unfortunately had the same experience we did.

The difference I’ve seen can’t be attributed to a lack of time, money or resources. Our old District had so much money in reserves, and tax payers always approved the new Bonds that were proposed, often totaling hundreds of millions of dollars. I attended Board Meetings, met with Board Members, and constantly researched to understand how it all worked.

I don’t want to bog you down with logistics- but they matter big picture, so I’ll be brief. Our previous District was 90% minority and 65% low income. As an educated, stay at home mom who speaks English- It was a luxury to be able to advocate. Statistically- my children are at an advantage because of this, and that is extremely unfair to all the other students. Silence in the face of wrong doing keeps broken things broken. When I went to IEP meetings, I advocated for my boys, but when I was at Board Meetings or interviewed for Media, I advocated for system changes for all.

I can’t deny strong standard operating procedures and steadfast systems in place is imperative. There are so many moving pieces required in this machine called Special Education. Our previous District had over 70,000 students. (Our current District- which is its own “Special Education District” not a local neighborhood District is around 20,000). But at the end of the day- everyone we interact with now- From Case Managers, to General Education Teachers, to Principals, to PE Teachers seem to remember their own WHY.

1. Here my boys are presumed capable of learning and deserving of modifications/accommodations their disability requires. They are not treated like a burden or hindrance from General Education students getting additional bells and whistles. Here's an imaginary example of how that feels in real life. 

Imagine Greyson is allergic to the color green, and let's say this can be a common effect of autism. It is recommended that he wear special glasses to counteract the color green, and when he does this at home- it's successful. I would gather information on how his Green Allergy affects his learning and what he needs because of it. I would bring in the initial evaluation or assessment done by a Physician or Psychologist. I would gather data and Guidelines from reputable sources that all Educators or Therapists follow. Then imagine I go to an IEP meeting to present this information and be gaslit with things like..

He doesn't look allergic to green to me. 

He might be allergic, but that doesn't affect him in school. 

We can't keep track to make sure he wears the special glasses. 

Our First IEP meeting in Missouri went like this...Me (with my big ass binder of paperwork and guidelines and hopes and dreams). Educator- We noticed Greyson is allergic to green. This is very common with autistics, so we have been taking data on it to confirm. If it is alright with you, we would like to offer him these special glasses to help him. We would also like for our OT to evaluate him because there are other accommodations we can provide that have helped other Green Allergic Kids thrive. Is that ok with you? Is there anything you are doing at home for this that we can make sure to apply here?

We didn't have to fight for a thing. They truly see my boys and things are offered before we even have to ask. 

2. My children are treated like they are an integral part of the School they attend. Not an inconvenience or an afterthought.

When Parker was in first grade, I asked about that night’s Holiday school program I saw on the newsletter. I was told his class did not participate. I spoke to some other Special Education Parents at the school who shared they had never been included to the School Holiday Programs, or the All School Awards that were given out quarterly. They were categorically denied access based on their classroom placement, not based on their abilities. They were also not included in General Education Field trips, General Education PE or art or library time or music. There are no one size fits all inclusion plan for any student- but denial regardless of abilities is not ok. There are National Laws that protect students to these things don’t happen- but there is no internal policing- no one calling out institutions if they are not following the law. That’s why Parent involvement is important. I would speak out, and as you can imagine, this did not win me any popularity contests. I received a Cease and Desist for speaking out, and I was harassed on Facebook by Teachers at school. One Teacher was put on administrative leave due to the messages she sent. Speaking up came at a cost, but in my opinion, silence was much more costly to my boys' futures and my own soul.

HERE is an article that was written on this incident.

3. The people they are surrounded with are well versed with their disability, and the modifications, accommodations, therapy, teaching strategies, and support they need to access the curriculum. They are empowered with Professional Development in the areas required to effectively do their job. It doesn’t matter how much money your District has if they do not value Special Education. I would sit through Board Meetings discussing multi-million dollar swimming pools and Gym Floors, yet our para educators in Special Education made less per hour than our local fast food places. Occupational Therapists and Speech Therapists were given IMPOSSIBLE case loads, and they were not allowed to tell parents if a student was not getting their required minutes of therapy noted on their Individualized Education Plan- a legal document detailing the child's educational needs. When I started requesting service logs - I would see that my son was shorted hours of therapy alloted to him in his IEP. Certain therapies for autistic kids is like insulin to a diabetic.

I can't tell you how many times I had to FIGHT for simple things like a visual schedule for my boys- a universally accepted Evidence Based Practice for Autism. It felt like bizarre-o world. There were so many IEP meetings where I just went to my car and cried when it was over.

There were no Experts in Behavior (Board Certified Behavior Analysts) supporting the District. There were numerous Teacher, Therapists, and Classroom assistants vacancies leaving shortages in the classroom. A Special Education Classroom can not run effectively without enough staff. Some things that were said and done in autism classrooms were so completely wrong and backwards, sometimes downright abusive- it was clear that there was a significant deficit in understanding autism. It's terrifying to drop your child off in an environment that doesn't understand them.

4. My boys and kids like them are not socially isolated. Special Education students are given a General Education homeroom. Anything a 6th grader does at school- Parker is included in. And not just Parker- all students with disabilities if it is appropriate for them. This means electives like Art or Music, and Field Trips. The magic sauce that makes school a wonderful place to be.

Parker being included in 6th Grade Camp in his first few weeks of school. He had the time of his life. OF HIS LIFE!!!!

My boys aren't placed in out of the way classrooms isolated from the General Education and expected to stay there all day.  

Here is an excerpt to a statement I made to our previous School Board in 2018: 

"My son's physical classroom is an old portable unit, approximately 100 yards away from the school. There are no general education students that attend school all day in these portables.The segregation of children with special needs is a violation of IDEA- The Individuals with disabilities education act, a federal law that ensures equal treatment for all students with disabilities. 

Greyson's classroom is cramped and lacks much natural light. The floor is soft in some areas and unstable. When it rains, the students with autism cannot travel to the cafeteria for lunch. The actual school is approximately a football field away, which is too far when the walkway is filled with puddles. On these days, the students remain in the portable units all day. Having special needs is already an isolating condition, and having autism makes socializing difficult for these students. These children do not need physical segregation added to their struggle. While these children have spent six hours a day in a portable classroom, three multi million dollar swimming pools have been built by this school district. I am not asking for extras. I'm asking for basic facilities that serve the most fundamental needs of these children. "

HERE is an article written about this inequity that I am quoted in.

The first time I spoke up at a Board Meeting. I was scared to death. It's ok to be scared, as long as you do it anyway. You get the courage after. 

Once I received a message on Facebook from a sweet Momma of a General Education student in Greyson's grade. Grey did inclusion 30 minutes a day, a few times a week. “My son was in Mrs. (awesome teacher's name) class when Greyson would come in. He would see you guys in the parking lot in the mornings and tell me all about him. I asked if he ever played or talked to Greyson. He said no, because “He has autism and they keep him separate.” It made me sad because my son would have benefited from a relationship with Greyson as well.”

These honest words crushed me and also helped fuel my fight. Now my sons' classrooms are integrated in the heart of the school. 

I share all of this to shine a light on our experiences, and experiences like this all over the world. I have nothing but empathy for the Educators and Therapists who are expected to deliver the impossible without the time or resources they need for their Special Education students. We also met some insanely incredible Teachers in this broken system whom we will love for all our life. I believe people originally go into these fields to help children.These professionals are not to blame for broken systems, and I understand how some institutions can beat the why out of someone. 

Never underestimate the power of speaking up. Even if you are the only one. At the end of the day I realize, if we don't have our own WHY, we have nothing, and those hard years of advocacy taught me so much about my own. 

The Search for est

I want to live a good story, and sometimes good stories are hard to live. Actually, there is no such thing as a great story that is also easy. I remind myself of that when life feels like too much. 

I love the book, A Million Miles in a Thousand Years. I love to read, but I think this is the only book I've read multiple times and still think about.
It's a true story about a man named Donald Miller, who wrote a best-selling memoir. Some important folks wanted to make a movie of his memoir, so Miller helped to write the screen play. But to make his life story more interesting and a better movie- they had to add more heart, more risk, more loss, more love, and it made Donald realize just how easy it is to write a good story, and if we know the elements that go into writing a good story...

Why don’t we just live that good story in the first place?
And so in order to write a better story-he started to actually live a better story. 

What if we looked at our own life with writer’s eyes? Would we take more risks? Would we simply cherish what we already have more? What would we do differently?

Growing up I desperately wanted to be the est. Unfortunately, I wasn’t est at anything. Not the smartest, not the fastest. Not the sportiest. Not the tallest or cutest or prettiest. I was ok at a lot of things but not great at anything. 

I mean bless my awkward, 13 year old, mullet sporting, plastic earring wearing, turquoise turtleneck heart.

I tied my worth to this lack of est. it was a long string so it followed me everywhere through life. I felt like I needed to be est to be loved. More importantly, I felt like I needed to be est to love myself. 

Then I was blessed to become a mom. And unfortunately, I transfered my love for est on them. I already knew they were the CUTEST.

Tell me I'm wrong- SEE! The CUTEST!

But I hoped they would also be the kindest. The fastest. The smartest! I thought I wanted this for them, but no one really needs to be the est to be loved and adored and appreciated. To matter. To impact the world. To be happy. I wanted their est for me. 

Then autism came along, and attainment of those est began to fall away. In watching my boys BE themselves without apology or expectations, I learned how to become myself. I’ve discovered I am the Chrissy’est person I’ve ever met. And the unique combination each one of us is- is what makes us remarkable. Incredible. 

My boys are so incredibly special, in ways hard to articulate. They are unicorns in a world of horses. They look similar, but just shouldn't be compared. They remind me that it's good to be different, while somehow also showing me- we are all more the same than we realize. They help me live a hard, good life. Sometimes I need a nudge to continue to write a better one.

As long as we are growing in life, (and I hope I always am), there will always be someone better than me. Better writers, better moms, better cooks, better humans. But everyone from famous actors, to your favorite authors to rock stars have suffered from imposter syndrome. There is always going to be someone more successful, more talented, more together, more beloved. But if we focus on someone else’s blessings, we can’t see our own. What a tragedy. 

I realize, my boys worth can’t be measured in est. What a stupid finish line to shoot for, and one that sucks all the joy out of their own unique soul and vibration. Their life has taught me- You  don’t need to be est to be loved, and to be happy, to feel purpose. You just need to be you. It doesn’t matter if we’re the best…it matters if we are OUR best. 

And you are the very best you. I promise.

It can feel hard- to learn to cherish your own shiny self, exactly the way you are. But I’m learning from some seriously amazing teachers and experiences- and I’m hopeful you are open to this lesson too.

My Teachers