From Inclusion to Life

Sometimes it feels like we are looking through a glass partition at life. My palms are placed flat on either side of my face as I gaze in longingly, wondering what it would feel like to be on the other side. The side where people don't even realize they are included- because it's all they've ever known.

It takes effort to include. In my experience, the times my boys or I have been excluded wasn't because someone was purposely being mean, it's just that they forgot about us, or just didn't think to include us.  And I can tell you with tears in my eyes and the deepest ache in my heart, it hurts all the same. 

I'm the type of person who, when I see something I truly need, I will do whatever it takes to make it happen. I don't take no for an answer. If it doesn't exist I'll do what I can to make it. Especially when it comes to my boys. 

But Inclusion... it's something that keeps me awake at night. It's something we've had to fight for in almost every aspect of living, this is not a topic that is limited to Education. We fight for a place at the proverbial table-to be included. At times it's been mildly frustrating, and times downright gutting. You have to be polite when you do it- so the very group you want to include might be more willing to do so in the future, even if your heart has been broken over it 100 times before. Can we come too? I promise! We don't take up much room! We won't get in the way! It makes me sad, to have to advocate for what should be every human's right- to be included. To be welcomed. To been seen as adding value simply because we exist. 

It takes a Village to raise a child, they say, but sometimes that Village does not exist for families like mine. I don't think we should be relegated to a Special Needs only Village- which is what the world so often tries to do. Can't you just hang out with your own kind? Won't you be more comfortable there? (Which really means- we won't make you uncomfortable.) I'm so glad Special Needs Sports Team and Proms and Classes and Clubs and Special Movies with Sensory screenings exist- they fill in a gap of participation and belonging that many people with Disabilities need and love. 

But that's not what my boys need and want. They wan't to participate with EVERYONE while at the same time- being their perfectly atypical selves. They want to play with friends and to be invited over to hang out. They want to participate in activities that other kids their same age participate in. But they aren't, or they aren't allowed to in some cases. It's a vital part of childhood for others, it was for me- but for them- it simply does not exist. The playdates and sleep overs, the clubs, the bike rides, having a best friend they can hang with... It builds up in my Momma heart. It's lonely. It's part of why we are exploring moving to St. Louis- with the hopes that there will be a place for my whole family to be included. Schools and a Catholic Church and neighborhoods and playdates and Family BBQ's and more. 

My friend Wendy has a beautiful Podcast called, What I Meant To Say. She shares, "I believe that the greatest gift we can give to the next generation is our own self-awareness. The goal of this podcast is to connect us through the visions, stories, and life lessons of people rising in sports, business & life and uncover the optimism that is sometimes front and center, and other times under the surface." Wendy has the truest perspective for the World, and an optimistic vision for the Future. No one makes me feel more myself, and I don't think anyone makes me feel as seen. I love the way she sees my boys so dang much, a view always centered around strengths and gifts. I am so grateful for her friendship. 

In an Episode of What I Meant to Say launching Wednesday, August 24th, fueled by the beginning of the 2022/2023 School Year, Wendy and I have a deep conversation about Inclusion. There's no better time than to build an inclusive world than at the beginning of something new. 

Speaking of Inclusion, this week the family and I are trying a new adventure. We are fostering Momma Laney, and her 4 week old puppy. 

We are on Day 3, and each day it's gotten a little easier. It's hard work, and not for the people who like a clean and chaos free house. Lucy and Oliver are adjusting really well. The boys love it. It's been hard but beautiful. They are reminding me that life isn't fair, that we don't all get the very basics of what we deserve- like love and a home to live in. But Momma and Babe are so very perfect and worthy of love. Just because we may not be included, doesn't mean we aren't worthy of it. I wish Laney could talk and tell me her story, like there were other pups in her litter. (I cry thinking about it all.) They both still have the ability to dole out unlimited tail wags and kisses, despite their hard knock circumstances. I don't know why we get the stories we are given. Especially the sad ones. But I do know that we are all given the ability to write our own happy ending.

Every little thing is alright

Big Breaths

In ……. Whoosh

Out… Ahhhhhhh

You can do it little buddy. You got this.

I have a confession- In this story I am 'little buddy'. And anxiety is coursing through my veins, it’s dancing in my stomach, it’s stomping on my chest. Freaking anxiety. My wingman. My liar asshole wingman (you can’t do this, this is too hard. You are doing it wrong. Danger up ahead) Non sequitur time. (I am superb at those. And bonus points to those of you who use  non sequitur this week in a sentence).

non se·qui·tur

/ˌnän ˈsekwədər/ noun

1. a conclusion or statement that does not logically follow from the previous argument or statement.

Michael and I are getting extra life insurance on each other. Don’t worry- it was my idea. Otherwise that would absolutely mean he was just about to murder me according to every single Dateline I’ve ever watched. This process is a real pain in the ass and involves all the things I HATE. Talking on the phone. Talking on the phone to a STRANGER. Talking to a stranger on the phone about private MEDICAL things. Nothing makes me feel older and more pathetic than listing all my ailments- ESPECIALLY as someone who works so dang hard to exercise and eat healthy and take more supplements than I can count on one hand.

Familial high cholesterol 

Hashimotos thyroidistis 

Degenerative disk disease

Anxiety/depression

5 yes FIVE herniated disks…. I’m going to stop now. I’m depressed. 

Then I had to fill out things, and fill out things to get access to my medical records. FINALLY we got a phone call that my account was approved with some changes made to our initial request- a decrease in coverage and increase in cost that they would discuss with me on a phone call.  After playing phone tag for a couple of days, I finally connect with the super nice but for sure ex radio DJ on the phone.

Christina Kelly! I’d just like to go over some information (all said in a booming game show announcer voice). We DID approve you, but not at the original amount because of the following conditions:

• You are 5 ft 2 inches and weigh 170 lbs.
• You are being treated for anxiety

My eyes go wide. I feel anxious, even a little ashamed, like I screwed up at something. Ummm…..I don’t weigh 170. 170? It says 170? (I feel like he thinks I’m lying and I need to talk extra to prove I’m not lying.) I can send you a picture. (Stop talking Chrissy).

"I don’t weigh that. I weigh 115. Maaaaybe 117 after a long weekend. Maybe someone confused 117 with 170?" I say.

"I’ll look into that with the department who put your file together and we can get to the bottom of this. Is it true that you are being treated for anxiety?"

"Well… Yes, I do have anxiety and I’m taking medication for it. I don’t see anyone about it though- I should (stop talking Chrissy). So- does that count as “being treated?” (stop talking Chrissy).

Turns out, it does. Which is fine. I didn’t want to ask the guy any more questions, I just wanted to be off the phone. I figured I would ask any questions I hadn’t yet processed to my friend Google in the privacy of my own non-judgemental computer. 

Google said, 
Because anxiety can have a major impact on both your physical and mental health, life insurers typically treat anxiety as a very serious disease, similar to heart disease or other physical ailments that may shorten your lifespan. As a result, having anxiety can make it more difficult to get approved for life insurance coverage — and can also affect what you’d pay for an insurance policy.

WHAT?! My anxiety got worse reading about it. HAHAHA! Why do they even have to include that info? Why do I feel like I did something wrong by having anxiety?! WHY IS ANXIETY COSTING ME MONEY? I DIDN’T DO ANYTHING WRONG. YES YOU DID STOP BEING ANXIOUS. This is all out of my control, so I just keep breathing and stop thinking about it. (Anxiety is HARD WORK).

Anywho- flash forward to today. Sunday August 14, 2022. Tomorrow starts a new School Year Schedule change. (We had just, ALMOST figured out our Summer schedule). I used to blame my TOTAL schedule change anxiety on Grey. I just get anxious because HE is anxious. Every autistic kid is different but for Grey it absolutely means struggles with transition and change. Although he does get super duper anxious- I have my very own pot of anxious brewing on the stove at most times, but schedule change brings it from the back to the front burner. I have to work to separate his fear from mine.

WHY so anxious? I ask myself. I want to do it perfectly. I want to support and remember things and times. I want to make each boy a visual schedule which is VITAL for their life when we have any big schedule change. As I type out my specific worries/concerns they look ridiculous to take up space in my brain. That’s what anxiety does, I remember. Lies and tells me every little thing- is NOT going to be alright. 

But it is-right my friend? It is. Every little thing is.

Today the most perfect words found me at the most perfect time. It’s a Ted Talk by Caroline Myss- Choices that change your Life. This 25 minute ted talk is Liquid Golden sunshine. You must listen.

She shares, "I want to emphasize the power of choice. And perhaps there was a time when we wouldn’t even talk about it, but we have to talk about it today.

Because choice is a fundamental power of the human experience. We need to put choice as an authority, as a power that is so huge, that if I ran the world… I would make studying the power of choice part of every e school curriculum .That everyone should learn, that the power of the choices you make have infinite consequences. From the littlest choice to something that is great big, huge- and that – here’s the paradox, you have no idea what a little choice is, or a big choice. What we are used to doing, is believing that a big choice is an obvious one: buying a house, getting married, getting a divorce. In fact, those are your small choices. The choices that actually matter when it comes to your health, when it comes to healing, when it comes to positioning yourself, empowering yourself, are the tiny ones that-or the choices I should say, that you think have the least power, that you make in the privacy of your own company, that perhaps you think are the most insignificant, I have found repeatedly, repeatedly, are the most powerful choices of your life, the most powerful. That have the most powerful impact on your biology, on your soul, on your sense of who you are, on your well being on your whole life map

You can watch the whole talk HERE.

Myss talks about looking to the future to make choices, because the past us no longer exists. “Be in the newness. Not afraid of it. Be in that newness. Be there.”

The switch flipped in my head as I walked to the bright light of the newness. I showed Grey his new schedule and I comforted him as his hands shook and big old globe sized tears chased each other down his cheeks. He went to his Summer Schedule (which had less hours of work) and said, “This one, this one, this one” over and over. I remembered we had a choice.

Now it's time for new, and there will be good things in it. That schedule is over. And this week will be hard but then it will get easy. You can do this, because you are so smart and so strong, and I am here to help you. 

We slid into my bed, turned off the lights and closed the door. "Do you want me to go or stay here with you? I asked him. "Stay here" he said. So I did. And we breathed in and out and remembered every little thing WILL be alright. It always is.

Good luck to you in your life transitions these next few weeks too my friend. 

XOXO,

Chrissy 

the lost art of story telling

My goal in writing this blog has always been one thing. World domination. 

Ok, fine, I’m kidding. But I do want to reach as many people as humanly possible with my words on this screen. I want to talk about capital L Life and connect with like and opposite minded people. Genuine connection. Genuine conversation. I want to talk about Diversity and autism and acceptance, because boy have my boys taught me more about the human experience in ten years than I learned in my entire life before that. I want to talk about the difficulties in accepting the differences in our own selves, because how can we truly celebrate diversity in others, if we hide our own differences in shame? I am a big old work in progress, and I believe examining and understanding our own patterns in life can help us see where we are stuck or holding ourselves back. We all deserved to be loved, exactly the way we are. 

I love a good story. Reading takes me places the world can’t or won’t. It takes my brain out of its overthinking circle. When I read, I am free. I love writing almost as much, although it takes more effort. It’s a way to release, to connect, to organize thoughts and to make sense of things that don’t always make sense at first. It’s kind of like working out- I often dread it before, and then once I start I wonder- why don’t I do this more?! When I’m writing, I feel most like me. 

When do you feel most like you? I think that holds very important answers to questions we don’t ask ourselves nearly enough.

Recently the boys and I participated in a promotion for our local mall. Basically, we got to go shopping and then I shared about it on social media. Like many of you, I have a love/hate relationship with Social Media. I love the education and the connections it provides, but it also often opens the doors to comparisons that leave me feeling annoyed or less than. It feels like so much of it now is a person selling only a product with an image of themselves or their life in a way that feels incredibly inauthentic. There’s a huge focus on what we look like, what we buy and what our life looks like from the outside in. Much of it is curated to be on trend and on brand, to look perfect and to be aesthetically pleasing to the eye. I love beautiful pictures, but also long for a big dose of reality mixed in.

As I was putting together a reel of our shopping experience, I decided I would enjoy the experience of storytelling through pictures and videos. I’ve always run full speed away from anything remotely “influencer”y. (Ironically, I am easily influenced and let Instagram tell me what I need to buy on the regular.) But over the past several months, I found myself wanting to engage in that realm with my boys. 

I didn’t grow up knowing much at all about “Special Needs” anything. When I was exposed, I was uncomfortable. Back then the world rules were- “Don’t stare and don’t ask questions.” There was an unspoken, (and sometimes spoken) message that these people were broken and to be pitied. We mustn’t make them feel worse than surely they are already feeling! Anyone who engaged with these individuals as parents or teachers were “Saints!” and “Angels”! 

Fast forward to three months before my first-born son-Greyson’s -Third birthday, diagnosis day. The day I realized we were part of that club, even though we never asked to join it. There was a long parenthesis of time after that contained mourning and fear and deep sadness and loss. We had no choice but to go through the motions of living life. And in doing so I slowly began to realize- in so many ways- that the story I had been sold about Special Needs and Disability was wrong, and that we could still have a beautiful life. I searched online far and wide for someone who could show me- yes, life will be hard, harder than most- but it will also be MORE beautiful too. I couldn’t find it so I began relentless photographing my boys and writing in this blog to remind myself- and to show others, that life is whatever you set out to make it. I wanted the world to see as much good in my boys as I do. 

It’s been ten years now. And I’ve forgotten and remembered my purpose too many times to count. I’ve let the world leave me feeling defeated, and confused. The irony is that my boys’ diagnosis isn’t what leaves me gutted- it’s the world who isn’t always accepting of different. A world that loves hashtags about diversity and autism inclusion once a year, and then goes back to being its regular mean girl self when the month on the calendar flips. I’ve realized there are so many more good folks than bad, but like the iconic scene from the movie Pretty Woman says:

Vivian: People put you down enough, you start to believe it.


Edward Lewis: I think you are a very bright, very special woman.


Vivian: The bad stuff is easier to believe. You ever notice that?

The bad parts are easy to remember. 

I wrote about Diversity in Advertising in before it was “on trend” (must be said with a snotty accent) back in 2014 HERE. In it I share:

But the world still needs more real and less perfect. I want to help you show the world what we as their parents already have the privilege of knowing- These are some of the most amazing and beautiful children in the world, and they deserve to be seen and celebrated. These kids struggle to overcome things that come so easily to the rest of us. Things we take for granted. They teach us about patience, hard work, unconditional love and how to find the truest of beauty in the unexpected.

And recently I realized- Being an influencer is actually perfect for us! It doesn’t have to be synonymous with fake and expertly curated. It exposes people to Special Needs in ways I wasn’t growing up. It gives other people with Disabilities someone who is relatable. And I get to control the content making sure it’s in line with things my boys do and love anyway. I can combine my love for telling a story and taking pictures. Here are some outtakes from our afternoon...

Will Work for Ice Cream 

I’m trying to learn how to connect with an audience who doesn't often value the art of telling a story in more than one slide or ten seconds.Time Magazine wrote an article You Now Have a Shorter Attention Span Than a Goldfish.

"The average attention span for the notoriously ill-focused goldfish is nine seconds, but according to a new study from Microsoft Corp., people now generally lose concentration after eight seconds, highlighting the effects of an increasingly digitalized lifestyle on the brain.

But I’m committed to keep living our story, and to keep sharing it while remaining true to my boys and myself in the hopes that one day the world will see what I see.

Plus, we get to have fun while doing it. I think there are more of us who love a good story here on earth still than we realize.

XOXO,

Chrissy

Here's our final Reel HERE