Tuesday, August 31, 2010

You have no fear, but I am afraid.

There are repetitive moments in life when you feel like you are back to square one. The days when giving up something seems like the only choice. Quit your diet, quit school, quit your job, quit...normal. Normal trivial day to day life happenstance is stressful for most people without the addition of the heightened sense of awareness that comes along with having kids, and keener still when you have a child with autism. A wanderer. A daredevil. A child without fear. The fear they don't possess becomes your own.
Today started rough-toddler with a fever, me late for class, Luke late for band, trying to cook dinner with two crying, (one whining) children and then I burnt the grilled cheese, and had to throw it out. We had cereal and fries. My teenage son was allowed to grill himself a hotdog on the patio, and I watched him watching me. A silent message back and forth between us of knowing. The stress mounting, the tired, burnt out faces we often wear. I was wiping up some of the mess in the kitchen-melted cheese, blackened crumbs, grease drips.....OH DEAR GOD. There was Chandler -standing on the end table on the high patio jumping up and down next to the railing. High over it, with one misstep he would fall and break his neck. Or worse. A silent scream escaped my lips and I felt like I was in slow motion as I took 3 strides to the door. I grasped the back of his Tshirt and pushed him through the open screen door to the kitchen in one fell swoop. I covered my face and ran past my ketchup faced, wide-eyed babies to the bathroom where I fell to my knees and threw up. I could hear my two year old crying for me. I could do nothing but go to my room and sob. Stare and the ceiling, lay on my bed, and sob.
Chandler came in a few minutes later and said "hug", and sat on my bed. He seems to know when I am in the most need of something. Reassurance. I begin to type, his face peering over my computer screen to see what I am typing. I tell him that I am sad. Scared. That he scared me! And that we DON'T jump on the furniture on the patio. He giggles, and I vow to remove every piece of that furniture immediately as I watch him navigating the edge of the footboard of my bed.  I am defeated. I am broken. I feel like less of a good parent than I ever have.....I need this minute. To write, bury my face in my pillow, cry and scream, and then get back up and do it again. Fight my way back to my super parent status. My comfort zone...And I am afraid.

Monday, August 30, 2010

The time limbo....

I sometimes wonder about the process of autism. Is the progress I see from sheer age, or is it correlated with what I am doing and what others are doing to help Chandler? Some days I feel smarter than his teachers, and I feel like I am leaving my child, my blank canvas, to some blundering novice painters. (Don't take offense if you are a teacher, past or present) This doesn't mean I don't appreciate all of the effort they put in, but because autism is (in large part) guess work, I wonder. I'm a blundering novice some days too. Why can't I just feel the right thing to do? Son-rise, ABA, Rapid Prompting, Floor Time, Play Therapy, Video Modeling....all of these choices and I have researched each one. I have read and reread, decided and redecided. I have given him vitamins, B supplements, homeopathic supplements, tried Gluten free diets, I have tried Horse Therapy, Water therapy, Assistive Communication, and the fear that I am going down the wrong path, or traveling too slowly, or not discovering some new therapy or treatment keeps me awake every night. Communication is key, and I will never stop searching. However, pathways in autism elude me. Why did he suddenly play ball with me for 20 minutes after years of only playing for 2 minutes at the most? Why, when telling him to get off the back of the chair, did he reach out and hug me and say "love you" spontaneously after months and years of me begging him to repeat it? Is it stubbornness? Is it simply his inner struggle to get these messages out?
Chandler chose..CHOSE..a truck at the store instead of a stim toy (sensory toy like a stress ball, pin cushion toy, stretchy dinosaur, etc.) and I put it back on the shelf to see what would happen, and he picked it up again. He wanted a truck. A regular, age appropriate toy. A ten dollar item that was more priceless to me than any blu-ray player, ipod, 60inch flatscreen...anything you could every give me.Time stopped. All I could do was stare at him.  I don't have all the answers, his teachers don't, his doctors don't...just God. I was never a very spiritual person until I got to watch miracles unfold. Until I got to feel the powerful hold that comes along with watching this child break down so many things I thought to be true about life, about happiness, about love.

Thursday, August 26, 2010

I wish I was two people...or ten....

I can't be everywhere all the time. As much as I want to be with Chandler always, I know that I will miss some experiences and some will be wonderful moments when he is with his dad, or respite care staff, or his grandparents, or at school. I may miss a new word, or a newly learned skill, and that saddens me. Some moments won't be wonderful. Some of the people that care for Chandler will have struggles, and have to deal with meltdowns, but worst of all they will have to deal with ignorance in the community.
     Tonight Chandler went to the park with Tracey, his respite staff. It was such a gorgeous night, barely any wind, the sun warming your face. Chandler loves the feeling of swinging and bouncing. The sensory input for him must be delightful, since it one of the moments I see him with his big, beautiful smile. He went straight to the bridge that bounces when you walk across it. Of course Chandler didn't notice, there were two young girls attempting to cross. Their mother immediately yelled at Chandler "You don't jump like that! Can't you see the two little girls that are smaller than you?!" In fear, Chandler slid through the side to the ground and walked away. Tracey didn't miss a beat. She went straight to the woman and explained that he didn't understand, and he was non verbal.  The women didn't really apologize, she made excuses for what she said like it was no big deal. She didn't say another word however. I hope she felt ashamed of herself. I hope she thinks before she speaks the next time.
 Most importantly, these experiences renew my faith that I am not alone. His caregivers feel the frustration and anger that I do, and they look out for my son when I can't be there. I love that I can send him with her and feel confident that she will protect him, and watch out for him as I would. Thank you Tracey for not letting him be invisible, thank you for standing up for him in a world that can be terrifying and sometimes cruel.

Wednesday, August 25, 2010

First Day of School....

Running around the week before school starts is enough stress to make me break down, sob, and not get out of my pajamas. Instead, I stock up on coffee, school snacks, and emergency Chips Ahoy for me when I have a really bad day. I had Chandler's supplies all pack and his outfit picked out- a red polo, khakis,... and he looked so handsome waiting with his brand new Buzz Lightyear backpack on. He ran out to the bus like we hadn't been on break at all, and I waved and smiled as the bus pulled away. My thoughts raced and ran into each other in my head. Will he be better this year at talking? Will he be learning? Do they know he can use the bathroom alone? Will he tell them? Do they know he hates bananas and loves spaghetti again? Does he miss me?....
I did stop at school later this morning with his bag of things for lunches that was too big for his backpack. He wasn't happy to see me. He was sitting on the couch reading with his para. He looked up when he heard my voice and went back to watching the story. I asked him for a hug, and he stood and backed up to me in an awkward, backwards hug, and said "Bye." I guess that was my cue to leave. I am glad he is content, but as I pull away, I see his "neurotypical" class on the playground. They are running up to each other and giggling and talking about their summers. My eyes fill with tears....Will they ask him what he did? Will they say hello to him and remember his birthday party from last year and how much fun they all had? On back to school night, a little girl said hello to him and his dad tried to get Chandler to respond. "It's okay," she said softly, "I know he doesn't talk." I hope they keep trying. I hope they can see he is there too. Please make friends Chandler. I know they will see how beautiful you are, and how sweet....please...

Monday, August 23, 2010

Chandler and the Umbrella.....

Chandler wants to go outside always. It can be raining, snowing, or mid lightening storm, and he will pull me by the hand and lead me to the patio door and say "Ow-sigh", and I will look into his sad blue eyes and say "No baby its raining", or "We can't today, its too wet." Today he did not cry or scream, he smiled and said again "Ow-sigh", and put on his shoes. So I stared a moment and made that clicking sound with my toungue, and got the umbrella. I just bought this beautiful new rainbow umbrella with a big U shaped handle. It reminds me of lovely photographs where Marilyn Monroe looking moms shade themselves and smile with their blonde babies on a beach somewhere.
Chandler can't hold an umbrella, he doesn't know how I realized as I handed it to him. The weather was humid and sticky and the rain warm. He let it fall to the ground. I pulled it upright, and it softly drifted downward again. He stood there in the rain looking at me, and my tears mixed with the droplets. I said "Chandler up", and stood under the umbrella and showed him that the rain wasn't touching us. Then I stood out in the rain while he stayed under the cover of the rainbow fabric. He saw I was getting wet and I said out loud "Channy, look, mom's all wet now!" and he smiled, and gave me a little giggle. I jumped under and smiled and said "Now I'm NOT getting rained on!" We practiced and practiced and he finally stiffened his grip and the umbrella no longer fell. He walked all over the yard, this huge umbrella covering his head, with feet under the water pouring out of the drainspout, and tip toeing across the soft grass. Round and round, and mom stood watching in the yard, dripping from head to toe. Sometimes words aren't necessary. It is the experience and getting your hands in there that teaches the child who cannot speak. Go out in the rain. Brave the snow. Brave the mall. Do whatever it takes! He teaches me all the time he can learn. I have to let him.