Wednesday, February 21, 2024

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.

-------

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.





Sunday, February 18, 2024

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


Thursday, February 8, 2024

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. 





Thursday, February 1, 2024

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


Friday, January 19, 2024

silver lining and sunshine

January is the perfect month to search for sunshine. Literal and figurative. What has been saving your life during the long Winter months? (Me: effexor, exercise, reading books, and the constant search for silver linings in all things challenging). 

I like sad songs. (Like a lot.) I'm never selected to be the DJ at the party. I usually choose to listen to sad songs instead of happy ones. I like that feeling of nostalgia and regret and hope and longing all swirled into one. So since sad songs make me feel happy, I guess they are not sad songs at all. I feel the same about my first Winter in the midwest after living in California for 24 years. Sometimes the cold can be a welcomed reprise from rainbows and butterflies. 

Parker loves the snow. Watching him experience it is my favorite.

Sometimes the California sun mocked me in the Winter. Get off your couch lazy ass. Open the blinds, carpe the diem, do the things. But now, I can lay around like a blob without regret. Well at least without too much regret. Some mornings when we leave for school now- it is almost dark still at 7:20am. It's comforting and much less judgemental, because dark out says, "You sweet thing you- go home, turn on your heating pad and read a book." I guess sad weather makes me happy too then.

I like a quick fix. Even if it's a grueling one. I'll push up my sleeves and do whatever it takes to make it happen. I'm a dog with a bone. Relentless. There are a lot of quick fix problems in life. (I know quick is relative, so let's assume anywhere from an hour to a week or even a month.) 

Soon after we were married, Michael and I purchased our first home. It was a condo in Hermosa Beach California, and she was such a BEAUT. 




And when I say beaut- I also mean dump. Like DUMP DUMP. Brown SHAG original 30 year carpet in the BATHROOM. ***THE STUFF OF STRANGER PUBE NIGHTMARES.*** The kitchen cabinets were a 90's orangey brown laquered mess. The counter tops were (once) white tiles with (once) white grout. Now this off white/gray mixture. The floor was orange and yellow linoluem. All the closets had huge mirrored doors with brass molding. We also had a view of the Pacific Ocean so I really don't deserve sympathy.

We gutted the entire place. I PERSONALLY tore up the pub rug all by myself, of course while wearing gloves, goggles and a n90 mask. My Type A self made a renovation binder, with contacts, suppliers, budgets, payments made, and wish boards illustrating the aesthetic we wanted. I was high on lists and plans and visions and purchases. I had my own work gloves and wearing them instantly turned me into a certified HGTV fixer upper bad ass (without strength, skills or talent). I had blisters on my hands and hope in my heart and I worked my ass off. Until about 3 weeks had passed and we were still demo'ing and now living there. We had no kitchen to speak of. Aesthetic wish boards were miles away. We needed stuff like drywall and paint and dumpsters and loading and unloading. Zero Glamor.This was not a quick fix, it was a loooooong and messy one. 

I'm a great project starter. Good at ending them too. But the middle is where I struggle. The middle where you plant more than you sow, cry more than you cheer, where the finish line isn't even in sight. Where you have to learn to make one step at a time and focus on the act of doing, instead of the finished project. 

Golly, but isn't that where all important lessons in life lie? Isn't that the marrow of life, and possibly even why we are here? We get to choose to stop or stretch. Pivot or plan. Quit or give it all we got. But sometimes it's hard to stay the course. 

Right now I'm in what I assume will be the middle of project, Move to Missouri. I feel it in my bones. The plan has been executed. The stuff has been moved. The jobs changed (Michael's), schools toured and the boys enrolled. New hair dresser, new workout studio, new Botox giver, new pediatrician, check check check check. 

But now what? I'm in the middle and there's no fast forward button. There's still a lot of checks to find and I'm realizing some will just take much longer than others. I'm seeing how many layers it takes to build a life. Finding YOUR places. Favorite stores and restaurants, driving routes and Starbucks. Finding your daily friends and even your every so often friends.  We carve our own little version of life with the resources and wants we have. Sometimes going to the grocery store knowing I won't run into anyone I know is freeing. But sometimes it's lonely.

I don't have deep roots anywhere. There's been so many times in life that I've started over. First, my Senior year of high school- when days before school started my parents told me they could no longer afford to send me to St. Josephs's Academy. I ended up going to our local public school in Webster Groves. And it gave me the Diversity I craved at my Private, all girls, Catholic School- but it was really scary and hard. Especially when the very next year I started over in College.

Then again when I was 25 years old and moved to Los Angeles (for a boy- when someone moves to Los Angeles it's almost always for a boy or acting). Then when I was 27 years old, newly single and a on my own in LA. All the friends I made were his friends, so I had to start over. Luckily Los Angeles is a transplant mecca- no one is from there, so in some ways it's easier to find people. But the downside is- there are so many people- it's hard to find your people amongst the people. I had so many odd situations on my search for meaningful relationships. Let me tell you about one...

I had a stage 5 clinger. A girl I met in line at The Coffee Bean and Tea Leaf on Barrington Street in beautiful Brentwood California, on my daily stop to get coffee before work in the morning. This gal worked at a famous Spa. One day we got talking and she asked if I wanted her to bring me some products they sold to try out. Ummmmm-yes?! (But also- why didn't I start doing skin care then! I need a time machine to go back and tell young collagened skin me.)

She ended up bringing me a huge bag FILLED with products- thousands of dollars worth. As she handed me the bag, I felt uncomfortable- this was way too much and something about it felt very off. That day she started calling and leaving numerous messages for me at work - despite the fact that although I told her where I worked, I never gave her the phone number. I caught one of the calls live- "I just want to tell you about each product and how you should use it." she told me.

"Well, I'm at work"((( and I'm not really paid to talk about skin care)))  "so can I call you back after work?!"  I didn't call her that night and went to a different coffee shop the next morning. That night she called my home- "Is Chrissy there?" NO NO NO NO I mouthed to my boyfriend who answered the phone. "She's not here right now, can I take a message?" He asked. "I KNOW SHE'S THERE, I SEE HER CAR OUTSIDE OF YOUR APARTMENT BUILDING RIGHT NOW. I NEED TO TALK TO HER." 

The next day, I went back to my Coffee Bean and Tea Leaf with the bag of skin care in hand. I let her know that it was too much for me to accept and said it would be better if she didn't contact me again. Between making new friends, and dating in Los Angeles, I have lots of stories.

Newborn Parker and Bitty Grey

Then again came another start over, when Michael and I moved from Hermosa Beach to Fresno California (about a 4 hour drive and lifetime away from Los Angeles). When we first moved, Greyson was a year old and Parker wasn't even invented yet. In many ways it's easier to find friends when your kids are little and gathering at the neighborhood playground. Fresno was a little harder, because like St. Louis, most people are not transplants and people have known each other most of their lives. I was lucky to end up finding an amazing group of girlfriends there.


Despite the meloncoly nature of this post, we are having fun exploring too.But sometimes being the newby is hard.

And now I'm starting over again. Being back in my hometown- and driving past my old high schools feels nostalgic and a little icky if I'm being honest, and I'm trying to explore why. I didn't love high school, but I didn't hate it either. But suddenly, I feel like I've regressed. I feel like I'm no longer the grown up me with a lifetime of experiences, but instead am an insecure teenager who has no idea what her values are and who she wants to be when she grows up. I have to remind myself- not having friends yet to do stuff with on the weekends does not mean you aren't worthy of friendship. Do you too sometimes have that unwelcomed inside voice asshole who looks for proof that you aren't enough? But being seen, feeling known- it all matters so so much.

Like the theme song to Cheers says:

Sometimes you want to go

Where everybody knows your name

And they're always glad you came

You wanna be where you can see

Our troubles are all the same

You wanna be where everybody knows your name

(PS- If you are 38 or younger you probably have no idea about the show Cheers.)

12 year old Parker and not so Bitty G now.

I remind myself, the middle is when the real stuff is just getting started. And like all hard walks I've walked before- I say out loud- I am open to the lessons this is phase of life is here to teach me. And until then, I'll keep searching for sunshine and silver linings.




Love,


Chrissy

PS- I love love love hearing from you here and on social media. You always make my day.


Wednesday, November 29, 2023

new beginnings

What makes a life meaningful?

Is it what we accomplish? Is it gratitude for what we have? Is it what we learn on the way? Is it who we love, or perhaps how we love? Is it how we spend our time? Is it what we contribute to the world? 

After the Lockdown, our life had gotten smaller while the rest of the world evolved. We didn’t have family near, and holidays were achingly quiet. The boys weren’t in school, they weren’t in sports, we didn’t belong to a church. There were no neighborhood friends to ride bikes with and make memories. My friends kids had grown up into teenagers, and we weren’t part of that regular life anymore. I felt lost, but knew the answers I needed to find we no longer inside myself. I had to look outward.

For three years, we chose to forgo traditional schooling for what I will call "a’la cart education". Replacing traditional brick and motor with outside Behavior Therapy, Speech Therapy, Occupational Therapy and tutoring for Math and English.  Life was simple. The level of knowledge acquisition my boys had was astronomical, confirming what I’ve always known and fought for- my boys can learn. (So much). 

This was the right path, I knew it in my bones, albeit a deeply lonely one, and one I knew needed to be a temporary choice. My kids need to be around other kids.

In June, we booked a visit to tour our local high school. My Bitty G was soon to be a Freshman for the 2023/2024 school year. 

“But he was just born”, I told God. The year on my calendar gently let me know I was wrong. On our tour, we were taken to a single Special Education room. There were no classroom changes for these students beyond PE. And even that was presented like it was a gift they were letting us have. PE with General Education Students! Aren’t you lucky! 

I looked around the classroom. One that Grey would spend almost an entire day in (no transferring to different teachers for different subjects), for four years. Just a few seconds after arriving, my gut made the decision before my head even knew. After this tour, he will never set foot in this classroom again, it said. The Teacher was a kind angel, it had nothing to do with it. But we were pelted in the face with so many other huge red flags. Broken systems, one without foundation or structure or accountability don’t work. Can’t work. Ever. 

Michael and I drove away, the car heavy with silence.

For the year prior, we had been discussing moving to my hometown of St. Louis, Missouri, even though I hadn't lived there for almost 25 years. I had been away, almost as long as I had been there. We couldn’t fight our district for another minute, and we wouldn't waste any more of our boys' time. The tour alone gave me PTSD. Although the boys were learning so much in our "a'la carte home school" setting, I knew they too needed the community and connection that Michael and I also longed for. Who will visit them when I die? The question that doesn’t let me sleep some nights.

What was slowly being examined and weighed and contemplated back and forth- exploded into kinetic energy. The next thing I knew, we purchased a house under construction in Kirkwood Missouri- sight unseen, and baby steps went directly to leaps. 

I compartmentalized this decision in my mind as we carried on with the quick ending of our regular life in Fresno, California. It was so hard knowing we reached a crossroads in a place where we had poured 13 years into. Semisonic said it best, “Closing Time. You don’t have to go home, but you can’t stay here.” 

Michael drove with our three dogs from Central California to Missouri, and the boys and I flew. 


Note the Tshirt in front of the boys: Hell is in your head. So true.



I was hopeful yet terrified. We spent a few weeks in an Air bnb as we waited for our house to be completed and waited for our stuff to arrive. To a girl who thrives off of the smooth groove of routine, life was a foreign country.

As soon as we moved into our house, I felt my heart drop out of my chest. I couldn’t even remember all the big signs that had guided me to this decision My internal voice asked, WTF were you thinking?! over and over again. In the midst of selling our house, buying a house, finding our way around, getting lost (daily), unpacking, transferring prescriptions, teaching Michael to say Schnucks, buying new crap, throwing away old crap, cleaning, registering the boys for school (and touring and paperwork, paperwork, paperwork and meetings), finding a pediatrician to get updated vaccines for Missouri, finding a new place to cut the boys hair, looking for a hair dresser and a dentist, finding a vet (Lucy had an ear infection). I just lost it. I had opened a door into a foggy room of depression and laid in a bed of anxiety. 

I cried because I missed the Palm trees in my front yard in California. I cried because I didn’t recognize the people on the news. I cried because I had to use GPS to go to the grocery store and I would still get lost. I cried because I didn't know where anything was at Target. I cried because I couldn't find Grey's special crackers. I cried because I was terrified about starting over in life.

One day was too much, so I took it hour by hour. I started online therapy (Thank God). Sometimes life is simply a radical acceptance of the things that are hard, and knowing you will be ok despite their presence. I made peace with temporary paper blinds and broken down boxes scattered like snow flakes. I couldn’t do Social Media, because that involves processing all these emotions and changes and I wasn’t anywhere near that neighborhood in my mind. 

A quote from the movie, Life of Pi says, “Survival had to start with me. In my experience, a castaway’s worst mistake is to hope too much and do too little.” So I started to do. I made myself do the things I didn't want to do- but know made me feel like me. Some days that was an exercise class. Some days a shower. I celebrated making it to the store without using Maps.

There were bigger spaces between the tears, and the silver linings started to shine through. 


Halloween felt like it was straight out of movie. Our street was lined with Trick or Treaters. Kids knew Parker from school and called out. "Hi Parker!" When you deprive a child of going to their neighborhood school- that is what you deprive them of. It was one of the reasons I fought SO HARD. I knew that the tiny things added up to what matters most in life. 



Here we are at the annual Kirkwood/ Webster High School Turkey Day Game. 


I can’t believe how remarkably upside down different Special Education is here. It feels like a dream come true. When we toured Grey's school- they walked us through the entire school. I kept waiting for the "Special Education section", somewhere in a dimly lit basement, and braced myself. There is no such place here. Those classrooms are integrated within the school. We saw the huge indoor swimming pool, the cafeteria, the band practicing Sweet Caroline (You could feel it vibrate in your chest. I had tears in my eyes!), the hum of children changing classrooms after the bell- it was magic. This was all available to Greyson as a student. I feel like he's part of the heart of the school, not a periphery Special Education student. It was so incredibly different than our, "Here's the one classroom your son will be delegated to, and let's not bother looking at the rest because it's not for him" school tour.


Parker had the best IEP meeting we’ve ever had- in our life. Not having to fight for a thing is welcomed and foreign. Speaking with people who have knowledge and resources feels like a lottery win. I have so much trauma I’m working out in therapy from our previous experience. But our current situation is healing many of the broken parts. 


Parker's school has chickens. YES CHICKENS. They live and breath inclusion there (the school, not the chickens, but hopefully the chickens do too). I've never experienced anything like it. 

And being with my Family is everything to all of us.


Parker and his cousin Logan.


My Family! (sorry Michael cut you out of the picture Lisa and Joe!)



My Sisters Lisa and Katie 



My Niece Maggie and Nephew Jameson



I still don’t know the full recipe of what makes a life meaningful, but some days it feels like I'm closer to knowing. I think it’s a combination of many things in different seasons of our life. It depends on the person and sometimes even the day. I think part of it is forgoing temporary comfort for something bigger than you. Something that might just turn out to be magical.


Our new favorite park

Monday, May 8, 2023

what really matters

Today we had a triennial evaluation for Grey. Parker's is tomorrow. 

I want to cry or throw up or run until the road doesn’t exist. Writing seems a little more healing and productive than any of those things, (and I already cried as soon as I got in my car.) 

For those not in the know, a Triennial Review involves the complete reevaluation of a child classified with a disability every 3 years in order to determine whether or not the conditions upon which the original classification was determined are still evident. It’s a pretty hard core process and takes a lot of work for students and the passionate assessors that work with our kids. A triennial also helps determine the content of a student’s IEP- Individualized Education Program. Spoiler alert: Grey’s still super autistic. He is perfectly and wonderfully made. He reminds me that God doesn’t make mistakes. 

I always say I don’t give a rat’s ass about the test scores and evaluations for the boys. And I don’t, except for when I do- usually in conjunction with reading and discussing the reports. Then I do so big. To see words like severe, lower extreme, below average when all he does is work is gutting. 

The older kids get and the more profound their disability, the less options are available to them in school and life. We are limited by what already exists, and what most likely has existed in the exact same way for the past 100 years. 
My brain spins after these meetings. I think of the groups of young adults with Disabilities I see wandering the aisles at Target and it feels me with profound sadness. And then flooded with guilt for feeling so sad. Is that the only available options for these children in Special Education who grow into adults who live on the world’s periphery? Who am I to judge- I love roaming the aisles at Target. So why do these encounters seem to pause my soul for a moment? Do they have money to spend? I wonder. Are they happy? Do they feel that emptiness I sometimes experience when I feel disconnected from the world?

We are in the figuring out stages for the boys next steps. Next year Grey will be eligible for high school. A huge transition for any student and their family. But for us feels like running uphill while carrying weights. I turn my brain inside out trying to figure out the perfect plan and necessary accommodations when most things are completely out of my control. I’m trying to learn the new acronyms and rules. After almost 14 years of parenting, sometimes I still feel like a rookie.

In a day or so, the sting from words on reports and ideal placements will wear off and I will remember my why. My boys have shown me that you don’t give up when it’s hard. You give up when the task is completed. The pain from these experiences always transforms me after the sting wears off. 

My life’s work: Making sure my boys are understood and supported in a way that helps them thrive. It’s never easy and always worth it. 


And as I sit and write I remember, if we are only trying to catch up to the assessments and evaluations, we will only be left out of breath and feeling broken. 

My boys and kids like them aren’t broken. Our evaluations don’t know how to access the information their unique brain holds. We don’t know the language or the rules of Spectrumville, so my boys must survive in the land of the typical. Can you imagine how hard that would be to constantly navigate the unfamiliar? Translating from a foreign language to the best of your ability? 

I looked over at Parker today and just soaked him in. His tiny soft ears. The tuft of hair that always sticks up in the back of his head, glowing gold in the sunlight. I was as just in awe of him as I was when he was a newborn. 

(Big Exhale). No one is a sum of their deficits. But instead we are the sum of what we overcome. We are bright and brilliant spiritual beings. We aren’t what knocks us down- we are if and how we choose to get back up. We are transformed by the hard parts. We aren’t how the world looks at us, we are how we look at the world. 




My boys remind me to look at the world with curiosity and awe. Greyson and Parker remind me to celebrate the differences instead of mourning over the deficits. Until then, I’ll write my own assessment.

Greyson Michael Kelly

Age 13 and 11 months

Eyes so blue they make the sea jealous. Great hair (seriously, above average). Effortlessly cool. Creative as heck. Resilient as hell. Detail oriented. Calming to be around. Skillfully observant. As resourceful as an engineer. Visually excels. Brilliant. Incredible memory. And no matter how hard, how complicated, how painful life can feel- he never ever gives up. (Resilience- Upper Extreme).