Bouncy house

I LOVE carnivals. There is something about riding thousands of pound of steel while moving 75 miles an hour toward concrete (see steel venom, valleyfair) that gets my blood going. I love the way I feel when I'm a hundred feet above the ground without shoes on, looking out over the landscape and that sharp breath I draw on the first drop. They could scream tract me for horror flicks. I am an involuntary screamer. My lungs hate me, as does my throat. Family amusement parks are never the fun filled promise they show on t.v There is no laughing couple holding hands while their angelic cherubs skip along to the next ride carrying balloons. Eye roll. Its more like "MOMCANWEGOONTHATRIDEONEMORETIMEGIVEMESOMEMONEYIWANTSODAIWANTTOPLAYGAMES THATCOSTFIFTYDOLLARSDADDYWINMETHATGIANTBANANAIWANTHOTDOGSANDCHEESECURDSANDFUNNELCAKESIMTIRED!!" And so it goes. But Chandler doesn't want anything. He avoids the rides with tears in his eyes. He looks at me, then the parking lot longingly and says "Car". Poor baby. He takes my hand, and I lead him around to a few acceptable easy going rides. I finally spy a bouncy house. Oh thank God. There is nothing he likes more than the freedom to jump into the air and land softly over and over. I send Luke over with Chandler in tow, grinning and bouncing toward the giant snoopy inflatable. Three minutes later I hear wailing, and I see them coming back toward me. "She said he's too tall, mom. He barely missed it. Without his shoes he would have.." Already, I am shooting daggers at the snoopy girl with my eyes. "What did you tell her?" I ask. "I told her he has autism and he can't talk, and he just wants to jump. She said we need a form. I just rolled my eyes at her and walked away." Chandler's face was streaming with tears. "Jump, jump" he repeated. I sat down on the bench with a heaving sigh, and stared at the large food menu sign to my right. I order fries, cheese curds, hot dog, milk, and a coke. He wants nothing to do with the food, shoving it forcefully away while his little brother is scarfing down handfuls of french fries. "I wike ketchup!" Sawyer says jovially. Chandler's wistful face is turned toward the giant snoopy. By now there has been an attendant swap, and there is a college age boy running the ride with a mopful of curls and a dimple in each cheek. I take Chandler by the hand,and lead him up the ramp. (God, please let this work or he will have a total meltdown). I am already slipping his sandals off. The ride stick comes out and the boy turns his head thoughtfully to the side. "Look", I say, "I paid full adult price for him to come in here. He hates everything we have ridden on. He has autism and cannot speak, and there is only two kids in there. Please....." My voice begins to crack. College boy moves the stick away, and lets Chandler into the snoopy spaceship. I kneel down to see him through the mesh screen. He is wiping his tears and grinning, and giggling. I don't even feel the cement digging into my bare skin. My tears are falling so much the snoopy house gets blurry. The boy is watching me curiously. The bouncy house timer has now gone past three minutes and he hasn't moved. There is no one else in line. I give him a thankful smile. I might be the only mom crying at Valleyfair from happiness and gratitude. And I would pay full price for him to spend a few precious minutes doing what he loves most.

The Zen Sprinkler

I have some advice. I'm sure you have heard this before. Slow down. No matter how busy you are, no matter how many things you are doing (appointments, blogging, therapy, dinner...) just stop for a second to watch your child. I have watched Chandler playing in the sprinkler countless times. He's making happy noises, wandering around it, and stopping to stand in it. I was picking up toys in the yard today (remember my advice?) and out of the corner of my eye I see him staring into the water. My brain races...(absent seizures are so common in autism)...wait...I crouch down to where he is and stare too. My eyes take in what I'm looking at. AHHHH. I see it! I know why you DO this! The water from this height looks like snow, or tiny glass beads falling in a spectacular rain shower. He smiles a tiny smile and puts his head down. When he moves I take his place and put my head down too. When you face down in a small, twirly sprinkler it looks like it's a huge fan that is going to swallow your head, or that you are going down a tunnel. It's very cool. He giggles and bounces around the water again. I see it baby. I see your corner of the world again, for a second. My husband sees me from the lawn chair he has plopped himself in after mowing the lawn. I feel like I should explain to him why I am crouching in the lawn, soaking wet. Wiping sweat from his brow, he says, "You've found your inner autism again." My wry smile lets him know I know that he is teasing me. But yes, I have actually, and these are moments I treasure.

Happy Fourth of July

I wanted to title this Happy fricking fourth, but I didn't want you to take it the wrong way. I love this country, even though some days it appears it is falling apart before our eyes. I am proud of my cousin Troy who just a few short years ago, gave his life for our freedom. I feel for his parents and siblings every time I see an American flag, or any symbol of our right to live the way that we live. This holiday is bittersweet for so many. I know in my heart this country was built on principles many of us still have, but that others take for granted. Just look around at all the relaxing that is going on today. I thank God every day that I have the ability to take care of my son. That my husband has a job that pays well and my children have insurance. But freedom certainly isn't free.
I love that today I have nothing to do, and the lakes area is full of BBQs, fireworks, and family get togethers. I am also glad I am not there. I think some parents that do not have a child with special needs may not get the concept of freedom as I see it. Freedom to do things they want with their children, freedom of the joyful holidays and trips without them for the weekend. Freedom to pack up some sandwiches and go to the fireworks display. My fireworks display may or may not happen tonight, but we must watch from the car. My trips to the store are ONLY to a select few. And my trips to the family for holidays? Let me tell you about yesterday.....
My father just put in a new pool in his yard. Nine grandsons, most of them 8 and younger, and he puts in a POOL. When he told me about it, my heart just sank. One more place we can't go. Now, my family is quite close and we plan family get togethers on most holidays. I tried to stay home, and I got to hear everyone say "It will be fine. We will help! He will be good...." My grandparents were finally employed to sway my insisting that we would be better off at home. So, against all better judgement, I went. I put him in his swimming trunks before we left since I know better. I no sooner unbuckle his car seat and his shoes were off, and his feet were dangling in the water. I wrestled him into a life jacket, and he jumped in giggling and making that happy face when his eyes are just sparkling and the pure joy shines through. Ah, water. The love of his life, and the bane of my existence. I'm terrified of it, hate it. Not afraid for me, as I am a good swimmer, but afraid for my son because he cannot stay away. He floats back and forth, kicking and paddling and grinning, as I sit on the deck listening to every say "Look how happy he is!". (inward groan, and eye roll) He swims for an hour and a half and I make him break for lunch. A handful of chips and some milk and he is breaking for the patio. I bring my tray down to the deck, and eat while he swims. I reapply the sunscreen 4 times, but he still has tomato red shoulders. We break again for ice cream. He watches my sister and I in the kitchen. I see him thinking as his neck cranes to look toward the basement, so I change him into underwear and a T-shirt, and put on his favorite movie in my parents' bedroom. After five minutes, I hear the door creak. I pretend not to notice, and he sneaks down the steps to the basement. From around the corner I watch him turn around three times to see if anyone is coming. He silently slides open the patio door just enough to squeeze his skinny frame through the space, and closes it softly behind him. Sitting on the deck, feet dangling again, he turns one last time to check for adults, and slides into the pool, clothes and all. His smile turns to a frown when he hears my voice yelling "Chandler! NO! YOU DON'T GET IN THE POOL WITHOUT MOM..BLAH BLAH..." I take him out, and its his voice for the next five minutes, "wah-er, wah-er, pool, mo, mo, please"...This is a futile fight that I WILL NOT win. I let him swim while I pack up our things and my family watches him swim in delight.
Today: I am feeling un-festive. I bought midol, and chocolate at the store if that clarifies the situation at all, and Chandler has stolen my fuzzy blanket I love on these days. Chandlers little shoulders are the hue of a lobster, and he cringes when he sees me coming every hour with the soothing gel. He is furious we cannot go outside. The situation seems simple to most, Put a T-shirt on him right? It will come off and the sprinkler on. He isn't wearing a shirt now, and he keeps putting his shoes on hoping I will give in, but the sun is glaring down. We are close to meltdown.....WE.....