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 think.

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? Hello Sam) and 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. 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 forget to mention- my son's expressive 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.
_____________

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

Tuesday, April 18, 2017

heaven on earth

We haven't been to church in a year. Maybe longer. Shew. That feels really bad, and really good to tell you too. I still have a relationship with God, but I currently visit him outside of walls, until I can find a place that feels like home. 

I find him easily in the winding electric green grape vines just 
starting to grow and stretch across our house. I find him after a 
long walk, when my thinker finally stops thinking. I find him with 
each rise and fall of my boys chest as they sleep.

This post is not so someone will suggest that I try their church. I just want you to listen to me with your feet tucked under your legs, with your phone away while you look deep into my eyes. I just want someone to care that I care about these things. And even better if you care about them too.

I'm just a few years into this autism journey, and today I am exhausted. Not because of the autism part, but because of how hard it is to feel like you are sometimes fighting daily...at school, at church and in the world for basic things others seem to get automatically.

I am so so tired. And today I want to give up. (Hopefully I'll feel differently tomorrow). Or I will find a way to move my entire family and our village to an island where there is only sunshine, therapists and me. (And sugar please.)

Raised Catholic, I attended Catholic church on and off for most of my life. I went to Catholic school growing up too. It was wonderful and safe and ideal, but not at all diverse. My mom was the driver in our church attendance. On occasion, my Dad came along as a favor to her. I think he struggled with similar feelings as I do. Who am I in this world of religion, and where do I fit in?

So many churches seem to be selling a different God. Yet God is the same good soul I've always known him to be. I imagine he has a deep and perfectly loud laugh. His eyes crinkle in delight as he watches us when we are happy. He also feels pride as our chest rises and falls as we sleep. He feels pain when we hurt too. He is everything.

A little while back we started going to a Christian church. It felt practically scandalous for this Roman Catholic. I cannot deny on my first trip I felt a peace overcome me that I had never felt before. The music was loud and it's vibration penetrated my very weary soul. The song, "Amazing Grace" brought tears to my eyes. There was community and people there loving and caring about the same thing. Isn't it so good when you find people who care about what you care about?! 

People came as they were- jeans- or motorcycle jacket or whatever. I think I liked that, although I wasn't sure. It's hard to unthink years of being taught something (we do not wear jeans to church!) The out loud Jesus love and amens were kind of funny. Christians love Jesus LOUDLY. Catholics love Jesus quietly, and only out loud if the script calls for it. The amen'ers made me giggle. (You go amen'ers. I like your passion). A lot of the talk was the Bible. It was in a new, unusual and interesting format. I loved how the preacher could connect the Bible to our daily life. I began to read an abridged copy of the Bible from cover to cover. I was so hungry to learn more. The Bible was one of the craziest, most interesting books I had ever read. 


But there were also several messages that felt wrong to hear in the church. Like once the pastor said something along the lines of- if we have a tragedy or pain in our life it could be because we haven't followed Jesus the right way. It might be because we haven't forgiven someone like Jesus forgave us. 

Wow. That sounded so much like... punishment. In that line of thinking- my boys possibly have autism because I didn't forgive someone? That makes me feel angry. How is that right to my boys? It doesn't line up with the relationship I have with God outside of those walls. The loving and forgiving God with the crinkly eyes. The one who hurts when we hurt.

When we went to the Catholic Churches here where we live, there were no Sunday schools, and one of us inevitably had to stand in the vestibule with a wiggly, running, boy while listening to the sermon over the sound system. We would leave there stressed and exhausted. Church should fill you up, not leave you feeling spent and counting down the minutes until you can leave.

I loved that we could drop our children off at Sunday school, and they were loved on and played with so we could focus on the word of God, free of distraction. After an OK from the people in charge, we put both boys in the preschool aged group at the Christian church because it was more developmentally appropriate for them. Parker was three and Grey was five. There were toys and snacks and singing and it was all right up their alley. Those of you with kids know it's hard to leave your babies with strangers the first few times. But when you have a child with Special Needs, it can feel impossible. That slight underlying fear is sometimes replaced with terror. We are taught to listen to our gut, yet our gut often screams- Don't do it. They will not be ok. The people in charge will not know what to do. But we did it anyway, (as we often do) and it was worth it. 

One Sunday about 5-6 months into our church journey, we went to gather the boys up after church. My eyes darted back and forth across the room scanning for my two. I see Parker but I don't see Grey. Someone approaches us and lets us know they had moved Greyson into the Special Needs room. 

My hands begin to shake. What happened to cause this switch? I wondered. Did he hit someone? Yell too much? Why didn't they ask us if this is what we wanted first? Why wasn't this a discussion- not a decision? Sometimes I forget that my boys have Special Needs- but it seems like the world will never ever forget.


As we walked down the halls my mind continued to race. Why would he be happier somewhere else? Do they mean they would be happier with him somewhere else? 

"Was everything OK? I asked Did something happen?" "Oh no, we think he'll just be happier here", I was told again. I ached for the fact that someone could just take Greyson to another room several hallways away. Of course he would go willingly. He is taught he has to do what adults say. I ached because on top of having these hard life things to deal with- most people are too afraid to speak honestly and directly to me. It makes the world so confusing sometimes.

We enter the room and I force on my "I'm fine" face. I have to wear that mask a lot. I go overboard- eyebrows raised and huge stupid smile. I want to burst into tears. Greyson is the only child in the room. There were two grown ups in wheel chairs around a half circle table. Greyson is sitting on the floor, quietly digging through a jar of cars. I get down on his level and try to get control of the tears that threaten to escape.

The woman here have experience with special needs, we were told. They walked us through all the tools they had- Picture Exchange Communication (PECS), and schedules. They told me I could also bring my own schedule for him. The ladies in charge started asking me developmental questions. I know their intentions were pure and they just wanted to understand him better so they could take the best care of him. But it felt like an assessment, an evaluation. It felt like school or a doctor and stress and the rest of our entire life that I hoped we could escape for one hour every week in church. I want one place in my life free of these grilling questions, dissecting how and why he is different. 

Dear world: I just want you to know under all these delays, under speech that is so difficult to understand, under sensory processing struggles and whatever other terms used to describe him- He is a perfect child of God. He is a kid. He loves cars. He likes to eat goldfish crackers. He doesn't like to share. He likes to know what comes next. He is so lovable it hurts my chest.

I was exhausted. I didn't want him to use PECS at church. We were in a stage where learning this kind of stuff was a chore to him. He doesn't know how to zip his jacket, he will not understand Jesus died on the cross for us. And trust me, my boys know Jesus in ways people without Super Powers can't fathom. 

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Parker talks to this Jesus statue all the times. He even listens. 


I didn't want to make up a schedule or bring pictures or laminate and Velcro. I already have to all of this stuff for school. I just wanted to be a mom who dropped off her kids so she could go chat with God. And Grey just wanted to be a kid who could play with toys and follow a predictable routine. 

When Church shopping, so many well meaning folks say to me- "We even have special needs Sunday school." That is not a selling feature to me. There is no Special Needs section in Heaven, of that I am certain. All the kids belong together.

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Jesus said, "Let the children alone, and do not hinder them from coming to Me; for the kingdom of heaven belongs to such as these."

All the children. No labels needed.

When typically developing children are mixed with Special Needs children everyone wins. We are all better humans when exposed to people who are different than we are. We learn new ways to think and be and act and view the world. This Catholic school girl was in for a shock when I moved from Missouri to Los Angeles when I was 25. I learned so much from people nothing like the ones I grew up with. I learned about diversity, and I am better, more empathetic, more passionate today because of it.

Special Needs kids may also be able to learn appropriate play, communication and social skills better from other children than from an adult. And I can tell you that my two boys teach me more about the world and God and struggle and hard work than all the adults in the world. They offer so much to the equation too.

So often children with Special Needs are frequently segregated. At school, in social situations, in sports, in the community, and in life. It can be lonely and isolating for the children and also for the parents. Church should not be one of those places. I think church should be a place where everyone is welcomed in communion together. The teachers that are comfortable with the Special Needs kids can help coach the ones that are not. I know it can be scary at first, heck I when I realized my firstborn had autism I was so scared I was going to do something that would really irreversibly screw him up. What do I do when he is flying off the handle screaming? What do I do if he starts throwing things? He felt like a grenade that might go off at any minute. But I soon realized that in the end, he is first and foremost a kid. He needs toys and boundaries and love (and sugar. Like his mom).


But he does not need a Special Needs room to go to at church. Especially one that doesn't have any other children in it. He needs to go to a room that reflects the real world. We do not go to a Special Needs grocery store. We do not live in a Special Needs neighborhood. We do not live in a Special Needs house. Which is good, because there is no Special Needs section in Heaven, and I'm just looking for a little slice of that Heaven here.