Monday, June 18, 2018

much more than one thousand words

I squint my eyes and strain to think of the exact moment it happened. The moment the light bulb went off in Parker's head and he realized what the small black machine I carry can do. For all I know, it may have been years ago, waiting dormant until he wanted to turn thought into action. Last weekend in Hermosa Beach, was the first time Parker ever acknowledged my camera out loud. Not only did he acknowledge it- he wanted to use it.

I want cam-rah, he determinedly exclaimed, with a white knuckled grip that wasn't taking no for an answer.

I used to do photography professionally, and when I started, I purchased the mack daddy of cameras at the time; a Canon Mark ii. I don't know what that means in terms of bells and dohickeys, but I know the lens sees life almost as beautiful as it actually is. I love this camera, and its ability to remind me of the beauty my life already contains. I no longer do portraits professionally, I prefer to funnel that need to create into writing and taking pictures of our life to share with you here. My favorite pictures are no longer perfectly arranged - smile and look here, portraits. They are of a perfectly mundane Monday. A bubble bath.  A trip to get ice cream. Perfect square little boy feet. The everyday goodness that we sometimes forget to notice. My camera reminds me to notice, and wakes me up to the stuff that means the most to me.

He can NOT use my camera, was my first thought after his request. He will get it sandy and break it and I'm not shelling out thousands of dollars to replace it. Nope. Big fat nope. But he kept his hands on it stubbornly- and in the tug of war I realized- why not? It's already sandy, and so what if he drops it? It will just get sandier. At first I helped. I made sure the strap was around his neck, should he decide he suddenly didn't want to hold it anymore. With my finger over his, I showed him how to click the shutter.

And like me, he was hooked. Each click emits a vibration satisfying a need you don't know you have until you are hooked. It's the same feeling you get when you are vaccuuming and can hear stuff coming up. (Clearly I can't be the only one who loves that sound?)

Over the past week, Parker has taken hundreds of pictures. I've tried to give him my old Canon Rebel, only to have him exclaim- "I need big camera." He's already a camera snob. Good thing he doesn't know Canon now has a Mark D IV.

Photography is all about lighting and perspective. And Parker's point of view is unique and beautiful. There are no great secrets when it comes to photography, other than you have to be willing to take a ton of bad pictures in order to get ones that speak to the soul. And Parker is a willing participant. I've deleted a million hilarious and awful photos- (he loves to take pictures of the television screen). But there are some that he has taken that make me pause and feel. That's all I want from my own pictures- to make people pause and feel.

Here are some of my favorites...

 photo IMG_4473_zpsscafiach.jpg

 photo IMG_4463_zpse7y02izj.jpg

 photo IMG_4748_zpsuu94htes.jpg

 photo IMG_4472_zpsos8ajroz.jpg  photo IMG_4769_zpsezgjqmvb.jpg  photo IMG_4812_zpskbbyyjwy.jpg  photo IMG_4808_zpsgtco97kl.jpg 
"City" he exclaimed after taking this one.

 photo IMG_4833_zpslsvvtsbn.jpg

"I want camera", he tells me at 6:30am, our first morning home after the beach.

And then he roamed the house looking for his next subjects. 

 photo IMG_5029_zpseuwmdtak.jpg

 photo IMG_5017_zpsvkkufccm.jpg photo IMG_5016_zpstth3etp7.jpg  photo IMG_5020_zpsptyvpdid.jpg  photo IMG_5013_zpsdtcwju6b.jpg  photo IMG_5051_zps0hkbungo.jpg

 photo IMG_5140_zpspem1jqwb.jpg 

I took this one of my beautiful boy. We were in the front yard, and he had just finished taking pictures of the lemon tree nearby. The lighting was perfect and my perspective was clear after watching Parker come alive by the same thing that makes me come alive. photo IMG_5070_zpsu2izuvg7.jpg

Each one of Parker's pictures speak more than a thousand words. They say everything. They say- I am capable. I am creative. Focus on my strengths. I will always amaze you with what I can do. 

They show me that he too finds beauty in the small details too. I've realized the people happiest in life do. If you want to create more happiness in your life- don't be afraid to be bad at something and pay attention to the details.

We all deserve to find the things that make us lose track of time and come alive. What does that for you?

Wednesday, June 13, 2018

choose your own adventure

I received a message on social media the other day from Christina Tetreault, a reporter with our local television news station, asking if she could do a story on my blog. I’m honestly always so stinking honored when someone wants to hear our story- and even better, when they turn around and then share that story with others. Parenting Greyson and Parker, and sharing words with others is my life's work, and the more people I can reach, the better.

It's so important to me that when discussing autism, the story told is one that is empowering for not only my boys, but for all autistic people. I'm an optimist by design. The glass is always half full, and I'm going to drink it and be grateful for that water. If I need more water, I'm not gonna sit around and wait for it to rain. Is raising two boys with autism easy? Hell no. Parenting alone is challenging, and when you add Special Needs to the mix, it can bring you to your knees at times. There are times I cry and ache and feel so completely alone. But first and foremost- autism isn't about me. It's about my boys. They are the actual ones that have to work so hard to navigate this neurotypically designed world. I would never speak about them, or their autism in ways that I wouldn't want my husband, or someone I loved to speak of me. I suffer from anxiety and depression. I would be gutted and angry if my husband went on social media and talked about how awful it was ON HIM. My boys are amazing and resilient and that's the perspective I love to share.

I'm excited to share the story with you. CLICK HERE TO WATCH. 

A big thank you to Christina, she did such a good job sharing a small slice of our world. The camera just LOVES her and I can't wait to see all the places she'll go with her stories. And I'm sure this story she did will give hope to someone just beginning the autism portion of their life. Or just give hope to someone who is starting something new and is just plain scared and not sure they can do it. She’s so sweet, when she left, Parker even hugged her all on his own doing. He doesn’t do that ever.

We can’t choose the circumstances in our life, but we always have the power to choose how we feel about them. We have the power to tell our own story to the world. 

Monday, June 11, 2018

let's go to beach

Acceptance is a process, not a single ending point. Like the tide, it sometimes goes back and forth. It sucks us pushes us out. It's unpredictable. Permanent but feels fleeting. So real you can almost hold it in your hands. Time is a school in which we learn these things. A crack into reality spilling out. Welcome to your life, in all its glory, it all its pain. Isn't it grand?

Feelings are my greatest friend. My deepest pain. Most days, I wouldn't have it any other way. We all deserved to be loved exactly the way we are. Especially by ourselves. That's what I work on. To love me-- big feelings and all.

I think when a baby leaves our body, something else immediately replaces it. A strength that can hurt and ache and appear empty or missing- but it's there. When called to, we push through pain and we gather that strength and we hold out against the crashing of the waves. It's remarkable what the human spirit can withstand. You are amazing.

Over the weekend we went to the place we used to call home- Hermosa Beach. Grey was only a year old when we moved from Southern California to the Central Valley- about four hours away. I needed a deliberate break from regular life to mark the end of the shortest longest school year in the history of life.

As soon as my eyes met the water, they filled with tears. THIS. This is what is real, I reminded myself. Sometimes I get stuck in a thinking bubble that feels so small, so everything in the world. This is everything. Compared to the ocean, my problems are so small.

The waves are so loud, you don't even have to think. You just get to feel. The constant calming sensory input is medicinal. 

 photo IMG_4527_zpshtqbjorh.jpg

 photo IMG_4340_zpsty0pxz1b.jpg

And each wave that comes in creates squeals of joy, and an inhale that fills me up.

 photo IMG_4344_zps1mkjzdl8.jpg
Doesn't Parker look like Gary Sinise here? I am so confused.

 photo IMG_4337_zpsjkywvhii.jpg

And then the waves are called back home. The water pulls at your feet and takes with it- all that hurts inside your head. EXHALE.

 photo IMG_4346_zpsn7nua5v8.jpg

 photo IMG_4306_zpstsbjns8z.jpg

 photo IMG_4321_zpslybqg9ml.jpg

 photo IMG_4309_zpsxwvd5zrq.jpg

 photo IMG_4348_zpszcbysxqz.jpg

 photo IMG_4359_zpskeapkpbg.jpg
Eating sand is hilarious. Clearly.

 photo IMG_4350_zpsxms67qbu.jpg

 photo IMG_4387_zpskqszmpnx.jpg

This is my therapist, Wendy who lives in Hermosa. Ok, so she's actually my dearest friend, whom I sometimes treat as my therapist. There's been several times in my life when I have called her, and after she says "hello?" all I can do in reply is cry and squeak back. She always knows exactly who it is. (Ok, fine- that's also because of Caller ID, but even if she didn't have that she would know). She listens like a world class listener, and then she reminds me who I am when I forget. Luckily she doesn't forget like I do. I love you Wendy- bigger than this here Ocean.

And photo cred goes to Parker! Over the weekend he suddenly realized what this gadget that I have carrying around since his birth does. And now it's the first thing he wants to do when he wakes up. "I want camera", he tells me.  I'll share some more of his pictures soon. He took a million. I am crazy about them and can't tell you how much I adore watching Parker find something that makes him so observant of the world around him and so happy.

 photo IMG_4597_zpsmelunszs.jpg

 photo IMG_4590_zpsvsrsu5fc.jpg

Taking pictures makes me come alive too. My pictures remind me how beautiful life is, because sometimes I forget.

 photo IMG_4606_zps7ekns2h8.jpg

 photo IMG_4557_zpsdpwepmoj.jpg

The boys like the hotel as much as they like the beach.

 photo IMG_4514_zpsbzjfyji5.jpg

Probably because they can jump on the bed and going swimming in their pool.

 photo IMG_4643_zpsicstopif.jpg

 photo IMG_4693_zpsickoxr2k.jpg

Going back to Hermosa Beach again is pretty much the only thing on my Summer Bucket List. Since we've been back, Parker has told me, "Let's go to beach," one million four thousand and twenty two times.

What makes you happy? This Summer- go do it. 

Tuesday, June 5, 2018

adventure is out there

  • High anxiety
  • Struggles with transitions
  • Rigid in routines
  • OCD like tendencies

No, I'm not talking about my boys right now. I'm talking about me. Me all my life me- not just grown up me. Chemical me. Brain me. It's how I'm wired. There's some good that comes with it- I'm organized. Efficient. Prepared. Observant. Empathetic. But it's also exhausting up here in my brain. I know there are simple adventures I am meant to partake in- if only I would stop talking myself out of them.

Right now I am talking myself into embracing Summer. Every beginning and ending of a school year this happens. It’s fear of the unknown- fear of change. Fear of forgetting a new schedule when the old one was tattooed on my brain. Fear of the clutter of what ifs that scatter to the ground and chase me daily.

Fear of the thing is always worse than the thing, is what I always say. 

And what I always forget and remember and forget again. This has been true in 100% of the things that give me anxiety. It always works out. I struggle with generalized anxiety disorder and take Effexor and exercise (and on the weekends, sometimes Titos) for it. It sounds so white room and clinical, when in reality it’s constant red hot fiery thoughts zagging haphazardly through my brain, while a hundred bowling balls lie on my chest. Acid rises in my throat when it's really bad. Rapid heart beat. The big things I can usually do- I can speak at a Board meeting or give a speech in front of 1,000 people but the small things, cause a thoughts tug of war in my mind.

I’ll go to the grocery store Tuesday. Oh wait- I should go Monday. I won’t be in that part of town Tuesdays and we’re almost out of hot dogs. I should just go now and get it over with. But it’s too busy on Saturdays. I hate going when it’s crowded. I always see people I know. And Monday I only have 30 minutes and I don’t think that will be enough time.

Sometimes I just want to slap myself —SHUT UP. It’s the grocery store, not brain surgery (but anxiety turns the grocery store anxiety into brain surgery anxiety) .GET IT TOGETHER WOMAN, I tell me. (Isn’t that a great plan? Add abusive self talk to the anxiety. Such a great plan. Didn't I say I was organized?)

Recently I pulled a fast one on my anxiety. I totally ignored it and went to speak out against the segregation of kids with autism in our District. I wrote about it HERE. The board didn’t pay much attention to me, or even look up while I was speaking, but afterward I was approached by someone who was paying attention. She introduced herself as a reporter for our newspaper, and asked if I would be interested in doing an interview with her. Anxiety (and probably my face because I have no poker face) said, HELL NO, while my mouth said, “I’ll think about it.” 

You see, I am a story teller. I am also a control freak. Put those two things together and it’s hard to hand someone else your heavy and precious story. Especially when it involves your children. Especially because speaking up comes at a cost. I've been approached by the media to discuss some Special Education struggles we've had,- and I declined, because I wanted to fix things myself- with face to face discussions. (How did that work for you, Chrissy. Not so good, thanks for asking). 

I discussed it with a few people who are more media experienced than I am. The bottom line was- I had to speak out publicly if I ever wanted change to happen. Nothing I had done on the inside over a period of years had even moved the needle a millimeter. (I don't know what kind of needle I am talking about but I think that's a thing you say about things that stay the same.) 

So I thought. And I thought and I thought and I thought. I discussed it with the husband. And finally, we agreed to do an interview. There have been so many nights I've cried until my eyes were puffy, all hope drained out of me. I was afraid to say yes- but for the first time in so long...I was finally hopefulWe have to do it, I realized with every ounce of me. For my boys and for all the kids that will walk this path after us. For how hard it's been but shouldn't be.Honestly, I was more afraid to say No. The topic of segregating kids because they learn differently and have a diagnosis is too important to be ignored. It keeps me up at night.

And so we did it. After two years of trying to handle it in what I thought was “the right way”, we instead talked to a reporter. And the next morning after the interview, I woke up right by my soul for the first time in so long. I didn't hit snooze, feeling overwhelmed and heavy. I felt like me. I am no longer afraid to tell the truth. God that feels good. People will talk about you no matter what you do- you might as well do things you are proud of while they are talking about you. 

And you know what- the article turned out better than I had even hoped. The facts speak for the story in ways I don't need to. There's right and there's wrong- and this is so wrong. Turns out Mrs. Appleton is a story teller too. Her's just happen to be a little factier- while mine are a little gushier. The world needs both.

Here it is- I'm proud to share it with you. I hope it insights change. Read it HERE.

And you know what? Summer, I am ready for you. By week two it will be my new favorite.

 photo IMG_4172_zpso8maovl6.jpg

 photo IMG_4177_zps1ecytvfj.jpg

 photo IMG_4133_zpslyiivddg.jpg

Some adventures can be in your own backyard. When your brain is free, your body is free too.

 photo IMG_4143_zpsu3l1nnlh.jpg
Jack is totally ready for Summer and sunbathing.

 photo IMG_4276_zpscg2z1d3a.jpg

Adventure is out there. Little and big ones. All Summer long. (Thank you for making the boys these amazing shirts Momma Cardey!!!! We love you).

 photo IMG_4285_zpsxno8vsud.jpg

 photo IMG_4140_zps8dkemp3o.jpg 
How lucky I am to have something worth fighting for.

Don't talk yourself out of your own adventures. Don't talk yourself out of speaking up for the things that matter most to your soul.  Together, we must speak up and shine a light in places where the dark has permeated too long. And in the process, you might just find yourself becoming more you.

So much love,

Thursday, May 31, 2018

your voice matters

"Up next, Chrissy Kelly," the President of the School Board announces.

My heart is pounding. I walk towards the dais, adjust the mic on the podium and take a deep breath in. I only have two minutes. How in the world do you sum up something so important in only two minutes? How do you properly convey the heartache of seeing your son given less, simply because he has autism, in only two minutes? How do you appropriately communicate the disappointment and anger created due to the fact that you had no other choice but to home school this precious boy? Deprive him of peers. Of community. Of belonging. None of it they were providing anyway.

You can't. But I had to try.

Recently I received a message on Facebook from a sweet Momma of a General Education student in Greyson's grade. Grey did inclusion 30 minutes a day, a few times a week. “My son was in Mrs. (awesome teacher's) class when Greyson would come in. He would see you guys in the parking lot in the mornings and tell me all about him. I asked if he ever played or talked to Greyson. He said no, because “he has autism and they keep him separate.” It made me sad because my son would have benefited from a relationship with Greyson as well.”

These are the kind of words that almost crush you with their beautiful, heartbreaking honesty. So much pain and so much beauty in those words. I still hold them close, and I can still feel their weight. I'm so glad she told me, because I know segregating children with autism makes an impression- a deep groove in a pattern of thinking for both the segregated and the main group. But to hear it expressed in the beautiful and honest words of a child was something I needed to hear.

The children in seperate autism classrooms are segregated in old portable classrooms, approximately a football field away from the main school. There are no General Education students that spend all day in these portables. It's not legal or ethical.

A couple of mornings later, I woke up and knew I needed to turn my thoughts and pain into action. I decided to make a statement at the next school board meeting, reminding them that the segregation of children with special needs is a violation of The Individuals with Disabilities Education Act (IDEA). Under IDEA, separate schools or removal from the general education class should only happen when a disability is so severe that supplementary aids and services can’t provide a student with an appropriate education. I also wanted to share some of the struggles we have encountered which led us to home school Grey.

I always ask God to show me the next thing to do, and to make it obvious. This was obvious. Going in, I knew that my words probably won’t create the change needed within. I’ve been a broken record on this topic for over two years. However, I did it anyway because when you see something very wrong, you shouldn’t just walk away. I did it so my son could see that I have his back always. I did it for every other kid with autism who deserves these rights too. 

What if history's greats didn't carry their messages because of trepidation over how it was received? What if Martin Luther King Jr. didn't give his "I Have a Dream Speech", because he figured racism would still exist after his Speech? Not giving that speech wasn't an option for him. He saw something he believed in so wholly- he died for it. Let that register for a minute. Sometimes you need to speak because what you have to say simply can not remain silent in your body for a single moment longer.  

I spent a couple of days editing and re-editing my words in between home school and drop off and pick up and therapy. I talked myself into and out of going to the Board meeting every eleven minutes. We couldn't find a sitter, so I was going alone. 

As I drove to the meeting downtown on the evening of May 23rd, I thought about the path advocacy has taken me on over the past three years. Beyond Principal and Teacher meetings and having 7,000 emails to administration ignored. I've attended LCAP (Local control and accountability plan), Bond Measure and Budget Community Meetings. When Parker was in the hospital- I left his side to attend a "Search for a Superintendent" meeting to make sure I voiced that we needed someone who valued Special Education. I've met with our Assemblyman's Education person (she's awesome). I've spoken at Board Meetings.  I had our Board of Trustee area member to my house to give him a presentation on autism. I met with the Board President to discuss Special Education, and teach him about IEPs. I gave a presentation on the importance of Inclusion to the Assistant Superintendent of Special Education. And finally, I met with the Superintendent to discuss Special Education. In a District of 74,000 students, I've covered a lot of ground.

But there are miles to go before I sleep.

As I made my statement, I periodically looked up to find only a couple of faces looking back. The majority of the Board were occupied doing something else. Writing, reading from a binder... I was...confused. I thought people ran for the Board because they were inspired by education. I thought they welcomed real world feedback they didn't see from the dais. I thought that a mother talking about a Federal Law violation- as well as the most precious thing in the world to her- warranted attention. They didn't share that thought.

The next day I started angry crying to my husband. "It's not that I care that they ignored me. I care that they didn't WANT to pay attention. Why don't they care about this? Why doesn't this matter to them?" 

A couple of days later I received the most amazing packet of letters from my dear friend Heather. In April, Heather invited me to her 4th grade classroom in a neighboring District to read about autism to her General Education Students. I went and shared a story I wrote, and told the kids all about Greyson and Parker. I shared Greyson's communication app, Proloquo 2 Go with the students, and showed them how Greyson can use it to speak. We had so much fun together. 

The letters were Thank You letters from the students. And Michael and I sat and read each one with tears in our eyes. The School Board may not have been listening to me, but these students WERE. 

"Thank you for coming to see our class to speak and talk about your son and how autism is different and the same. I would love to help children with autism."

"I really enjoyed the book and how you told us how you saw autism as a super power because I've thought about autism as the same way."

"I learned that kids with disabilities are the same as me and you."

"I want you to come back and tell us more."

These amazing, hilarious, energetic, hopeful children were listening. That's the thing about our stories- they must be told. Whether everyone or no one is listening. You never know when you are going to make an impact. The more we all actively advocate around the globe, the more impact we can make. Who is with me?

So much love,
Greyson + Parker's Proud Mom- Chrissy

To speak at a Fresno Unified Board meeting watch THIS. The next meeting is June 13th, and then they are out for the Summer.

Sunday, May 27, 2018

constantly thinking

Do you know when you want to talk to your friend, but it's been so long that you need an hour but you only have ten minutes, so you don't call?

That's what this writing is. I only have ten minutes. But I'm calling. Because a lot can be told in ten minutes. And stories can always be told in parts. And because this is who I am in my bones. A writer. A thinker. A feeler. A philosopher. Here I sit, and as I process my thoughts, they make so much more sense to me inside. But it's been forever, and the longer I go the harder it is.

I am a deep, complicated, constant thinker. Constant. Even as a little girl. I don't know if that is a product of anxiety, or simply a product of Chrissy Pratt. (maiden name). I hope I don't get Cancer. What if I have Cancer now? How do I know I'm alive? What happens to you when you die? Who will I be when I grow up? I constantly had questions inside, some that would keep me up at night.

I'm still the same in that way. My mind is so busy that my body becomes exhausted. It helps me think and feel and notice and love all the things there are to love, but it also makes me feel like I never ever really stop and reset. I never ever catch up on all the thoughts I need to be thinking. And sometimes I can't even go and do because I am just so exhausted from thinking.

This weekend we celebrated the boys birthdays' with a birthday party at the house. Like a real life shindig. And it took us many years after moving to the Central Valley of California to find the right ones and the right fit- but hallelujah, we have friends. Call if I need to cry to someone friends. Call if I need help friends (I'm still working on that one. It's hard for me to say "help".)

The only decorations in sight was a "happy birthday" sign. So many years I didn't do birthday parties because I wanted to do them perfect, and I knew I couldn't- so I just didn't at all. Silly me. All you need are friends you love. Perhaps some food. Some booze if you are into that. Which I am. And for sure some cake.

 photo IMG_4734_zpswb2orq0x.jpg

Oh, and tiny hands. Because why the heck not?

 photo IMG_6122_zpsgmukp9hb.jpg
Is there anything better than this. I didn't even end that with a question mark because I actually meant it as a statement.

 photo IMG_4063_zpsvkicluei.jpg
The boys were SO happy.

I used to assume Grey didn't like people because he didn't want to be around other people. And as soon as I took him out of school, it was like he suddenly had the ability to want to socialize. He constantly gets his communication device and asks if specific friends, and even his cousins (who unfortunately live far away) can "come home". Which actually makes more sense than "Come over" if you ask me.

 photo IMG_4073_zpsgfadvhof.jpg

 photo IMG_4071_zpsxskhv3jt.jpg

 photo IMG_4140_zpsegpq98mo.jpg

Adventure is out there. Little and big ones.

 photo IMG_4088_zpshkw8isee.jpg

Pretty sure this was his favorite thing he got. Which wasn't even the actual gift. But not according to Parker. He slept with them and carried them around all day today.

 photo IMG_4104_zps6wwfzamg.jpg

It's funny how little we really need to be happy. I am grateful for capital F Friends. I am tired. I am happy. And tonight I might just go to bed thought free. I'll give the hamster wheel a rest. How about you do too?