Thursday, August 11, 2016

Little Light Bulbs

We turn Summer over to shake out the very last, most precious golden drops of it. The circle of life makes us dizzy at times. We are born and we die. We Summer and we 'Back to School'. We "it's so fricking hot," and, "I'm over the cold." And each season and milestone and moment shocks us; we can't believe it's already here. This ride goes so fast, sometimes it's hard to pay attention to the view.

So we are left somewhere in the middle. The center of annoyance and obligation and purpose and carpe dieming. Hello World, so glad to meet you.

We took a trip back to our old home of Hermosa Beach in Southern California. Because it is Summer and we could, so we needed to. My heart truly aches to say goodbye to Summer. Goodbye to our boys' therapy aids and our routine. Goodbye to Grey eating lunch at home with me every single day. Goodbye to pool baths and staying up too late. Last school year was just awful, like a bad Lifetime made for TV movie, and I just wasn't ready to even begin to think about sending him back again. I hoped the ocean's tide could infuse me with the strength I would need to make it through this year.


There were only three things on our agenda:

1. Visit with my friend Wendy


2. Go to the beach and Pier

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3. Swim in the hotel pool.


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The boys would be ok if we never left the hotel. Between the hot tub and pool, the elevator, and a big machines that only makes ice- what more is there to want from the world?


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We are finally at a place where we can travel and stay a couple of nights in a hotel with the boys. For so long it was impossible. Not impossible- hard- literally not possible. And the few times we've done it, I'm pretty sure we've had hotel management called on us every time.

This time was a dream. Perfection. Pinch me.

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Grey was most comfortable keeping his distance from the water. He loves the sand, but he's been scared of the water ever since last year when we took him to Surfer's Healing- and just kind of threw him on a surf board without giving him any warning.

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I wanted him to love the ocean again so SO bad. I wanted to yell at him, "LOVE THE WATER DAMNIT!!!!! RIGHT NOW!!! " My heart ached for us to love the same thing at the same time.

Instead, I made him put his toes in every so often while he screamed at me, and I would then let him go back to solitude and sand.

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Parker, on the other hand, could live outside. Anywhere and everywhere outside all the time. And if water is involved? Yes please!

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And he and the Ocean are the very best of friends. He would squeal and roll in the waves and cover every centimeter of himself in sand.

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Grey enjoyed the Ocean from afar.

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And we all enjoyed walking around the pier until the sun set deep, deep, deep into the Ocean and it was night. 

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The pier walkway sparkled like diamonds with white twinkle lights overhead. Holy cow beautiful.

By day two, my ache had gone away. So what he didn't like the Ocean? Maybe one day he will again. And he's so happy in the sand- I will just be happy that he's happy, I decided, and this time- I actually meant it. Not to mention- feeling sad that Grey didn't like the Ocean did not allow me to focus on how happy I was that Parker did.

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And that truly makes me happy. I played my heart out with Parker. The water was warm and we were sandy and soaking wet, and most of all happy. And while Michael was taking a couple of pictures of Parker and me, I suddenly saw something out of the corner of my eye...

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I was in shock. I couldn't believe it. I was dying laughing when I saw this picture and my expression.

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Here was my Grey, playing tag with the Ocean. All on his own. Squealing and flapping in delight.

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As time went on, he got braver and bolder.

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And then he just got on in there. It was the best day ever. It still kind of feels like a dream. Little Lights bulbs, that's what I call these moments. Those tiny little moments when something small just finally clicks. When I learned it was autism, I wanted that one big fix, one big switch I could flip on- to cure them, or fix it or make it stop. But there is no such thing. 

Instead what we have is Little Light Bulbs. And although they are not the biggest or brightest of all lights, together, they will light our way. 

And on the way home I realized- together we will make it through this back to school transition and the upcoming school year. We can and we will make it through anything life has to offer us. Grey is invincible. And maybe, just maybe- so am I. And something tells me if these words have found you- 

than 
so 
are 
you.

Love,
Chrissy














Tuesday, August 2, 2016

Tips We Use to Transition Back to School

Going back to school can be extra stressful for children with an autism spectrum disorder (ASD). People with ASD often have greater difficulty with transitions. This may be due to a greater need for predictability and routine, challenges in understanding what is coming next, or difficulty when a pattern of behavior is disrupted. 


Transition strategies can reduce anxiety, increase appropriate behavior and help students participate successfully in their school environment by making a more gradual entrance. Here are some things we do to help with the back to school transition. 




1. Spend time at School


A couple of weeks before school starts, we go to visit, hang out on campus and discuss the upcoming change. 

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We talk about the end of Summer and the beginning of a new school year. If the school has a playground, that's a perfect non threatening environment for your child to acclimate to the space again. Some Teachers are available and open to a meet and greet, where you and your child can come visit the classroom and meet the teacher before school begins to take some pressure off the first day. 




2. Visual Supports


There are several research based, visual strategies that are used to support individuals with ASD in preparation for a transition. One of our favorite ways to prepare for the unexpected is by using Social Stories. This tool is a great way to identify a concern and develop a story that supports the desired outcome. The stories are written from a child's perspective using language that is appropriate for that child's development. 

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I write in the Third person because Greyson is not yet familiar with pronouns like me, my and I.


Your story should address any specific strengths and deficits your child may encounter during the school day, while always creating a positive outcome. For example, if your child has difficulty eating lunch in the cafeteria due to the volume, you can remind them of self regulation strategies that have been successful in the past. 

A page in your story might say, "Tommy does not like the loud noises at lunch. If it's too loud, he can cover his ears, or ask Teacher for his head phones to wear so that he can eat lunch comfortably with his friends. If the noise is still too much, Tommy can ask to finish eating outside." Be sure and address any of your child's concerns, whether it be sensory, social, transitioning etc. 

Greyson really looks forward to school recess, so our story will remind him of that preferred activity.  "After lunch, Greyson has so much fun playing on the playground and climbing the monkey bars." 

Social Stories are great visual strategy to help a child organize and interpret events, know what to expect, as well as develop a better ability to self regulate. Reading the story nightly for a few weeks before school begins can help alleviate some of the anxiety associated with the upcoming change.




3. Dress Rehearsal


There's nothing worse than stiff, brand new shoes or a scratchy shirt tag. But to a child with autism and sensory issues, these things have the potential to ruin their day and seriously impede their ability to learn and adjust. 

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Break in new shoes and clothing before school begins. If you can, have your child use and wear these items for a few weeks before their first day. Depending on how much routine your child needs, you may want to use a new lunchbox or back pack several times leading up to the start of school. 




4. Communication Notebook 



Part of building a good relationship between school and family is communication. I know this tool helps put my Mommy transition anxiety at ease, and it also helps to set your child up for success. A frequently used writing tool for home-to-school communication is a notebook the child carries home daily. 

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This is our notebook from last year. I put a picture of Greyson and share some information about him for the Teacher and aids. You can also put your contact information and email on the inside cover so the Teacher has quick access. 



The most successful models contain a two way exchange of information. Just as we desire to know what our child is doing at school, the teachers desire to know if there is any information about your child that may affect them at school. Perhaps your son has been crying frequently, or your daughter woke up at 4am and hasn't gone back to bed. Those are the types of things important for a teacher to know. Make sure your child's teacher is willing and able to contribute to this method of communication, and be sure and let them know what kind of information, and the frequency you are looking for. Each parent is so different and their request for information (ie child's behaviors, activities or therapies worked on, Speech notes, lunch eaten, mood etc.) is unique. Your child's Teacher may already have a form they use for meaningful daily communication.

Establishing a trusting relationship is critical, especially when working through challenges that may occur during the school year. Healthy communication is key to this important relationship.

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Despite all the planning and execution, it often takes a few weeks for both students, Teachers and parents to fall into a working routine, so be prepared for a few kinks along the way. As a mother, I know how hard it is to let your child out into the world. Especially if they don't have the verbal ability to tell you about their day. 

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But sometimes we must simply let go, and let them share their awesomeness with the rest of the world.


Thursday, July 28, 2016

power of choice

It's too hot to cook. Or write. Or actually even think properly. At least that's what I'm blaming my perpetual brain fog on this week. I'm not complaining, because I'd rather be hot than cold any day of the year- not that we have a choice on that one. But I'm also not super motivated to do much besides read, take a nap, sweat and eat. I'm wearing-too short for a 42 year old- jean shorts and a tank as my uniform. 

The boys have been completely unaffected by the heat. As in-out the back door at 8am and ready to play alllll daaaaay looooong. They can swim in ice cold April swimming pools, and run around in 108 degrees heat. What gives? I miss the flexibility that childhood brings. And the willingness to overcome any physical discomfort in the sake of play. 

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Parker only rides his bike now. From room to room in the house. Outside to inside. He had my put it in his bed. He tried to bring it in the car. It's as if he can't exist without it, so I let him be who he needs to be right now. This phase will pass, and a new one will replace it. And luckily this one- is pretty darn cute.

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One day, when I'm in Heaven, I will finally be able to see the world as they do. And I will cry it is so beautiful. 

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An excerpt from my book, Little Light Bulbs (Daily). After two years, I'm only about three chapters in. I plan on writing more when both boys are in school full time. 

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The pool is where we spend most of our free time.

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He swims under water now. Like face in. He dives to the bottom for toys. He swims on his back. After so much struggle, I still can't believe my eyes are telling the truth.

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Thank you, God. It happened in your (not mine) time. Never mine. And it's perfect.


I'm so over the constant flow of politics on TV and social media. It reminds me of the old comedian, Henny Youngman's joke: The patient says, "Doctor, it hurts when I do this." And the Doctor says, "Then don't do that." I really just need to quit the internet for awhile, but instead I keep subjecting myself to the awfulness.

Bascially, I have dietary restrictions- I am inspiration powered and on a constant Inspiration Diet. And when I ingest too much turmoil in the world, and pain and contradiction and and hatred, and murder- I shut down. I turn myself inside out to protect my skin. But then my insides get hurt and I just can't win. I need to limit the time I spend investing in things that make me feel bad. Like reading comments people leave on Facebook with my jaw dropped down and rolled out onto the floor in front of me. I start to think that is reality- but it isn't. At least it isn't mine. 

We have choices. We always have choices. And if something causes you pain, choose something else.

When we go to McDonalds, we give the boys an option of ice cream or fries. Greyson always picks fries, and Parker always picks ice cream. Until lately, when Greyson started telling me, "One...two" when I asked.  
"Do you want fries?" 
"No," he says, "one-two."
"Ice cream?" I counter. 
"No, one-two".
"Fries AND icecream?" I say.
"No, one- two" he responds.


I soon realized- he wants both, but he doesn't know the word and. He thinks that one or the other is the only option he ever has in life. He's so used to only being given one choice all day long- in therapy and in life. "Is it red or blue? Do you want water or juice? Under or over? A or B? Chocolate or vanilla?" 

Greyson has no idea of the power of AND. Oh, the gorgeous and enlightening power of and. We can be serious AND silly. We can be Rebulicanny and Democrat-ish. Sad and happy, empty and complete, confident and insecure, all swirled into one. Powerful and weak. So often we think we are limited by simply one or the other, when we can actually have both. Life is like a multiple choice test, and sometimes, all the answers can be correct. 


And now, sometimes Grey gets both, to show him how good and is. I can't wait to teach my boys that they have options, and so often- most importantly- more options than the ones that they are given. We are only limited by the choices we make, not the choices we are given. And we can almost always choose an and.



Friday, July 15, 2016

time to fly

Sometimes life happens and pulls us out of our comfortable existence. After that, everything is forever changed. And at first, it feels wrong and unrecoverable. So very wrong. And it also feels like everything we thought we knew about the world was also wrong. 


Want to find out who your real friends are, the ones that can help carry an uncomfortable load? Just experience trauma. So on top of your life feeling like hot, itchy, too tight polyester tights, you lose friends or connections because your story no longer fits theirs. Your story and your new needs make them uncomfortable. Their same life makes you uncomfortable. People can only meet you as deeply as they meet themselves. You are forced to get to know what you are really made of.


I began to realize our life was not the same as everyone else's when Grey attended Early Intervention preschool twice a week. A friend asked me if I wanted to meet her at (the gosh awful) Chuckee cheese with 2 year old Grey and baby Parker. We had lived in Fresno for about a year, and I was just starting to make real friends. And I really, really wanted to go, but it was our first week of home behavior therapy- a therapy used with kids with autism. I asked the person in charge of our previous ABA therapy program if we could go to Chuckee Cheese with our therapist.

I'm sorry, Grey is not ready for an outing yet, she said, in that -actually not sorry at all- way. He needs to learn safety commands first. Otherwise it's dangerous for him. (Commands? I wonder. What is he, a dog?!)

Oh, Ok, I say, ready to just leave and go home for a quick lunch before his therapy. 


He's just not there yet, she says, looking at me with pity. 


I feel myself shrinking into the ground. Wanting this conversation to end. I get it! I want to scream. I've raised him! I know how hard he is! I know he doesn't stop when I say stop! I know he will try to run in the parking lot. I know he has no fear of me or of a moving car. I ALREADY GO OUT WITH HIM ALONE EVERY SINGLE DAY. Wouldn't someone accompanying me in fact be SAFER? But instead I actually say, Ok, I understand, like I do...but I don't.

I walk to our car to leave preschool. A task I always deeply dreaded, due to the fact that we had to park far, and walk by a playground but never had time to play. It always resulted in a physical struggle. I would fight Grey's tantrum with all my might, while Parker was strapped to my chest, sometimes getting hurt in the crossfire. I wrangled Grey to the car and buckled him in his carseat. I go to quickly change Parker's diaper in the back of the car. I open the hatch to our car, and the dohicky responsible for holding the door up and open is unsteady and the door slams down on my head.

Owwwww! I yell out in angry pain. It was the gateway to all my sadness. I start to sob in the parking lot. My head hurts soooo bad, I want to holler angry curse words at the top of my voice. But my heart hurts so much worse. I get into the driver's seat, and I can't function enough to start the car. All I can do is cry. I just want to go to Chuckee Cheese, I cry over and over again. I just want to be a normal mom, with a normal life. I don't want this one, because this one hurts.


That was five years and a million times ago that I have realized that our life is not the same. Sometimes our life is different indifferent. Sometimes it's different bad. And those realities can feel like a door slamming on my head. I've also realized, so many of our lives are not normal. Even if they look normal.

There is no Summer camp for us. No dropping my boys off and taking off. No letting them play in the backyard alone while I make dinner. There is no tossing the ball in the front yard with dad. No books before bedtime, because they just aren't interested. No regular play dates because we have therapy every day. Besides - most kids don't say- let's invite Greyson and Parker, they are so much fun. They don't say that because my kids aren't fun to be around by kid standards. They don't even play with other kids- so I get it. But it hurts. All of that can build up and hurt. I'm not the mom who can take off on a whim to Chuckee Cheese. Despite the fact that I hate Chuckee Cheese, that makes me sad at times.


But I've also realized, sometimes our life is different good. Really, really different good.There are experiences we've had and people we've met that we never ever would have- had our life not been touched by autism. Teachers who love my boys like their own, and get almost as excited for milestones as we do. People who go out of their way to include us in the best life has to offer. I'm reminded again and again, people are good. 

My boys show me the best of humanity.


Today we got to experience different good in our life, and we are all still glowing. Last week I posted a video on Facebook of Greyson making his latest request, "I ride airplane". Now you know when you have a child that is language challenged, you are constantly trying to help them understand the power of their words. When they ask for something- you do your best to try and make it happen. Especially when they use three words ands verb they have never used spontaneously!  And let's be honest, sometimes when you see so many things in the world your child can't have due to autism- you want the answer to be ABSOLUTELY YES for once. 

For the past couple of months, Greyson has been making this request, "I ride airplane". Sometimes he asks over 100 times a day-seriously. And he stumped me. We aren't going on vacation anytime in the near future. Toy cars, we can do. Air plane rides- not so much. And this kid was ridiculously dedicated to his request. Sometimes he said it over and over as he fell asleep at night, "I ride airplane."


So, soon after I posted a video of Greyson saying, "I ride plane." An amazing woman who reads our blog, reached out and offered to give Greyson that very ride.

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My face still hurts from smiling.

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He was smiley excited. I don't think I have ever seen him smiley excited in his life.


So excited he forgot the "Ready"!
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His energy and body was calm. He stared out the window, silent. Mesmerized. Not an ounce of fear. He LOVED it. Happy. (So so happy). His happiness instantly became my own.

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Greyson and his new friend.

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Dawan, and Tom- Strangers that turned into instant friends, You are incredible, and you made a difference in our lives today. Thank you for your generosity of time and heart. Thank you for making my boy happy. Thank you for making the answer, YES. Thanks for taking Michael, Grey and I on an amazing ride throughout our beautiful valley.

Most of all, thank you for reminding me, and everyone that reads this- that people are (SO) good. The world needs it more than ever now.

XOXO, 
Chrissy

PS- Greyson. Don't even think about asking for a pony. Love, Mom






Wednesday, July 13, 2016

regular old life

The storm is coming but I don't mind
People are dying, I close my blinds.
All that I know is I'm breathing now.
I want to change the world, instead I sleep.
I want to believe in more than you and me.
But all that I know is I'm breathing.
All I can do is keep breathing.
All we can do is keep breathing
Now.
ingrid michaelson

We are smack dab in the middle of Summer. Rotating smoothly in the machine of our routines; I can almost hear them hum. The ending of the school year was hard because it meant our routine would change. The world is familiar with growing pains. The autism world is familiar with an additional term: transition pains. We feel them deep and big and wide here, anytime there is change in the wind. Sometimes big, sometimes small. But they are there, punctuating life. I have felt them, long before I even became a Momma. Life blows and change whirls up around you. But I just got here, I always think. And we plant our legs and roots and search for comfort again.

Pause for just a second. Take a deep breath in. Exhale. Slow down time for just a moment. Are you in a moment in transition, or are your machines rotating. Either way- it's exactly where you are supposed to be.

Now, I pause and remember for just a moment- our machines are rotating, life is the same. It is good. We are status quo. But it is boring and aching the living daylight out of me. It reminds me that I do, in fact like a little bit of change to feel balanced. I'm always searching for balance.There's so much I want to do and say and write. But like the song lyrics above state: instead I sleep.

I will embrace my days. Live my simple life with intent. Remember that this ebb and flow is natural and necessary. And so is sleep. I often go to bed at night, exhausted, but not really feeling like I accomplished something.

I remind myself that life is not a completed mental list of daily or weekly accomplishments. Life is not a row of check marks that must be checked off for worth. What is life though? A question that usually runs on a loop somewhere in my always thinking mind. What is life if it is not change, and it is not staying the same? I guess Life is letting go. Not needing or trying to make Life into one particular thing. Life is change and it's the same. It's easy and it's so freaking hard. It's loss and pain and goodness and God. It's not simply identifying yourself with your nouns- Mom, Police Officer, Runner, Teacher, Sister, Friend, Husband, Student. Life is constantly changing, and amidst the change- it is letting go.

It's one of my 2016 intentions, "Letting go".

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I know most of the time when I feel that awful elephant on my chest, when I can't go a real breath in, when I am feeling stuck or unworthy or afraid- chances are, I am holding on to something I shouldn't. Pain. The past. Expectations of my life and other people in it. I am SO GOOD at holding on to all that crap. If I could just free up that mind space, maybe I wouldn't be so exhausted.

What would it feel like if you just decided to let go? I think for me, it would be so scary and so good. A little pain is always required in the realm of change.

Some scenes from Summer...

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This happened tonight. And Lifetime could totally turn this into a horror movie. Scary music would play as the unsuspecting mom grabbed a cart, without realizing that both her young boys got their own kiddie cart from hell. She never knew what was coming and didn't even have time to put the kabosh on the kid carts because the small blond one was already running in circles around the banana stand. Seriously, I was yelling and laughing and then pretending not to laugh as mostly Parker RAN at full speed yelling, READY, SET, GOOOOOO!!!!!!! Oh man, the looks I got. I mean, come on woman- you have a whole other foot right on the end of your other leg. And I still need to go to the grocery store tomorrow, because I didn't get half of what I needed. We just needed to get the hell out of there. And it was scary and hard, but we tried. I tried. And at the end of the day- those are some of my favorite parenting memories. Be proud because you tried, not because it was perfect. (Because it so wasn't).

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A totally out of the norm last week at lunch celebrating my friend Lisa's birthday.



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My wonderful parents were in town at the end of June.


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Adventures in bowling. Has the potential to be another scary movie, but this excursion wasn't so bad.

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Greyson showing Grandpa the cars he wants.


As I look through this pictures I am filled with just a moment of peace. Living and accomplishing things are two very different things. And maybe, just maybe our worth from living, being and loving, is so much more important than accomplishing.

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So much love, Chrissy

PS- Miss you Mom and Dad. xoxo