Butter Side down..

In watching Chandler eat food, I almost get anxious to the point of making myself sick. What happens to little bodies that don't eat any fruit or vegetables? Not one. No apples, bananas, grapes. None. What kind of deficiency is he harboring in that skinny little frame? What kind of disease or cancer is waiting to flourish in his little cells?  Every glass of juice he pushes back at me, and every time he turns his nose up at a new food, I am disheartened, sad to the point of tears. How long can he eat pop tarts and peanut butter sandwiches and not get sick? Doctors are idiots. "He's at a healthy weight."......sigh, so are some crack addicts. Channy doesn't have many "OCD autism characteristics." By that I mean, no lining up, no rigid routines. However, I study the manner in which he eats. Toast is always butter side down.  Yellow Cheez-its are yummy, White Cheez-its are yucky. We don't eat cut up spaghetti, we must twirl it long with only Prego Ricotta Parmesan sauce on it. I am becoming a master of being a sneaky chef. I have purchased and perused books, and I have made tiny gains like baby food veggies in the spaghetti sauce (thank you Kate). So my crafty mother in law made a chocolate cake with bananas in the mix. PERFECT, right? Uh...yeah, nice try. He licked of the icing and dumped the piece of cake in the garbage. So much for step 2. SIGH.

Pizza incident at Rainforest Cafe

SO....my adventure to the cities for the Autism Walk started off beautifully. Overcast day with some sun peeking through, fantastic resource fair, the kids were sweet and well behaved, and they got to play games to win prizes and jump in the inflatable house. The atmosphere was brimming with inspiration and hope. We were being recharged! Good thing too, because we left the walk to go the infamous Mall of America. I know what you're thinking...really? Are you new to autism lady? Could there be a more viciously overstimulating arena? But I made a carefully executable plan! I wanted to eat quickly and then proceed to Underwater world to walk harmoniously next to the sea turtles, and ponder the strange jellyfish as they lazily float by. Yeah Nice Pipe Dream Nicole. That is NOT what happened. The parking attendants were bossing people around like mob bosses, and when we finally found a spot in P4 Arizona (aka really far away), I pulled a crying Chandler from the back and talked him into calm as we made our way through Nordstroms. We had to take several escalators and reroutes down, and I almost bit the hostess's head off when she said, "Party of 6? That will be one hour." with a giant false smile. That would make lunch at 2:16. So we staved off hunger with a donut, and went to the least sensory offending stores I could find. We get seated at 2:15, and I manage to piss off employee 2 by requesting a rectangle table rather than a round one in the middle of a crowd of people, and I finally order PIZZA. Chandler loves pizza no matter where, when, or how. I calmed my nerves slightly by ordering a Pink parrot lemonade (it involves alcohol). I know, strike two for parent of the year. Fueled by sensory overload and hunger, he starts getting antsy, tossing silverware down to make it bang on the table, pushing away from his place to wander to the fish aquariums in the cafe, and toss his crayons in an angry manner. I feel a huge sense of relief when I see the waitress and she sets down his pizza, and I am excited and thinking to myself, "That wasn't so bad. Foods here! Time to relax!" As she was setting down the frog plate with the weird looking circular pie that looked yellower, flatter, and thinner than pizza we normally encounter, he violently shoved the plate and stared at me like I had betrayed him! He began to fight sitting in that chair for fear I would make him taste the offending entree with all the strength of an Ultimate fighter in training. He started screaming and one by one I could feel the pairs of eyes falling on him, and on me as my patience hit its limit, and I forcefully escorted a gasping, sobbing boy of 7 through all the tables full of people to the complete opposite side of the restaurant to the bathroom. I almost couldn't take it. I was so angry, so frustrated, but when I got him in the bathroom, what was I supposed to do? I fell to my knees in tears and yelled "You cannot act like this!" and threw my arms around his shaking little body. He was frustrated too. The place was loud and abrasive and he had put up with a lot, only to have something unfamiliar and unappetizing set down in front of his face. I let him cry while I held him, but tried to explain that we could not outburst like this. We eventually rejoined the table, and he allowed me to quickly eat half my sandwich, and we waited for the bill by the fish tank. The table behind us, near the tank, had a couple that had been there about the same time as we had, and I said in a very small voice, "I'm sorry if we interrupted your meal." They looked surprised and then the man said "No! You guys did not interrupt us at all! Please don't think that!" His wife or girlfriend shaking her head, very seriously, in agreement, "Not at all." My tears stopped me from choking out a proper thank you, and I was glad that for once I felt accepted, but had I not been brave enough to speak up, I would have walked out thinking every last table hated us. Maybe some did, but that's okay. My heart was lighter, and by the time we got in to see the Underwater world sea turtles, and amazon beauties swimming along, Chandler was calm again and grinning while we watched the jellyfish float and sway.

Autism Walk

So today I am talking fundraisers. The race we are all running to procure the desperately missing funds to bring something to the strange world of Autism...... Research. Cures. Causes. Reasons. This is a sad fight I see so many women struggling with. All the talk. Too much talk. I could blame vaccines and harbor that guilt and hate my clinic, or I could doubt my DNA or wonder if its because I didn't eat organic food, maybe it was the water, or air I breathe, maybe I did something I should not have done! But that isn't going to give me a typical 7 year old boy who sulks when I say no more Spongebob, or eat your broccoli, or no you can't have a go cart, or walk to the park alone.....Instead I say, no you can't stack all those things to climb up and eat the entire box of pop tarts, you can't keep making those noises at 5 a.m, you can't try to run out the front door into the street, you can't have a 7th bath today, and you can't take the cookies out of the box in the store...Chandler is my normal. I have come to enjoy some of our little routines. I laugh when he teases me and says its bedtime at 2 in the afternoon. Do I want to know WHY. Yes, of course I do. Do I wish he didn't have to struggle to speak, and wonder about things he doesn't understand, and I didn't have to hurt and wonder about his future? A resounding YES. But if I keep asking why without doing anything about it, it will drive me insane knowing I may never get the answers. So we will continue to fundraise for education, for awareness, so that every new person I ask for a donation gets a little taste of autism. Gets one little piece of information. I will keep talking about it until I have no voice left, because I AM my son's voice. I will reach out to everyone I meet. Do I really care if the money goes to treatments, research, or cures? Not so much. I do it for the awareness. I do it for me. But most of all, when I am holding my baby's hand and walking with him alongside the other moms who look and me and we share the smile of understanding, it doesn't matter. For a few minutes we get to be all together- walking in support of one another. For one morning, we KNOW we will feel the support, the joy, the hope, -without saying a single word.

My angels....

Today was beautiful. With a rough start, and a never ending pile of garbage falling on me-windy, rainy weather, yawning errands, crabby children, household chaos, unwritten papers for school, grocery lists getting longer, a strep throat stricken spouse, and creeping, sneaking exhaustion...for me a typical Friday. Most people are posting TGIF, and planning Friday night happy hour trips, or movie dates....ah the good life, right? Well, my "good life" was the return of support group. September through May, one friday a month,  I get to sit around for two hours with fellow parents of children on the spectrum while wonderful volunteers chase after my children. I can cry, vent, laugh, or just sit there in silence. One year ago, I was very alone. I had people to talk to, but the bond of truly understanding was something I desperately waited for and it never came. I prayed and prayed for angels to help me, and I got them. Amanda. My sweet, tender-hearted, friend who has an eye for beauty in nature and an empathy for humanity that I admire. Kate. My strong, fiery, and hilarious friend, who has the energy of 6 moms, and the ability to laugh when life is unbearable. Kristin. My passionate, artistic friend, who has a spiritual side that allows me to look deeper within myself. Christine. My wise and witty friend who can make peace with the tough things in life, and teaches me to do things with grace. If you didn't know it, you have brought something to my life that I was missing. My Chandler, who the world says is missing a piece (or as I prefer to say, has an extra piece) of the puzzle, was not missing nearly the pieces that I was. Chandler was the angel who led me to the rest of you. My journey with him has given me friendships to cherish and has brought more meaning into my life than I ever imagined I would be blessed with. As our group will widen and we will bring more amazing people into this circle, I feel more confident, more at peace, and stronger than ever. We can change our lives, our families, and our communities by joining together for the same purpose. I love you all.

People Suck

I want so badly to believe that the time I invest in advocating for my son is paying off. I love the rainbow and flowers idea that the world is a better place because they have someone as committed and educational as I. But just when I think I am getting somewhere. BAM! The door hits me right in the face, and I sit there, on the ground,  stunned for a moment.  The news story I watched today:

:http://www.cnn.com/video/#/video/us/2010/09/09/pkg.screaming.kids.sign.autism.wect?iref=allsearch

This woman will not allow screaming, crying, or whining children in her restaurant in North Carolina. This, of course includes children who scream or cry because they have autism. An angry mother is speaking out against her disgusting policy, and this old hag feels "sorry for the mom with son who is autistic", she "can't believe she brings him out in public" and my favorite, thinks the mom is angry because "God or mother nature gave her an autistic child and she is angry."
OH NO YOU DIDN'T! Calm down, Nikki, I think, this woman is an ignorant old fool who has never had children or grandchildren. Think. Nah, crazy old bat. My inner self is screaming at you and kicking you in the face, and painting Olde Shitty's over the Olde Salty's sign outside your door.
See, these are the times I can't get it under control. My decorum is shelved. My etiquette? Screw it. On the one hand, I can see it is pointless to get worked up about. Hell I'm not visiting North Carolina anytime soon. But you know what? The comments that follow from supporters of this piece of trash are just as bad and worse. They think we are preaching, soapbox moms up on our horses of high telling the world they need to make way for our disabled children, never minding what they do, and let us take over the place. They are dead wrong. If I thought like you Brenda Armes, owner of Olde Salty's, then I would ask all the ignorant people to get out of my city, so I can enjoy it Asshole free. Since I can't, and I have to listen to your crotchety old voice saying with a smile "You're one of the few moms that would bring your autistic child out in public.", I will lift my mood by envisioning the day when several moms bring their beautiful, silent, children with autism and she walks over to the table and says "What a lovely well behaved family." And a child, silent as can be, throws a plate of greasy hushpuppies directly at her repulsive, sour face.

Panic

I read another heart wrenching story today about a little boy with autism named Mason. Just over a month ago, he got out of a window while his big sister was watching him, and his parents were at work. He ran across the street to a pond. He drowned. His mother is now on a national mission to get the Mason alert going. Similar to the Amber alert, but for children and adults with autism who have but few precious minutes before finding themselves in dangers unknown. Her post included this paragraph:    

‎"They will walk into a busy intersection, despite traffic. They will walk through an open front door, not knowing if a predator is on the other side. They will hide in tight, enclosed spaces, not realizing the danger of suffocation or heat stroke. They will walk down a mile of railroad tracks, not realizing the train they love so much can kill them, and they will wade into the middle of a muddy pond, never thinking that they can't breathe the muddy water."...Sheila Medlam


It took my breath away, and tears welled up in my eyes for another countless time.  My son has escaped from our house with me in it. My friend Kate's darling Emily has taken off the split second her mom turned her eyes away. Smart little Logan has figured out how to undo his parents precautions. I love all these children, I cry over them, I am anxious over their well being. But my darkest, most paralyzing fear is that he will drown. He loves water. Loves it. He loves the motion of it, the feel, and in all forms. Soft rain, a warm bath, rushing rivers, still lakes and ponds. I can hear it pouring outside, and my mind wanders to the geese pond a few blocks away. The culverts down the street.  I get up and check and recheck the locks. Most parents will never know the restless sleep that moms with children with autism suffer. Every noise violently jars us awake, each noise taking away our very breath, the panic that takes over until you lay eyes on them, and you take an enormous breath in, and let out a ragged sigh of relief. I will never stop thinking about Shiela Medlam and the terror, anger, and pain she must have felt in that moment, and the agony she is going through now.
What I can do, and what I did do, was sneak down to Chandler's room and take the toy from his clenched fist, and set it on the nightstand. Take the small, rough planet pillow from under his head and replace it with a soft, fluffy pillow and run my fingers over his blonde, spiky hair. Feel his back moving rhythmically with his breathing, kiss the warmth of his angelic face, and wipe the tears from my eyes and whisper "I love you baby". I know I am not God. I have made deals with him to protect my son. I have given podium style lectures to my teenager and his friends.  I have shouted from my mountaintop the importance of safety and autism, and wonder if it's ever going to be enough....To protect him, to make me feel more secure...well, my friends it is one thirty in the morning and sleep won't be gracious tonight.