Friday, June 21, 2019

respect the breed

Author Kelly Corrigan's Motto is "Things happen when you leave the house". She is absolutely one of my favorite writers and feeler ever, but her life motto sounds more like a torture theme to this high anxiety introvert.

But sometimes our greatest pains are directly connected to our greatest strengths. I remind myself of that when I beat myself up for not being (more extroverted, less anxious, more adventurous, a better cook and approximately 11 million other things depending on the day and the amount of grace I have left in my cup). I like to stay home. A lot. All I really need are the people (and animals) I love, a good book, a comfortable spot (hopefully in the sun), and exercise. I like home. Sometimes the world just feels too big and too scary. Home is predictable. Safe.

I told you about our new dog Lucy. Lucy is so chill. So sweet, so laid back. The other day Parker squeezed her face too hard- to the point she yelped. And two seconds later she was following him around ready for any attention he would give her. She also doesn’t get worked up when someone rings the bell. She runs into things all the time. She literally ran into the back glass door this morning causing a thump so loud I jumped. She’s a little bit of a doofus. And it’s perfect. Because it’s also how she’s so chill with the kids. Lucy is Lucy. Chill with the kids, not a watch dog, and a bit of a clutz. 

Now Oliver is kind of high strung. He is part chihuahua- so he guards the castle. He’s fast and super agile and doesn’t love the unpredictability of the boys sounds and movements. But he does love to run with the boys and play outside. He doesn't tire easily. He's also a super fast learner, and takes what we tell him seriously. You can't expect a chihuahua to be a Golden Retriever. And vice versa. 

I can so easily look at my dogs and respect their breed combined with their own natural tendencies. Respect that for them to be one thing- it might completely exclude them from being another thing too. I don’t judge it, I just notice it and try to work with it.

I am trying to offer myself that same grace. So maybe I am too anxious, and definitely too this, and not nearly enough that. I am anxious more often than not. I am constantly thinking, researching, writing. But I am also super organized and love to meet fear of the unknown with learning everything I can. 

I am deeply by routine, and often rigid in my patterns. But I don’t need much at all to entertain me. I am organized predictable and dependable. 

I can’t be anxious AND laid back AND organized AND constantly moving and going. I can't be all the things at once. It’s not my breed. I'm a HUGE fan of self-improvement, but I'm trying to tackle that from a place of "I am enough, and I can always be better," not from a place of, "Boy are you broken!" 

All of our lefts have rights, our yin’s have yangs, our sweets have sours. Life is a series of contrasts. One cannot exist without the other. 

What is your breed? How can you love it?

Tuesday, June 11, 2019

life is good

I am a little lost. 

And when I am lost, I often hide. Writing is a way to help me figure things out, to help me be found. My internal GPS. So, I hide from writing too. I don't realize it, until I realize it. So here I am. 

I have no plan now, but to unwind with words. To pull out the things I have been stuffing down. 

Transitions. They jolt me completely.  Way before autism was part of our family DNA. I hate it when people blame their own shit on their kid’s autism. Nope- you were uptight way before autism, Susan, let's be honest.  

Even good transitions, like crashing into summer. What will we do? Not in a bucket list sort of way, (I hate those by the way. I don’t need another list, or another reason to feel inadequate.) I mean what will we do on a Thursday at 11am when the week feels like it’s lasting forever and Parker has already lit something on fire and found all the knives and the one hidden sharpie and I just don’t know how I can fill the emptiness of the next 40 years.

The good news is, it just takes us all a week of dipping our toe into the new schedule before it doesn't feel so scary.

So, my dad is still dead. A fact that still shocks me most days. If I refuse to believe it to be true, perhaps it won’t be? I hate that it still genuinely surprises me when I allow my mind to linger there. I will hate when it doesn’t shock me anymore, because that will mean it's real. 

2019 has not been my friend. Jack my dog died. And Belle 5 days later. And then my dad, after a horrible extended stay at a horrible place. There was negligence, there is a lawsuit. I ask God- how do I process this information? Where do I put it? Why are elders and special needs children targets for some people who just don’t care? I remind myself that there are also people in these fields that are angels and making magic too. But right now- the ghosts of the evil ones linger because of what I have seen. That kind of evil is hard to process.

Parker is so so happy to be "all done school", and I am too. We need to detox from that joint for a couple of months. Grey will probably be going back to school with Parker in August. Even the transition into making that happen has been difficult. I try to put that worry in a box, and wait until August to open it. It shouldn't be this hard, I find myself thinking on a loop, over and over again.

I bring my mind back to the now. The boys are in Behavior Therapy. Oliver, one of our two new beautiful babies is sleeping by my side. 

I never officially introduced them here. 

 This is Oliver. 

And this is Lucy. 

It's scary to love this much. But love is always worth it. Always.

My current television obsession, "How to Get Away with Murder" is on Netflix in the background. Today is good. Life is good. Thank you for reminding me of that.

Tuesday, April 16, 2019


So much of my writing is also my internal quest for a silver lining. I often end up finding it by the time I'm done. This is not one of those times, there's not a lining, silver or otherwise in sight. I’ve put off writing this post over the past month. I just don’t have the words to say other than "My Dad is dead". A fact so raw, that there is no right way, so instead I just dive into the unbearable truth of it all.

The feelings crash through me at an inconsistent pace that I can’t predict or keep up with. Fear. Anger. A deep and draining sadness that shows up and stops me from getting shit done. Sometimes it is just hard to breath. I called his number to prove it was disconnected, which then made me cry harder. I listen to old voicemails that feel like torture and a soothing balm all at the same time. "Chrissy, this is your Father, Ron Pratt." GOD LOVE HIM for stating his name, as if I had multiple Dads. I stare at his picture and know he will walk in at any minute. He just can’t be dead. If I simply refuse to believe it, then it can’t be true-right?

On January 28th, my Dad had surgery to remove a cyst from his brain. After a few weeks in the hospital, he was transferred to an Assisted Living/ Rehabilitation Center. An unexpected blood clot post-surgery did some damage to his cerebellum and he needed to spend time getting stronger. Within 24 hours of being at this facility, my Dad fell out of his wheel chair three times. “The hospital didn’t tell us he wasn’t aware of his own safety,” they told my Mom. The picture my Mom texted me filled my stomach with cement. It was my Dad with a large contusion on his head, and a black eye. His eyes looked so sad. He was in Missouri, and me being so far away in California, felt like drowning. 

I didn’t understand how he could have fallen more than one time. How were no corrective procedures put in place after the first fall? Why didn’t the facility do their own safety assessment to see what my Dad’s needs were as soon as he was admitted? What was their plan to keep my Dad safe? I called and spoke with the facility, and their words brought no peace. I let them know that we would be moving him as soon as I found somewhere else for him to go. 

I barely slept that night. The next morning was spent on the phone with insurance and other Assisted Living facilities. I was looking for one with a good reputation that accepted my parents insurance and had availability. Several places didn’t have room. A few did, and my Mom and Aunt toured them during a particularly bad snow storm in Missouri. We put in a transfer for the place they liked best. After a couple of days this facility said then said they actually wouldn’t take my Dad. We were back at zero- and I was devastated. I called to see what happened. When my mom toured this place, everything was good to go.  “Why won’t you take him?” I pleaded from thousands of miles away. “Because we can’t offer the same level of care as they can,” they told me. “But you are an Assisted Living/Rehab facility too. What do they have that you don’t?” I asked. No answer, except to repeat the sentence again. I realized how similar advocating for slippery special education services was to this new scary world. Why isn’t transparency and safety a guarantee for children with special needs and the elderly? I am sometimes terrified by what we value as a society.

I had to see my Dad, so I booked another flight to Missouri, my second in less than a month. I was trembling with excitement and sadness and hope and fear as I drove there from the airport. Walking in and hugging him was everything. He was still Dad, just now with sad eyes. But he was my Dad, and I knew he would fight to get to the other side of his recovery. I knew I had to put the happy into his eyes again.

Going to Physical Therapy and Occupational Therapy with him was my favorite. It was incredible to watch the strongest man I know regain his physical strength. He was so brave. When he had first arrived, he could barely talk, and he couldn't eat real food or stand or walk. Now, not even two weeks in, he was able to speak and he could eat real food. He was working hard on standing and coordinating all the things it takes to walk. It’s remarkable the things we take for granted until they are gone. He tired easily, but I know him better than I know myself and I knew when he needed to rest and when he needed a little extra push to keep going. I was his drill sergeant- cheering him on but pushing him further. The therapists got a kick out of us.  

At night he still tried to get up out of bed, so sitter would sit with him. He was strong enough to push himself up, but not strong enough to walk. The last night I was there, I slept next to him in the recliner. We watched Forensic Files on repeat. I slept with one eye open. He would stir- “Everything OK, Pop?” I would ask. And then he would remember that I was with him… remembering the joy in his eyes when he realized it was me sitting next to him is causing me to sob out loud as I type through my tears. “Hello dear.” He would say with his twinkle in his eyes, reaching out his arm to hold my hand. Even when my arm fell asleep from stretching to reach him, I didn’t let go first. He is my heart. 

My sisters, Katie, Lisa and I with our hero- our Dad.

His diet had progressed from liquids to purées to chopped foods, to whatever he wanted when I arrived. You better believe I brought in Jalapeño Krunchers and Red Hot Riplets potato chips - our favorites and St. Louis Missouri legends. My Dad and I shared a love of snacking, watching TV and napping, and that’s what we did each day. It was magic. 

The other residents there were magic too. I don’t think we should call people who have been on earth the longest “the elderly”. They are so much more. They are the wise. They are the humbled. They are recipients of so much experience. There were a couple of residents 100 years old. I made some new friends. I listed to many stories, and was truly humbled by the perspective only the wise can offer. 

I can only imagine how hard it is going from full independence to depending on someone else for your every single move. Having to ask permission to get out of bed or go to the bathroom. We assume people know how to get older, simply because they age. But I think it's surprising and confusing for us all at times. 

My Dad wanted to leave this place so badly. “There’s just no dignity here, Chris”, he told me on more than one occasion. Based on how some of the staff interacted with him, I could understand how he felt that way. There were big things and little things. Little things- like assistants walking in- not saying hello or introducing themselves and shoving medicine into his mouth. It’s incredible the difference a little kindness can make. It’s incredible what it’s void can do too.

“This place can’t be your prison.” I told my dad, gesturing around us “Your only job here is to gain your strength back so you can leave. This is temporary. This is the only place that can be your prison,” I told him- tapping on my head. I know first hand how I can imprison myself with my mind more than any circumstance could imprison me. I could feel my Dad’s pain. It was unbearable.

I remember kissing his sleeping forehead on my last day as I left. I held it together until I got to the airport. I called my husband, Michael while waiting for my flight, and all I could do was sob out loud on a couch in Starbucks. “We need to get him out of there,” I told Michael in between sobs. My Dad hated it there, and the thought of making him stay was beyond unsettling. I needed to fix it, and I didn’t know how because my Dad wasn’t yet able to travel. My parents couldn’t go back to their home- it is an old brick building with several old steep and narrow stair cases. My Dad still needed to get stronger before he could leave. 

My Dad continued to get stronger. He was able to stand with assistance in therapy, and he was walking the distance of the therapy gym with a walker and the therapists help. A week after my return back to California, I woke up to a text from my mom. I was expecting a picture of my Dad in therapy, kicking ass. Instead I found out he had fallen again. There was a huge lump from the top to the bottom of his forehead, and blood was rising to the surface of his skin. It looked horrific. The sad eyes were back. My Mom walked into the facility that morning, and found my Dad set in a recliner and pushed up to the breakfast table. He had his head down on the table and he was in pain. My mom was told my dad had fallen at around 5am. No one was in his room watching him per orders. He was not seen by a doctor after his fall. He was on blood thinners, which can make falls even more dangerous. It was now three hours later, and my Mom requested that he be taken to the hospital to be seen. An ambulance didn't arrive for another 30 minutes. So much time was wasted.

Soon after arriving to the hospital, my Dad became unresponsive. His skull was filling with blood and causing his brain to swell. After confirming this with a CT scan, he was rushed into surgery. They had to remove a flap from his skull to make room for the swelling and work to stop the bleeding. After a follow up CT scan post-surgery, the doctor confirmed that his head was still bleeding. We had no choice but to let my Dad go. 

On March 5th, at 3:30 in the morning, my Dad’s heart made its final few beats. I sat in my closet on the phone with my sisters and Mom, as to not wake Michael and the boys, and we all cried. I wanted to die with him. I kind of thought I was. It hurt more than any words can explain. 

Three days later, Greyson, Parker, Michael and I flew to Missouri to say our final goodbyes. It was so wonderful to be with my family, and so horrible to be there without my Dad. My Mom and sisters and I went through old pictures and we laughed and we cried. The 80 year old man I knew, was replaced with every age he had even been. He's one of the best people I've ever known. And now he's gone. I gave my Dad’s eulogy, and it was such an honor to be able to share what a remarkable human he was. 

My Grandma Agnes, who died before I was born, my 19 year old Dad and my Grandpa Jesse.

My wedding day with my Dad and Mom, June 24th, 2006. My parents were married for 52 years, and are a remarkable example of what real love is. 

Poster Boards my sisters and I put together for his funeral. My Dad was a husband, a real estate owner and property manager (he never retired), a veteran, an uncle, and a friend to many.

It’s not the kind of thing you get over, so I’m learning to live with a dad shaped hole in my life. We all are. My Mom's strength is incredible.

Thank God we have each other. Sisters, Katie and Lisa, me and my Mom. 

The sharp pain I felt while crying in my closet has been replaced with a dull and constant ache. Somehow the world goes on without a Ron Pratt in it, although I'm not quite sure how. When burned down to its most basic of elements, this pain is really love. It hurts this much, because we love so much. And it's worth every moment we had.

I'll leave you with some words written by poet, Nekia Thomson, which we included on my Dad's funeral program...

When tomorrow starts without me, please try to understand, that an angel came and called my name and took me by the hand; the angel said my place was ready, In Heaven far above, And that I'd have to leave behind all those I dearly love. But when I walked through Heaven's Gates, I felt so much at home, for God looked down, smiled at me and told me, "Welcome Home." So when tomorrow stars without me, Don't think we're far apart, for every time you think of me, I'm right there in your heart.

I miss you Dad. I am so proud to be your daughter.

Friday, February 15, 2019


Stories have to be told or they die, and when they die, we can’t remember who we are or why we’re here. (Sue Monk Kidd).

When I think of my dad, I will forever picture a 45 year old man, with tan hands and a dark brown mustache. A witty, quiet man, who could often help you make sense of this complicated world with just a few words. A man who loves naps almost as much as he loves my mom, his wife of 52 years. He knows struggle more intimately than most, through the loss of his first born, a 7 year old boy named Douglas, and many other tales that are only his to tell. I hold his stories in my heart.

Doug, Dad and me

Ron Pratt, was born in St. Louis Missouri in 1938 to parents Agnes and Jesse. 

His best friend, Don Steinmeyer (left) and my dad (right in both pics.) "Our Dad was a babe", I told my sisters when we saw these pictures.

Dad graduated high school from St. John the Baptist, and went into the Navy for the next 5 years, 2 years in active duty and 3 years in the reserves. He started civilian life at Union Electric, the local Utility Company as a lineman, where he worked by day and then went to night school. He met my mom, Joan, when she was just 18, and he was 25 at the Cathedral Club, a group for young single Catholics. "We were in a Christmas Program. I danced and he played the banjo," shares my mom.  

They married in 1966, after a simple proposal that occurred one morning at Uncle Bill’s pancake house in St. Louis Missouri.  Together Ron and Joan had 4 children. Douglas was their first born, a precious son. Followed a few years later by me- (Hi- I'm Chrissy. Nice to meet you!). When Doug was just 7, he was hit by a car while crossing the street, and he died the next day. A year later, daughter Lisa was born. And last came the youngest, Katie.

Chrissy, Ron, Joan and Lisa
Katie, Dad and Lisa

I can remember times we only had one car, so my mom would wake us up while it was still dark out to take my dad to work at the Utility Company. We didn't have a lot of money growing up, but even then, my fondest memories really have nothing to do with cost. A big night at our house involved a TV movie and popcorn popped right on the stove. "I'm popping," my dad would say. "Who is pouring?" It was my mom's job to pour Kool Aide from a plastic tupper wear pitcher, or if we were really lucky, Hawaiian Punch stored in the fridge in a half gallon metal can. I can almost taste the slight tinge of metal and the pure sweetness of childhood.

Recently my dad had surgery to remove a benign cyst in his brain, located specifically in his cerebellum. Hopes were high and the surgeon didn’t seem too concerned. But a few hours after surgery, my dad became unresponsive. He was rushed back into surgery that same night, where they discovered a blood clot that had formed. It did damage, and recovery is not what was initially expected. Greyson and I flew from Fresno, California the next morning. I was terrified the entire flight that I would land to the news that my dad had died. 

He remained in the ICU for several weeks and transferred to a skilled nursing facility a few days ago. We are working to transfer him to a different Skilled Nursing Facility, one that can better take care of his needs. He has fallen a few times and has a huge knot and abrasion on his head and a black eye. Not being there able to help him feels like drowning. I am going back to Missouri soon, and my only goal is to sit and hold his hand with my family around. There is so much that has to be done (transfer facilities, figure insurance out, sell my parents home- it's got three stories and will not work again, find an accountant to help with my dad's Real Estate books...drowning...) We will do 24 hours at a time, while chipping away daily at the future. 24 hours we can do. My dad has always taken care of us, and deserves the best- He is a precious part of many hearts. 

In parenting they say, "It all goes by so fast." The same rings true for being a child, and watching your parents grow up and old too. It's all so fast. Now that I am a parent and see just how dang hard it is, I appreciate my parents even more.

If you are the praying type, we sure would appreciate yours. I am my father's daughter, and he is my heart. I needed you to know just a glimmer of my dad and his story. He helps me remember who I am. 

He is my safe place

Thank you God, for our dad. We really got a good one.

So much Love,


Monday, January 7, 2019


You were always here to welcome us home. 

I despise using past tense to talk about you, Belle. But Jack was waiting for you in heaven and it was time. In just a five day span, we had to say goodbye to both of our dogs. 

Our house is too quiet and empty without you, but I feel better knowing you are with your precious sidekick. I miss the click of your nails on the hardwood floors and the clink of your dog tags on your water bowl.

Jack was a just few months old, and he was devastated every time we left the house. He wouldn’t even eat the treats he usually snarfed down, because he was just too sad. So we got you to keep him company. At first your presence made Jack was even more sad. (Ha!) He was like a firstborn child when a new baby is brought home. After a couple of weeks he warmed up to you. And you’ve been a constant duo ever since. Your role in life was the bringer of joy, and that you did in spades my Belly. 

I see myself in your curiosity for all things, your neuroticness, and how you think everything is yours to fix and stress over and control. You were the pack leader. 

You are a daddies girl. I won't past tense that one. It's forever. 

We never even had to potty train you. You didn’t have any accidents in your early days. You were so smart. So stubborn. So amazing. In a way, I think all dogs are rescue dogs, because they rescue us from the hardest parts of life. And life is so very hard sometimes. They help us focus on what matters. They help us notice the simple and profound beauty all around us.

You welcomed home Greyson and Parker, 22 months apart. (Parker pictured, 2 days old).

You helped me potty train. You were such a good little momma.

 You were always there. 

And without you, we are lost. I will miss your head tilt. Your expressive eyes and eyebrows. The way you always guarded the boys. Wherever they were- so were you. (Especially if they had food.)

As long as we search, we will never find another Belle. There will never be another Belle. Albert Pike said “What we do for ourselves dies with us. What we do for others and the world remains and is immortal.”

You and Jack gave so much to our family. Immeasurable patience and unconditional love. A warm welcome every single time we came home. You were our family and your absence will be felt daily. You were a healer, a therapist, a pillow, a tear catcher and licker, a food off the floor eater, a sunbather, a door greeter, a joy bringer, a protector, a soulmate, a friend. Your gifts and your spirit are immortal. 

So many jobs, just one title - Dog. God spelled backwards. No coincidence. Of course dogs go to Heaven. How could it be Heaven without them?

I know one day you and Jack will be ready to greet us in Heaven when it's time. Until then, we will miss you like crazy.

So much love,

Thursday, January 3, 2019


I hate writing this post. If I write it, it’s real and Jack not being here can’t be real. It must be a bad dream that I will wake up from soon. 

The contractions were coming closer and closer as the pain increased in intensity. I desperately needed to think about something else as I waited for my epidural. “Tell me the story about the day we got Jack”, I asked Michael. It was the best day, and it was exactly what I needed to take my mind somewhere far away. He is my person, Jack the dog. One of the few who made me feel understood. The smell of his fur is an instant decrease in my blood pressure. 

But now he is gone.

We brought him home to our new condo in Hermosa Beach, California almost 12 years ago. I insisted we crate train him, that is, until I heard him cry in the middle of that first night. From that moment on, he was in our bed and in our hearts. He slept curled against me at night. He knew I was pregnant with Greyson before I did. Suddenly he followed me everywhere- even scratching on the bathroom door when I was inside. What is up with Jack? I wondered. One positive pregnancy test later and it all made sense. 

Through moves and the birth of two little boys, he’s been there all along as my husband and I grew up. Jack always knew he was my first born baby born.

Yesterday we had to say goodbye to Jack. And I’m terrified to live in a world without him. My chest physically hurts with each breath in, after watching him take his last. He had a severe bacterial infection in his blood called Sepsis. They couldn't find the infection's origin and would have needed invasive surgery to even attempt to find it. Surgery that they didn't think this sweet old boy could survive.  One day he seemed fine, and the next he was throwing up, had a slight tremor and was unusually warm to the touch. It was so hard for him to breathe and he was in so much pain. Michael called me from the vet with the news.


I was in disbelief. He was supposed to go to the Vet, get medicine and come back home. That’s what always happens and this time should be no different. But Jack was never coming home. 

I loaded the boys in the car and we drove to the vet to say our very last goodbye. We walked into the small sterile room. Jack was on heavy pain medication and wasn’t very responsive. His eyes were open, so I got down to talk to him. I climbed onto the small metal table and placed him in between my legs as I stroked his fur and told him what a good dog he is.  I told him how special he is, and how sorry I am that he is in pain. I thanked him for loving our family. I thanked him for loving me. What a gift it was.

Baby Grey, Jack and me. Jack slept by my side. Sometimes there was a newborn baby between us. 

When we would go to the dog park, he would run so fast in circles around the park as soon as we got there. It always looked like he was smiling.

He put up with all my antics.

He loved to find a sunny patch and just lie down for awhile.

The Vet asked us to let her know when we were ready. Are you ever ready to put poison in your dog and hold them as they die? 

“They want to know if we want his paw print and his ashes,” Michael told me. “NO!” I whispered angrily. “I don’t want those things, I want my dog.” I cried. I just want my dog...

Each breath of Jack’s took so much energy. It was time. The vet poked her head back in and I solemnly nodded. She came back with syringes to use on the port he already had in his paw. The vet explained that they would first give Jack a sedative. And the last syringe was the end. I held Jack's head and he body was cradled in between my legs. Michael and I held hands. I wanted to start screaming and never stop. The Vet used her stethoscope to check his heart, and then tried to close his eyes. I knew he was gone. 

Those 12 years were over so fast. 

The boys said goodbye to Jack. They are more intuitive than we could ever imagine, but life and death are very complicated, not-concrete terms, and I don’t really know how much they understand. I’m in my 40’s and I still don’t understand. 

A video Parker made a few weeks ago.

JACK!!! JACK!!! JACK!!!.... I went outside this morning and yelled his name over and over again in agony. I sat down on the frosty sidewalk and welcomed the numbness of the cold. I just want him back. I can’t sleep without him. How will I advocate without him? Every rough meeting ended with me snuggling with Jack at home. How will I homeschool without him? He laid at our feet. He was my home. He is my heart.

Everything good in life has a cost, and the cost of love is intense pain and loss. We must still love though. Jack's love was always without conditions. In many ways, he taught us how to love, simply by the way he loved us. So for now I will figure out how to live with a Jack shaped hole in my life and remember that this pain is so big because our love was even more grande.

Sunday, December 23, 2018

the quest for holidays

In the hustle of the December twenty-somethings, I am left feeling a sudden moment of clarity. One that I want to pass along to you my friend. In this moment I remember that true holidays are about connections with other souls. These moments don't even have to be aligned with a specific date on the calendar. They are about recharging. They are about getting quiet and remembering what it is you live for. Because so often- life gets in the way of living.

(Partial clarity provided by time just spent drinking spicy beers and time with my friend Wendy. Her soul gets mine like no other. She feels like home.)

Paying bills, vacuuming, regret, anger, jealously, errands, disappointment, perfectionism- I don't live for.  No sir ee. Not quite sure why they get so much of my daily focus though. Perspective can be a hard thing to come by some days.

Connecting with like minded souls, being vulnerable and authentic, telling the truth, learning new things, stretching outside of my zone of comfort, advocacy and world changing- These are the things I live for.  These things refuel me.

Lately, whenever I find myself stretched due to a life circumstance so far I think a muscle will tear- I thank God and the Universe. Truly. It feels counter-intuitive at first. But really- these are the moments where we learn the lessons we are meant to learn to be who we are meant to be. I'm so grateful for perspective. Practice it- "Thank you God for this opportunity to..."

At first I want to tell myself to shut up. Sometimes I actually do. But most often, when the initial fear or pain wears off I realize- yes, this too is a gift. Not all gifts come wrapped in pretty paper.

So, if you haven't started shopping yet, or haven't wrapped a thing... remember what matters most to you in life. Chances are you have everything you need right now, and don't even know it.

So much love,

Thursday, December 13, 2018

Holiday Program of Christmas Yet to Come

Although I’ve thought of little else since this happened, it’s hard for me to go here now. The story and my heart is raw, and true resolution just doesn’t exist without the passing of time. But details fade and deep pains are often replaced with dull aches and faded memories. I need to write while pain is still there and details are vivid. I need you to be there with me.

Last Wednesday I went to pick up Parker from school. I just think of him as my son in First Grade, but at school he has an additional label of  "Special Needs student with autism in a self contained classroom". As I waited for Parker, I heard children in the cafeteria singing. Their tiny booming voices echoed off the walls and filled my heart with the childhood joy I always felt in school. Memories that smell like crayons and hope and possibility. A innocence and magic feeling that seems to be missing from many experiences in Special Education.

I remembered a Holiday program was occurring at Parker's school, and I wondered if I had missed additional correspondence on it. While walking to my car with Parker, now holding my hand, we passed the school office so I popped in to ask.

The following is how it played out, as described by an article in GV Wire, written by Bill McEwen.

“When is the Christmas program?”
The secretary said, “Tonight.”
Question: “Who’s in it?”
Answer: “Kindergarten through fourth grade.”
Question: “Is Parker’s class performing?”
A phone call and then the answer: “No.”
Understand: Parker Kelly has autism. He is part of what is called a Special Day Class.

I walked to my car with my teeth tingling. My chest physically hurt from trying to understand what can not be understood. I saw my life of advocacy pass before my eyes. All the meetings I've gone to...where I made sure I didn't wear blue jeans and I didn't cry or act crazy or emotional or raise my voice- because that's how Special Needs parents are labeled and written off. Where I made sure to share- I’m on your team! Let's work together! Where I begged for my sons and all kids like them to be included and to be treated equally. Where I shared data and best practice and law and just a bit of my heart. Countless hours. Endless research and presentations. Federal Law backing all requests.  

It didn't work. It isn't working. It doesn't work- was all I could think on a loop. My stomach was inside out and I knew for just a moment I needed to chuck the data, and share my heart, as I did on this video. 

So far it's been watched 90,000 times. It's hard for me to watch.

We've received a couple of apologies, namely from our Superintendent and School Principal. We've sat down and talked and tried to understand the how and why which I still can't understand. I can't fathom how anyone doesn't see the magic I see in my boys. They weren't an afterthought, they were not a thought at all.

Special Needs student have been excluded from this program for years. This was not a one time scheduling issue as we were told. This is the norm in many pockets throughout our District.

But it can't be anymore. At least not while I'm paying attention. Apologies pop like bubbles, but policies and change lasts forever. Attending activities like School Holiday Programs is protected by a Civil Rights Law: Section 504 of the Rehabilitation Act. In the educational system, it prohibits districts from discriminating against qualified students with disabilities on the basis of disability.  Schools are also required to provide students with disabilities with an “equal opportunity for participation” in “non-academic and extracurricular services and activities.” (MORE INFO ON SECTION 504 HERE)

No one from Special Education has shared any steps that are being put in place to ensure this doesn't happen again, so I created some that my husband and I will advocate for:


To avoid future occurrence of this, I recommend that all Special Day Class (SDC) students be given the option to:
  • Practice for musical performances with their grade equivalent General Education peers.
  • Attend musical performances WITH these peers on stage (not as a separate SDC group).
  • Be given any necessary accommodations or modifications (Including but not limited to visual supports, aides, sensory supports, their designated speech device, duties alternative to singing- ex. bell ringing, program distribution).
  • Students should only be excluded at parents request, or when the nature of their disability is so severe that being included with General Education peers is not an option.
  • SDC parents should be notified when practice begins, as well as notified of the planned upcoming performance, which can include listing any specific supports that student will need.

Attached is an example of what notifying parents could look like. All Special Education Teachers, General Education Teachers, and Music Teachers must coordinate together and be given the appropriate staff and supports to execute.


I want to turn our pain into action. I want Inclusion to be the cultural norm and an actual happening thing, not just a word. 

And my only wish from Santa this year, is that the world will see the magic that I see in children like mine, not just in Christmases yet to come, but all year long.