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?"
"Yes, how you 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.
Alice and I both wore our new Buddy Walk shirts and dark zip hoodies today. We match!
Literacy is so important for anyone in our society. If you can read and write, your life becomes easier and more independent. We look for literacy all the time and at present, Alice loves reading and is at the stage where she will read every sign that she sees. Today she got a Halloween card from her grandparents and didn't hesitate reading it. It's cute that she chose to read "Happy Birthday" instead of "Happy Halloween".
I've always felt that's it's important for Alice to have independence and to be out and about in the community. I try to give her as much leeway as possible, but there can be rather unexpected results. Today we went to CostCo for some shopping and lunch. After we were done eating, Alice decided that she needed to go to the bathroom. This is great. If you don't know, kids with Down syndrome can have a lot of issues around toilet training, especially not always being aware that they need to go until it's too late, so I'm happy when she volunteers to go. I asked her she needed me to go with her and Alice said, "no thanks, daddy, I'm fine." and she tottered off to the bathroom.
If you're a parent, you make your own decision about how to handle this. I gave her a half minute, then I stood up and watched to make she that she went to the bathroom and then I set a mental alarm clock for 15 minutes. When that was up, I went to get a female CostCo staff member to help me out and check the bathroom (because, man here). As she went to check, I found Alice at the eyeglasses counter trying them on.
Alice and I had a talk about that. I allowed that I was scared and that she should have come straight back and asked me if she could go look at glasses. I don't think it stuck, but we do what we can. Important side note if you're a parent of a child with Down syndrome: chances are good your child is going to need glasses at some point. The problem is that people with Down syndrome tend to have small noses and smaller midfaces which means that glasses don't work so well. Specs4us makes frames that actually fit and look good. Those glasses are clearly not from Specs4us (and Costco doesn't carry them anyway).
Later on we went to a community band concert at a senior center in town where I was playing. I do think it's important for Alice to be in the community and be seen by the community. Alice helped me set up and then she found a seat and made some new best friends.
This is a good thing and a problem. Alice is friendly and likes people and likes talking to people. Unfortunately, she has absolutely 0 stranger anxiety and has no problem telling people all of our business. Still, this is a nice community and nice people, so it's good for her to be out there.
Alice takes off her street shoes and gets her ballet shoes on by herself. Note the 'L' on the sole. Every little bit helps.
"I'm going to a dance and there will be perfect music for dancing."
Tonight is the school's Hallowe'en dance. Alice is so excited.
Often, people with Down syndrome don't get as much oral-motor feedback. Having a mirror at the table helps self-monitoring and fosters long term independence. It also reduces the nagging from us.