Friday, February 15, 2019

Dad

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,

Chrissy

Monday, January 7, 2019

Belle

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,
Mom

Thursday, January 3, 2019

Jack


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.

WHAT?! NO! 

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,
Chrissy

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.

Sunday, October 14, 2018

happy seekers

It comes and it goes. Sometimes the recipe is an old favorite. Sometimes all the same ingredients put together in the exact same way suddenly don't don't turn out. We all are just seeking happy.

We've all had those moments we swear we will never recover from. Cold. Empty. Frozen. Free of hope. Sometimes numb is so much better than pain. But you have to feel the bad to feel the good. And numb is just a purgatory stopping you from happy.  We are all just seeking happy.

Keep seeking.


Happiness. Something so many adults search endlessly for. Sometimes I forget how to make it. Sometimes it feels so far away and sometimes so close, yet I can see it slipping through my fingers. It's more simple than we make it. And few things matter more than it.

Happy.


Last weekend we went to the Big Fresno Fair. This year marks it's 136th year in action. It happens each October, and its two-week run featuring exhibits, a livestock show, live horse racing, concerts, educational programs and food guaranteed to clog even the cleanest arteries. 


It's heaven for Greyson and Parker. Their happiness becomes mine.


Lately it's been a little harder for me to find happy. I don't know if it's due to a change in Season, or a change in brain chemicals (or both) or just because sometimes, life is so hard. But today as I review these pictures with a smile on my face, I can feel some happy.



He likes all things spinning. I sat with him and took deep breaths and prayed my venti cold brew didn't come back up. 







Parker has just started liking going on rides.  However, if it came down to it, I think he would pick food for his first favorite thing.


He does happy so good. He makes it look so effortless. 



Keep your eyes on the real prize. I think it's happy. Few things matter more.

Tuesday, September 11, 2018

advocacy

You are assigned the role 'advocate' the moment you have a child. Suddenly you are bombarded with choices you must make in the name of this tiny human stranger. Choices over topics you previously most likely have no knowledge of.

"We are here to give Greyson his HepB vaccine", the nurse says with a knock at my hospital door. I don't even know what that is or how you get it- but "Ok...come on in." Another knock- "We need to do Greyson's heel prick test. Just a quick blood draw."I felt so ill prepared. "OK....what is this test for? Will it hurt him?"

To circumsize or not. Vaccinate or delay. Is he getting enough breast milk? Should he be sleeping longer than 2 hours at a stretch? Is it bad to take him out in public? I don't want him getting sick. I didn't know the answers to any of the things, and the advice I got from all over contradicted itself.

There are so many decisions involved in raising a child, and the older they get, the more decisions you must make. And just when I thought I had this parenting gig figured out, Greyson stopped developing at the same rate as kids his own age. This took a need for advocacy up to an entirely new level. My level of knowledge on childhood development and speech delays was 0.0. And suddenly I realized that if I needed to properly advocate for my son, I needed to be an expert on ALL of the things.  Big complicated things I knew nothing about. Things people go to school for years and years to become an expert on. I wanted some PhD equivalent on autism and communication and behavior child development overnight.

And then school started. And I wanted to become an instant expert on Evidence Based Practices (even though I didn't even know there was such a thing at the time), and teaching, and Speech Therapy, and Legal Matters associated with Special Education, and Disability Law and more. At first I just learned on the job as I went along. I assumed that people in their role wanted what was best for my child, and knew better than me so I let them guide me.

I still believe that most people in schools have the best interest of students in mind. The type of person I am must believe that. Luckily people don't have to work too hard to prove who they are, one way or the other. Maya Angelou said, "When someone shows you who you are, believe them." 

But too many times I have encountered situations where resources or personnel needs or classroom needs or a lack of knowledge, or an excess of ego or the need to stay in line with the culture came before the needs of my child. I realized there was a vast difference in understanding of autism and evidence based practises from teacher to teacher in each autism classrooms. I realized that my husband and I were the only people with guaranteed pure intentions wanting nothing other than what our boys need to succeed, based on things the law provides. However, we did not have the knowledge and facts we needed to advocate, which was a problem. How did we know what to ask for, when we didn't even know what the options were, and we also didn't know what our son even needed? How did we know if something was wrong, and more importantly, how did we explain it beyond- My guts says this NO GOOD.

Most parents I've met who I consider incredible advocates, didn't learn about laws, best practice, the Individuals with Disabilities Act, available related service and all facets of their child's disability, as well as all things school culture related until they HAD to. Because something wasn't right- but they weren't sure how to articulate why it wasn't right. That's how I found myself learning about all of those things and more- when Grey was in First Grade. That is when I started reading, researching, and interviewing experts constantly. Even today, as Grey is now a 4th grader, rarely does a day go by when I don't research or read or think about this stuff. (I don't recommend that, but that's how much this is in my blood).  After time, and research, and attending Board and budget meetings, I realized that many of the issues I saw in my school, were actually created by the District- they were systemic. After many meetings and attempts at fixes from bottom to top, I realized my advocacy had to be at the District level. I get ignored and/or patronized or disagreed with A LOT. But I keep at it, constantly reminding myself- Intentions don't come truer than mine. All I want is what is best for all children. My inner voice repeats, You are onto something. Something that isn't supposed to be noticed or talked about. And if it was easy, someone would have fixed this decades ago. 

Recently an outside review was done on my District. You can read it HERE. And the data showed that the things I have been talking about for years was the truth. And it was validating and heartbreaking to read. My husband and I attended a School District Board meeting to hear the Special Education Department summarize the review. When the summary was over, (almost FOUR hours after the meeting started,)  I felt like someone had replaced my stomach with a bowling ball. I thought certainly the summary would share- "We now realize XYZ, which is clearly unacceptable. We need to do better. This is how we will come up with a plan. It won't happen overnight, but it WILL happen." Instead it focused a lot on what they were doing right. Anyone who knows me knows I'm a optimist. I also love to celebrate things going right. But right now, with significant Civil Rights being violated, is NOT a time to celebrate. It's a time for accountability. A time to rebuild. A time for honesty. A time for reflection. It's not a time to celebrate. I felt like they were at a party and I was at a funeral. 

So my husband and I began crafting a message, no more than 3 minutes per the rules, to share at the next meeting. We read and researched and wrote and rewrote. And then we showed up. Sometimes all you need to do to change the world is show up. A bunch.


Right before the meeting started. Date night, at a Board meeting.



I am so proud of Michael. Imagine how much faster the world would change if these seats were filled with parents who want the same thing. To watch it, click HERE and fast forward to 1 hour, 8 minutes in. 




And here are my words. I would be honored if you would watch. My new favorite words are Inclusion starts with me. Ask yourself, how can I use my voice and my circumstances and my environment to fight for inclusion of every form? Inclusion matters, for all kinds of kids. Kids like Parker who have autism. Kids like Coco who don't. When everyone is invited, everyone wins. This is our friend- she goes to therapy with Parker one day a week. She is teaching Parker so much, and Parker is teaching Coco so much too. 






Inclusion also matters for people like Guy. An amazing 12 year old with more wisdom than most adults. 

Guy uses a speaking device like Greyson. And he made my whole day with this message. It gives me fuel to keep up the fight. But I'm looking for a few good women and men to join me. Advocacy seeks us out, in situations we may originally know nothing about. But our gut feels an ache of needed change. That's the sign that advocacy is choosing us. Will you answer its call?