Jalen and the pool and on solid ground....

Deep breath. Okay, I... we made it. I am blogging from California right now where I haven't visited since I was 15. And that time it was a redwood forest in Northern Cali, not the Junipers, and flowering plants all over the desert landscape, its beautiful here. The campus is large and airy with a great room that has a huge selection of movies, a giant coffee maker, and even a wii for the boys to play when they wish. It's like a big house with lots of rooms, just flat...now that I have put away our weekly groceries, Chandler is breathing in and out in a deep sleep next to me in bed.
Rewind to last night....I didn't want to make today a bigger production that I knew it would be, so we drove to Minneapolis and stayed in Chandler's favorite hotel. He was in heaven jumping around the zebra fountain and piling up bubbles in the hot tub. Three times I had to dive into the cold water when I thought he was getting too deep, but then an amazing thing happened. As I jumped in the third time I could see he was treading water. Really treading water and holding his head all the way above the surface. He was making a frantic noise but he KNEW this time. Don't let your face go down! He grabbed my wrist and hugged me tightly but he was smiling. Smart boy. You're just practicing! Enough with the anxiety so I pulled him over to the hottub. He sat by me, again piling up the bubbles, and I could see a little boy about four watching him with these dark curls and huge eyes. He turned his head to the side and said "Why doesn't he talk?" I explained to him the best I could about autism, but at four they have a different understanding. He nodded and said "So he doesn't say I love you?" My eyes filled with tears, but I still smiled because this boy was so adorable. "He does sometimes," I said. I got Chandler to say hi to him and he promptly sat down in front of him like a little instructor, "Chandler?, he inquired seriously, "Can you say nose?" and Chandler began to softly copy a few commands before wandering off to the splash pool. "My name is Jalen, " he said "and I can do my name in letters too!", and he drew them in mid air. He was so very interested in Chandler and why he was the way he was. Moments like this make life brighter.
After some very tearful good byes, getting on the plane was suspiciously easy, even security. New TSA rules allow small children to keep their shoes on, but Chandler chose to take his off. We sat on the floor and ate pop tarts and chips. He peered down the tunnel to the airplane door with a scrunched up face. Luke and I pushed him along, and he began to get upset as I buckled the seatbelt. He calmed to almost "normal" and watched several planes pull away from their gates. He smiled and relaxed. Sigh. Then OUR plane taxied down the runway...his eyes got huge when we started the ascent, and it was like he was asking me why the ground was getting so far away, and he did NOT like it one bit. After a few minutes of tears and some terribly constant stimming, and refusing to even look at the headphones I tried to give him, or the games I had on the IPAD, he put his sweaty little head with flushed cheeks down on my shoulder and fell asleep. He woke up long enough to push away the complimentary soda. Once he realized he could pull the window shade down, he did, and when I heard the captain announce we were over the mountains, the grand canyon, and other landmark beauties, I tried to open it enough to steal a glance. "NO! he yelled, and slammed it down. I almost giggled, but I said "Okay, Chandler, okay." Once we landed in San Diego, he cried, less furiously this time, and then galloped out of the tunnel to solid ground.

Flying.....

Everyone has a way they respond when they are trying not to cry. I don't mean the kind of crying that happens when you watch Steel Magnolias or a hallmark commercial at christmas either. I mean the kind of crying when your body heaves with sobs and you lay down on your bed and bury your face in downy scented pillowcases. You know that hot feeling that creeps up around your eyes? I try rapidly blinking, then I try opening my eyes up very wide and puffing out my cheeks as if that will help. Then I scrunch up my nose just before the tears break the levy of my lower lids and pour down my face. I breathe deeply so the shudders won't turn into sobs. This has happened too many times this week.
A dear friend told me these are happy tears, that our lives will change dramatically soon. In 8 days, Chandler I will be leaving on a plane (Now John Denver is playing in my head, sorry if it is in yours too) to meet his new best friend. Oh, Chandler, you have needed this for so long. A friend to be by your side when no one else knows how. Maybe we will all sleep a bit better, breathe a bit easier. Maybe my heart wont break every time I see a child turn away from you at the park. The potential here is enormous, but after the happy rush fades, it gives way to fear. A deep, dark terror that refuses to relinquish its grip on me. I want to do this, I need to do this. But I am having flashbacks of my flight home from the autism conference. Will the engine noise send you into a tailspin? Will we get through security? After we get to California, will I get you back on the return flight? Can I do this alone? Most of my life I have had someone by my side, and I followed. Now I need to do this without help, without reassurance. Again, I am jumping into the deep end of the pool hoping I come up for air at least a few times. God help me, I am gonna do this. And everytime fear comes back I will look at your face and know that you would tell me "Mom, I need a friend. I need you. We can do this."

Against the wind....

I was thinking about blogging this morning. If I had, my mood would have been thoughtful, calm, and serene. I was walking down the corridor at Meritcare with a birthday gift for my mother, a birdfeeder, under my arm. She has MS and cannot attend to hobbies as she would like. I am not speaking to my father right now which makes me sad. I want to move away yet I want to visit my mother at the same time.
I am now at the computer in a dirty transformers t-shirt, shaking, with tears streaming down my face. Chandler is mid meltdown. I am creeping closer to my own. In psychology they talk about correlation not causation. Is his meltdown my fault, or mine his? Maybe a bit of both. I am never sure how personal to get in blogs. But they aren't just stories, they are therapy. I need this, so again, holding breath, jumping in....
I don't why Chandler has had a tough week. The weather is screwed up, our household is screwed up. I am mid divorce, and everything came down like a domino effect. I made some choices, he made some choices. Mostly poor. It's funny how when you need your friends and family the most, when you mess up, you look around and you are standing by yourself. Some make lovely excuses, some just turn dark like storms and assault you with fallout. You may not agree with my choices, but I remember times I stood by you as a friend, a sister, a daughter. It shouldn't matter. You should be able to see that I'm hurting. My decisions may not be the ones you would make, but they are mine. The worst thing you can say to me is "Think about your kids". (screaming) THATS ALL I DO. You don't see me with the piles of paperwork trying to write a new IEP, you dont see my crying and signing to Chandler over and over, and doing math for the 20th time today. You don't see me crying when I have called my children thirty times and he won't answer or let me talk to them. You say I do it for attention, but no one puts themselves through the hell I do everyday for attention. No one steps into the fire as much as I do trying to make a better life for me, for my kids. I think whats even worse is when I reach out to you, and you turn away. You will never understand how you added to this, how you let me down. You will say, "You deserved it", "I cant trust you", "You lied to me". Being there for someone involves forgiving someone, and sometimes doing it again if they screw up. I cannot BELIEVE the amount of selfishness I have encountered over the past few months.
*pause* chandler takes two seconds to come over here, sees I am crying. He climbs onto my lap and faces me. I say "Im sad", he giggles. He points at my Transformer shirt and says "Yum". Not sure what that means, but I lean into his hug and he starts counting...11...12...and tilts his head waiting for me to join in. I do and I breathe. Lucky Chandler. He will never understand grudges, or hate, or any of the social psychological games people play. I love you baby.
The wind is relentless today....I can't stand the pain anymore. Of wanting to say what I feel, but wondering if people know how short life is. I guess maybe its time to let go. If you can't love me for who I am, then don't be my friend. My family.

Back to School Night....

Every school year I go through the same routine. I worry, I buy school supplies...I worry some more....I give the new mainstream teacher a complete rundown in the five minutes I have to meet her...I worry again...and I cry all the way home from back to school night.
This year we walked down familiar halls to a new room. Oh this room is bright and beautiful. There is a colored mat in the corner with a white rocking chair that Chandler immediately claims as his own. He rocks nervously while I introduce myself to Mrs. T, and fill out all the boring insurance papers, a little form about your likes and strengths, and find your desk. Always placed right next to the teacher's. Mrs T. has a little bag of candy on each desk, I see a snickers and know you hate those, so I will be eating that on the way home in a chocolate attempt to feel better. She asks all the parents to leave a message on the board for their child on the first day of school. I would imagine this is to make the kids feel more comfortable having a message from mom, dad, or in some cases Grandma, so they feel a connection to home. I get tears in my eyes as I hold the whiteboard marker poised midair, wondering if you will care about this message at all. A little girl with big beautiful eyes is staring at me. She says softly "I remember you!" Oh Emma, I remember you too. "You do?" I say cheerfully. Her dad looks puzzled. "I came to your classroom last year and did a project on autism. I'm Chandler's mom." She nods and smiles, "I know!" My heart melts, and it is everything I can do to hold back the tears. I have another year of education with all the new faces I see as I look around. Getting to know Chandler and what it is to have a child in their classroom with autism is an ironclad goal for me every year, and I always wonder if I am reaching them. But I also want Chandler to have a year of friends and fun, with little worries.  I write on the board in red block letters. Chandler. Have a fun first day of school. Love, Mom.
We now leave mainstream second grade classroom because Chandler is stressed out. He knows just where he is going. His autism classroom at the end of the hall. He bursts through the door, and I see Dawn and Kim, his main instructor and speech person, who are now part of our lives. He runs to check out his desk. It is still there. He notices all the new things about the room, the swing in the reading corner, the fact that his desk is empty from last summer. He finds a squishy ball with a tag on it, which he promptly brings to Kim and she cuts it off. He bounces happily around the room. I let out a huge sigh of relief. My dearest friend Kate is here with daughter Emily. Emily will be in this room with Chandler part of the day, as she is starting Kindergarten. I hear Kate talking to the teachers and her words are a mile a minute. Nervous about Kindergarten, this is a huge step. I grin at Emily who is making her way around the room with a broken toe wrapped in lovely pink and purple. She is wide eyed and exploring the room. Thank God I have another mom as school support now. It always feels better. Emily and Chandler have desks next to each other in this room, but Emily is not interested in her desk. Chandler frowns at her. I laugh to myself. It's like having your sister in your classroom. I think to myself I might not cry this time on the way home. I do anyway. Please God, let this year go well. Let the kids as they get older try to understand that Chandler may not speak, but he can understand. Please want to get to know this sweet and intelligent boy. He is not autism, he's my son.

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.....