Thursday, September 27, 2012
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?
Thursday, September 20, 2012
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.
Sunday, September 2, 2012
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.