Monthly Archives: October 2014

DS Awareness Month 2014, Day 30

Not every moment is a joy. Not every day is happiness. When someone tells you that kids with DS are always so nice, I cringe because I frequently get days like today.


You can see that Alice is not happy with me. She went upstairs after breakfast with plenty of time to get ready for school. I checked on her with a 25 minute window of safety and found her in her room in her pajamas in bed with the lights out. I told her what she was doing and what she needed to do, how long she had to do it and the consequences. She stared at me. I went through the recommended behavior script, “Alice, you’re in bed staring at me. You need to get dressed.” I got a gasp as a response. She hadn’t moved. “Alice, you’re still staring at me. You need to get dressed. Now.” She finally got herself in gear. I checked on her with 10 minutes, which if she is close to ready is enough to get the rest done and get to the bus stop. I knocked on the door and she was half dressed. “Alice, you’re not dressed, you haven’t brushed your hair, you haven’t brushed your teeth. We can’t make the bus.” Her response, “I want to ride the bus!” which is Alice’s stock response when she’s going to lose something she likes as a consequence. I spelled it out for her, and got interrupted every time with “I want to get dressed!” “I want to brush my hair!” “I want to brush my teeth!” My response, “Stop. Just stop, Alice. If you wanted to ride the bus you would have done these things. It was your job, you didn’t do it. No bus today.” She caught an earful from E too. Her response to that was to look at me and say, “Mommy was RIGHT!”

She fought through the rest of her jobs, including putting on and zipping her hoodie (!! hooray – she got praise for that) while E and I hashed out who was going to get the task of bringing in Little Miss Grumpy Pants. Alice, on the way in, told me in no uncertain terms her feelings, “DADDY, I VERY SAD AND ANGRY AT YOU!” “I’m OK with that. I’m angry too.” “At me?” “No, Alice, I’m angry with your behavior.” I try to draw the distinction between child and action, although I suspect most of it lost. Alice now dropped into a mode where she repeated the topic of every sentence I said with as a question.

“Yes, Alice, I’m angry with your behavior?”

“My behavior?”

“Yes, how you acted.”

“I acted?”

“When you were still in bed in pajamas.”

“I in bed?”

And so on.

I got her to school, brought her to the office and she spoke to the secretary.


“Good morning Alice, how are you?”

“I not having a very good day.”

“Why is that?”

“My behavior.” Innnteresting. Maybe it does sink in more than I thought.

Alice went on, “I need you call the police.” (I translated. The secretary was having trouble understanding Alice).

“I need you call the police. ON DADDY.”

One thing they’re starting in Alice’s curriculum is how to use the phone in case of emergencies. I fear for this lesson because I think I’m going to have to explain to the police that, no I don’t think they need to intervene because someone failed to earn TV time for not getting ready for school on time, but go ahead and have a talk with Alice.

Absolutely, people with Down syndrome feel the range of human feelings and life is not all smiles and laughter. Let’s put that stereotype into the ground, please.