No Halos Here

I read an article by David Perry the other day that challenged the idea that it is ok to label people with Down syndrome as angels. It happens a lot. I am guessing it is because people are trying to be nice and don’t really know what to say that will come across appropriately positive, so they play it safe with, “Children with Down syndrome are a special blessing from God. They are like angels here on earth.”

Perry’s response to that was,

“But while good intentions count for a lot, “angel” makes me no happier than “retard.” ... Symbols, labels and representations—in media, literature and our daily conversations—shape reality. The words “retard” and “angel” represent images that dehumanize and disempower. Both words connote two-dimensional, simple or limited people. Neither angels nor retards can live in the world with the rest of us, except as pets, charity cases or abstract sources of inspiration.”

The discomfort I feel when people refer to my child as something otherworldly was validated when I read it. Kimani is not an angel. She is just a girl... a girl with an extra chromosome who suffered brain damage as an infant. Physiologically she has too much, and too little. I admit that there may have been a time early on that I hoped she was an angel. The path she has been relegated to would be less painful (for me) if I knew that she was in fact a higher being submitting to some Godly purpose here on Earth. But, alas, she’s just a girl.

If she were an angel, she would not have gotten herself kicked out of the church nursery 7 minutes after I dropped her off there for the very first time. Yep, we have not gone to church as a family in a long long time but last Sunday we decided to try a church we have been wanting to visit. Kimani terrorized the nursery workers and children. In a flash she swiped everything off the little table and tried to climb up on it. She took snacks right out of the hands of her peers. She stomped back and forth the length of the room, thrashing and trashing in her usual Godzilla style. The poor shell-shocked nursery worker handed her to me over the gate and said, “I’m sorry, she needs a one-on-one.”

A very cool feature of this church is that the later of their two services is in a big room that has a children’s play area in the back. I took her over to the toys and let her play on one of the little tables while I listened to the message. My husband slipped out of his seat and joined us. This lasted about 5 nerve-wracking minutes until she spit up some milk. I left to get a paper towel to wipe her chin with, and she escaped her father climbing down from the table and up onto another one... that had a bucket filled with Legos on it. In a split-second she threw the bucket and all those tiny Legos made the loudest noise ever. That was it... the non-angel went to sit in the van with her daddy.

There is still a chance though that she has a Guardian Angel who watches out for her. Take a look at this clip of our daily life, and you decide.

You've Got Homework

Remember way back when you were in school and the most your parents had to do was give you lunch money and sign your report cards? (Unless you got a really bad test score and then they had to sign that too.) Well, sometime between the 70’s and the 90’s someone decided that parents should sign nightly homework sheets, and that my friends was the beginning of Parent Homework.

After that came the reading sheets giving bedtime nighty-night stories a whole new purpose. Though I felt uncomfortable "reporting" the stories I read to my children each day, I went along with it.

And now, 15 years into our school/parenting adventure, we find ourselves with a 1st grader who gets homework that a six year old child cannot complete independently. Our role has changed from providing homework oversight to being active homework participants. One of us has to go through the work with him... reading full length poems, explaining complex instructions, walking him through the questions, and checking off five different parts to the homework each night.

Because Jade’s homework requires about 45 minutes of parent participation, it gets done when and if I have the time to do it... which is not necessarily when he would like to do it. So for the first few weeks we battled over it and 45 minutes went well over an hour. Some nights it didn’t get done, and at the end of the week the packet would have some blank pages.

The first time the teacher sent the packet back and asked that Jade "make up" the blanks, I wrote her a note explaining that what gets done is what gets done and I am not carrying over last week’s homework into this week’s. At our conference I explained my reasoning, and I thought we had an understanding about how homework would go.

Until the week when there was only one night it worked out that homework got done. First there was the Frankenstorm, then Halloween, and then momma left town for a few days. When I got home on Sunday night I found Jade’s homework packet in his backpack with a note saying that he was to complete it over the weekend and bring it in on Monday. At first I was annoyed with my husband for not looking in the backpacks on Friday and doing the homework with Jade over the weekend... but then I realized that the real problem is that the homework is not appropriate for a first grader to do on his own. So I wrote a little note explaining our week and said that we would not be making it up during the coming week.

When Jade came home from school on Monday furious, throwing his backpack on the ground and yelling all the way up the driveway, I knew something went very wrong at school. I asked him to talk to me about it and he finally told me that he had to miss recess to stay in and do his homework packet.

That was it for me. I was pissed. If mommy doesn’t do her homework, Jade misses recess? I wrote to his teacher and suggested a positive alternative to Jade missing out on something he loves. She sent me back excerpts from the school’s homework guidelines and suggested I use my "sticker reward" idea at home. I won’t bore you with the back and forth details, but it went on for a while with the teacher insisting that Jade’s homework will get done, if not at home then in school.

Now if the homework could be done independently by a 1st grader, I would agree with that, but it can’t. So I said either he gets homework that he can do on his own, or he does what he can on the packets and loses no positive activity time at school as a consequence of not completing the whole packet.

Queue the meeting with the teacher and principal wherein I learned that they know the work requires adult participation. I was told that the school is providing us with a bonding opportunity, and a way to invest in our child... that there is not enough time in the school day to do all they need to do, so the homework provides a chance to go beyond just practicing math, reading, and spelling. When I said that I don’t think it is appropriate for the school to be pushing into my home with bonding and investment requirements, I got the "You are the crappiest mother in our district" stare.

So I guess instead of family game night, we are going to have family homework night. Come on children, you bring your math sheets and I’ll bring the popcorn. Woot woot, isn’t this fun?

Open Season

My childhood was filled with killing. There was no real season for it. The guns stayed in the truck window hanging on the rack all year long. Depending on the time of year, the dead deer were either strung up proudly in a tree at the end of our driveway, or hung secretly down in the dirt cellar. We butchered them on the kitchen table. Bones sawed and cracked through rang in my ears. The blood got on everything, and it smelled...sweet and heavy on the edge of decay.

And it wasn’t just deer. There were bloody headless chickens who ran even after they were doomed. There were turkeys soaked in pails of stinking brine whose feathers needed to be plucked out. Pluck, pluck, pluck... the perfect word for how it sounds and feels to pull a feather from a soaking wet bird carcass. There was the rabbit I saw getting skinned. My young eyes were fascinated by how his coat peeled from his body, leaving a thin layer of film to hold in his red, purple, and grey guts. “Looks like a peanut butter and jelly sandwich,” My grown step brother said staring down at his catch. The next time I opened my lunch to find the white bread faintly seeping up with grape jelly trails, I knew he was right.

And it wasn’t just things we ate. There were troublesome dogs, unwanted litters of kittens, and foxes who did not belong in our coop. There were floating bull fish after the quarter stick went ka-boom in the pond. There were unrecognizable piles of skin and bones littered throughout our woods. The deer skulls were obvious... the others I wondered about.

And it wasn’t just animals. There were two little girls who came to believe Him when he said he would tie cement blocks around their necks and throw them in the pond. Those girls grew up and got away. But I know if you go back and look into that dark and murky water you will see reflections of them lying there at the bottom.