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 

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. 


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 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.

Wednesday, April 12, 2017

The Beauty of Same and Different- a book explaining autism

I made an audio book version of the book I read to Greyson's General Education classroom earlier this year; The Beauty of Same and Different. I would love for you to share it with anyone who will listen. It's an important message, and together we can dot the world with different awareness. The more we do, the easier it will be to connect the dots.

Much Love,

Monday, April 10, 2017

Every Voice Matters: a statement to the school board

I've felt a purpose and a drive in my life that feels so much bigger than me. When I stop and start to process I think- WHAT ARE YOU DOING?! But I don't think I'm supposed to think about it that hard. I think I'm just supposed to listen to God's nudges and work hard with truth, love and strength as my guide.

Let me explain, let's go back to the beginning of the year. I was at a budget meeting for our local school district, Fresno Unified School District. Fresno Unified has received a $225 million dollar bond- it's called Measure X. The whole community is welcome and invited to these meetings to give input on what they would like to see done with the money, but I don't usually see any other parents there. When I talk about attending something like this, parents usually say, "Well, I didn't know about it." Here's the deal- you have to read the weekly letter sent home, and listen to the sometimes numerous voicemails the school sends out. They usually inform us of everything. The twice a month school Board meetings are also open to the public. Attending those meetings has been eye opening to me. It's shown me that Special Education will not get the attention it needs unless it is asked for. It's empowering and scary all at once.

While at the budget meeting, I brought up the fact that my son's classroom is a portable unit approximately 100 yards away from the actual school. This is something that I have been talking about for over a year, and something the previous bond measure was supposed to fix, but never did. At this meeting, my request was that some of the $225 million of the facilities bond measure be used to replace these classrooms. And as I spoke and shared these words, my voice cracked as I thought about the mental and social implications of segregating kids with special needs. It's so hard to be a kid in ways us grown ups barely remember. We just want to fit it. We don't want to stand out for the wrong reasons. We don't need circumstances that makes life harder. I thought about how I would feel as a general education student- seeing kids that act different being kept far away from school. I would be a little scared of these kids. I would assume they NEEDED to be kept separate. Maybe they are bad? Maybe what they have is catching. Maybe it's better for them to be separate. It's obvious we are not the same.

I couldn't be silent anymore, but I was scared to speak up. A few days later I was driving and fully absorbing all the feelings I had about this classroom separation. I started to sob. "I've got to fix this" was all I could think. HOW?! I asked me. It's a big district and you are one person. It doesn't matter- I told me. Stop thinking about the outcome and start thinking about simply doing SOMETHING. It doesn't matter if it doesn't work. It doesn't matter if no one listens. It just matters that you DO SOMETHING when you see something that isn't right. Don't you want to teach your children to live with integrity because it's the right thing to do? Not to live with integrity -ONLY if it is received in the way you want it to by others?

So I began to draft a statement to make at the next School Board meeting which was occurring a couple of days later. There is a portion of every meeting where any member of the public can speak for three minutes. I planned my words with the precision of a surgeon. Here are the words I shared. Some of the names/details are being left out for privacy.

Good evening President, Members of the board, and Superintendent: 

My name is Chrissy Kelly, and I'm the proud mother to my seven year old son Greyson. Greyson attends an autism 1st-3rd classroom with seven other students who require individualized curriculum. Autism is a neurological disorder that affects brain development. Children with this disorder have varying degrees of difficulty with communication, behavior and socialization.

I'm here to request the equal treatment of students in Special Education within Fresno Unified. We are not always included in school events. There is significant work that needs to be done to implement meaningful inclusion with fidelity. Most disturbing is my son's physical classroom is an old portable unit, approximately 100 yards away from the school. There are no general education students that attend school all day in these portables.

I'm here to bring this matter to your attention. The segregation of children with special needs is a violation of IDEA- The Individuals with disabilities education act, a federal law that ensures equal treatment for all students with disabilities.

Greyson's classroom is cramped and lacks much natural light. The floor is soft in some areas and unstable. When it rains, the students with autism cannot travel to the cafeteria for lunch. The actual school is approximately a football field away, which is too far when the walkway is filled with puddles. On these days, the students remain in the portable units all day. Having special needs is already an isolating condition, and having autism makes socializing difficult for these students. These children do not need physical segregation added to their struggle.

I urge Fresno Unified to fast track construction to create new and appropriate facilities for these deserving children. These students with autism are educated in these segregated portables from preK to 3rd grade. That is a total of 5-6 years. This is simply not acceptable, and is a violation of federal law and equal protection. Furthermore, please be aware that moving the children to an alternate site will traumatize them, as an autism diagnosis demands consistency and routine.

I understand the use of these portable units was born out of necessity several years ago. But now it's time for change. While these children have spent six hours a day in a portable classroom, three multi million dollar swimming pools have been built by this school district. I am not asking for extras. I'm asking for basic facilities that serve the most fundamental needs of these children. 

This Board consists of senior members with institutional knowledge of the system, and more recently elected members who collectively have the opportunity to change the daily lives and educational direction of these deserving children. 

I implore you on behalf of my son Greyson, who has taught ME far more than I could ever teach him, and for all the other children with autism who don't have the ability to advocate for themselves. Please, do the right thing and construct appropriate classrooms for these amazing kids. 

I was scared, but I did it anyway. And really, is there any other way to live? I have a voice that I cannot take for granted because my sons' were not given that same voice. I speak for them, and for anyone that needs it. I've yet to get a concrete answer from the District on how this is going to be fixed, but I haven't let them forget about these kids. I will not give up. 

The truth is, Special Education needs the same collective movement given to other Civil Rights issues, and I must do my part. Sure, I can make sure my boys are taken care of. I can do what I can to make sure they are treated fairly and given an appropriate education, but if the rest of the Special Needs community isn't taken care of, I'm not really helping the cause as a whole, and then I'm actually not helping my boys. 

Let this be a reminder, change is slow, but your voice matters. 


Tuesday, March 7, 2017

stuck in a moment

As I sit at my kitchen table and type, U2 is playing in the background. A band that played throughout all of my college years. All five years to be exact. And no, I didn't become a doctor in that time period. Or even get my Masters. I just took a really, really long time to figure out what I wanted to be when I grew up. I'm still trying to figure that out. There have been twists, and turns and numerous reinventions along the way. All of them leading me home to the me I think I was always meant to be.

Tonight these words struck me with force...

You've got to get yourself together
You've got stuck in a moment
And now you can't get out of it

Don't say that later will be better 

Now you're stuck in a moment
And you can't get out of it

(U2 Stuck in a Moment You Can't Get Out of)

It's scary how easy it is to get stuck in a moment. I like to tell myself, "Make sure you don't turn your moments into forevers. They are only moments." But when you're actually IN the moment- it feels like a new and awful forever- doesn't it? I mean- only when it's bad and hard and sharp and yucky. "Wow. This is my life and it is awful, and I just can't do this." I think. And minutes or days later, I realize that awful has come and passed. Or maybe it didn't pass- maybe I just learned to live with it. Replacing extra joy to counteract some pain. Finding gratitude amongst the pieces.

"Chrissy- I wish I was more positive. How do are you grateful for the hard things life gives you?" I am asked a lot. Here's the thing my friend- I don't START there- at gratitude or happy. Oh goodness no, not ever ever. I need time to percolate, to process, to figure out how I feel about even the smallest of things in life. And ABSOLUTELY the big things. It's part of the reasons why I must write- it helps me process this crazy and chaotic always processing brain of mine. Sometimes the initial info my brain sends back is rooted in fear and loss. I have to work through that stuff and figure out what I should keep, and what I absolutely need to declutter. I work like mad to color code and alphabetize my thoughts into things I can do something with. I am hard wired to be solution oriented. Glass half full. But it's still a process of getting there. I believe that with the proper guidance, almost anyone can get there. But they have to want to do the hard work.

But sometimes, mistakenly- like U2 says, we actually do get stuck in our moments. It scares me how easily it happens, and sometimes I don't even realize it until I'm on my way out.

I looked at my camera sitting on my counter a couple of days ago, and it looked like a stranger to me. I used to bring that thing with me everywhere. Truly, everywhere. Random real life pictures are my soul food. And one day- months and months ago- I stopped feeding that part of me. I figured documenting moments on my iphone was enough- and it is, if documenting was all I was doing. But using my real camera, selecting focal points, adjusting lighting, experimenting with angles- it feels like making music if I could play an instrument or sing. It feels like coloring. It feels like dancing. I used to do photography professionally- and I didn't feel those good feelings when I took pictures for people. But I absolutely get them when I photograph everyday messy, imperfect, real life.

Somehow between then and now, I got stuck in a moment. But the good news is, most of our moments we actually can get out of. I dusted off my friend, and my fingers started to come alive again.

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They are obsessed with this train at our local mall. They both sit in their own cart. No sharing.

The weather has not been stuck in a moment. It's been all over the place. Hot one day...

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Gosh I love details. Kids help people notice details. Especially kids with autism. And cameras pay attention to them too.

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Farmer's market fun

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And then life turned cold and rainy and I loved it.

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It was drizzling and cold and they didn't care a bit. I hate to be cold. I'm realizing that most of my favorite parenting moments were ones that initially felt cold and inconvenient and messy or something not that preferable.

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Alone time with Parker

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He LOVES letters and spelling out words

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Pay attention to the details, for they are your life. Are you stuck in a moment? I give you permission to get out. Thank you for looking at my pictures, and hanging out with me.

Much love,

Tuesday, February 21, 2017

status quo

I love chatting with you. I don't have a lot of words in my head or even a topic, but it's been too long, and if I go too too long- I get blocked. Like constipation but with words. We're all grown ups here- we can admit we poop- right? Or is that something grown ups aren't supposed to talk about? I forget the rules. And when I remember them, I'm constantly breaking them anyway. Oh well, at least that way I am guaranteed to amuse or offend you.

I've got pajamas on, and I am happy. I guess content would be a better word. Life is easy, status quo. (Please life- don't jinx me for saying that. I'm enjoying this coast). 

Some scenes from everyday life.

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Chocolates from my dad. My first Valentine. For the past 35 or so years, he has bought me, my two sisters Lisa and Katie, and my mom each our own box of chocolates from Merbs in St. Louis. Now he sends mine from Missouri to California. He's a pretty amazing guy.

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How we roll at Target. Canadian friends- I heard you don't have Target. My condolences.

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It's been so rainy here lately. And I must admit, I love it immensely. I love it because of how the air feels- crisp and clean and full of possibility. I love the smell of wet grass and pavement. I love the sound of rain on rooftop- both my home and car. I love the rain because it is a full sensory experience. And I love it because we need it here in the Central Valley of California.  In Fresno County we grow over 350 crops, many of them grown nowhere else in the nation, at least not commercially. 99 percent of the raisins in the nation come from Fresno County. We are also know for our nuts, peaches, plums, nectarines, apricots, citrus and figs. 


So often learning sounds so much like pain, that we fail to recognize anything but the pain.

When Parker is reading new words that he's learned, and sitting nicely in his chair and paying attention. That's not learning. That illustrates what he HAS LEARNED. It's when the seeds bloom. It feels good and productive.

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The real stuff is the in between. When he doesn't know the words or activity or lesson. When he doesn't want to sit. When he is frustrated and throws things and clears a table with one swoop of his arm... But then he settles and does it anyway. Imperfectly.

THAT IS LEARNING. Sometimes when I hear him screaming or yelling out of frustration during therapy- I think- "that sounds just like learning."

The same holds true for us. When we are happy and it's easy and everything is working- that is the blessed part of our life called cruise control. The unfortunate truth is, many of us miss those seconds or minutes as the pass through. And the easy times always pass.

But when we are frustrated and nothing makes sense and we are so damn uncomfortable, that's when we learn, and that's when life changes shape. The more important the lesson, oftentimes the more uncomfortable. Sometimes you must ask the pain, "what are you here to teach me?" And then open yourself to the answer. 

And remember, sometimes pain is just a stop on the way to change.

It's definitely one of those things that's easy to remember when life is good and impossible to remember remember when life is hard. 

Thursday, February 9, 2017

changing the narrative of special education

Today I had the opportunity to present a topic extremely near to my heart to the head of Special Education for Fresno Unified School District. Fresno Unified is the 4th largest school district in California. There are about 75,000 students in the district, with approximately 10% of them being students with special needs. So much needs to happen to change the narrative of special education within Fresno Unified, and I need to be part of the solution. Special education needs the same kind of collective commitment given to issues of other civil rights.

nar·ra·tive ˈnerədiv/
noun 1.a spoken or written account of connected events; a story.
synonyms: account, chronicle, history, description, record, report, story

I want to change the story that is told about children with special needs. Instead of "different, separate, disabled", I tell a tale of "same, belonging, unique". Same group of individuals, but two incredibly different stories- it's simply a matter of perspective. I want to live in a world where everyone matters. My son is educated in an old portable classroom about 100 yards away from the actual school. There are no general education students also educated all day in these portables. Special education students cannot be segregated, and I must speak up for my boys, and for every child that can't say, "please, make sure I belong."

My two amazing boys with autism changed what 'special needs' means to me. They have opened my eyes to the strength, tenacity and spirit it takes to navigate a world that doesn't always make sense to them. They remind me how unique they are, and they broaden my perspective of the entire world and the people in it. 

They show me that we are also the same, my little buddies and me. We want to be successful. We need to feel valued for who we truly are, and we need to feel like we belong to a community. Belong....I say it out loud and it sounds like music to me. We all need to belong to something that is bigger than we are alone.

So, here is an adapted version of the information I shared today. I want to share it with you. If you believe your school needs more inclusive practices, don't be afraid to speak up. Or be a little afraid- like I was- but do it anyway. (Another lesson I've learned from my Greyson + Parker.)

What is inclusion?
Inclusion is educating special education students to the maximum extent possible, in age-appropriate general education classes with high quality instruction, and interventions and supports so all students can be successful. Inclusion is more than a set of strategies or practices though. It is an educational orientation that embraces differences, and values the uniqueness each learner brings to the classroom.

Why is inclusion important?

•The benefits of inclusion for students with and without disabilities have been well researched and well documented.

Inclusion leads to lower rates of suspension and drop out, and to higher rates of employment.

•A school’s job is to prepare ALL students for the real world, and the real world doesn’t have separate neighborhoods, jobs and communities for those with special needs.

•It's a civil right, protected by Federal law, and the socially just thing to do. 
Individuals with Disabilities Education Act (IDEA) states that children with disabilities must be educated in the "Least Restrictive Environment" (LRE), and to the maximum extent educated with children who are nondisabled.

Shared Vision:
Fresno Unified school district needs to have a shared vision on what inclusion is, and what it will accomplish for all students. Educators and parents will work harder to accomplish goals when they are stakeholders in the process. 

Schools or entire districts can create an Inclusion Team Task Force. Educators and stakeholders from multiple disciplines responsible for creating a foundation and implementing meaningful inclusion. Anyone with insight into special education could be take part, including but not limited to general and special education teachers, Speech Therapist, Inclusion Specialist, school principal and parents. Ideally, the task force would be comprised of professionals in the public and private sector in order to increase the range of experiences in the collaboration and to ensure fidelity. 

An Inclusion Team Task Force could create a framework of inclusion policies and procedures that can be individualized per student. A shared vision, and working policies will also give students more consistency with inclusion from year to year, regardless of their special education or general education teacher. 

The kids who aren't able to follow common core at the general education pace- the ones who aren't labeled as having "high functioning autism" are getting lost in the system. Amazing and bright children like my son, Greyson. Some have had no exposure to general education classrooms for up to four years. We need to do better to make sure these children are general education students first, and to ensure that practices like "Least Restrictive Environment" under the Individuals with Disabilities Education Act is being followed. Because right now- it is not.

We can’t ask teachers to meet the unique needs of all students without also giving them the tools to do so. All educators would benefit from training on:
Successful inclusion methods and strategies
The most basic information about the disabilities they will encounter 
Behavioral intervention based strategies and social and emotional supports 
Universal Design for Learning (UDL). This is a proven and effective framework that guides the development of flexible learning environments that accommodate individual learning differences which increases access to learning by accommodating ALL learners.

This training should be mandatory and the teachers should be paid for their time. 
General education teachers themselves have reported that they lack adequate preparation to teach children with moderate to severe disabilities in inclusive settings. When teachers do not receive adequate information, both teacher and students fail. 

Inclusion doesn't occur by osmosis- It is more than a student sitting in a general education classroom for a set period of time. Proper planning is imperative for meaningful inclusion.
Special education and general education teachers need time to collaborate to create adapted curriculum when necessary. The special education educator would take the lead in adapting and modifying, but it's imperative both educators feel ownership in the child's education. Teachers must be compensated for the additional work load extensive planning creates. 

Inclusive Culture
Inclusion is not just a special education term- it’s a term for ALL students. 
The entire District, including key administrators and all school sites must treat special education students as equal and valuable members of the school community, in both words and in actions. Right now the Fresno Unified special education website says, "Each child in public school in California is a general education student first". But those are only words. It's not true in action.

Special education students should be invited to participate in clubs, they should be a part of all school events, and they should be invited on the same field trips at the same time as their general education peers. Special education students should eat lunch with their general education peers. The special education classrooms should be integrated within the heart of each site campus. This is imperative because it disallows segregation and it allows faster and easier transitions between classrooms. 

The entire school should be adapted to be inclusion friendly. Just as schools would use brail for students who are blind, children with autism need visual supports and sensory tools in all common areas including but not limited to the library, playground, bathrooms, cafeteria, motor and resource rooms.

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Inclusion in the classroom:
“Positive attitudes, strong partnerships between parents and educators, use of appropriate interventions to address students’ needs, and meaningful adaptations and modifications to the curriculum are considered important elements for inclusive programs to be effective”. 

Successful implementation of inclusion requires commitment, creative thinking, a growth mindset and effective classroom strategies.

At the beginning of every year, every eligible special education student should be assigned a general education teacher, and a desk in the classroom so they aren't visitors. 
Inclusion is about interaction and imitation. A time when a child should be coached to follow a sequence of behaviors in situations that are academically relevant. The child with disabilities needs to be given opportunities to participate in the lesson and interact with peers in ANY area where they may possess skills that are on target with their general education peers. It's important that the inclusion opportunities are in line with a special education student’s skills in order to be successful. 

Not doing inclusion is bad. But doing bad inclusion is worse. 

Inclusion should be evidence based, while using a variety of differentiated learning techniques (Modeling, Naturalistic Intervention and Peer Mediated Instruction Programs). 
The classroom environment is an important factor in inclusion. There should be clear, designated areas for instruction with developmentally appropriate center names. There should be numerous visual supports throughout the classroom and any shared environments. All students will benefit from a classroom schedule and visual timers to indicate transitions. 

The US Department of Education recommends Co-teaching as an effective tool to use in the inclusive classroom. This is a teaching relationship in which general and special educators share responsibility for planning, delivery and evaluation of instruction for a heterogeneous group of students. These teachers use techniques which allow students of varying abilities to achieve their potential. The program utilizes behavioral strategies such as: schedules, fluency-based practice, generalization scenarios, peer-based modeling, video modeling and scripting to help develop skills in multiple areas.

Here are some results of research done at schools in Southern California. The data looks at students with autism who would have formerly all been excluded to separate special education schools, but were now randomized to either an inclusion classroom, or a special education only classroom. All special education teachers co-taught with general education teachers in the inclusion setting.

The graph shows the average change in standard scores between initial and subsequent administrations of the Woodcock-Johnson achievement tests between first and sixth grade, and examined reading, math and writing. The Special education students in an inclusive school results are shown in blue, and special education students in self-contained schools are in yellow. 

As you can see by the graph, the increase in standard scores for reading and math were tremendous for the special education students that were in an inclusive classroom. Students who remained in segregated schools not only did not improve, they got worse.

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When it comes to inclusion, there is no one size fits all. Full time inclusion is not academically appropriate for all children with disabilities. My second grade son with autism needs to also spend time in a small classroom, free of too much sensory stimulation with one on one instruction. There are numerous things he needs to learn in much smaller steps than what is being taught in second grade common core. It's key that inclusion is as individual as an IEP.

And for children that cannot leave their classroom, or to create social and language opportunities for every student in special education, reverse inclusion is an effective intervention tool that involves bringing several general education students out of their classrooms for short periods of time to interact socially with students with disabilities in their self-contained classrooms. These interaction opportunities are provided when the students are involved in a wide range of activities conducted in various settings. Program success depends on: 1) proper recruitment and preparation of students for the program; 2) effective scheduling of interactions; 3) identification and selection of appropriate activities; and 4) the development of measurable program goals. 

At the end of the day, what is important in Special Education is what is also what is important to ALL children. Special Education students need to be given access to the tools they need to learn. They need to be evaluated and taught based on how they learn, and what makes them tick. When they aren't getting it, we don't quit and say- "Well, we tried." We say, "What other way can I teach this same concept based on what this learner needs?" Most importantly, students with special needs must know they are a valuable part of their school, and they need to feel like they belong. In order to feel like they belong, they need to be treated like they do. 

So, let's work together and build something great for these children.