Thursday, December 22, 2011

A brand new day.....

If you would have told me what the year 2011 would hold, I would have either had a nervous breakdown or just threw in the towel and begged the Mayan Gods to fast forward to 2012 so we could just get it over with. We welcomed a new member of our family, Gweneth, Chandler's therapy dog for autism, I graduated college, I got a divorce, I lost friends and family, and gained new ones. I looked back and wondered how I had the strength. I had so many breaking points I thought I wouldn't make it. Some of my worst moments in life, and some of the best- these changing of relationships.  Endurance I didn't know I had, and love I didn't know existed. I have renewed friendships and a new "sister", and Chandler has a new best friend. I cannot say I regret any of the choices I made, because without pain how can you learn?
For Chandler I have seen some slow and steady positive growth this year. I finally figured out he knew his alphabet in sign and I hope that may be a key to unlocking him a bit more. Gweneth has given us the gift of going anywhere in town with no meltdowns, and a secure base for him to level his anxiety, kicking autism ass to the ground. She is the new glue holding my kids together when they transition to this new life. Normally I don't call out people by name in my blog, so we will use first name basis in here today with apologies ahead of time for undue embarrassment. To my CCI family, I love you, I love you. I was terrified about coming out to California, feeling alone and isolated, and everyone had beautiful, strong families that inspired me. We lived, learned, and laughed together and I will forever cherish those two weeks. My autism Camp Miller family, what an inspiration and one of the best weekends of my life. My smart, strong, and wonderful son Luke -we got to know a lot more about each other this year, and through growing pains, we found a new day also. Kate, who I lost and regained through some painful learning experiences for me, I love you with all my heart and you changed who I am. My autism family, I need you like oxygen, I recharge and draw my strength from you all. Sharon, my new "sister" who I have needed at some of my darkest moments and kept me going. Terry, who I can always count on to be there when I need him and to listen with an open mind. My dad, who didn't let me fall when I was sure I would. And Jerot, who taught me what loyalty, hope, and love are really about.
You know that scene at the end of the Grinch when his heart grows bigger until it breaks out of the barrier? That is what is going on in spirit with me this Christmas. I don't need any gifts this year. I have everything I want, and I'm right where I need to be!

Thursday, November 10, 2011

Going Home...

Today I was taking pictures of my bare feet in the California sun and green grass, enjoying the sunshine and the feeling of cool mornings and concrete running from my room to the kitchen that smells like fresh coffee every dawn. I was so fearful of coming here, I just knew we would be the outcasts. Chandler would meltdown and everyone would stare. LOL. Well, they did stare, but only to tell me how cute he was, how much they enjoyed him.  I can hear Jim's voice saying how musical he is, and see the picture of him sitting with Joy and Calhoun by the fireplace, and watching him peek over the couch to watch Pam and Nacho play, or coming over with a soft "hi" to all of us sitting at the breakfast table. My new family. Thinking about leaving them is heartbreaking. How do you get this close to people in two weeks? Study night with chocolate and wine, and Janet pulling out flashcards! LOL. I am so torn between being excited to see my little boys at home and get back to life as I know it, but this has already changed our lives. Not just Chandler's. Mine. I can't create the kind of picture in your minds that I want you to see if you're reading this. These families are amazing. How am I going to wake up to my house for coffee and look out the window at the snow, and not think about Patrick telling me the latest celebrity news and his favorite Will Ferrell movie, or sharing pizza with Kim and Dana. Laughing with Pamala over the Baby Einstein apps we "love" so much on the ipad, and signing about camping with sweet little Ryan while his grandmum makes tea. How can I get the picture of Andrew and Chandler running across the great room together out of my head? Luke sprawled on the couch talking to caretaker Tim about local sights. They say this is an emotional experience you won't forget, but you assume its all about the dog. And it is, but it's so much more.

Sunday, October 30, 2011

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 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.

Friday, October 21, 2011


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."

Friday, October 7, 2011

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.

Tuesday, August 23, 2011

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.

Friday, July 29, 2011

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.

Wednesday, July 6, 2011

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.

Monday, July 4, 2011

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.....

Wednesday, June 22, 2011

Camp Rodgers

Friday morning I was a wreck. Wet hair, in a towel, I tripped down the stairs on my way on a mad hunt for my pink sweatpants. I debated the night before on sleep or staying up to finish packing. Obviously I chose sleep. 7:50...UGH, I told Kate I would be there at 8:30 to pick up her and Emily. Chandler sat by the door watching me run up and down the stairs...9:15 I pulled into her drive. Fifteen minutes later we had Em and Chandler in the back of the suburban with snack bags, DVD players, and pillows, onto Caribou drive through and then the highway....
We amateurishly navigated our way, checking the GPS, marveling in the fact that neither child was making a sound, laughed at the tiny towns we saw on the way, one in particular called Bock was two trailers and a bar, and Emily repeated Bock bock bock, like a chicken for awhile down the road. I watched them playing at the rest area on the slide...I put my head down in my hand, and closed my eyes to stop the racing thoughts..."What if he doesn't sleep? What if he hates the food? What if he, god forbid, gets out of the cabin...THE LAKE!"...breathe..."What if everyone knows each other and we are outsiders..what if...." Eyes open. It's going to be okay....
When we pulled up to the Camp Miller sign, my heart was racing..but I could see it was beautiful already. The towering trees, the rustic lodge, the playground with a giant hammock...."There it is Emily!" calls Kate in the direction of the back of the car. Emily and Chandler return our excitement with blank stares. Moms are wierd. A staff member greeted us right away to show us our rooms, help us with our pile of stuff, get us schedules...Wow, I could tell they were honestly interested in our comfort level. I looked around, half listening..."anything you need..."...."over there, there's the..."......"a number of activities..."......I was in a daze, could we do this? Silently praying, I lugged our bag full of movies and snacks toward the cabin.

Friday Night:
As they get settled, Em and Chandler are all over the place and we get a tour. Chandler finds a stim toy in the dining lodge that he claims weekend possession of, and immediately I sense his mood shift from uncertainty to joy. They are everywhere, checking out the games and the piano in the community cabin room, running down the hall, splashing through puddles down the grassy hill to the mini ponies and goats. Emily lights up, grinning at the horses and Chandler turns up his nose in indifference at the goat trying to eat his new toy. Emily gets to try out her photo skills when we come across an army worm on the way to the docks. Both of them bounce down the docks in delight, and dip their hands in to splash even on this chilly late afternoon. Giggles. After a spaghetti dinner (well, pop tarts for Chandler), and a fantastic introduction to camp, we sign up for pontoon rides. Under the sprinkling clouds, we float along the lake, and Chandler is bouncing up and down on the seat with happiness, and Emily is so excited that Kate and I take turns holding onto her life jacket so she doesn't go head over heels into the lake. After the ride, we split up for some alone time with our kiddos. I skip the teepee campfire for a walk in the rain under a giant blue umbrella with Chan. He is galloping and I try to keep up. We find several benches that are meant for church in front of a cross with the beautiful water as a backdrop. He snuggles up to me under the umbrella, and we sit on the bench for many minutes. He is at peace here, I can feel it. He smiles at me like he knows I understand.
 On our walk back to the cabin, I see the playground has a green mini zipline suspended from two fat, old trees with an odd triangular bench sitting underneath. The lightbulb goes off. "Channy!" I call, and pull the zipline to the far side over the bench. He furrows his brow at me and climbs up, unsure what I'm trying to accomplish. I put my hands over his to grab onto the handles and I say "Jump!" He lets go and jumps to the ground, confused. I show him again and again, he is getting agitated. I persist. This time he hangs on, and I call "Pick your feet up!" And he does. Oh dear Lord, he gets it! He is jumping and smiling on his run back to the bench. We do this about 30 more times, and he is saying "Mo" (more) until my arms are aching from helping, and my cheeks from smiling.

Saturday: Rainy, cool camping is secretly my favorite. I love the way it smells outside, and the sound it makes when the water hits the canopy of leaves above me. I love that I am carrying around the coffee (they have on all day for the parents) in a real mug and wearing Kate's big blue abercrombie shirt that I'm sure she stole from her son Noah, and her Texas hat since I can't find the one I stuffed into my bag in the mad rush. The activities after breakfast start at 9, and we decide to take the kids canoeing. But first we attempt the climbing wall. Belted with helmets on, I admire their courage and this is another first. I hold my breath as Chandler makes his way up the wall, slowly and carefully. He looks amazed, and I am amazed. And crying underneath my sunglasses. Afterwards, we walk down to the docks, and get on our "boat coats" (Emily-speak) and John, the staff member helps us carrying the canoe to the shoreline. We ask him to take a picture of the four of us, Em has her paddle (just like Diego's), and Chandler is bouncing and leaning over to touch the water as I pray we don't tip over. The water has a calming effect on them, and we peer into the shallow water to see shining shells on the bottom. I fruitlessly try to reach them with my paddle, and we go around in a wide circle for almost an hour. They don't say much, except for Emily. Occasionally, I think she is talking about Diego, and Max and Ruby. No stimming motions from Chandler at all, and he scans the scenery over and over. We only stop because it is soon time for lunch, and then its onto horseback riding!
Because we need to take a bus down the road to the farm, we walk out in front of the lodge to wait. Emily has other ideas. Bus=school, and that is unacceptable. Kate has to pry her fingers from the bus door, and she is crying in anguish. Finally, she submits when mom convinces her its not school, and we are going to see the horses. At the farm, Chandler tolerates the helmet, because he is eager to hop up on "Cracker", the pretty, white horse on the end of the row. He is a natural, his body swaying in the saddle. I ask him several times, "More or all done?"...Mo..Mo...Mo...we go around and around. I see near the fence that Emily is sitting on a horse. Kate's back is to me, but I'm sure she is either grinning or crying. She didn't want the horse to move, but getting on was a enormous step for her. Way to go, babe!
After we get back, we have over an hour before dinner, so we decide to take the kids on the canoe again. I say, "Chan, do you wanna go on the boat?" He smiles, and repeats "Bo-s, Bo-s" Down on the dock, we get geared up, and when we step in, Chandler is crying. I adjust his sitting position, and talk to him, and we start to move out over the water. He is now crying harder. We make one circle, and he is inconsolable, so we head back toward shore. Emily is not impressed. With both of them wailing, my anxiety is going up. On shore, Chandler is dropping his body, and scream-crying. My mouth open in confusion, I beg him to tell me what he needs. Kate hugs him and attempts to help decipher this one. Finally he takes my hand, and pulls me all the way down the dock, and opens the gate, stepping onto the deck of the pontoon! Oh Chandler! BOAT! However, it isn't time for pontoon adventures, and I cannot drive one! One of the staff members sees me struggling, and comes to my rescue. "Would you guys like to go for a ride anyway?" (Does cookie monster eat cookies?!!!) Of course! So she takes us, Em and Kate, and Tanner (another fun kiddo from camp who came to visit us in our room to show the kids his very cool stuffed spongebob), and Tanner's new friend Fred (the green worm) for a long, relaxing ride, pointing out a beautiful, scenic farm as Chandler is bouncing away, and Emily's eyelids are dropping until she gives way to sleep. Chandler forgives me with a hug, as tears fall again.
Dinner was chaotic in a good way, everyone laughing and talking about the day. The camp director was trying to figure out the microphone, and the silent auction items were being closed. She introduced Breanna, the founder of the camp, who because of her commitment and passion for this camp and her love for her son made all of this happen, came up to the stage amongst great applause. She apologized to the families for not being a great public speaker, and she started to talk about a letter she had received that had touched her heart...oh god...I could feel the tears welling up....Kate, sitting across the table from me said "It gets better, turn around" of the staff was holding a birthday cake, the candle flames hand covered my mouth as the parents and kids sang happy birthday...I see Chandler coming toward me with a cookie bouquet that was my gift from him. I couldn't even talk, I couldn't say thank you, the lump in my throat wouldn't let me choke out any words.
 After dinner we walked by two camp staff who were waiting for people to come on a nature walk. Perfect. We went stomping along, singing Ants go Marching One by One, hurrah! hurrah! We took beautiful pictures of solitary Emily and solitary Chandler walking down endless roads lined with majestic trees. Kate posted Em's pic with the caption "Walking her own path". Never a truer, more lovely sentiment.
That night was smores (which was chocolate frosting subbed in for the real thing, and Chandler put his nose to it, frowning. "All done", and he pushed it toward my mouth. Then, the campfire, which was warm and inviting, and the staff had a surprise for everyone. The entertainment was prepared with skits and songs.  Emily had ditched us, and hoisted herself onto the staff bench between two young staff girls and she was "chatting" with them. All the families and kids were just pure energy and joy, and were allowed/encouraged to share a song or a skit. Some did, and an older girl with autism came up, and sang a song quickly while closing her eyes. She did a beautiful job, and everyone cheered. What an amazingly inclusive part of the evening.  Emily's eyes danced with joy as she realized this was a public forum. She stood with the staff during a skit, and even blew the staff members whistle. Everyone was clapping for her. And she was adored, and loving it. Chandler even danced along to the music in his way, and I never saw such perfect moves. Emily returned to mom, but was fascinated by a grandma who was talking softly to her, and Emily was accepting her gentle hugs on this cold night, and Kate was crying again. Chandler and I were the last to leave the fire. The staff trusted us to kick the logs down when we were ready to go in. He watched the flame forever, and said "Fi-ah". So peaceful. Flames were swimming, as again my eyes filled with tears. I sang to him a song I used to sing when I rocked him to sleep.
Back in our room, Chandler was restless. I knew he was worn out from the day, because he was verbally stimming and restless. I asked him a few times "What do you need?" and finally he put his hand on my head and pushed it toward the pillow..."I.....want...yoooouuuu.....mommama...." Breathe in...breathe out...more crying...You got it bud! I layed beside him until he fell asleep and Kate and I stayed up to eat cookies and watch Mean Girls. Cookies, laughter and tears, the best combination.
As we fell asleep, in the dark, my eyes getting heavy I heard Kate say softly, Thank you. I smiled, as silent tears fell. This was such a good idea.

Sunday: We are leaving today. It is so bittersweet. I miss my bed, and my other boys, but this time I had with Chandler......I connected with him, and strengthened our bond over campfires and nature walks. The morning was blur, and we went back for attempt two of horseback riding. Emily refused to get back on, but she was thrilled to stand on the fence and watch the horses parade by, carrying kids from camp. Activites went on until one, but we spent the rest of the morning packing, and playing at the on site park.  As I sat on the swing, I watched Chandler, and thought about how much he has grown this past year, and how lucky we were to be here, living life to the fullest, and trying all the new experiences he wants to try.

Breanna, if you are reading this, please know how much you have done for our families. Rarely do we get to connect with our kids in an environment that is so inviting and calming. I would have never believed we could go to camp and have it be as successful as this weekend was. Everyone was like a family. Each and every child there like my own. Maybe every few months, I get to have a meaningful moment. A new word. A new experience. In three days, we had so many, I stopped counting. Words can never express what this weekend meant to me. I see my son in an ever brighter light, capable of anything. This weekend was not autism. Not therapy. There were no expectations, no limits. It allowed our children to grow, and enhanced the quality of our lives and relationships. I connected with my best mom friend on an even deeper level. This is a life bond. Our appreciation for what you accomplished by starting this camp runs deeper than you will ever know. Never has my son walked a birthday gift to me. I wouldn't trade this weekend for a million dollars. Thank you so much for giving us the best gift.

Tuesday, June 21, 2011

The R-word

Okay, before I post my blog about my life changing weekend at autism camp, I need to first work out this adrenaline I have. A "friend" of my hubby's posted the Spread the word to end the word site today. Under it was the following comment:  LOL. Sorry but no. And saying retard is not like using a racial slur. Fuck people will complain about anything. 
Now, if that wasn't annoying enough, One of our mutual friends "liked" the post, and the other one commented "I completely agree." My eyes swim with tears because Chandler is playing a few feet from me with his blue ball. The word is like a nasty taste in mouth. Retard. It's not like a racial slur huh? Okay, Why don't you walk up to the parent of a gay child and say "fag", or a black child and say "what's up nigga?" Does that feel a little off? Maybe you don't know any families with special needs. My son has autism. And these people when they have to look at my face will say, "Oh I didn't mean your son." Who did you mean then? Because my other friends have children with PDD/NOS, Aspergers, William's syndrome, Smith-Magenis, Downs...? Which one? 
I'm tired of hearing people say that it is just a synonym for lame, stupid, or dumb. My child is none of those things either. I'm also sick of hearing that I'm being too sensitive. When you have to see children that are ostracized at school, that are taunted and called "retard", when it's your friends children, and people you care about, how would you feel? Many of my friends don't know a lot about autism. Chandler doesn't speak, so they think he doesn't understand. Many assumptions and myths, and stares. Sometimes I get very wrapped up in the education of strangers, but I am missing an important piece here. My friends that I don't see as often as my autism "family". You need to get how important this is to me. My child is smart, and funny, and totally handsome. He also has some things you don't. He picks up on vibes around people, he knows when people are nervous, sad, sick, and tense. He can hear things before you can. He knows what the weather will be. He has better balance than almost all children his age. He might even be smarter than you. When you think of a concept like red or mad. He feels all of it. None of the most powerful illegal drugs will get you to a bar of existence that he has. He interacts with his environment, and never judges anyone. Ever. Even when others stay away from him because they are afraid of what they don't know. When, as a parent, you hear assumptions, stereotypes, and watch as no birthday invitations come, and your phone never rings for a playdate, because all the other parents of kids in your child's class think "he probably can't understand", "it might be too overwhelming for him."...and you know that they realize this, even if they can't tell you. You watch comedians and celebrities do "the retard voice" and pretend that the person is a complete moron. Who are you imitating? Whose voice is that? Retard isn't a slur, huh? If my life is meaningful because I make it important to educate people to the beauty of neurodiversity, don't kick me in the face. You can talk to me, you can learn from me, but what happens when one of your children is born with a special need? Then will I be "too sensitive"?

Sunday, June 12, 2011

Pushing on...

'Cause sometimes you feel tired,
feel weak, and when you feel weak, you feel like you wanna just give up.
But you gotta search within you, you gotta find that inner strength
and just pull that shit out of you and get that motivation to not give up
and not be a quitter, no matter how bad you wanna just fall flat on your face and collapse....Eminem

Sorry for the language, but its so relevant. Parents of children with special needs of all kinds have a power in their being. A glowing inner light that is always there, and some days you need to recharge it, but some days it shines and you are surprised by the adrenaline, the fierceness, the give that you have. Like you would give your all, your strength 'til it gives out, your blood and tears, and your life for your child. 
I had someone say to me once, "You only do what you do for autism to look good. To make yourself look better in the eyes of others." This really needs no answer, no response, but I want to respond. I held onto that thought as a nasty remark to disregard, but one day I gave it the thorough wringing out that I needed to. Do I? Is that what I do? What do I gain from my struggle, and my efforts? Relief of guilt? Satisfaction of doing people telling me I did something good for my child and others? I settled on a mix of a knowing, sad smirk of forgiveness and a recharge of my glowing drive. Screw that. I give my everything to make my child's life better, to raise the quality for all children I know, and all families I know that have to struggle with autism, or with any need. I have seen parents worse off then me. I have seen the same, shared pain and the hopelessness, and the sadness. I have seen the joy, the return of hope, and the passion my fellow moms have. I will help you if you ask me. I will bring you dinner, I will watch your child, I will find you an article you need, I will be there as a shoulder, a listener, a friend. And I will not turn away from those who need it most. I do not hold grudges, I will not stand against those who make mistakes. We all make mistakes. Do I do what I do because it feels good? Hell yes. Is my child at the center of everything I do? Absolutely. This is my life's fight. Its what I go to school for, its what I live and breathe. My life is meaningful because of autism, and if I help one parent, one child, even just mine, I consider myself a success. LOVE. Nicole

Sunday, June 5, 2011


You know, today I am thinking about autism as a puzzle, and I'm not convinced. Pieces that fit together to make up a picture. But mostly puzzles are uniform pieces, straight edged, and fit nicely in the exact place. Autism feels like a mosaic to me. Some pieces are huge, and some are so small you can hardly see where they belong. It changes constantly, and all the pieces fit in their own way. And you never really finish it. You can just keep adding, or taking away. There's no border, no rhyme or reason. And the colors are beautiful, making interesting and unique works of art. The more you look at it, the more you see. Today we have put back the piece that allows Chandler to eat pizza without screaming, yesterday I added another "playing appropriate with a toy motorcycle" piece (added with tears, and fantastic pride), and a "calm, happy day at the zoo piece". Last month we got to add the "rides the carousel with apprehension" piece, (That is the piece I placed while watching his school staff cheer), and the "losing a bit of speech clarity for unknown reason this week" piece (This I added with confusion and frustration). Autism you are a mysterious work of art that can be all kinds of confusion and beauty. I hold up the oddly shaped pieces, and I read about them, study them, write about them like I'm in an observation lab. I can share pieces with my friends to gain clarity and new information, but I think we might still be in the dark for awhile. I try to make peace with that because I know one day the light will shine through this.

Monday, May 9, 2011

Revert....Dinner with autism 101

Dinnertime in our house is a chaotic event. My boys yelling, "Mom! I need juice! Mom! Are we having pancakes?" over the clattering of silverware and dishes. Chandler will not eat with us at the table. He prefers the kitchen island, with the counter height stools. Picky isn't the word for children with autism, intake of food is a mysterious clumsy dance, sometimes you have a breakthrough when your child surprises you by taking a bite of an "off limits" food with a nasty texture like oatmeal, or scrambled eggs. And sometimes you get chewed up food spit out on the plate.
Today was a mental bully. I spent my mothers day studying for todays finals -which knocked me to the ground because of my inability to concentrate. On the way to my first final (a biology test in which I had to draw a human heart complete with blood flow), I stopped off at Chandler's school to bring him a sweatshirt for recess ( it was unexpectedly chilly and rainy today). I signed in at the office, and turned right, and I could hear him screaming from the hallway. Getting closer,  I could hear Kim, his speech therapist on the phone, leaving me a message...."It just isn't like him, we haven't seen him like this in a long time....." I tapped her on the shoulder and she hung up the phone finishing, "You can disregard this message since you are here!" I stepped inside the classroom to see him on his knees on the floor, covering his face with his T-shirt. He was sweaty and red-faced. His para was next to him, a look of concern on her face. He calmed a bit upon seeing me, and together we try to decipher this episode as I softly speak to him, "What do you need?", signing need. Brainstorming was something we did often to sort out Chandler's moods, but there was just no good answer for today. Allergies? Sore throat? Tired? Who knows. I leave him calmer, zipped up in his sweatshirt following Mrs. J outside. He glances at me twice. I walk to my car anxious, turning back to see he is no longer watching me.
(Dinnertime 6:30 p.m)  I set three foods in front of Chandler at the counter. You have to first understand, that his food horizons are not broadening, even with food therapy. It is painstakingly slow, and his menu options seem to get smaller and smaller. Spaghetti is now out, we have lost waffles, regained mac and cheese,  lost plain cheese, chicken and rice, and various other foods gone along the way. I refuse to let him eat pop tarts for every meal. I feel like a short order cook. So I place lemon yogurt, chicken pizza, and spaghetti-O's with franks in front of him. First the whimpering starts...I pour him a glass of milk...then the jumping off the chair and I return him to his place. Here comes the spitting, and shirt chewing....Oh, god, he hasn't done this in months. "Come on Chandler, don't you want to go outside?" I bribe sweetly. Here comes the red face, and the tears. "Just take a bite." I plead. "A BITE! NO! 'SIDE!" he throws his head back and screams. He is slapping the counter over and over, "ALL DONE, ALL DONE." Pushing his plate away over and over, but I persist, "You have to try one bite of something, Channy." (blood curdling screams, sobs mixed in, while slapping his hands together repeatedly). Here comes the bad mom part.  I get upset, and yell at him, "You cannot starve yourself!! You need to eat!" He begins to throw his arms around me, still screaming, and I can see in his eyes he is begging me to understand why this food is inedible. He pulls away from me and falls to the ground. I am crying as hard as he is. We are in full meltdown mode together. We sit on the floor with him in my arms and rock back and forth. "I don't understand, baby", I say, "Why don't you want to eat?" I ask rhetorically. He squeaks out, "All done." I surrender. "Okay, all done." He wipes his eyes, and sprints to the front door, "Outsiiiide....", leaving me on the floor.

Wednesday, May 4, 2011

Standing outside the fire....

Most of you probably remember this song/video.
I loved it when I was in high school. I thought it was very moving. Now I cannot watch it without feeling powerful, overwhelming emotion. In this lifetime, I never believed I would be so accepting, so proud, of all that my child can achieve. It is so easy to see all of the can't in special needs, particularly with autism. The maybe nots, the probably nots, the fear, the doubt. It creeps in everyday. Yesterday I watched four neighborhood boys about Chandler's age playing basketball across the street. Laughing, and running, with arms around each other, high-fiving for baskets......I turned to see my son playing with his sky ball (small ball filled with glitter and water making it quite heavy) in the kitchen, just hitting it with his hand, in repetition. Hateful stimming behavior. My eyes were burning once again. Its not because I'm jealous, its not that I think he is less than. Cycling grief happens all the time. I just want him to be able to experience friends, and the joy of hanging with all the other kids. And I have that moment for a little bit. Then, I smile, and I know that his talent is not basketball, his talent is that we can play sky ball for ten minutes this year, when last year he would tolerate ten seconds. I clap my hands, and he grins and throws me the ball. Next summer maybe he will play basketball with me, if not, we will be playing a mean game of skyball. I will not allow my mind to limit you. You're amazing Chandler. You will do great things.

Saturday, April 30, 2011

Measures of success

You know when you're friends with other people that have kids, you open your home to more children running in and out of the patio screen door with sandy bare feet, and dragging Capri-sun pouches and drippy ice cream cones across your carpet, and digging through the entire box of toys to find one matchbox car. When you have autism mom friends, you get so much more. I know when my friend Kate's daughter Emily comes over she is going to dump the stuffed animal net all over Elliott's bed, and try to climb in my fish tank. Because I am used to it, I am not phased. I will always have a can of Pillsbury frosting for her to eat in my fridge. I will be right next to her mom to help lure her outside with a teletubby when its time to leave and she sinks to the ground in a meltdown. When you have certain things in common with these moms, their children become like your own. You see past all the autism.
Today was a family fun event at a gymnastics place in town. Chandler's dad was bringing him, and I was just there to hang out and watch him play. Last time we were here Emily had no intention of leaving without a fight. And fight she did, she bit her mom, and kicked her strong little legs until she was buckled into the car, struggling to escape. I rode home in the backseat with her. Today as the clock hands ticked toward five-thirty, and I was giving Chandler some extra hugs until I see him when dad brings him home Sunday night, I watched Emily jumping. I didn't have to wonder if mom was anxious. I was anxious. I got caught up in a conversation about Chandler with Anna, the music therapist, and when I looked around everyone had coats and shoes on, and I ran to catch up. There was Emily. Sunny stamp on her hand from Nate the gymnastics director, and holding mom's hand while she beamed, and walked perfectly out the door, stopping for a kiss and a high five from another mom. I could tell mom was about to cry, and I could hear the many comments as Emily strolled past the families grinning. Great job! Way to go! Awesome! My help was not needed. Emily's success, is her mom's success, is my success, and Chandlers, and all of these kids and their families. We feel the emotions together, we celebrate the magic of these moments. Autism is often a lonely road, but together we travel with much more joy and pride. I'm so proud of you Emily!

Sunday, April 24, 2011

A ride in the convertible...

Easter Sunday. It's all about chocolate bunnies and little speckled eggs, and little girls in starchy white gloves, squeaky clean little boys in ties and stiff collared cute. So freakin cute. I watched my brother in law painstakingly put bunny footprints in flour and nibble some teeth marks into a bowl of carrots, while he put hot wheels and Reese's rabbits into the boys' baskets, and grandma adding plush bunnies, flashlights and jellybeans. Easter is my in laws holiday. Complete with cousins, pickle trays, greenbean casserole, and a hidden candy hunt in the yard at the farm. I wonder if everyone knows why I am sullen with sunken eyes slugging down my third glass of wine. Maybe its because my nightmares about the pond we tossed rocks into yesterday kept me up until two. Or that Elliott woke me up by shoving an orange jellybean in my mouth, his melodic little voice, "Try it mommy! They're yummy!" No that's not it. Its the fact that this year I have Chandler for Easter. Chandler is improving with holidays. No more screaming at every irritation. Less meal stress now that I care less that he eats a bun, and some cereal for Easter dinner., and he comes around more. But he's anxious, and he paces. Which makes me anxious, and pacey. With 15 adults and 10 kids, and two doors opening and shutting over and over, my breath catches each time I hear a slam. I peek out the window, race downstairs to the guest room where he watches his DVDs he brings along, run out the back door to the edge of the fence to the pasture. This time he is in the middle of the sandbox letting the grains of sand slip between his fingers. Everyone says, "He's fine." They don't always think, maybe I'm not fine. This Easter I'm not fine.
By three I've had all I can stand, I hold my composure until all the bags are in the car, and my tears flow in streams before we hit the mailbox. My husband gets it, so mostly he's quiet. When we reach my parents' house , I relax slightly. He knows everyone here, and I have more eyes on him. I sit in the lazy boy and hold my nephew who I call "Squishie" because he is a 6 month old chubby bunny with no wrists. He giggles and attacks his monkey lovie. Two times I yell at Chandler out the patio screen to get back in here! My dad blocks the downstairs door. We have leftover ham and lemon dessert. I look up suddenly to see two little blonde heads running across the field. OMG. I hand off Squishie like an MVP at the superbowl and take off in bare feet and by the time I am halfway across the yard, my nephew Noah is dragging Chandler by the sleeve. Noah is crying. "Auntie, he ran away!" I can't even tell him I am proud and glad, instead I am yelling at Chandler "NO! We do NOT run into the field!" He looks confused and says NO! back. My tears are stinging my eyes, but not falling. I am done. Exhausted. I tell my parents we are leaving and Chandler says "" I hesitate for a minute, and then I put him in the convertible along with Noah and his little brother Ethan who is my 4 year old nephew that is serious and quiet, like an old soul in a tiny body. With the top down and radio up, we cruise around the block. I watch the boys in the rearview mirror strapped into the backseat, Noah's head buried in a Pokemon game, and Chandler grinning and feeling the air with his hands. How can I keep you safe? Why don't you know your limits? I'm so angry with you, but your smile melts my heart... Ethan breaks my thoughts with "Auntie. I'm cold, can we put the top up?" To which I say, "No, Ethan, its cool to have the top down." "Auntie", he says, "Does this car have air bags?" I shake my head and laugh, "I dunno." "Well, you should be wearing your seatbelt", he admonishes me with his lips pursing, and his brow furrowing into a frown. The sun is going down, on another holiday in the autism trenches, but we're going out in style with the top down.

Saturday, March 19, 2011


I have been in Vegas all week. I hate leaving Chandler, I know he misses me. He acts different at school, he asks Grandma "Mom? Mom?" and its hard. I was so excited to see him that even though it was his dad's weekend, I picked him up for lunch. I brought Luke, and we went to the Pizza Ranch. I was nervous seeing the parking lot because it was full, and busy restaurants are tough, but at noon on a Saturday what choice did we have? He didn't get upset at all walking in saying "Pizza! Pizza!" We found a table in a back corner with just one table behind us, and about 5 surrounding us. One family was getting up to leave. We got our food from the buffett, and Chandler was happy to see pepperoni, and vanilla pudding. He was quite "flappy" and of course its because he hasn't seen me in a few days combined with the music playing a little more loudly than normal. One family walked toward the empty table, and as the mother carrying her baby saw Chandler jumping and squealing, she steered her husband back to the busy middle of the restaurant. Chew. chew. chew. Along comes an elderly couple who choose the table behind us. She sits down with her soda, and as Chandler's pizza touches his pudding, and he spits out a bite and cries. One tiny little outburst, as if to say, MOM! Seriously? I send Luke to get new pizza, and the woman whispers to her husband and they are off to find another seat. After twenty minutes, this super packed restaurant has one empty wing. We are like an island. My eyes were filled with tears, and I look over at Chandler happily munching his fourth pack of saltines because the pizza sucks now, and my very keen teenager says "Mom, I noticed too, and its okay." He smiled, and shrugged. In my head I stood up and yelled "What the hell is wrong with you assholes?! He's not a freak. He's my SON! And he's wonderful. He likes art, and cars, and music. His name is Chandler." But it is because of my teenager, that I hold my head back up and continue with the meal.

Tuesday, February 22, 2011

Letter BORED

I am all out of sorts today trying to reflect. Lets start with the desperate feeling that creeps in when you caught in a limbo during a conversation you have with your child's teachers at school. I know what I would do, but do I trust they know best as educators or that I do as a parent? After disengaging and time in the car to reflect-Perhaps, neither of us know best, but rather we know differently. Okay, so identify the issue. He hates reading time. Is he bored? Does he already know the words? Is he distracted? Enter mom visiting school for reading time today.
As Chandler sat for his word lesson, I could see how distracted he was today. Today there was lightly falling snow outside the window, I know because I followed his gaze. It really is beautiful. I quietly watched his teacher try to engage him with the words. Horse. A. Car. He was breaking eye contact, turning his head away from the page. Touching her newly manicured fingernails because he is fascinated with nails. He has been working on horse. a. car. yellow. see . all year long. My gut feeling is that he is bored senseless. On to edmark, a computer based word program. The pleasant voice speaking out "Find the word ball" and Chandlers hand travels to ball. "Find the word yello.." He pushes it abruptly and turns away. He is pushing them before they finish speaking. He knows these words. All of them.
Here's the problem. He is not consistent. They cannot say he "knows" them for certain. How are they ever going to assess that? Ever? Should they move on to other words? I don't know. I just don't know.

Fast forward. Email from my college professor, who mentioned to me that I was consistently late to class. And apparently I sighed coming in loudly last Friday. (To clarify-I live 75 miles away, and its every Thurs and Fri. and I had to run all the way to class) An excerpt:
" seems like you are in a constant state of overwhelm.  I would really recommend that you consider some self-care to help you develop better coping skills for managing stress and widening your homeostasis.  You could consider seeing someone privately, or I could set you up for some coaching with X (free for students).  I recognize that your stress related to your child isn't going to go away, yet your ability to manage your responsibilities, your time, and your relationships with those around you are always "improve-able."  From what you've said, it sounds like you've become a kind of "island unto yourself" and wonder if you could use some self-care to improve your life.  A balanced mom is much more able to care for her loved ones than a stressed one - I know this from experience."

I was unsure whether I should laugh or cry. I really like her as an instructor, but she doesn't know me as well as I had assumed. I wish to God she knew me five years ago. My reply was this:
Thanks for writing me back! I didn't realize I was coming in loudly, I will pay attention to that (I think the sigh is due to relief that I made it at all after running to class, and its "getting my bearings"), but I will check that. I don't mind you stepping out on a limb to give me feedback, I welcome that actually. I really do have some time for self care, (normally my respite care time during the week, and zumba class, and of course support group). I agree that I come off as overwhelmed, but really tend to be a dramatic speaker, which is improving after all these conflict classes. I have seen a private therapist because the stress load can get overwhelming. I know when my homeostatis is off. It's not just taking care of Chandler, I take on advocacy, working on changing school policies, etc. more than I should. My mother has severe MS, and as the oldest child, my father and I have daily conversations about moving her to a nursing home,  and my husband's job schedule with the railroad is unknown day to day (that is permanent).  I am a pretty good multi-tasker, and everything has worked out for me until these past few months. I don't have enough hours in the day, or days in the week to cram everything in, and I know how much I take on. I am really working on taking on less outside responsibilities, but its hard to let go, that means dropping some of my support group stuff.  I actually feel like I do an exceptional job of balancing responsibilities, but this is my last year of school and that entails picking up all these "extras" like classes at 3 colleges, and bits and pieces. I don't feel too overwhelmed, but I recognize that is how I am perceived. I grew up in a home where catastrophized speech was the status quo, and although I see it, that is what comes naturally. I also naturally run on hyperdrive, its how I get things done. But  I will practice slowing down my vibe, althought I will disagree with you a little bit, that sometimes appearing in a constant state of busy, can look like "overwhelmed' when you are an outloud thinker! Have a good one. Nicole

Sometimes, as mothers in this lifestyle, we are so used to being this way, we forget about perceptions of us, and are surprised when people are wrong. Dead wrong. I know I seem stressed out and overwhelmed sometimes, but I love my crazy life. I thrive on this. One minute I am humming Farmer in the Dell so Chandler will put on his shirt, and the next I am answering a phone call from my who knows who trying to schedule in more things in my already packed week. But I see Chandler make eye contact with me and say "MOMMY, MOMMAY". It's not overwhelming stress, its passion.

Sunday, January 23, 2011

Chandler's 8th birthday, the toy store, and the worst toy ever...

Toys R Us is a like an alternate universe in a childhood dream. They have things I would have begged for as a child, given up all my piggy bank's insides for, and stared longly at while passing by hundreds of shelves of gorgeously dressed dolls with golden curls and velvet dresses, glistening red fire trucks with real sirens, puppies with soft fur that bark, and shiny boxes of colorful wonder everywhere. The lights, colors, and textures would have been overwhelming in an incredibly exciting way. This is not my sons experience, nor is it mine any longer. I am no longer transported back to my youth, now I am a shrewd critic, weeding through everything in despair and disgust, with just a sliver of desperate hope that I might find something he will "play" with.
I was mindlessly wandering the aisles for his birthday present, discarding this thing and that, maybe a book, maybe a puzzle, OH MY LORD!!! NOT this puzzle! They sell a puzzle I find appalling for any child, and it happens to be a hook and latch board. Now, for the naysayers that might read this, I get that it might be used for fine motor skills, but do I really want to help my children open hook and latches, and dead bolts?!! I think not. Shaking my head and staring in humorous disbelief, I was about to give up, and I rounded the corner. Aqua sand. Well......this gift is going to his dads...It was the "polar playground" and it has little penguins that go down a slide with a pump you push to make a real waterfall! Cool. Done deal. I made my purchase, and left this frustration center.
Fast forward to after dinner. Going out for ice cream instead of cake has become tradition for Chandler and I love to watch him enjoying a typical kid moment, trying to lick the drips from the cone. My sweet, perfect angel. Where have eight years gone? Is this little boy really the baby that wouldn't stop screaming, the toddler who carried only balls for toys around, and made me read goodnight moon 30 times a day? The preschooler that I was sure would never grasp potty training or say my name? The same little boy that had words that just sat on his lips without coming forth? Fighting tears, I watched him smile and offer the cone to his dad, to me, and use his napkin, and say "all done". I don't have enough blog room to detail all the progress he has made over eight years. He is growing up to be a very handsome boy, and he has this aura around him, that makes people notice him. He is sensitive, and sweet and knows when I am feeling sad or sick.  I hope people take the time to get to know my son, he is amazing with a kind heart, and a beautiful spirit.
Fast forward to play time with the polar playground....I called dad to see how it went, and he said it was a semi, short lived success. One of the penguins was missing, and he was quite certain Chandler made off with one to squirrel away in his hiding places. For that I am glad. So my gift was loved not for the cool waterfall, and colorful sand, but for the tiny black and white smiling penguin wearing sunglasses.....Perfect. I love you Chandler. I will never stop advocating for you, educating for you, and being proud of you no matter what. I am not wanting you living up to my dreams or expectations, but creating your own. Teach me, and we will show the world that what they think about autism is wrong. Happy Birthday to my amazing child!

Monday, January 17, 2011

Sticky wicket

A sticky wicket is a term used in the game of cricket. Basically if the pitch is altered by rain or moisture, it creates a spot where the ball bounces erratically or in an unpredictable way. The metaphorical use is to describe a difficult situation. I will now explain my SW story.

I like to think that I have a lot of fantastic people in my life that are angels, helping me out on my journey with autism. Some are hidden, and some are in plain sight.  I put a lot of faith and trust in the people that teach and work with my son. I haven't had a lot of problems with therapy or school because we all seem to be on the same page. Encouraging and giving a gentle push here and there, and we all celebrate when Chandler reaches a milestone, no matter the size. Last week was a scheduling nightmare. I returned to school, and the kids were on week two back from Christmas break, and the weather was snow, and more snow and cold. Everyone was just out of sorts.  I found myself on edge, snapping at the kids, my husband, the remote for not channeling the way I wanted because I'm entirely sure I pushed the right button in my rage. I was at least ten minutes late to every class I went to, but Friday finally came and I rushed out of the house after my shower with wet hair because I needed to go to Zumba. Ah Zumba. My 50 minutes of letting the music control my body and clear my mind. I can let the power of Salsa, Merengue, and Cumbia take all my stress and replace it with joy, clarity, and calm.
I left Zumba feeling like I had my brain back. I was centered and energized. I got to my monthly Autism support group just in time, and as usual, the room was inviting and buzzing with familiar voices. I poured a coffee with hazelnut cream and bit into a macadamia nut cookie (so much for the calorie burning). I heard my name and looked around. Another mom with a child in my sons class was calling me over. She looked serious when she asked if she could talk to me. Her concern was a story about our children's class and a para who had apparently been not taking my son outside, texting while caring for him, and basically letting him "do his own thing". The coffee tasted bitter in my mouth, and I must have looked more upset than I thought because she was apologizing and telling me she didn't know what to do, but she felt she had to tell me what she knew. My concentration now broken, and although I always love listening to the parents in group talk, my thoughts kept going back to Chandler and this para professional. Why wasn't he going outside with the other kids? Don't they have policies about texting? What was he learning or doing with her? Why was she robbing my baby of his education and his opportunities for growth? What kind of training does she even have? I felt betrayed. Heartbroken that my son comes home every day and I ask him "How was school baby?" and he can't tell me. He can't say "I didn't go outside today mom", or ask me why he wasn't doing things the other kids were doing. The worst thought popped into my head. Does she even talk to him? I held back hot tears until I was in my car, and they fell in streams. I trust you with my son! He is locked in his own body, and might be crying out to communicate with you, and you are texting, and acting like this isn't the worst thing you can do by not engaging my son. What makes this even tougher on the mind, is that I am not even supposed to know this information. I might never have known.
As of now I haven't met with the school, or the para, or even spoken with them over this long weekend. I am glad I have the time to consider what I will say. But my rose colored glasses about school have been shattered. My wonderful experience thus far has been tarnished, and I am a cricket ball bouncing unpredictably on a sticky wicket.