Thursday, March 5, 2015

only one shoe

Hello, this is the school nurse. We have Greyson in our office here. 

My breath catches, then stops while the rest of the world stops making all sound.

He's alright now, but I wanted to let you know he's been bitten. I drop to my knees. My silence is punctuated by gulps of air in so I can sob.

Hello? Are you there? He's okay, he's just been bitten on the stomach- but it didn't break the skin. 
I was aware my overreaction was severe but I couldn't take one more thing. I was scared and confused and my heart was breaking a bit more with each day that went by. Greyson was in an autism preschool called PALS, and it was starting to feel like we were in a nightmare.

Yes, I'm sorry. I'm here. It's just... He can't talk and I'm worried he's not ok and he probably doesn't understand what's going on. 
Can you adequately explain the terror and protectiveness you feel in certain moments for your nonverbal child? Are there even words invented to explain it? Because I have never come close to finding them. 

It was the second time he had been bitten. Add to that an unexplainable black eye.

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Greyson's first day of preschool, August 2012

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His black eye

Things felt wrong from our very first day there. I chalked it up to me. He was only three and I wasn't ready for him to be gone at preschool five days a week from 8:20-1:20. The classroom age mix was 3-6 years old. That's too much of a gap for general ed- so how in the world would it work for children with autism- each child is so completely different from the next. I wasn't sure if it felt bad because it wasn't the preschool experience I expected or if it felt bad because it wasn't right for us.

Can I volunteer in his classroom? I asked the teacher. No, she responded unsympathetically. Every student in this room has an IEP posted and it is a private legal document. You can't be in here without advance notice and you need to be accompanied by a Director or the Principal. I suddenly felt stupid for even asking. Angry I was being deprived of one more typical mom thing.

On the second morning of school I parked and walked him up to his classroom while he screamed and attempted to lie flat on the ground. For your convenience you can just bring him to the school drop off lane in the morning, I was told. Oh that's ok- I would prefer to park and walk him up until he's comfortable here--that way he realizes I am bringing him here on purpose, and not just letting him get yanked out of the car by someone we don't know. 

Okay, you can do that but an aid will meet you on the sidewalk. Unfortunately the parents aren't allowed in the class as to not disturb the other students.

It was obvious that I was not welcome in Greyson's classroom.

Other than basic information, the new school never asked me for any information on Greyson whatsoever. No parental feedback. Even my friends with children in general education filled out information about their child on their likes, dislikes, and skills and strengths. A couple of weeks after school started I created lists of programs and skills Greyson had mastered, as well as the things he was currently working on in his home behavior program to share with his teacher. I made an appointment so we could review it together.  I also brought his Speech Teacher his current goals and capabilities based on the year of one-hour, twice weekly Speech Therapy sessions we both religiously attended. I was especially adamant that she knew that Greyson was capable of making three word requests. I want drink. I want car. And so on. Grey tries to get away with the least amount of language possible and I didn't want that to happen at school. I wanted to make sure they knew what he was capable of so they could continue his learning from there.

Grey did so good today, he Speech Teacher reported. He said ball and car and mountain bike. He said mountain bike? I asked incredulously. (it's not possible)  Um- did you tell him to say mountain bike or show him a picture of a bike and tell him what it's called? 

No, he just said it all on his own out of the blue- 'mountain bike'. 

I'm curious-  if he says car- does he get reinforced or rewarded? 

Yes, of course, she said smiling as if that was the answer I was looking for

Ok- can you please make sure when requesting preferred items that he uses three words? As I mentioned before he tries to get away with as little language as possible and I don't want him to regress.

Greyson is stubborn and hard to keep focused, but he is a great and consistent learner. He tests all new Teachers and aids to see what he can get away with. He responds best to firm yet loving Teachers. During his year of at home Behavior Therapy they only had to stop one program due to Greyson being unable to advance. All the feedback I got from the PALS classroom just didn't describe Greyson. It was obvious they had one way of teaching and he just wasn't fitting their mold. No one was able to figure out what makes him tick. 

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We've had many good autism teachers and they just keep trying new methods until they figure out the Grey's motivation and preferred rewards. And some of the very best Teachers can figure out things about him that even stump me. But at this school every week the Teacher would have to stop a lesson and start a different, new one because Greyson wasn't able to learn or demonstrate his knowledge. 

After a couple of months Greyson stopped using three word requests at home and would only use the noun. Juice. Car. No. Chips. And when he wouldn't get the item he would scream them at us. JUICE!!! CAR!!! NO!!!! CHIPS!!!! Then he would only point at what he wanted and scream. Then even the point vanished. He could no longer label colors or items he once knew. He no longer could label colors or items he once knew.  All the hard work that was poured into him during early intervention was gone. I was concerned so I asked for weekly written updates, as well as any information that would help us reinforce the lessons they were working on while we were at home. Every few weeks I would receive an update. Here's an example of one:

Good afternoon,

Hope you had a good week!  Looking toward next week’s programs; Greyson will continue previous programs with the exception of his “Come Here” program and his program for matching object to object which have been moved to maintenance.  I will be adding DT: Lesson 8: Matching: Picture to Picture

My head was spinning. Is that even English, I wondered? Greyson was vanishing before my eyes. Again. First by autism and now from school. I would pick him up from school in the afternoon and it was like he didn't even recognize me. I called my friend crying. I cried a lot then. I still feel sick when I drop him off every single morning. It's been nine months. Shouldn't that have gone away by now? I asked her. I ask the school for information and I don't get anything. I don't understand what's going on and 
I don't know what to do.

Have you ever thought about taking him out of school? my friend asked. She knew our concerns and how bumpy this road had been. I had thought of it - but only in my daydreams. Isn't that illegal or something? There were no Montessori's or private schools for children with Special Needs around. Greyson didn't yet have the ability to mainstream in a general ed classroom. Our options were limited.

I couldn't watch him fade away any longer and her words were the push I needed to make change. I was going to risk it and pull him out of school. I needed to come up with a plan built for Greyson. A plan that would help bring him back and hopefully one day- help him learn again. We started 20 hours of at home Behavior Therapy. We sent him to a private preschool one day a week with a typical special aid shadow that we paid out of pocket. We started up private $85 an hour speech therapy, and would alternate other activities like horse back riding, swimming lessons and typical child play dates and outings. Some nights I couldn't sleep, I was so scared I was doing the wrong thing. 

After a couple of months Greyson started to come back. So slowly at first. And after a few months I finally experienced this blissful exhale of relief. We were on the right path doing exactly what we needed to do, a fact I could feel in my bones. Before I had been desperately searching for a path worn in the grass for us to follow- but I realized- it was up to us to wear our own path. For the past two years we have done our own thing, and Greyson is thriving, still stubborn and so happy.

Greyson turned five nine months ago and I knew it was time to explore schooling options again. He needed the structure and curriculum that only five days a week school could provide. I was scared but ready. I called and spoke with the Director and voiced all of the concerns we had about the first PALS classroom we were in. We set up a tour for another school in the PALS program, hoping that this site would be different. As soon as we walked in the door Greyson reached his arms up to Michael saying, I want up. My heart was thumping.

There wasn't a toy in sight. There were no days of the week or colorful art or the children's names decorating the wall. Having autism means that my son will be doing so much extra learning all of his life. He is a professional learner. I needed learning to be look like fun and joy. The classroom looked more like a large storage closet. It felt like an insane asylum. A row of children sat in front of a Signing Time DVD; none of them engaged. There was a child strapped into a chair screaming, setting off the other children to do the same. Another child was yelling and groaning on the floor. My hands were shaking and my head was spinning. I was rapidly swallowing so I wouldn't cry.

Home, home, home, Greyson repeated over and over.

Do you have any sensory activities /rooms for the kids? we asked

We have a weighted vest, the Director replied.
Do you do Speech Therapy one on one? Greyson does much better that way.
No- we usually do speech in a group setting. It works better that way.

They stood behind every reason they gave me, just like at the previous site. And most of the answers were - This is how we do it. This is how it works for children with autism. How could these professionals run an autism program and not even realize autism doesn't work that way for anyone? There is no one size fits all.

We finished the tour and walked to our car. The air was thick with silence until I started to cry. "He can't go there. We can't make him. That was so awful. It's like a place you go to dump your kid for five hours- not a place they go to learn."

"No- I agree," Michael said. "Greyson was gripping me so tight the whole time we were there... he remembers".  Michael's voice started to crack as his words trailed off.

For months we researched and asked everyone we could. I asked Teachers, and parents of children with autism. I prayed. I hoped. One evening we decided we needed to move to a completely different neighboring school district. Like pulling Greyson out of school- It was another moment filled with hope- but even more fear. What if we do all of this and it's an awful idea? What if we end up worse off? But we were ready to go for it and so we did. We listed our house and within a month it was sold and we had purchased another. Everything was moving so fast. And one month ago we started Greyson at a new school in an autism classroom. This week we had our first 30 day IEP meeting- Individualized Education Plan . An IEP is mandated by the Individuals with Disabilities Education Act (IDEA). The IEP describes how the student learns, how the student best demonstrates that learning and what teachers and service providers will do and provide to help the student learn most effectively. 

And with tears in my eyes I will tell you- this meeting was incredible. I finally felt like I could stop waiting for the other shoe to drop. This is it- and it is good. I looked around the large rectangular table filled with people willing to do what it takes to help Greyson succeed. It was hard not to cry. This environment has exceeded our expectations. The school does 1,000 things differently and in the best interest of how each individual learns. They have a whole room dedicated to gross motor and sensory stimulation- which really helps kids like Grey who need it to stay focused and calm. The way the Teachers describe Greyson and his learning process shows that they get him. The goals they set for him are hearty yet realistic. They took turns speaking at this meeting and you can tell they want him to succeed- and they will do everything they can to make it happen. His Teacher told me that he's the perfect fit to their classroom- and that they didn't even know until now that it had a Greyson shaped hole until he came along. His Teacher gave us a journal notebook to keep in Grey's backpack so she and I can communicate back and forth. The greatest part- Greyson walks into his classroom happy every single day. He may not talk but he can communicate --and that right there is the greatest sign. He likes going there- and because of that so do I. 

I hesitated writing this post for years. By nature, I am a fixer- not a complainer. But I feel a need to tell this truth. To admit that there have been scary decisions we've made that I've doubted and been sick over. To show that something bad can turn into something amazing. To remind you to trust your gut instincts. I believe that the people in the PALS program have good intentions but outdated practices that desperately need to be changed.  For Greyson's privacy and safety, we do not share where he currently attends school. 

I look around at our new home and realize this is exactly where we are supposed to be. I feel like I dreamed this house and school into being. God has been here every step of the way, opening the right doors and closing the wrong ones. I frequently tried to walk into those closed doors and got hurt. I'm realizing now that's because it was time to walk away.

And Greyson is doing amazing. It's so easy to forget that most set backs are temporary.

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Just recently he started to be able to write his name.

And I've also realized that the journey isn't about writing his name or mainstreaming in a general education classroom. It's about the tiny little million things he does every day. The tiny things that lead up to these big milestones and miracles that blow us away. 

It's been a hard journey, but one that I am so proud to call ours.

Monday, March 2, 2015

the time of my life

The world has felt so loud and mean and harsh lately. I feel like some people think as long as they are behind the wheel of a car or behind the name anonymous on their computer that gives them permission to be a total asshole. When I write at night it has always felt like I was sharing with a dear friend...but I know it's bigger than that. Not everyone who reads loves me or all of my choices- and you let me know. And sometimes that's hard and weird. You know- because I'm already amazing at judging and second guessing myself. Because one thing I know is that I'm trying my best every damn day. And lately- I'll be honest- for the past couple of weeks or so- my best sucks.

When I first started writing three years ago I felt so self-conscience with every single post I shared. I felt stupid for feeling so much- and then sharing it. My face would burn after I hit post and I would quickly slam my computer shut so I didn't have to think about it for one second longer. Why is there so much shame with brutal (always kind)honesty? Why is there so much shame in saying I don't have it all together. Or I hurt. Or marriage is really stinking hard. And sometimes I feel like the only person who gets me is my dog Jack. But he actually is kind of a dodo bird and doesn't get me. But he stays by me when I need him to. He spoons with me at night. He wags his nubbin tail when I walk in the door.

The more I wrote, the more that shame from sharing went away. And then it only showed its head here and there. Like when I wrote about the day I started to accept that Parker has autism. Then again when I wrote about going to marriage counseling with Michael. And tonight- nothing sounded worse than writing. Almost as if there are demons I don't have the energy to fight. Sometimes writing just opens a box of crap and it explodes out and I don't know how to put everything back again. Sometimes it's so hard for me to be sad, and even harder to admit it.

And the funny thing is- my sad isn't autism. Or money. Or moving. Or finding a school for the boys. Or a lack of health. I kick ass when there's something big on the table. But then sometimes I think I save up my sad- and then BOOM. I'm just going about my life and the sad hits me. It happened the other night when I was getting a super unfancy table massage. As the therapist was digging into the knots on my shoulders my eyes just started to cry. It's happened a couple of times before- like during yoga or a massage. Like my muscles are holding onto beautiful sadness and suddenly it starts leaking out. The unexplainable sad. And sometimes we don't need good reasons to be sad. We just are.

So I am here, showing up, writing. I met a remarkable woman who lost both of her parents to cancer at a young age. At times she felt completely anonymous and alone. And do you know what she did? She became a hospice counselor. I started to cry when I said to her- "How do you do it? The thing that took so much from you. How do you just run into the fear like that? Some people can't even go in a hospital after such loss- and here you are- running into a burning building and rescuing others."

I run from it, friends. I shop from it. I eat from it. I ignore it. But tonight- in my own tiny way, I am running towards it instead of away.

I am sad. I've been in a funk for a week. (I'm ready to be me again).

Some things that make me smile today...

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This gut wrenching post from Oren Miller- an incredible dad that lost his life to lung cancer. His words allow me to touch and remember the profound joy in my life. Because we can be sad and happy, all swirled into one.

He says "It was only on the drive back that I realized I had been experiencing the biggest tragedy of human existence: I was having the time of my life, and I didn't even know it." Read the full post HERE. And may God rest your gorgeous soul.

And some pictures from the weekend... They really help me see happy.

 photo _MG_8268_zpsxqwl8gwb.jpg How sweet is this green machine? It's getting all done up now with some new skin. But as soon as I saw it outside I said- I must take her picture. Her name is Roberta I just decided- because that was my grandma's name. If you love vintage and reloved items follow New Vision's Reloved on Facebook .

And over the weekend we stopped and strolled through the almond orchards. They are this close to being fully in bloom.

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Spring is coming cold weather friends. I promise.

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The his momma.

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Petals fall down like snow- and the boys go wild. It's the greatest.

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I love Doodle because sometimes when he is happy- he holds his mouth open wild and smiles. Almost as if he's trying to capture all the happy he can. I never ever put it together - you know- where he got that from until I saw this picture.

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Many of you ask- Who takes the pictures when you are in them? I hire a photographer to follow us around daily. Like the president. Just kidding- I set the camera based on lighting and hand it to Michael. 

Sad and having the time of my life- all at once. It is possible.

Wait- do you hear that?!!! SILENCE. It's 9:16 and the moming day is finally done. Well done you- you made it through the day too. I'm off to enjoy the quiet.


Friday, February 27, 2015

the true beauty of pictures

As soon as I became a mother I discovered a profound and deep respect for photography. The time was fantastically whizzing by and I desperately wanted to remember each face, each stage, each intoxicating milestone and moment. When my first born son Greyson was 6-months old I felt so guilty because I barely had any pictures of him- and although I swore I would never forget that face or moment or day- he was growing so fast that memories were quickly being replaced with new ones. I was sick of feeling guilty but doing nothing about it. I did a little bit of homework and finally invested in a camera that would help me document life.

I started with a camera similar to this Canon Rebel and this $125 50mm lens. I went with Canon versus a Nikon because the lenses are less expensive. I also bought a Dummies Guide for my particular model (forget about getting anything useful from the instruction manual that comes with the camera.)

Around the time Greyson was almost two it became harder and harder to capture his personality with a click of the shutter. Like eleventy-million times harder than any other two year old- which is already hard. I often ended up with a shot of the back of his head or a blurry swirl. He wouldn't make eye contact with me and it was often impossible to get his attention. And the few times he did- I no longer recognized the boy looking back at me.

"Does this look like Greyson to you?" I asked my husband Michael, showing him a picture of a boy I didn't recognize with a haunting empty look in his eyes. "Yes, it looks like him...I guess." I wanted Michael to put to rest my growing unease. "Doesn't it look like something is wrong with him though? Like he's no longer totally there?" 

"Yes, a little" he replied. And the more pictures I took the greater that canyon between Greyson and I grew. It scared me.

Greyson! Greyson! Greyson! Look at mommy. Over here! Look at me. Eyes on me Grey! Nothing worked. More blurry back of his head swirls.

I hungrily read all I could about photography every night after Greyson went to bed. During daylight hours I would practice on him. I desperately needed the image I saw on screen to line up with the image my heart's eyes were able to catch. I realized I needed to learn how to shoot in manual mode and I learned how to quickly create a snap of the shutter to see his striking blue eyes that I was starting to forget.

Since then Greyson has been diagnosed with autism and now I understand why he looked so far away inside his own head at times. Photography has become my passion and I want to share some tips that have helped me capture both of my beautiful sons. I know it can be ESPECIALLY hard to capture children with autism, but these tips work when photographing all children.

1. Unlearn everything you think you like about pictures.
Gone are my dreams of picture perfect family picture portraits. Where everyone is sitting perfectly, looking the right way and no one is screaming and kicking. These are 95% of all canvas in people's home. It 95% of the holiday cards we receive. It's what people like. I wanted that shot. I ached and cried over that shot. And the more I held on-- the more it hurt. I realized I wanted what I thought that shot represented- a perfect and easy family and life.

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After year...

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After year we tried for that perfect shot.

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Which often left us all crying. Until I finally gave up. I had to let it go.

I used to ache to have that picture perfect family portrait but I don't any longer. That really isn't us and I no longer need a representation of something we are not. I learned that in order to be happy, I needed to learn to love my real life--my messy, chaotic imperfect and beautiful real life. And with that time and acceptance came an unwavering love for real life photography.

Here are some tips to help you get beautiful pictures of your children, whether they have Super Powers or not.

1. Photograph your child doing something they love. Their face shows genuine emotion when they are happy. Bath time. Playing. Running around outside. Playing with bubbles. Laughing. These images line my walls and my mind and my heart. These are the regular every day things I will ache for most when they are all over and gone.

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Bath time is for magic- not just for getting clean.

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Lunch time in Daddy's shoes.

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We are loud and messy and we don't ever sit still. We are a real and imperfect family- and I love that our pictures tell that story. Our truth.

Cameras aren't only for special occasions. Keep your camera handy and charged and ready to go on the counter or in your purse. You can't tell kids- "Hold on. Keep that pose- I'll be right back with my camera" because the moment will be gone. Yes, it's heavy. Yes, sometimes it gets in the way. But more importantly- yes, you will also get some of your very favorite pictures ever.

2. Shoot in wide open (and if you need- fenced in!) spaces and let your child roam. Let them guide the photo shoot. When you constrict them to specific areas and poses their face will express their discontent- most likely not the face you want to commemorate. Now this is exhausting business because their energy knows no boundaries. Wear tennis shoes, be prepared to run, jump, and get dirty and act ridiculous in order to get that perfect shot. When you have more than one child give them all something to focus on and give an area to stay within so they all still fit in the same frame.

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3. Use a helper. This can be extremely important especially if you have a wanderer, more than one toddler or you are trying for more of a family portrait look. For me a helper is a requirement when taking pictures of other children with autism. The helper can jump, sing, blow bubbles and distract. If you want the shot to be posed they can set the child down over and over again while you focus on getting a specific shot. Make sure they stand behind you and get on the same eye line as the lens .Use bubbles, songs, noisemakers or an ipad to try and get the child's attention. I tell the parents- LOOK AT ME THE ENTIRE TIME. I don't care if Bobby is stabbing Susie in the leg with a pencil. Do not turn to yell at him because the second you do- everyone else will finally be looking at the camera. Also- do not yell at your children at the photo shoot- no matter how non-compliant they are being because then they will cry and become red-eyed grump dogs for the rest of the shoot. Wait until you get into the car to tell them they are no longer getting a puppy for Christmas because of their photo shoot behavior.

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4. Use secret weapons. If you are the photographer- find out specifics about the child. Their favorite show, characters or food. Ask mom or dad if they ok with being touched.  Is there anything specific that makes them laugh? (Fart noises are my favorite). Is there a small toy they can hold to give them comfort? Or can you use something to keep their attention- like the shot above of my son Greyson and his FAVORITE- Disney Cars. Use your secret weapon wisely. Put their favorite show on an iPad above your camera lens. Repeat words from their favorite show or movie. Singing the theme song to Yo Gabba Gabba used to work for my oldest every single time I wanted eye contact. Now I say, Do you want gum? (Or chocolate?) As soon as their eye gaze meets my camera I must be ready to snap. I also make good on my bribes- "First more pictures, then chocolate!" Their key favorite phrases and snacks change every so often and what worked last time may not work this time. Keep trying new things. Be willing to take a million bad pictures. TAKING PICTURES IS FREE - so snap away.

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Swings are a GREAT place to take photos and one of my best secret weapons. They make my boys happy and that comes across in the pictures. If you have children that hate taking pictures- then just let them focus on playing while you take the pictures.

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5. Be flexible and have a willingness to change your expectations of what makes a beautiful photograph. Let the beauty of the setting and your subject be your guide. Instead of asking the child to move- use your legs and take shots until the camera shows you an image you like. Look for beautiful background colors. Try different angles. Lay on the ground and shoot up (as I did for the ferris wheel shot below). Climb on a bench and shoot down. Shoot when the sun is setting with the subject blocking the sun. Shoot against a plain brick wall. Have fun experimenting. This is MY version of playing.

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Beautiful pictures aren't only about perfect poses and eye contact. They are about real, imperfect gorgeous life. Real moments you may want to remember forever. The everyday experiences of parenthood that are dripping with beauty. Sometimes the only thing standing between you and happiness is your expectations. Go grab your camera and ready, set, click.

Wednesday, February 25, 2015


There's deep beauty and simplicity about being a baby. We don't yet know words but we do know feelings. Hungry. Cold. Hot. We just feel and cry or feel and shiver or feel and move. No words inside our head to explain, create, think, debate, worry.

Then we get older. But just a little older. Enough to discover the intoxication of independence. "I do it myself" was my favorite phrase at two years of age my Mom likes to tell people. I wanted to do it all- at 2 and 3 and 4 and 5. I taught myself so young that the easiest, best and quickest way to do something was to do it yourself.

And the older we get the more we try, and sometimes struggle to figure out who we are. And the thing is- who we are is constantly changing according to the words we use to label ourselves. Yet we still try to pin ourselves down with simple nouns and labels.

I am 25 and have recently moved to Los Angeles. For a boy. I am a California girl, but still a Missouri girl inside. I care about work. It defines me. It's hard to be so responsible for the whole world because I was just a college student five minutes ago. But it's also intoxicating to be living my actual happily ever after. This is my REAL life. I know it.

Now I am single. Again. And 30. Which is normal in Los Angeles but wrong mostly everywhere else. I can't even imagine being married, but I know I am "supposed" to be. I don't know what is wrong with me. I pour myself into figuring myself out. I was a pharmaceutical salesperson. A runner. A friend, daughter and sister. I didn't know who I was.  For some reason I found it very confusing then because I didn't know many nouns to use to describe me but single.

Now I am a wife. I don't know what a wife is supposed to feel like but I know what it looks like. I think I'm supposed to decorate the house and go to the grocery store and clean and stuff. And I'm not really good at that stuff so I feel a little lost. Goodbye Chrissy Pratt- now I am someone new. My name isn't even the same. I don't want to be someone new.

Now I am a mom. I thought it would feel like smart and calm and maternal, but it feels like overwhelmed and scary and so so (SO) tired. When will I figure this out? Will I ever feel the right way a mom is supposed to feel? How will I go back to work? I don't know how to be career girl and mom girl. Can those even exist together?

When Greyson was a year we packed up our home in Los Angeles and moved to the Central Valley of California and this working girl traded in her high heels for flip flops. Again redefining myself. Throwing all my nouns out the window and starting over. Trying not to scrunch up my nose when calling myself a "stay at home mom." I thought it sounded so uncool. I'm a COOL stay at home mom, I decided and this was my happily ever after. I finally figured out who I was. No more noun changes.

What a joke- right? Life has changed a thousand times since then and so have my nouns.

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And I've rediscovered myself over and over again. I realized I've always been me and I've never really been lost. The only thing I've really discovered in the process of discovering who I am is realizing that my nouns are changing constantly. The things we love often change. The things that matter change. The way we spend our time changes. The places we live changes. Even our cells are constantly turning over and changing. We hunger for nouns to define us, but we as humans we are not easily pinned down by nouns. And if you are like me- you can drive yourself crazy trying. (Don't be like me).

I'm trying to go back to my baby roots. Less labels, introspection and black and white thinking and more feeling. There is one noun now that in my absolute favorite. One I will never ever let go of. One that always rides shot gun in the process of discovery- MOM. Not just a noun, but also a verb.

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He's so happy that sometimes he floats

Do you ever have moments- moments where a smell or a song or your bright red cheeks in the mirror shock you for a second. Yes, you think. This is me. I feel like ME right now. I forgot how good this felt. I forgot how this felt at all. Today I didn't feel a thing like me. It's actually been so long since I've had that feeling of recognizing me. There's been so much change lately that I didn't feel like I knew who I was. Today I was stuck in that black hole. I couldn't control it. I'm embarrassed to admit what set me off. Yesterday I got my hair done. And it turned out zebra stripey. And to fix it I had to go back and get more highlights and my hair is a lot lighter than I'm used to and I'm trying to get used to it. And every time I looked in the mirror I felt like I didn't even know who I was. Everything overwhelmed me. My life overwhelmed me. I blow dried my hair and sobbed. And friend- it felt like this awful feeling was my new forever. Like -I don't know if I can make it to bedtime so I really don't know how I am going to make it another 40 years doing this exact same life. And most of the day has been spent in this dark spot.

And I made myself write to sort this cluttery mind out. And as I start to reorganize my mind I feel myself climbing out of that black hole. The light hurts my eyes. I'm stretching my limbs out. I'm giving myself permission to simply feel. No labels required. Everything always changes, and that doesn't have to be a bad thing.

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We go to school ten minutes earlier than we used to so we can park and relax and take our time. He gets in the front seat and we watch the world whiz by. It's one of my favorite parts of the day. (MINUS THE GETTING UP EARLY PART).

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Jack the dog comes too.

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He happily walks into his classroom. He can not speak but he can certainly communicate and that tells me a lot.

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And his Teacher knows the way to my heart- information. We now have a communication journal to share information back and forth. Isn't this the best idea EVER!?

He's come so far and is doing so so good. See- sometimes change is the greatest thing ever.

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Wednesday, February 18, 2015

Five Things About Autism I Wish Someone Had Told Me

Most of my grown up life already didn't look anything like I expected it to. And then along came autism and really flipped our world upside down. I heard so many different perspectives on autism from different professionals and parents: This is going to be so hard on your marriage. You are the only person who will advocate for your child. The world is full of judgement- people stare and comment on your parenting skills. Over and over I heard these exact same statements, so I accepted them as truth.

I was scared and depressed about how bleak the rest of our life clearly was going to be. I was frightened my sons would never know happiness. Scared my marriage would crumble from the stress. Scared of everything really. 

But now that our own life has unfolded, I realize that many of these truths do not have to apply to us, and the ones that do- that is not where we put our focus. Life is hard, yes-  but it is also too good and too short to miss out on all the blessings it holds. Here are five good things that people don't tell you about raising a child with autism.

You will realize just how good people can be. Our life is a journey and we have met so many wonderful people along the way. Caring, kind, patient people with extra love to give. Those who have been affected by autism and those who haven't but are willing to learn more. I've met so many teachers with so much passion they inspire me to want to change the world. Behavior Therapists who have been hit and kicked and screamed at again and again- and they still show up for work the next day with a smile on their face. They've taught us skills that we carry out at home that in turn have made my sons lives so much easier and happier. They rejoice over milestones and advocate for services right along side us.

We've met so many kind people that want to help. 

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Greyson, Parker and Frank

Even our garbage man is now a personal friend — he would text me before he got to our street because he knows how much my boys love the trash truck. People are good.

If people do stare when my son is having a meltdown- I don't pay any attention. I am more concerned with helping my son in those moments. I don't focus on the people who just don't get it. They are not worth any sacrifice of our precious happy.

Failure doesn't mean not doing it right- it means not even trying. I can't tell you how many times I've sacrificed awesome in the quest for perfect. And then feeling like I failed because something didn't go exactly as planned. I berate myself for the tiniest mistakes and the smallest of flaws. Why did you say that? Why didn't you do that? One day it hit me—what kind of message is this sending my sons? They are not perfect, yet I love them exactly for who they are. I love them even more for their human-ness. They get up every day and do so much out of their comfort zone. They try and try and keep trying- even when they aren't able to get it right. That isn't failure- that is INSPIRING and amazing and incredible. They have taught me that perfection is over-rated and failure isn't a lack of perfection- it's a lack of trying. I now try to offer myself the same grace that I extend to my boys. I want the world to love and accept my sons, and to do that, I must practice by loving and accepting myself — exactly the way I am. Now whenever I'm in unfamiliar territory and I don't want to do something I think- You can do this. If Greyson and Parker can move through this uncomfortable feeling- than so can you.

Everyone is going through something. I try my hardest not to compare the 'somethings,' because it's a terrible waste of energy with no good outcome. What's that? Oh, my life is harder? Okay, I win  or uh- lose then actually. Comparison is a game with no winner. Here's the deal- life isn't balanced or fair, and the sooner you accept that- the sooner you can move forward and seek happiness. Hard circumstance in life can open you up and make you softer to the world and to people suffering. Autism has grown my heart ten million times bigger. Now, when someone else is going through something hard in life, I try to reach out to him or her, and not be afraid to mention the word, whether it's death or cancer, divorce or autism. I've found an empathy for mankind that never before existed to this degree. We are all in this human thing together. There are so many ways we can inspire, share and connect, regardless of circumstances. We must pave the paths for those that walk with us and after us. If you focus too much on what isn't, you miss all the what is — and oftentimes, what amazing.

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Milestones feel like your own personal holiday. Like fireworks and Christmas and York Peppermint Patties and Disney Land and puppies and a million other good things rolled into one. They have the ability to make your whole day, week, month and sometimes year. YES- YEAR. I still SMILE when I think of the first time my son Greyson pooped on the potty or was first able to make a C sound and say "car". I realized early on that our family's milestones don't look like others, but that doesn't mean they aren't amazing. Sometimes I want to call them ten-milestones, because they arrive so infrequently. But because of that, every inch forward is celebrated in this house.  In fact, I might go so far as to say milestones are more amazing because they had to be fought for, earned and may have even taken forever.

Life doesn't have to be perfect to be amazing. This unexpected life also holds so much beauty. There is no parallel universe where everything is good and perfect and easy. When you visit that land of fiction in your imagination, it blocks you from being able to live and accept today. This is how your story goes, you have two choices, fight it or embrace it. I've done both, and fighting it takes too much energy. I'm going to screw up, I'm going to try things that don't work. I'm going to do 99 things to find the one thing that just might possibly be the home run. That's the path with autism, winding and weaving exactly how it is meant to be. My sons teach me to slow down. They help me notice so much beauty in the world. 

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They teach me the importance of hard work, taking breaks and never ever giving up. They make me believe that life can be amazing. Sometimes I still can't believe that God really gave them to me...I am so lucky.

When I meet new parents just starting out on their journey with autism, I tell them the good stuff. Because it exists. And I'm sure everyone else has already repeatedly told them the downsides, heartaches and difficulties. I just want to remind you that your life can still be amazing too. In life, happiness isn't a guarantee—but each one of us deserves to find it. 

Tuesday, February 17, 2015

paint the town

Less words, more pictures tonight. 

I've been fully immersed in life. Getting up early like a real grown up so we aren't totally scattered and chaotic in the morning as Greyson completes his first week at his new school. 

Grey's first week was amazing. I keep pinching myself. Waiting for the other shoe to drop. But I think this is it, and it's gooooood. Sometimes the first day is the hard, but usually it's the day AFTER the day that's the hardest. Like day one they are thinking- man, this place sucks. I can't wait to go home. And then you go back the second day and they FREAK OUT. Thinking- NOOO!!!! I already came here yesterday. I did this. I don't want to be here. But we didn't even have to get over that hump. Every day- he troops up into his classroom and fits right in.

Man, this kid is only five and he reminds me how life is done.

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He teaches me what is real.

You guys, I can't stop painting. The first room we did was our bedroom. And it's huge. And by the time we were done taping it off- I hated it. I wanted to keep it beige. And then we painted around the trim. And by the time that was done I SWORE we would never ever paint again. And it felt like it took DAYS to finish. Which it actually kind of did because I would work on it at night after the boys fell asleep. And it was awful. Awful awful.

And then we finished. And angels started to sing. And I think a bird even landed on my shoulder. And you could hear an actual harp. And the next day I woke up and had this weird feeling- like a craving. I felt like painting. I love that I don't think when I paint- I just paint. I get lost in not thinking and only painting. That's a HUGE blessing for this chronic over-thinker. While painting, the time passes so fast. I still hate taping and preparing the room- but not nearly as much. I just can't stop painting. And so painting and painting and painting we have done.

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This is my favorite paint color ever. Marina Isle by Behr. It reminds me exactly of the color of the life guard stands in Hermosa Beach- our home before we moved to the Central Valley of California.

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Our old home had so much natural light. Now I have to chase it and sometimes I forget. Today I am grateful because I remembered.

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Moroccan Sky and Pebble Gray. Gray is my favorite color, and second is rainbow. Does that count?

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The end. Happily ever after.

I like painting because it's like life. A small dose of color can turn something completely around. 

And I love painting because it's nothing like life. For the most part, I know what to expect when I paint. And there's a beginning and a middle and an end. And I can see the progress I am making and that is so motivating. And that happiness lasts each time I feel at ease in the room that I helped create.

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This afternoon Parker brought me my flip flop. And he bent down and put it on my foot. And then he ran and grabbed its match and put it down in front of me and said, "on". I was blown away. Of course we went right outside and chased the light together.

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Man, this kid. I love him so much that sometimes I miss him while he's still around. I know- it doesn't make sense. Or maybe it does. 

Okay- off to bed. Early to rise. Another day is ours to open and paint however we want.