Tuesday, August 30, 2011

you cant take my eyes

And So We Ride

Sammy began hounding me the day after his birthday that he was indeed ready to ride without training wheels. insistent ornery and demanding he repeated a trillion times "take off the side wheels I am ready to go" I didn't believe him. I was tired and cranky and had about enough I finally just said "fine, when daddy comes home we can take off the training wheels"By the time my husband came home I figured Sammy had forgotten. Sammy then went ,took out a wrench and dismantled his training wheels himself in stealth Sammy fashion.He comes in with one training wheel in hand  and a smear of grease across his soft white cheek, smudges of dirt  under his eye, and the look of accomplishment and pride plastered on his face.

I cant lie, I was not ready for this. I didn't believe he was either. This same boy could not even pedal a tricycle last summer. The coordination it takes to move a bike is tremendous. I could only see our past attempts at difficult things playing out in front of me. the frustration the anger and the screaming. That screaming goes through me like a hot poker. I hate it.So I tried distraction and got the boys to go for a walk with me. We walked 6 square blocks. It was almost dark when we got home. The first few blocks I could hear Sammy muttering "I am going to ride my bike,dad said,when I get home" over and over and over but he stopped before we got home. I thought we were passed it...nope. We turn the corner to the house and Sammy takes off like a rocket and comes back a second later with his bike helmet on. "daddy, I'm ready to go"

I am holding my breath, stealing myself for what is sure to come. Daniel helps him remove the other wheel and we take him across the street. I did not bring the camera, thinking for sure this was going to end badly. I grit my teeth and sit on the curb watching...

HE did it. Really did it. first try he rode a two wheeler all by himself. he didn't fall once. he just rode and rode and rode in circles. He smiled..no BEAMED! He was so proud of himself. I fumbled with my phone trying to get a usable video to post. It's so hard to see but it's there.

Tears streaming down my face as I watch my Sammy Sunshine riding a bike, like millions of other 7 year olds across the country ,across the world. It's so normal, so typical...so HUGE! It's so easy to take for granted moments like this, to just assume your child will learn to ride a bike. It is the little things like this that help me to wake up and fight this battle one more day. It's moments like this that Sammy and I win against autism and I can exhale and enjoy it. We win, autism doesn't take away my baby tonight, it releases it's icy grasp on my sunshine boy for just one night.One Night of reprieve and hope that there may be more to come. someday.

We celebrated with strawberry milkshakes and big kid glasses and straws. We shot straw wrappers at each other and giggled together at the table. Daniel asked Sammy how he knew he was ready and he only had this to say
"I watched the big kids,  it made sense,I saw them and figured it out, to ride a bike, just make it turn"

Friday, August 26, 2011


This post has been playing on my mind all week. the wording,the structure. How I can make it not sad or melancholy. How I can make the post happy and upbeat. It's a birthday I should be so happy to have a healthy child. I should be amazed at all he can do. right? It should stop there. For parents of NT kids ... it does. But for those of us in Autism Land we all know it doesn't. Every birthday, though much celebrated, is bittersweet. I wanted this to be a bubblegum post about happy birthdays wished and proud moments of sunshine. I wanted this post to not have to even exist. Here I sit with my coffee in hand and tissues ready. Because even after years of facing my demons with Sammy and slaying the dragon, my heart still breaks into pieces each year when he turns a year older. So forgive me this will not be one of those posts full of sunshine and rainbows. Perhaps because it comes at the end of summer, when we have been holding Sammy together using Duct tape for 3 weeks, after summer program.Perhaps I am just still angry. Who knows.

Sammy doesn't seem to age the way other kids do. While he gets taller and his shoe size changes, his mind set doesn't change as much. He seems much the same Sammy year after year. There are changes, some I never thought would happen. Things I thought we would never accomplish and mountains I never thought we would conquer.  The road has been rocky and steep. I am tired, and he doesn't even know how far he has come. He knows he has autism. he has no idea what that means and he is trying so hard to figure out what it means for him. He understands it makes him different, and we tried to make it positive. For some I guess it can be,but he struggles so much with day to day normal stuff. I just want to whisk him away and make it alright.

He is Seven now. Seven! It's hard to believe that this boy is more than half way to 10! He ages about 6 months developmentally for every chronological year he passes. we are up to about 3.5/4 years of age in his thought process. Mind you this isn't ability. He can do a ton of things most kids his age do and I will post more on that later.  However in his head Sammy is on much the same page as Nathaniel. In some ways Nate is even beginning to pass Sammy. Baby Nate (as he is affectionately nick named) is quickly becoming the big brother, getting Sammy's toys and coat, helping him find his shoes, and get dressed. Nate protects Sammy all the time. It breaks my heart.

my camera died mid song
He chose his birthday meal of Chicken Pie, lettuce (not salad) and dressing and cake(with berries). We went to the store just the two of us and Grace. He pranced through the produce, touched every carrot before picking one and wanted to put chocolate chips in the pie. He smelled every box of strawberries. He picked out the chicken and shook the blueberries so hard I had about 20 squished ones in the box when we got home. He smiled and told each person that passed "it's my birthday I'm having chicken pie" I heard it about 5 dozen times. I came home, we made the meal. He played video games ( a big no-no if the sun is up here) but since it was his birthday he was allowed and I had a glass of wine. We had a slight meltdown over the games being done for dinner, but then something amazing happened... Sammy came to the table and served everyone both salad and pie. Each time asking "would you like chicken pie? would you like lettuce, not salad,just lettuce" I never thought when we set out on this journey that this could happen. He was so present, so open. His windows were Wide open and I could feel the breeze. Thank you God for the breath of fresh air after these past two weeks I can use it.

I love my son. I want so many wonderful things for him but I hurt. my heart breaks and some days I wish it could just be easy. Some days I hate autism. Some days I want to punch autism in the face. I am angry, it's like an 8th person in the house who steals birthdays and sunshine and kicks puppies. I hate it! However I love my Son. He is amazing. and he shows me everyday that I take myself too seriously. He has helped me let go and smile again. He is amazing...and now He's seven

Tuesday, August 23, 2011

birthdays and bike rides

Sammy turned 7 this week. Seven! where did the time go?

Thursday, August 11, 2011

Running Away

So, Sammy has run away. He is angry that he could not have his lollipop after hitting his younger brother. He ran out of the house with nothing on but his pants. His younger brother Nate chased after him and reminded him he needed clothes and food! Sammy came back Nate helped him pack and they left together. I told them to be careful for wolves. They aren't afraid of anything