We woke up this morning to muted gray light leaking in through the bedroom windows. Rain pouring outside the glass with increasing intensity. I felt the dry cracked earth of California's Central Valley sigh in relief.
In typical fashion we were scattered and hurried leaving the house for Behavior Therapy this morning. Binders and flash cards and packed snacks flying into bags. Greyson and Parker sat in the backseat of the car, mesmerized by the rain drops hitting the car windows and then rapidly zooming off kamikaze style. The drive was silent except for the slick sound of wet tires to pavement and the symphony of systematic drops hitting the strong steel of the car overhead.
I was captivated watching the boys experience the rain when we got out of the car. Their faces confused and scrunched up as if the single droplets hitting their face were rude and painful. They hated it. I tried to shelter us all with our small umbrella.
I had to make a second trip for the boys stuff, and Greyson came with me.
As we started to go back into the school, Greyson stopped, confused. He thought I was taking him back home with me. And we went back into the building and he started to sob. Like a real cry- the kind of cry your child makes that actually breaks your heart.
And he can't talk, but he so desperately needed to tell me what he wanted. And when I really start to think about that- the fact that he can't talk, I feel like I am drowning and I can't yell for help. I can't imagine how that would feel- to have so much to say but be physically unable to say it- the words a jumbled mess in my brain, my mouth unwillingly uncooperative. Greyson was yelling out "words" I didn't understand, but I could make out the word, home. He kept repeating his babble, with increasing loudness and intensity- hoping that magically I would finally understand him. I could hear his heart breaking, and I could feel my heart breaking for disappointing him.
I turned the lights off in the room we were in and I put him on the large occupational sized swing, hoping the swinging motion would calm him like it usually does.
And he was panicked, home, he intently repeated- even looking me in the eyes as if to urge me to understand him enough to bring him with me. I scooped him up into my arms and sat on the ground with him and we rocked back and forth and back and forth and back and forth. He fought the weighted blanket I placed on his shoulders and head, but then finally he just relaxed and stopped trying to talk.
I know, I know, Mommy understands you. I know what you are telling Mommy. It's okay, I'm in your head. You want to go home. I'm so sorry baby, but we can't right now. Right now it's time for school. First school- then home. I will come back in three hours. I'm so proud of you and how hard you work. I am so proud of you.
And I had to pretend to be strong as I gave him a couple last squeezes and walked back to the car. Pissed at myself for not knowing the magic combination of words to soothe his soul. Despite the pounding of the rain, I could still hear his screams as I went into the parking lot. I got into my car and I cried. And I sat there a good long while, unable to leave.
Everyone has a different take on autism. Some people with autism are proud of the way it makes them view the world. Some absolutely do not want a cure. Some parents say they would not change the fact that their child has autism because it helps to make them who they are. I absolutely respect those sentiments and wouldn't dream of telling someone else how to think, especially since each case of autism is so different. However, that is not the case for me. I am so sorry that my babies have autism. I would take a magic wand and erase it in a second. I see them struggle daily. I see them work hard in Behavior Therapy when they would rather be at the park or the zoo. I see them try to form words, their mouth uncooperative and their eyes pleading with me to understand them anyway. I see Parker get so mad that he throws himself down on the floor and then slams his head into the floor behind him with a sickening thunk. He's frustrated and misunderstood. Two things we all hate to be. I know technically autism is a neurological disorder, but I am perfectly comfortable calling it a disease too. Poe-tay-toe, puh-ta-ta to me.
Every day the boys are taught things broken down into minuscule steps that the rest of us learned naturally. They both work so hard. They are my heroes.
I was so thrilled to pick them up and bring them home with me. They were thrilled to come home too.
And it was fitting that the rain had stopped...
And the skies looked like this, and all was right in the world again.
Happy ohmygosh it's finally Friday.
So much Love,
I can't wait to meet you in Doe Bay.ReplyDelete
You're amazing, lady.
I can't imagine what it would be like to be misunderstood every day, to have something important to say and not get it out. Your boys are my heroes too.ReplyDelete
You are a hero as well.ReplyDelete
There is nothing that hurts worse then when your babies are hurting. Great-big-huge-hugs to you.ReplyDelete
- a mama in Michigan
Sending hugs and love for Friday and for a wonderful weekend.ReplyDelete
May your heart be filled with happiness, joy and love. I have friends with children with autism and see them struggle with so many things we take for granted. Your words are so heartfelt and inspiring to many people. My heart weeps for you when you have difficult days. May you have many more smile than tears sweet Chrissy~ReplyDelete
Your writing breaks my heart, because it is so reminiscent of what I felt a few years ago. I wish I could tell you that everything gets better. I wish Autism wasn't a spectrum, so I could tell you what to expect as your boys get older. If I could tell you anything, I'd tell you that Autism brings a lot of good into your life. But if someone had told me that when my son was newly diagnosed, I would have murdered them with my bare hands. Hang in there. Life will look different tomorrow, and next week, and next year. You might just become one of those people who wouldn't let Autism be taken out of your life for a million dollars. But it's okay that today isn't that today. I know it's cheesy when people call it a marathon, because it isn't. If you had to run every second for the rest of your life, you wouldn't call that a marathon. You'd call it impossible. So if nothing else, know you're not running alone. Many have walked in these steps before, and will walk after you.ReplyDelete
Thank you as always for sharing your story through pictures and beautiful, honest words,. For allowing the world to see and hear you, thank you for sharing your amazing beautiful boys. We have never met but you all own a piece of my heart when I look at your photographs and read your words I am moved sometimes to tears, sometimes to laughter. Your road is not an easy one and I understand that, your boys have to work so hard to achieve things that others find so easy, I understand that too but I see the love, the beauty in your life. Children like yours have an ability to change people, to bring change to the world in ways we cannot always see. From the bottom of my heart I thank you for all you do for them, for sharing your feelings and allowing others to see your life. It is a true gift you have. I hope your weekend so filled with sun and rainbows after the rain one day perhaps I can give you all a hug in person but for now I send you one. With love and gratitude, Nanny DebReplyDelete
Oh my goodness. Poor Greyson and poor Chrissy. My two typical kids challenge and frustrate me every day, but I can't imagine the ongoing struggles that you and your boys face. All I can say is - it is very clear how much you love your boys, and how much you give them every single day. You're an amazing mother (and photographer! and writer!).ReplyDelete
Thanks for sharing. I agree I respect e everyone's opinion on Autism, but when I see my son struggle so much just to communicate with me it breaks my heart. I would give anything in the world to make it easier for him.ReplyDelete
just tried to catch up on your blog- haven't been on the computer much. new job, new house, painting, painting, snow, cold, snow, cold, mom-ing... its good to be back. you help so many people by writing your blog-- i bet even yourself, right?! every time i read you, i take away a few phrases that i repeat in my head when i'm having a hard time. thanks. i know that loneliness of being a stay at homer...you aren't alone. and i know that heartbreak when your kids are hurting...worst feeling ever. when its hard, just keep thinking yourself out of the hard...susan from paReplyDelete
I can never understand what you go through and my heart breaks for yoI as you survive daily struggles with children who have autism. I haven't rear your entire blog so I don't know if you are familiar with a video called Signing Time. It teaches children American Sign Language. I have heard so many families who's children with autism were able to communicate via sign language. Of course all children are different and I mean no disrespect just wanted to share what our family has come to love for over 11 years. Blessings.ReplyDelete