You can be happy now......

I had my heart broken today. I realize that my younger children are going to ask questions about Chandler and autism. And I am very matter of fact, and I try to explain it in a way they can understand. I was mortified a few weeks ago when my 3 and 4 year old were watching old home movies with my mom (who is in a wheelchair from MS), and he pointed out to her "Hey Grandma, that's when you could walk!" She just smiled and said "Yep, it was." I pulled him into the other room and calmly explained how that might make her feel. I thought I did a pretty decent job.
Tonight, Chandler had a massive meltdown, complete with kicking and screaming, pinching and crying. I was on my very last nerve and I sent him downstairs to his room to calm down. Elliott thoughtfully ate his peanut butter toast, and he frowned and turned to me "Mom. Why does Chandler have autism?" Me: He was born with it, it does things to his brain. Ell: Can you take it out? Me: No, sweetie. Ell: Can you fix it? Me: No, honey, I can't. Ell: Can Jerot fix it? He fixes a lot of stuff. Me: No he can't. I wish he could. Ell: Well, can we get rid of him? Me: (choking back tears) Elliott, he's your brother and we could never get rid of him. Why would you say that? Ell: He pinches. And he gets so mad. Me: That's part of his autism, but we still love him. Ell: Is that why you cry in your room? Me: Sometimes. Ell: Do you cry because he does this? (imitates flapping and rocking) Me: (full out crying now) Yeah, sometimes. 
Elliott got up and hugged me, and said "I'm going to watch Adventures of Tin Tin! I think Chandler's done with his meltdown. You can be happy now."

I'm ready....

I haven't blogged in a few months but it feels like a year. My life has taken some unexpected and expected hills. I can tell you this "never think you know", you don't. After I graduated college in December I had about a day and a half to celebrate, then I had court for my divorce. Messy, ugly, spiteful, hateful divorce. I still have such powerful anger toward parts of this situation, I'm not ready to blog about that yet.
 I also decided to take a break from school or work, or much of anything really. What kind of effect does this have on autism? One would think that spending more time at home with more hours for therapy, reading, working on language would be a the best case scenario, and it should be. I am at a turning point figuring out a new direction because I have the time to. It feels good. Getting back to the roots of autism, finding a new path. Never giving in.
I get thrown curveballs every day largely, the financial ones largely due to a bitter divorce. I spend more hours than I need to crying and filled with a rage that was starting to overtake me. On top of everything else, I had agreed to become part time caretaker for my mother, who has a very debilitating form of MS. I began to drive an hour, three times a week, making dinner, playing cards, putting her pajamas on, putting some make up on her. And I began to become very sad. I had become so busy that my own mother had become someone I didn't really think about. A ghost grandmother my children didn't really know. I didn't know her anymore. Did she feel like my son? Isolated, misunderstood, frustrated? Surely, I wasn't a bad daughter! I hadn't stayed away from my parents home because it was difficult to me that I had no mom to call for advice, or spend shopping weekends with. I simply was so busy....right? I felt like I had just walked into a cement wall. Were my problems the worst things that could happen? I couldn't consider this right now. I couldn't...right?
My arguments with my boyfriend about my stress reached a pinnacle, he could see that I was breaking down, shutting down. I shot back at him with pure venom. After a particularly tough week, I was watching my ex destroy my credit, my financial problems circling like a drain, answer my phone to Chandler's OT calling me to tell me my son was plateauing on his skills and wanted to drop him. Tears begun to fill my eyes, I wanted to surround myself with my two babies. My little boys are light and joy. A beacon in darkness. Unable to call my youngest two sons because no one answers when I call,  and unable to help Chandler, my mom, myself. I lost it. Full on LOST it. My meltdown was equivalent to autism's worst day. Sobbing I went to the basement....Chandler was playing his ipad on the couch next to his dog. He was getting upset because he couldn't find the right place on the Elmo video he was watching. He yelled and then he flung his arm out toward Gweneth. I flinched in fear he was going to hit her, but he took a breath and rested his hand on her head. ... . Take a breath. I sat on the couch next to him and we just were. Frustration island. I put my arms around him and he sighed.
Fast forward a week or two.....Weekend with no kids, just what I needed. I thought. A couple glasses of wine...it was a decent night. I was edgier than I thought when I came home. The last couple weeks flooded me emotionally and I lost it again. This time was the worst. Crying, shaking, hardly able to breathe. It felt like a panic attack. Then I had someone stop me. Look me in the eye and tell me all the things I was doing wrong. All the things I was hanging on to, letting them eat me alive. Having someone wrap me up in their arms, silently,.....all I could do was sigh. I was ready. Ready to take this on. Ready to stop feeling sorry for myself, angry at the world, bitter.
Things began to take a course unheard of in my life. I found myself at church one morning. I found myself renting a sad movie (unrelated to autism), something I had been unable to do in years. I found myself laughing from the center of my body. I found myself slowing down. I found myself taking a morning off to read and stay in bed until noon. I found myself unimaginably happy with someone who allowed me to be. My life that had been filled with dramatic events, pain, and unthinkable mountain climbing had started to shift. A letting go, a quiet, uneventful, blissful letting go. Peace. I had finally learned a thing or two about love. And only now can I be a good mother, daughter, sister, friend, and partner. Thank you. You know what you've done for me.

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!

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.

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.