If the world ends tomorrow....

The twentieth night in my new house, and all is quiet. Me and the boys. We did a lot of Christmas shopping today. I love what I bought you. For Sawyer-a shiny red gameboy, because you aren't big enough for a Nintendo DS like your brothers, and a new MarioKart game. Your snakebite monster truck you have been asking Santa for over and over again, and a DVD of all your favorite monster trucks. For Elliott-the teddy bear you asked for. A funny gift for a rough and tumble boy, but this bear has a twinkle in his eye like you do. And a motorcycle game for your DS. For Chandler- a brand new bike, that you will hopefully learn to ride without training wheels this summer, even if I have to run alongside you until I wear the soles of my shoes out. For Luke-I'm not telling, in case you read my blog ;)
If the world ends tomorrow, I want to tell you how much I love you. Luke, my oldest, my smart and musical, witty teenager who I can't be more proud of. You make me laugh, and I love that we have musical road trips and pizza night when we shoot movie quotes back and forth. My Elliott, my kind and thoughtful boy who thinks of his friends first, and names all of his stuffed animals. My sassy Sawyer, who wears a batman mask to sit on Santa's lap, and asks me questions all day long like "Why is the sun so far away?, and "How much money is six dollars?" And my Chandler. My quiet, amazing boy, who sings and talks to me all day in his own way. Who asks his dad for "Powerbombs" when he's needing rough and tumble play, and who is never without a smile. A real smile not withholding any joy. You are my light, and my life. All of you. Tonight we made cookies together, and cuddled into the big red chair and watched Jack Frost. If the world ends tomorrow, we had us a time. I love you. Merry Christmas. Mom

Another short rant about food....

Chandler. Why don't you like more things? Why is it that I bought your favorite "Fat Emma" cookies, the puffy, sugary goodness ones with three layers of frosting and sprinkles, but this time they are in the shape of stars with BLUE frosting for the holidays and you won't eat them?!! You pick one up, smell it, nibble one corner and set it down on the table with your eyebrows furrowed and a slight look of fear. ITS THE SAME. THE SAME. I know, not your same. Not autism "same". YOU brought me the pudding tonight. The chocolate snack pack that I haven't bought for months because you quit eating them, and I open it for you and get a spoon, all excited that you want it. You take one bite, and then wipe most of it out of your mouth with your shirt, looking at me like you are irritated that I didn't tell you it wasn't what you were expecting. Now you have a dot of chocolate pudding on the end of your nose, and a big smear of it near your shoulder. And you simply say "No." and walk upstairs. I sink into the couch for the eleventh time today, see the dog licking the crumbs from the star cookie off the floor, and put my head in my hands.

For my kids...

If you are in a relationship that doesn't make you feel good..LEAVE! If not for you, for your children!


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Progress...

Today I underestimated my child yet again. There is no school, and I struggle with no school days. Finding things to do that keep him busy. So we worked on a worksheet. We matched words, and put the word "eat" up on the fridge so he could read it, and use it. He wanted cereal for a snack. When he requested "more", I poured just a few squares into the bowl, which got me a dirty look. He picked up the box, poured himself some more and set the box down on the counter. He then said "eat" very matter of factly. Okay, Chandler. I need to quit doing things for you and assuming you will pour the whole box in, or not know what to do. We also drove past the doctors office today on the way to the bank, and you didn't start crying. Progress!!! You are growing up before my eyes, and I'm afraid. For both of us. But we'll make it.



Those lazy welfare parents.....

Okay. Let me tell you a story. I got cut off assistance today. I make TOO much money. (I'm laughing and crying at the same time.) I have a degree. I have a grad certificate. But I am a single mom, with a shitty ex husband. I work my ass off, and I have a child with autism. I work for a non profit, and it means the world to me. I help families locate resources that they didn't know existed. I help them emotionally, and I will fight for them, with them, and reach out my hand in any way that I can. But God knows I don't do it to get rich, I do it because I was meant to. It gets in your blood and makes you passionate. I carry my cell phone at all times in case I am needed, I return emails within a day so a parent doesn't have to worry and wonder, and wait.
I will not get into the many reasons for my divorce last year, but lets just say I was a student while taking care of my home and family while he got a good job that I encouraged. I got about 4 hours of sleep at night, less during finals. When he decided a few rounds of court would be a good idea, my attorney bills climbing higher and higher, I had to get a job waiting tables on the only times I don't have my boys. That leaves no time for anything else. Stress relief, relationships, down time. I haven't been able to read a book (and I'm a hell of a fast reader) for book club, my treadmill is staring at me (although I do squeeze in a zumba class on saturday mornings), sex (lol), a clean house (yeah...okay). I know why people quit their jobs. Working hard is great, working yourself to death is not. I hand my fat roll of cash after a busy weekend to my attorney, keeping a little bit for coffee, or a matinee for the boys. Good for you Nicole. You aren't on any kind of assistance because you work so hard. Well...that's great. I have no health insurance. I just got food taken off the table for my children, so I can pay for my attorney because there is no help for that. Get a different job you say? No daycares to take my son with autism to. Don't you dare tell me you are voting for Mr. Romney tomorrow because you are pro-life. Or because anyone who "works hard" can build anything they want for themselves. If you were really pro LIFE, you would care about "quality of life" for families like mine. Go ahead and criticize me for being upset that I don't qualify for help, then come over for a few days and be me. Would you like to offer to start a daycare for special needs kids, work twice as hard, and get paid half the money? Didn't think so.

Friends and Family night

When you have kids, there is always an activity that includes friends and family night! That means grandpa Bob comes to the pottery class, or grandma Joyce comes to play frisbee in Sports Sampler class, and the stay at home moms bring dad along and other toddling children with sippy cups who are squealing at their older siblings. I bring Chandler. While the other families play together, I sit on the side of the gym while Chandler spins around on the floor, his track pants allowing him to spin as fast as his arms can twirl him in a circle. Tonight for my 4 and 5 year old's sports class, the class party included pizza, and a (oh god) bouncy house. Chandler lit up like Christmas, and looked expectantly at me, gesturing with his hand over and over again. Tears were sitting there in my eyes, ready to fall as I told him, no baby, you're too big. He doesn't meltdown like he used to, now he looks sad, and that breaks my heart far worse than meltdowns. I saw some other siblings allowed to jump during pizza time, and a pony tailed volunteer helper coach said Chandler could play. (Thank you Jesus)...so his world was complete tonight. After he tired himself out jumping and laughing, I saw him go to the side of the inflatable castle and put his fingers up on the mesh, hooking them there, and staring out at the other kids running wild across the gym floor, their little giggles echoing wall to wall. When the bouncy house time was over, he sat again on the side of the gym with me while the boys played "shark". Elliott took his brothers hand, and said "Come on Chandler, let's run." And they did. All the way to the other side of the gym and back. After that, all of a sudden, he was comfortable enough to spin, to run, and even at a full foot taller than the kindergartners playing, he was thrilled. I was thrilled. Family night indeed. Thank you Elliott. It's never the same to have your mom encouraging you to run across the gym with other children. At 5 years old, I can't tell you how much I need you, but one day you will read this and know.

Just a glimpse...

Life is short. Really short. I am a "girl" when it comes to t.v shows and movies. I keep hoping for different endings to Titanic, and the Vow, etc. I watch Parenthood like its a religious service, and I empathize with the characters. I wondered if they wrote Kristina's breast cancer storyline in because people didn't really like her character. She was always so uptight, and kind of bitchy. But I can't help but rooting for her now, and crying when she cries, and loving the way Adam is trying his best to be supportive. Funny how even in fiction land, one moment can change your thinking, your mood...Can this kind of emotional shifting be useful?

Certainly. I use music. I have a whole separated Ipod list to lift or level my moods. I am working on a different tactic now. Stopping what I'm doing to think and feel instead of staying on the crazy train of life. Too often I am in a rush, always in a hurry, chaos, busy....Everyone has the potential of catching these little moments..Today instead of taking the dog out and cleaning up the kitchen after I sent Elliott to the bus, I stayed with the door cracked open to watch him. Here was this little blonde girl with the brightest smile and a voice that sounded like bells "Hi Elliott!!" she called from across the street, he ran to her with his "fastest shoes", slipping his hands shyly in his pockets. She asked  brightly, "Did your mom spike your hair?!" and he said "Yes.." smiling and looking down at the sidewalk. This is the "best friend" he has been talking about. I loved everything about this moment. My feet frozen from standing on cold concrete, I heard the bus coming, and went back upstairs. The moment you slip on warm fuzzy socks, the moment you take the first sip of hot coffee on a cold morning, the moment you see your child fall asleep, say a word, make a friend. It's all precious, and short. They say to savor those moments, but do you? Try harder....its so worth it...

Bedtime in the fall

I always walk downstairs at bedtime to check on Chandler. It's the same routine. I pull myself up and stand on the bottom bunk, my barefeet digging into the snowflake sheets, my one arm hanging on the metal guard rail while I peek over to see if he's sleeping. I take the Elmo pillow case covered pillow off his sweaty blonde head.  I pull up the fleece covers with beautiful puzzle pieces, I look around the room at the way he "arranges".., the TV making the room glow. Some nights, like tonight...tears roll down my face. He looks so "normal". What would my life be like with a nine year old who likes Transformers or talks incessantly about science class? He breathes in softly as I exhale ragged heavy breaths. I run my fingers through his hair as I hear the Backyardigans singing about cops. He puts movies on to fall asleep. Like me. And sometimes I wonder if I have left him alone too long tonight. I should have been working on words..I should have been working on math...I grieve the child I don't have again tonight, and I walk upstairs and pour a glass of wine. It's sweet and floral. It washes over the taste of sadness that is salty tears. I love the son I have. I love so many things about him. But I have my nights to hurt. Tomorrow will be a different day.

Inclusion

This week I had an appointment with Emily from Minot State, with the SATT project. They work with families on apps to use on the IPAD. We were working with an App called Iprompts. I am hoping to use it with Chandler to be a streamlined visual schedule. It's not as difficult to use as proloquo, and not as extensive. Maybe this can be a bridge to later using that app. My dream of having Chandler communicate fully using technology is like a long, winding road with holes in it. It's confusing, and all along the way you find these little gems of apps that will lead to another word, and another functional phrase.
While waiting for Emily to arrive,  I ordered him a carrot cake muffin. He pointed at it, and said "cake". On the plate at our table, he pointed at the little bright orange frosted carrot on the top and made a scrunched up angry face, so I removed it with the fork. He happily took one huge bite (I am secretly hoping he loves it so I can sneak veggies into cake). He made an even more disgusted face, but politely pushed it away and said "All done", turning to his huge cup of milk.
We moved to the corner table when Emily walked in, so we could charge IPADS and talk without being in the open. Chandler wandered around Caribou coffee checking out the pastry case, looking out the windows,...so I allowed it. It wasn't extremely busy, and he wasn't approaching anyone...well, not until I wasn't paying attention. After a few minutes, I looked up to see him standing at a table with four men. He hardly ever engages people on his own, unless he finds something interesting. This one particular man had a gray, handlebar mustache. Chandler was smiling and staring at him, jumping up and down just a little bit. I did my usual "Chandler! Chandler!" running halfway across the coffeeshop, "Excuse me, I'm so sorry!". Waiting for the usual response of stares or polite "No big deal"'s or no response at all. But today would be different.
One of the men at the table said "I have seen him around the community. He is always so happy, and full of energy. He isn't bothering us at all." I didn't recognize him, so I explained that his staff brings him many places also. Chandler proceeded to sit down with his milk, and when I said "Chandler come back and sit with mom", he gave me a disgruntled "NO!" and began to draw on the chalkboard. He eventually resumed wandering, and when we left, he stopped at their table. They all said, "Bye Chandler! See you later buddy!" and Chandler said "See ya!" and was smiling ear to ear.
Thank you, thank you to that table who took the time to talk to him, and talk to me. As parents, we are so use to the stares and whispers, we don't expect anyone to go out of their way, but it means so much. It makes our day. It makes us feel we are welcome in the community, that we are a part of it. That little thing that we advocate so hard for, just to BE there. It shouldn't reduce us to tears when someone has a kind word for our children. Please. Be the person that speaks that kind word. Approach us, ask questions, make comments. Saying something isn't rude! Remaining silent is far more uncomfortable for us. That thirty seconds changed my whole day, and I can't imagine how my son felt. Included.

My son, the gardener?

You know I never think about what my son will be like as an adult....(that's sarcasm). I think about it every day. I wonder if he knows his life is different, or if he cares. Maybe he sits and thinks the same thing, what will I be when I am big?  But maybe he won't ever care about all the things we care about. Money. Careers. Stress. Time. Maybe in his world, time doesn't happen like it happens for us. All that work in school trying to teach him Monday, Tuesday, Saturday. Maybe inside he is laughing or annoyed because he doesn't care that its Monday again. What he knows is happiness. When he's watering his flowers. And love. He knows love. Maybe he is luckier than all of us.

Blindsided by a sippy cup lament....

One of the things Chandler does well is travel. He could sit for hours in the car simply watching the cars and trees roll by. Armed with my stash of cereal, ipad, and stim toys, we can take him anywhere. This weekend's venture was a trip to Minneapolis to recertify his therapy dog in public. Because he is older now, I don't notice stares anymore. If he has a meltdown, I have a service dog next to me, and my arsenal of choppy sign language to let people in on the fact that there may be something a bit different about my son. I am the mom with the IEP books under my arm, my IDEA laws in my back pocket, and my mom degree in autism. So when he is flapping on the way to the pool, or crying because the elevator door opened on the opposite side, or the mall is crowded and he plugs his ears and nose...That is not when I notice the autism. When I noticed it was at a quiet breakfast with just him in his buzz lightyear pajamas and I, in brand new pajamas I bought on the way due to remembering all things for the dog and Chandler and leaving my own bag behind on my bedroom floor. We got up early and followed the smell of waffles and bacon down to the lobby. There was your typical continental breakfast crowd who gets up by 8, grandparents feeding babies yogurt, the businessman in front of CNN with the paper, the elderly couple with rolls and coffee.... Chandler sat across from me with his strawberry yogurt, fruit loops, and milk. He wasn't stimming or talking, or wandering. Just quietly eating his breakfast. Listening to the grandparents next to me talk about how big their toddler granddaughter is, and the mothers lament about how she tried THREE sippy cups to finally get her to drink out of one, she just didn't know if she could take it anymore....I can't believe the unexpected moments when tears will come to your eyes. Chan got up to clean up his breakfast, and followed me upstairs. I promised him a morning swim. (Just a cheer moment here, Chandler learned to say "swimming" instead of just water.) So while he dressed for the pool, I took the dog outside. Three children loading up into their minivan made a beeline for her, I released her to visit with them. She sleepily allowed them to pet her, and rub her ears, and their grandma commented on what a nice, quiet dog she was. I explained to the oldest girl, who looked about my sons age, that she was a therapy dog who helped my son, because he has autism and doesn't talk. She looked at me in wonder, and then said "Well, he'll learn to talk eventually" in a very matter of fact voice. I went back up to the forth floor, rounded up my son in his new robot shark trunks, and on the way down he began to stim. He gets so excited when he knows its about swim time, and he can't help jumping and flapping. There was a fiftiesh age couple in the elevator on the way down. I started talking to Chandler in the "explaining there's something different" way that I do, "Are you excited Chan?" "We're almost to the pool", etc. The couple smiled and the man said "Go get 'em buddy". The world is full of people both supportive and ignorant, and navigating the waters of acceptance is my job. Some days are rougher waters than others, and even when things are going perfect you may get blindsided and cry from the thought that some parents worry about sippy cups, and some parents won't ever have the struggle you have, but some may have longer, and tougher struggles, and worrying about the future is important, but not today....today we just keep swimming....

Carrots must stay across the room and the super moon!

This blog will be short. Moments last week were fleeting and bizarre. Full moons always made Chandler go sideways, or at least get amped up. Some things are funny, like when he stood in the way of anyone viewing the T.V and when we said "Move", he would yell "Hush!" He doesn't often tease, but when he does, its smirky and twinkly eyed and I adore it. Then food therapy, which is maddening, like trying to pour syrup in a blizzard, was more hideous than normal. This time she brought in cubed, cooked carrots (this is where I laugh and roll my eyes, but love her for trying), and Chandler screamed and made them stay on the plate across the room and across the WHOLE room only. But he sang more than normal (like when he flung open my bedroom door and yelled "We like to sing!" in Elmo's voice, and said more words than normal. You take the good with the bad, and I loved super moon. It was like the Christmas episode of your favorite sitcom, heartwarming and quirky. Just a little extended version of autism.

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.