Wednesday, April 2, 2014

world autism day

Today, April 2nd was World Autism Day. From the outside, it was a regular old day for us. Grey went to preschool, Parker had Speech and Behavior Therapy. I talked to a school administrator about possible school placement for Grey next Fall.  I talked to a state Psychologist who had to painstakingly review Parker's autism assessment with me- while I silently laughed at the irony that even on World Autism Day- autism doesn't take a break.

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And also, we greeted our friend Frank and his big shiny truck.


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Parker even brought a trash truck outside with him.



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For those interested, these awesome super POWers shirts can be found HERE. $10 from each shirt goes to The Heart of the Horse Therapy Ranch.


But today was also different. It had me thinking big picture and world and awareness and hope in its purest essence. It had me feeling love for all over the world and from all over. Autism is about every one of us in a world where we love and take care of each other. And we felt the love and community more than ever today. Support from those whether they've been affected by autism or not. It's like a big huge party and we were all invited. Thank you for being here.


And thinking about tonight's post I wondered- What do I want the world to know about autism?

So many things, it's hard to turn them into coherent thoughts. Sometimes I feel like my boys are just like any other kid- and I want you to see that about them and know that. And then sometimes at completely different times, I know my boys are absolutely unlike any other child out there. I want you to understand how they are very different so you understand and are able to recognize it in others--That they are different, and that's not a bad thing. They are the same and different, all swirled into one. I think I want us all to be better about accepting our own differences...maybe even celebrate them- because only in doing so can we accept others for being different too.

I thought about what I might say to the old me. The two-years ago me just realizing that she had a child with autism. And the thing is- I still feel like that girl in many ways. Sometimes I feel like this is brand new. And then I thought about a couple of the Mom's with children a little bit further down the road than we are- and I knew I wanted to share them and their babies with you.


This is Nick. You may recognize him from this post.

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His eyes say it all. At two years of age Nick still wasn't talking. And then subtly the behaviors started. He would pace back and forth in backyard, looking at everything out of the corner of his eye. He lined up toys. One day the pieces all came together and Nick was diagnosed with autism. Nick is now seven, and he's amazing. He's nine parts sweet and one part sly mischievous little smile. His energy is golden and you can just tell how deeply he soaks up life and its adventures. What do you want the world to know about Nick? I asked his Mom, Melanie.

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He works harder than anyone I know -she said with her voice breaking, because everything is harder for him. And he wants what we all want. He wants to be loved, and listened to. Acknowledged and heard in his own way. He is different-he's not like his brother or sister. And it's not wrong or bad- Just unique. 

Oh, I know... I know. And I know those tears of pride and joy and sadness and ache. They work so preciously hard to do what we do naturally and sometimes it's just so not fair. Sometimes it's heartbreaking, but always it's just plain amazing to witness their sacred try and try again. We want you to see them and love them exactly the way they are.


I asked her what she would tell a family newly diagnosed. She said to fight for the best therapy and resources available. Don't accept what someone tells you is the answer if your parenting gut tells you something different. Sometimes we are the only ones who can talk for our children. She would tell a new Mom, You are stronger than you think. She remembers feeling- There is no way in hell I can do this. Feeling so scared, so sad, so alone. But you just keep going- you are way stronger than you think. 

And so are you, Melanie. In sharing Nick- you share the most beautiful piece of you.

Sometimes our children make progress so slowly it is hard to see in the moment, and we discussed that we make those same strides as parents too in our acceptance process. Mel said she no longer thinks autism all day long, and until she said that- I had forgotten all about that time in my life.

I remember those days like they just happened. And then one day you can breath in and out again and it doesn't hurt so much with each breath. One day you feel like showering again. Food has taste. One day you wake up and don't feel like a stranger in your own life. And although you still don't know what the future holds, one day you wake up and know that everything is going to be alright.

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Nick is so beautiful, perfect and amazing just the way he is. He just sees the world differently than we do- which sometimes makes it hard to fit in. It's amazing how much you can learn from a child who struggles with communication. As their Mommas we know them better than anyone. You know every sound, every blink. You know that when their hands do this it means that. And when they make this sound it is good- but this sigh is bad. You pick up on everything, and you get to know them on a level that is so deep it can't be explained, only felt completely. Thank you sweet Mel. The light that shines so brightly in Nick- I also see in you. XOXO


Our photo shoot on Sunday was fast paced. Your next person is here, Chrissy.

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Hello, I'm Kirby- the handsome and tall young man eloquently stated. Kirby, I ran through my mind's memory of emails I received booking the shoot. I think he has autism...? Every child with autism is different- I say it and I hear it all the time- yet it still shocks me with each child I meet. Wow. I can't believe what Greyson has is autism and what that child has is autism too- I've thought this at least one hundred times.

Kirby was so many good adjectives I don't know which one to start with. We chatted about capital L Life. His favorite kind of music -which is Country. His favorite food which is fettuccine alfredo. He was receiving his Future Farmers of America (FFA) state degree the next day and was proudly wearing his uniform.

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I asked him his favorite country song and he even started to sing it for me-Big Green Tractor by Jason Aldean. He knew all the words- and Kirby sang while I danced and smiled through my tears and thought about the possibility of a future for Greyson and Parker- a future so bright it made my eyes water.

At the end, I asked him if I could give him a hug and he said he thought that would be alright with a smile. He let me know he really enjoys meeting new people. Kirby is a big teddy bear hugger. He has been on my heart for days. Today I thought --I must share him with the people of the little guys and gals just starting out. I need to tell them I've met Kirby and no matter what- everything is going to be alright.

I talked to his Mom today and asked for permission to share Kirby with the world. We talked a little bit about his story. At two or three he wasn't really talking- mostly just grunts. His Mom started to notice other behaviors. He was a screamer, she told me. I totally understood because so was Greyson. Blood curdling screams- screams that make you think their leg was just cut off. Anytime an unexpected transition came along he would scream and tantrum. Kirby was overly-focused on things. He would pace in the backyard and wear down paths in the grass.

I asked her if she was scared then, and she said she was. That each new thing, whether it's school or life made her wonder- Can we really do this? But of course they could and they did and they still do. Kirby was diagnosed at a time it was just being discussed in the media. She said Kirby is a trailblazer- and if he needed something that didn't yet exist- it was created for him.

Now I will let you know, Courtney his Momma is also a trailblazer. An autism pioneer paving worn paths in the grass for all of us too.

I asked her what advice she would give other parents. She said to find a good 2-3 people whose opinions you trust. Ask them a million questions. Don't be afraid to ask anything and remember every child is different and every family experience is different.

Does Kirby know he has autism? I asked and my heart stood still. She said he does. At around 6th grade she sat him down and told him because she felt he was old enough to know. He's always known his brain works differently than ours and he is okay with that. He describes it as everything he thinks and sees is like a movie in his head. Kirby had big dreams and hopes and goals for a lot of the things- like get a drivers license or drive a tractor one day. She's wanted to let him know that some of his autistic-like behaviors may get in the way of those goals, but more importantly she wanted him to know he could control them at times. She wanted him to be aware so he could make sure it didn't limit him.

As a Parent, you make decisions about behaviors you are okay with and ones you are not okay with. I'm completely fine with Greyson flapping his hands in delight. I'm not okay when he hits himself in the head over and over when he gets mad. There are some self-regulating behaviors that are good and that help keep them calm. Even at 16, when Kirby gets home from school he goes outside to swing. When Momma said that it made me so happy. He still swings and paces to be relax and be alright in his head.

When I shared his pictures with his Mom she told me that Kirby told his grandma "the happiest lady" took his picture. That right there makes me cry. He gets me- and he was sure right about that- I am happy. A couple of years ago I didn't think happiness would ever be possible again.

On Facebook I wrote: Today I stand in unity, strength and love with you, my autism parents. I celebrate milestones with you and I cry over fear or disappointment with you. This may not be the life we expected but it is a life we LOVE, with babies we are honored to call our own. Today I honor you- Greyson and Parker. You are my whole heart, my wildest dreams come true and my whole wide world. If you are honoring someone with autism, or someone with a child with autism- leave their name in the comments. We are all in this together. LOVE, Chrissy

So today we ALL honor you, Greyson, Parker, Makena Grace, Gavin James, Jameson, Owen James, Caleb, Toby, Momma Ashley, Matthew, Justin, Kirby James, Noah, Teddy, Ian & Christopher and their parents, Nico, Ian, Courtney & Kirby, Connor, Alice & Claire and their boys, Patie David and Thompson, Jack, Thomas, Clayton and Christan, Georgia, Ethan, Gavin, Steve Jenny & Rachael, Ethan, Landon, Maxim, Layne, TJ, Matthew, Haydin, Brandon, Graeme, Megan, Tegan, Timothy, Andrew, Ellie, Theron, Harmony, Emmie, JT, Brody, Tegan, Brayden, Norah Rose, Elizabeth and her son, Natalie & Brody, Liam, Ben, Pablo, Adeline, Nolan, Colin, Benjamin, Nick, Taylor Jane, Emerson, Connor, Saniel and Alex, Abby and Logan, Marcus, Xavier and Kaleb, Gigi, Rocco, Momma teacher in Florida, Momma Deb and her 3, Noah, Harper, Layne, Braeden, Ben, Mamma Tami Cathy and Courtney, Simon and Molly, a dear friends niece and nephew, Shelly Mike and Brady, Alex, Adam Beth & Paul, Bennett & Brady- As well as all the amazing teachers that teach our children.

And Kirby, This song is for you...


Big Green Tractor from Aldean Army on Vimeo.

Love,

Chrissy

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And on instagram at @lifewithgrey

6 comments:

  1. Thank you for sharing the stories from other parents! I want to know what it is like as the children get older and I love hearing from the older children what autism is like for them so I can better understand what our little guy sees, thinks and hears.

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  2. Your words inspire me even though autism is not the challenge I deal with. Your realness,revealing your thoughts and emotions gives me the courage to do the same. I need that inspiration, I just do and that's ok. Sometimes I just can't seem to inspire myself. So, thank you.

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  3. Jennifer MiracleApril 3, 2014 at 7:32 AM

    Gosh darn it! I love this place. Thank you for sharing these beautiful boys and their stories.
    Love & happiness to you, sweet Momma! xoxo Jen

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  4. So so beautiful. Love what you have shared here. Your heart must be so full ;)

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  5. Wow, I'm blown away....so moving. To all the mommies and kiddos, thank you for sharing with us. Through your stories, we learn. I imagine such sharing cannot come easy. But please keep sharing.

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  6. In these early days of diagnosis positve stories like this really help me through my day.

    Thank you. The pictures and people are amazing!

    Colleen

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