Friday, August 11, 2017

back to school 2018

I realized I had lost my moxie.

How did it disappear? Can I pinpoint the day? Was it all at once or little by little? I sit here and ache from it's loss, yet grateful for the shocking realization. It's been months since I last felt that spark of unbreakable spirit I know is somewhere inside my soul. Since I looked in my mirror and said- "yes, that's her, that is me" and felt at home. Maybe at least knowing it's gone, is key to getting it back.

Moxie- ˈmäksē force of character, determination, or nerve.


What builds it? There is no exact recipe, but I do know it's born from struggle and dirt and pain and triumph. You can't really get it from watching reality TV and retail therapying (DAMN.)

We are approaching the end of Summer. School starts in just three days. I think back to all the Back to Schools I experienced as a child. New Uniforms, back packs, and lunch boxes were purchased. My Strawberry Shortcake lunch box was one of my favorites. Unfortunately it didn't smell like strawberries, it smelled like cool metal, stale PB+J and orange peels. We would patiently await to find out if we were getting Teacher A, or Teacher B- there were always two options per grade in the St. Louis Missouri, Catholic Schools I was raised in. I would carry my new supplies- new pencils sharpened with pride, brand new beautiful crayons aching to color all inside a shiny new pencil box- so excited to start fresh each year. The night before school started I could never sleep I was so excited.

Some back to school- "Get to Know Me's" I made for the boys teachers, aides, and school staff. It's really scary to send your children into the world when they struggle to communicate. Anything you can do to ease that fear and make the transition smoother, the better.

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We don't model please or thank you, because those are hard words to learn for learners who struggle with language. Nouns like "banana" or "car" are easy- they are associated with something tangible. Words like "go" or "put" are a little harder- but still belong to concrete concepts. However- "please" is social, not functional, and isn't associated with something concrete. When Grey is frequently told, "please" and "thank you", or made to say it- he starts adding it to every word in every sentence. It took us a year to undo sentences like, "car please, is please, green please."



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Now I'm a mom to two precious, energetic amazing little boys. This is the first year that both boys will be going to school. Our school experience is not like the one I had growing up. Teachers and programs change up until the last minute. We don't go to our home school with kids from the neighborhood because they don't have an autism program.  It takes up so much of my energy- so much so that I can barely write sometimes. It's made me realize that stress eats creativity for breakfast, lunch and dinner. It's crushed so much of my confidence and my soul.

Those of you who are here with me, breaking bread in this sacred space know my heart. I just want what's right. Some of that is short term stuff, like best and current practices in education, appropriate training, open communication. I want my boys to have a method to communicate, and a method to be communicated with. For many kids with autism- pictures + words (not just words) is how to best communicate with them. I want individualized services and Inclusion that makes sense. I want a true collaboration- Teachers know a lot about teaching, and I know a lot about my child.


Lastly, yet perhaps most importantly, I want to big, systemic changes, not just for my boys but for all, and all over the world. You see, the day Greyson was diagnosed with autism-I finally realized that despite countless hours of Speech Therapy, and Behavior Therapy and diet changes and supplements, that I could not change his diagnosis. No matter what I did, I couldn't change the fact that he has autism. So I decided on that very day, "Well, I can't change the fact that Greyson has autism, so instead I will just have to change the world." And I totally thought it would be easy. Ha!

But my mother's heart aches to see a change in hearts and minds and culture showing that ALL students are capable, deserve support and deserve a great educational experience that will lead them to a life of well-being in our community. I want to shatter the implicit bias that individuals with disabilities are less than. I want to dissect the "Us vs Them" mentality of Special Education versus General Education. I want us all to belong to each other, like Mother Theresa said. I want for everyone to embrace that "Inclusion" can and should go beyond specific classroom curriculum and trickle into every breathing aspect of life.

But we just aren't there yet. And some days I'm pretty sure someone crumpled up the map to get us there and then threw it away.

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Well, yesterday, The amazing author Jen Hatmaker created a call to action on her Facebook page. She has a podcast, and was looking to the public to find a guest to interview. It's been something I felt like I HAD to do since the day she announced she would be hosting one. This gal has an enviable spirit, and charisma that pulls you in. She's everything good in the world, and she's the very definition of Moxie. I asked my Facebook friends if they would recommend me to be a podcast guest on her show too.

You guys, I was ABSOLUTELY overwhelmed with the response. It was like I got to hear my eulogy while I was still alive. Hundreds of likes and comments about me. I can barely take a compliment so it was awful and WONDERFUL. You guys said the greatest stuff on earth- about my mothering and advocacy and passion. I remembered for the first time in a long time who I was. It's one of the greatest gifts I've received, and absolutely a God thing. I was feeling at an all time low. It took you and your words to remind me who I am, because I had forgotten. I wasn't a pain in the ass, demanding, unreasonable mother.

I was and am a moxiefull Mother changing the world because it damn right NEEDS TO BE CHANGED. And if world changing was easy, everyone would do it. The truth is, I didn't pick this job for me. God tells me ALL THE TIME, with so many in my face reminders- Chrissy- this job was picked just for you. It will not be easy. However, it is worth it. Not just for your boys but for all whose world's will be changed by your words. There are amazing skills you already possess that you get to sharpen with this task- use those skills and feel alive. There are also skills you don't have now, but if you are open to learning- this will be your teacher.

And you know what? I'm here on earth to learn. Thank you for reminding me who I am and why I fight for what I fight for.

Some scenes from Summer...

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We were 92% water. You can call us cucumbers.


In July, my amazing sister Lisa and her family came from Missouri for a week to visit. It was the best thing ever.

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We love our cousins, Tristin, Levi and Maggie.

And I love my sister, it had been three long years since I had seen her. We are close in heart, but far in distance.

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We had SO much fun. My favorite part is that we got to do regular old life together. She came with me to Speech Therapy, and to where the boys do their Behavior Therapy. We worked out together and ate together and grocery shopped together, and even drank Titos and played Cards Against Humanity together. Like the real, unfancy, important stuff.  Life is so much more doable when you have family around to help carry the load, and do the fun stuff with too.

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One night when I was taking him to bed, Parker looked at me and said, "Maggie".

"You want Maggie in here with you?" I asked, mouth in an oval and eyebrows raised high in surprise. I couldn't believe he was willing and able to share his space after a full day of extroverting.

"Yes!" he said.

And I kid you not, they slept together every night after that. Oh sweet Jesus, my eyes have never seen such a thing. I almost can't speak of it, it was so magical. The first night I slept in there too, afraid Parker might wake up and decide he no longer wanted Maggie in there after all, or afraid he might pee on her! As we were lying in the dark that first night, foot cuddling and giggling (Maggie made sure to get Parker a stuffed animal to sleep with "so he doesn't get scared"), Maggie says to me in her little, perfect, high-pitched five year old voice. "Aunt Chrissy? You are such a wonderful mother to your boys." I couldn't breathe it hurt so good to hear.

While they were here, we all took a trip to Southern California, Hermosa Beach specifically. The place we used to call home before moving to the Central Valley.

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We were one with the beach and the sand and I was afraid I would wake up from this little dream of heaven.

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One morning we saw a pod of dolphins. (Thank you google for letting me know what a group of them was called). Four together, swimming majestically. The entire beach vibrated and I was afraid to blink or breathe- blinded by their beauty and grace. This is their ocean really, and we are so lucky they let us play in it. My friend- I wish you that same level of peace in your life that I felt while watching the dolphins.

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Greyson flaps with the rhythm of the sea, coming in and out with the tide. He has insight to nature and the world that we can't even see. One day when I get to heaven, I can't wait for God to tell me about them.

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From the moment we pulled onto Pacific Coast Highway and could feel the ocean pull, Parker asked for "blue house". Over and over, pointing right, (randomly I thought). "I want blue house!" he said more and more urgently. "Ok buddy- we will find you a blue house", I told him. I had no idea what he meant, until the moment we arrived on the sand. He saw the Lifeguard stand and starting running for it, joyfully exclaiming- "Blue house!!!!!" Little baby lightbulbs. They are always turning on.

My heart, my heart, my heart... Of course they are worth any battle. When you have spent your first 40-something years trying to get people to like you, it's hard to care more about doing the right thing, and getting the right thing done than caring if you like me. At any given moment there's a construction zone in my brain. Maybe I should wear a shirt that says, "Open During Construction. Please excuse the mess."

I've always been of the motto- Hey, let's make friends while we're at this life thing. And, If you are not having fun, you are doing it wrong. This life mottos of mine are not going so great for me at school. I'm learning though. It's my growth spot, and a struggle God has given me to grow. Sometimes I forget that. Sometimes I would like to return this gift like a too small sweater from the Mall.  Thanks so much, God but this struggle isn't exactly what I was looking for. Any other ones you got lying around big guy? 

Sometimes we must boldly look our struggle in the face and say, "Welcome. And thank you. What are you here to teach me?"

Have you lost your Moxie too? Join me in reading Jen Hatmaker's new book, Of Mess and Moxie: Wrangling Delight out of this Wild and Glorious Life. In it she says, "We will endure discouragement, heartbreak, failure, and suffering. All of us. And more than once. And in more than one category. And in more than one season. But we are the very same folks who can experience triumph, perseverance, joy and rebirth. More than once. And in more than one category. And in more than one season. And that? That is moxie."

(I'll give you a moment to feel your chills...)

I want you to look in the mirror and remember you and your moxie too. Moxie doesn't have to be big and sweeping. Sometimes it's just the small things we do, when even the small things feel impossible.

And in case you need this reminder like I often do...

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So much love,

Chrissy


Wednesday, July 12, 2017

All About AAC: why we finally dove in

It felt like giving up.

You learn early on in your autism battle that when fighting a dragon, you don't stop when you're tired. You stop when the dragon is tired. And one thing you never ever do- is give up.


I have two amazing boys with autism. Parker is 6 and Greyson is 8 years old. I immerse myself in their world and therapies daily. My empath personality lets me feel the smallest percentage of their struggle. Even that small part is unbearable at times. It's also that voice in my head that reminds me that I must do everything possible to help them navigate the world as independently as possible. 

When the autism portion of this life journey began, I was paralyzed by the future and the "what ifs" I feared would never come true. The biggest- What if they never call me mom? The thought took my breath away. I couldn't bear to hear other moms at the playground complain about hearing "Mom, mom, mom, mom, mom", all day long.

Just one time...if I could just hear it once, I would pray.

We did two one hour sessions of Speech Therapy during the period of Early intervention, which stopped on their third birthday. We then continued with one hour of private practice Speech each week to supplement what's given at school.

I thought about using Augmentative and Alternative Communication the presented as "AAC" by our ABA therapy program when my oldest was about 4 years old. I wasn't ready to give up on him speaking, so we decided not to really pursue it. After several more years, I thought about it again. My oldest was now 7 and had an additional diagnosis of apraxia in addition to autism. His intelligibility by unfamiliar listeners was about 10%. And I didn't see his language sky-rocketing anytime soon, when he couldn't even try words on for size. It would be like expecting him to learn how to ride a bike- without being able to use an actual bike to teach him.

So I decided then, about a year ago- that I would give up. I would give up on my hopes and dreams of him speaking and having conversations and telling me about his day. I felt like at the very least I was compromising with hope. By this time- at least he could say "mom"- it comes out as "mah". He can request preferred items and food- at least in ways I can translate for others. "Dit mies" are fries and "hah gog" is hot dog. I knew him in ways better than a mom might know a boy who could talk. I knew every sound, every look, every need he might have...or so I thought.

After an AAC Evaluation, our District recommended we use LAMP- Language Acquisition through Motor Planning. I watched every video and tutorial I could on it. I spent hours adding in custom pictures of people and preferred food and toys. I was able to use it to have conversations. But after a month's time- I just didn't like the app, and it just didn't seem like it was going to be able to take him where he needed to go language wise.

He spends 30 hours at school a week, and about 60 waking hours outside of school, so we needed to use a program I was completely sold on, and I wasn't sold on this one. I could go into the reasons I didn't like it- but the truth is- it's a great app, and lots of kids are successfully using it. It just wasn't a good fit for us.

Based on my son's strengths, (he is great at visual scanning, generalization of pictures, and sorting categories) I wanted to trial Proloquo to Go (P2G).

P2G is a symbol-supported communication app that promotes language development and grows communication skills, from beginning to advanced communicators, according to their website. I loved the easy to recognize symbols, the fact that a picture and a word can be put on the sentence strip (head start on reading for the win!), the way they categorized their icons and the fact I could change the grid size on every single page. I went against the District's recommendation and classroom roll out which was heavily focused on fringe words. After much research, I wanted to tackle AAC using a core word approach. I hired an outside Speech Therapist who specialized in AAC to help me customize a program for Greyson. I spent hours tailoring it to be clear and easy to understand and functional for my son's needs.

I started with the largest grid size we could (A few steps above his developmental level) and hid words and concepts (ie- pronouns beyond, I, you, my) as appropriate, to reveal as his language grew. We had a beautiful home screen that encased on core language. This is what his screen looks like today. In just 10 months we've been able to reveal a lot of new language.




From the beginning, I saw how P2G could not only help him communicate his needs of today, but it could also help him develop language. He was finally going to be able to learn to ride a bike- by actually using a bike! 

We focused modeling on core words. Core words make up most of what we say in typical conversation and writing. Many studies across different languages and age groups have found that about 50 words account for 40 to 50% of what we say, 100 words account for about 60%, and 200 to 400 words account for 80% of the words we use every day. (source)


Greyson already had a strong concept of highly motivating fringe words (nouns); his receptive language is great. Words like "fries", and "Lightning McQueen" and "cars" and "trains". But what was missing was an understanding of those harder to understand core words that are not associated with something tangible or "pictureable". Words like "get"," stop", "here", "watch", "can" and "come".  The understanding of those types of words is what will help him develop his language.

How do we get him to understand those words?

We modeled like crazy. We modeled and encouraged elicitation of a variety of communicative functions beyond requesting (commenting, asking questions, protesting, negating greeting/goodbyes). At the beginning we also honored all requests that were reasonable/doable. Ice cream at 9pm- sure! (A pony- not so much). But we did try to honor many of his initial independent requests so that he could understand the amazing power of communication!






We focused on a small group of core words at a time. (Training and core word classroom material found HERE.) Fringe words are highly motivating, and are the glue that helps contextualize what the core words mean.

More recently, I also got my own ipad, and using an app called Dropbox, I downloaded Greyson's specific language on my device. I use it to model what I believe Greyson would say based on his behavior or the setting, ("I don't want a banana", "Can I have chips?" "My Mom looks really young.") Ok, fine- I made up the last one but with a little Botox, it's possible. I also use it to speak for myself. Typical children learn to speak by hearing others using spoken language. AAC users learn to communicate by watching others use AAC.

I created some visuals to act as adult prompts. This way it was easier to remember which core words we were focusing on. I used velcro to attach each icon so they could easily be switched out. I also made a copy for his classroom.











And we made some base conversation starters to help adults model a variety of different ways. Each sheet was location specific. We did one for the kitchen, the front door, and the playroom too. I created specific ones for school based on function as well.

We model in the natural environment, as well as in more structured ones. I'm not afraid to make mistakes or change what I was about to say on the fly. We've started using P2G with my youngest son too. He does not have apraxia, but he does have autism and the language delays that often accompany the disorder.

HERE we are making banana bread.


HERE Greyson is using it to order ice cream



Here are some tips I've come up with that have been instrumental in helping us implement AAC. MLU- is a fancy term for Mean Length of Utterance. Basically- how many words do they use in a sentence. If a child only can label items- "ball", "bird", you don't want to model 5 word sentences. You would start with sentence 2-3 words. "Yellow ball." "I see bird."  

Now Greyson is beginning to use it independently. It turns out, I didn't actually always know what he wanted and needed. Now he can tell me when he is sad. He can tell me he actually wants to ride an escalator, instead of go get ice cream. He can tell me his teeth hurt. All of these are things he has expressed to me all on his own by using his device. It's remarkable to see how far he has come in such a short period of time. We still have a long way to go, but I'm confident with tons of modeling and classroom and ABA support, we can and will get there. 


He even negotiated with me when he didn't want to go bowling.




When I think of language, its like a ticker tape running at the bottom of a screen. As the words come in, we process and assign meaning. If need be, we respond. But with many children with autism- they need pictures to comprehend. For them, I picture language not like a ticker tape but like bubbles, and once they pop- it's impossible to remember and put them in the right order again. AAC gives my son the visual he needs to process and understand language- making it a little more permanent in his mind.

I can't imagine how it would feel to not be able to express yourself. Words heal, they connect, the build, they express, they validate, they request, they delight, they entertain, they express disgust and disdain...I can't tell you how much I love words, and the fact that my boys struggle with them pains me completely. They need to be able to use words to do all those things too. I must teach them.
I can't forget to mention- my son's expressive (spoken) language attempts have doubled since using the device. And he's FINALLY using a handful of verbs beyond, "I want x". All the data says a child's expressive language increases by using a Speech Generating Device- but to actually see it and hear it in our home blows my mind. My only regret is that we didn't start this sooner. 



Other AAC resources:

Praactical AAC

Proloquo 2 Go 

ASHA Position Statement on AAC for SLPs

ASHA Technical Report for SLPs on AAC

Article: Don't Demand Prerequisites-( PECS use before AAC is NOT required).

This is the brand of case we use.

Sunday, July 9, 2017

hodge podge

Happy Summer.

We are sweating through 100+ degree days and soaking up mornings free of getting ready for school in a mad and crazy rush. We still have therapy every morning, but now we don't have to be anywhere until 9 or 9:30. I'm a big fan of the world starting at 9:30. People need appropriate time to caffeinate and to linger in pajamas.

I'm going to share some things I've shared on Facebook, because I know a lot of you smart fellers don't have Facebook, and you may want to see what's going on. Besides, it's time we caught up.

First- here's a tour of our therapy room. Hopefully even if you don't have Facebook, you can view it. I remember first starting ABA. "Just buy some highly preferred toys and some educational toys. If there was a table and chair to sit in, that would be great." I was told. I had no idea how to set up a therapy room. I had no idea what to buy. This video answers some of those questions.

https://www.facebook.com/LifeWithGreysonParker/videos/1697297196964953/


Here's a video of Parker in Speech Therapy. Speech is one of the highlights of our week. Both boys have come so so so far thanks to rigorous and consistent Speech Therapy, including Summers. Parker goes once a week for 50 minutes and Grey goes twice that amount. One session Grey works on language, and one session on articulation for his apraxia. We would go four times a week if we could afford it. Grey has apraxia- which is a neurological motor planning disorder. His brain can't always tell his mouth, lips, tongue, and jaw and corresponding muscles which way to move to make the right sound. We have to rewire those faulty and often inconsistent error patterns. In any Speech Therapy setting I must make sure he has goals to work on sound errors, not just language.

Only a Speech Therapist can diagnose Apraxia.

https://www.facebook.com/LifeWithGreysonParker/videos/1696789730349033/


And a special moment I shared from the other evening.

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My son just went into the kitchen and got me a fork. All on his own. Oh if you could see the replay of his life and see all the work that has been laid down for YEARS to make this happen.

Unless you've been there, you can never fully really understand or even describe the magic of ABA- Applied Behavior Analysis.

"What is ABA?" You google in fear, late at night when they tell you your child has autism and they recommend this intervention. It sounds vague and scary.

ABA is based on the science of learning and behavior. This science includes general laws about how behavior works for all of us- and how learning takes place. ABA therapy applies these laws in a way that helps to increase useful or desired behaviors. ABA also applies these laws to help reduce behaviors that may interfere with learning or behaviors that may be harmful.

But ABA has also given us a life.

My husband and I can go places with our two boys with autism, and we can do things that before felt impossible. We aren't perfectly well behaved all the time (not even close!), but we can do it.

Now Greyson is 8 years old. At 2, he was taught categories. Real life items and then pictures that he had to sort. Things like vehicles, animals, and clothing. He learned "fork" from the real item, and also from flash cards. Painstakingly, day after day for weeks. First receptively (the understanding of language- "hand me fork") and then from a field of three. Then expressively (spoken word- "what is it?" "Fork".)

Then he had to learn rooms in our house. Over and over and over again. "Go to kitchen." "Where is Family Room?"  "Let's see playroom." Then he had to learn specific items in the rooms. "Where is the oven?" "Show me the fridge." "Where are spoons?"

Over and over and over. Repetition. Taking data every single time to look for what's working and if need be, where WE need to alter the environment to make it click for him.

And then following directions, and then two step directions. (Ex- go to your room, get shoes.) It's SO HARD for him to keep more than one step in his mind at a time. And then three. All of it heavy in language- a category that autism + apraxia makes so freaking hard.

And tonight I needed a fork and I didn't really want to get up for the 800th time. So with hope in my heart, I turned to him and said- "Go get mom fork." (We don't waste "please" or "thanks" with him. We are only working on functional at this stage of life.)

And in slow motion, he goes to the kitchen and pauses. I hold my breath. I watch him intently as he opens the utensil drawer. I can see his wheels turning. He walks back into the family room and lays this down in front of me like it's no big deal.

But to me, it is everything.
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Lastly, our Parker- aka "Doodle" graduated from preschool. Last week. I'm so sad to be leaving our magical preschool that I can't write about it. I don't know how I'll survive two in public school. 

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Thank you so much for reading.
Love,
Chrissy

Wednesday, June 7, 2017

Greyson's 8th

Do you remember Summer?

No- not simply the season. The state of mind. The Summer that only kids know and feel and taste and live. Staying out until dark and coming home filthy. Wearing your swimsuit all day some days. Hearing the melody of the ice cream man and FREAKING OUT that I would ask my parents for money and they would say yes, but I would MISS THE ICE CREAM MAN.  Enduring bedtime only so you can wake up and do it all over again the next day.


This evening felt like just a touch of that. (long happy exhale.)



I feel like me. And I wonder what happening between then and now that made me feel so tired and old and not so open to the beauty of the every day adventure. It's so easy to forget to play. It's so easy to forget that much of life is actually- easy. It's so easy to forget to dream. We get so tripped up on the hard parts.

The other day I was at our favorite donut shop, ordering donuts for Grey's birthday. There was a woman there being interviewed for a job. I listed intently as I waited in line.

Interviewer: So, what would you say is your best quality?

Lady: I don't know..... (long silence). I don't really think that way. (more silence.)

(Me- SAY SOMETHING! MAKE SOMETHING UP! COME ON LADY.)

Lady: I guess I'm positive, she finally replied. Not very enthusiastic at all.

Interviewer: What are your dreams in life?

Lady: Like what do I plan or hope to do? Hmmmmm. (lots more of silence.) Woah.

(It's my turn in line and I'm trying to order and eavesdrop at the same time. I am very skilled at eavesdropping.)

Lady: I guess we all start out with dreams, but then life just gets in the way, so we don't really follow our dreams.

(Me: NO!!! Take that back. You can't say that out loud!)

I've been thinking a lot about that lady. Thinking about how:

1. It's so damn hard for many of us to name our best qualities. REALLY HARD. Of course I memorized some qualities that sounded good back in my interviewing days, but I didn't really embrace that way of thinking. It's not even a fact of being humble- it's being waaaay to hard on ourselves. We can be anyone we want to be, so why aren't we singing the praises of the results of our choices? Why are we so hard on ourselves? I'm certain God gave every single one of us gifts. Gifts that we are meant to share with others. Why are we downplaying these gifts? Have you ever given someone a special gift that you put so much thought into, and they barely regarded it with a second glance? Why do we do that to God? 


2. At first I was thinking- She so bombed that interview. But then I was also thinking- what's so bad about admitting out loud that you don't really dream anymore? That's a sad kind of honest. I bet the VAST MAJORITY of us are just making it through the day. I think somewhere along the lines we really do forget to dream. We mustn't ever forget to dream. Otherwise they can't come true. Life can't be all about guilt and bills and traffic and stress and obligation. I asked myself- what is your dream, Chrissy? Think about it in concrete terms. Don't be so bogged down by life and so afraid of failure that you forget to dream.





Tonight I remembered who I am and what I dream of being. I'll let you in on a secret. I usually, mostly, quite often have no idea what I'm doing. In parenting and adulting and life. I make simple things much too complicated. I spend time dealing with feelings and people who just aren't in my own lane. I need to keep my eyes in my own lane, and dole out my energy in accordance to how I want to live and in places that are positive.


I want to tell the truth. I want to stop apologizing for how I parent. I want to do what's right and good. I want to pay attention to the small gifts strewn throughout my day by God. I want to pay attention to my gifts. I want to encourage others. I want to learn all the things that make me feel alive. I want to play and I want to dream.


So today, in celebration of Grey's 8th Birthday- we played.

 photo IMG_5576_zpsebpq3hmo.jpg First he celebrated at school. My lucky 8.

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Then we went to see "ah-mals". The Zoo is one of Grey's favorite places. Fresno has THE BEST zoo.

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I wonder what he dreams.... 


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This is our real life. And so much of it actually IS a dream come true even though it looks so very different than I had planned.

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Be still my heart. When he looks at me, like really really looks at me- time stops.

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This was dinner-ish. I would totally deny that in a job interview though. I'm not 100% sure I would be hired as their mom based on some of my choices. Luckily God already assigned me to this project for all of my life.

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We can learn a lot from the way kids explore, play, get dirty and dream.

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Let's both try something. What do you say? Let's not forget why we are awesome. (Because we are). What's your best quality? You don't have to tell me, but you have to come up with something. I think mine is the way I view the world, and the way I love. I always say that's my blessing and my curse- but I'm going to just focus on the blessing part.

Now that Summer approaches, let's remember to make it more than a season. Let's make it a way of living. And let's promise to make time to play and to dream.

So Much Love,
Chrissy 

Sunday, May 21, 2017

our true north: a stay at Valley Children's Hospital

My phone rings at 2:30am, and my heart stops beating. It is the call I have been waiting for with acid in my throat. With shaking hands I urgently hit accept. 

"Hello! Yes? What's going on?" I yell, oblivious to waking seven year old Greyson nestled in my arm. “They found something on the ultrasound. It looks like his appendix might have already ruptured. They have to do a CT scan to confirm." My husband reports.

I feel like I'm in a dream where my legs won't work, and I'm in danger and desperately need to run but I can't. Except I know I'm awake. "What? Burst? No!" I truly can't process this. My exhausted brain literally 
can 
not 
process. 

He was supposed to just have a virus. I was just being paranoid! He was going to get fluids from the Emergency Room, and then come right home all fixed. This is not the story I had already written. 

But this wasn't the case. And a CT scan confirmed the diagnosis of a ruptured appendix in my six year old son, Parker. I felt tremendous guilt, that my poor little boy with limited verbal ability because of autism had tried to tell us 100 times- "Tummy hurt" for six days straight, and we didn't figure it out. I stayed awake the rest of the night, waiting until I could take Greyson to school, so I could go straight to the hospital. We were waiting for a surgeon to arrive at the hospital to examine Parker, and I assumed do emergency surgery.

This story has a beautiful ending, and I'm so lucky to have this particular vantage point right now as I talk with you. Parker is in the back yard running around with his brother, and the light in his eyes is returning. We found our way back home.

A compass is an instrument used for navigation and orientation. It shows direction relative to geographic points. A compass is how you orient yourself. 

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We all also have our own internal compass that guides us- it's the pull on our thoughts, our actions and our soul. When we follow it, we feel like the me we were always meant to be. That pull is what we believe in, what we stand for, what we do with our time - those are our own norths. Sometimes life is so busy and complicated, that it's hard to feel the pull of our own north. Especially when the magnetic pull from other areas in our life feels so much stronger at times.

But when your child is in the hospital, life suddenly becomes so authentically clear. The love you feel for them pulls you straight to your own north, and you realize- nothing matters but their health, and the love and support from those around you. And all the other stuff, the stuff that doesn't even matter but you thought it did- its fades away in an instant.

We spent a total of nine nights and eight days in Valley Children's Hospital. I remember walking in for the first time. I approached Security and suddenly it was all too real. "I'm here for Parker Kelly," I squeaked out, while tears shamelessly rolled down my cheeks. "He's going to be okay", the kind woman assured me. "They are taking amazing care of him here", she promised.

"How is going to survive a hospital stay? I wondered in fear, on what seemed like a mile long walk to his room, Explorer 1535. This was a boy who it took almost a year of constant trying to even be able to wear a bike helmet long enough to ride a bike. Since Parker has autism, even the simplest things can be unbearable for my boy. I was certain this was going to break his spirit in ways that could never be recovered.

As soon as I walked into our room and was able to hold Parker and cover his face in kisses, I knew we were going to be okay in the end. I just wanted to hurry and get to the end part. 
Walking into the room, I noticed a sign with autism familiar puzzle pieces on it.

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“Does that sign with the giraffe mean Parker has autism?” I ask Michael. “Yes,” he responds. “They had me fill out a form in the Emergency Department, asking different things to figure out the best ways to work with Parker”. I took a look at the form and couldn’t believe it. It had real- Applied Behavior Analysis- the gold standard of autism therapy- things listed. Wow. Someone who did this actually understands autism, I thought. I googled, “George’s Pass”, the words on the sign and as I read, I started to cry:


…Valley Children’s treats more than 300 children with ASD each year. George’s Pass addresses these children’s specialized needs from the moment they enter the hospital until they are discharged. 
Program highlights include:
A George’s Pass icon to identify patients to the entire health care team
Reduced exposure to noisy areas of the hospital  
Individualized tours, education and hands-on activities with iPads and interactive toys
Private post-op recovery rooms (with a door and windows covered by dark curtains) where parents are welcome even prior to their child awakening from anesthesia
Various “Social Stories” composed largely of illustrations to guide the child step-by-step through the hospital experience. 

We were somewhere that understood some fundamental things about my son, without me having to say a word. Without me having to explain autism to every person that walked in our door.  And this incredible program, paved the way to an amazing hospital stay. And as crazy as it sounds- I miss it there. I didn't have to worry about a single thing except for Parker getting better. He is the greatest day of my life in human form. 

Not only did they take exceptional care of Parker, and our whole family, but we also made friends for life. I had the blessed honor of meeting an amazing and inspiring woman, and my new friend Nurse Shelly. George's Pass is her baby, her vision- created in honor or her son with autism. She took a challenge in their life and turned it into something beautiful. Shelly- we love your heart. You are an inspiration, my friend. Our community is so lucky to have you. And guess what- I'm going to introduce you to her on a Facebook live video soon, so we can discuss George's Pass in detail! 


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Parker’s Doctor, the amazing Dr. Allshouse texted us this morning to check in on his little buddy. He was everything a Doctor in Pediatrics should be, and so much more. He's like a Norman Rockwell painting in real life. His own version of Patch Adams.This man’s north is loving people, building relationships, and medicine. Boy does it show.

Our week was full of so many beautiful memories, which by far out shined the pain and stress. Parker did not have to get his appendix removed. This article explains why surgery isn't the automatic course of action better than I can. 

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For a little while there, he was a pretty sick little dude. As a parent, it's such a helpless feeling when you can't make it all better. Luckily, Dr. Allshouse could.

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We got to see the helicopter land one evening while we were out adventuring.


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This is George the giraffe. Whenever Parker sees this picture he yells, "George!" and smiles.

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They have a super cool playroom, where Parker got to be the one to play Doctor. As you can see, this place takes being a kid very seriously. We had fun exploring numerous playgrounds.

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I can't believe how fast those eight days passed. I shared the following words on our Facebook page the night before we left. I cried the whole time I wrote them:


When we first checked into Valley Children's Hospital eight days ago for a ruptured appendix in my six year old son I said, "I will be open to the particular parenting lessons this stay will teach me." I was scared, but I meant it. Since then I've felt sad and scared and happy and so very high (not from the meds. They say those are only for Parker, not for Moms. whatever.)
But not for a second did I ever doubt that we were getting the highest level of care from people who are experts in their field.I feel blanketed with the fact that there are *such good people* in the world, today more than ever. People who care about other people with every fiber of their being. People whose calling is serving others in their most vulnerable of states. People who see a child left by their parents, and then have to call foster care to pick up the pieces. People who see children take their last breath before the life flows out of their body. People who see children with puffy faces from steroids and a bald head from chemo and say- "Yes. I am going to show up for another day of THAT because it is what I was born to do." They've seen all of this in the world, yet they still believe in what they do, and they still believe that love is some of the best medicine there is.
I could share patient outcomes that show that our amazing Valley Children's Hospital is in line with the level of expertise of Stanford (which it is), but as a parent, one thing matters to me just as much. (Maybe even more). It's the way they loved us better. It's the way they took care of my son- my heart- my life- my soul housed in a little, tiny, usually energetic six year old form.
And we felt that love with every interaction. With every PICC line sterilization, with every trash can emptying, with every vital sign taken, with every lunch (with extra cookies- thank you!!) delivered to our door. We even felt it with every freaking beep (After 4,908,788 I stopped counting) of every single machine. We felt it in the "George's Pass" sign outside our door, alerting staff that our Parker has autism (thanks Shelly!) decreasing so much anxiety during our stay. We felt it with every visit from the capable surgeon Dr. Allshouse- sometimes multiple times a day. Here every single person we interacted with loved my son better. They said we can go home tomorrow, and I don't know why- but I can't stop crying. I'm so grateful for the reminder that there are people and places like this in the world.
Valley Children’s Hospital, "Thank you" doesn't quite cut it. But thank you from the entire Kelly Family. We love you too.


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When we get pulled down by the meaningless day to day struggles of life, we simultaneously forget just how lucky we are, until life wakes us up to what really matters. I'm so glad that for at least today- I AM AWAKE. 

We miss you Valley Children's. We can't wait to go back for our follow up. 

XOXO,
Chrissy