Discipline

I know that I was over-protective when Ellie was an infant. I'd read that perfumes could irritate a newborn, so I immediately stopped wearing anything with scent and implored my cologne-loving inlaws to do the same. I insisted that everyone wash their hands before holding her. I kept her home a lot.

In my defense, she did have a serious heart defect, and I was given to understand that it was imperative that she not get sick her first winter. And it worked; we made it through. Ellie caught her first cold over an April Easter weekend, when she was 6 months old, a safe 3 months after her heart surgery.

Discipline and protectiveness are a balancing act for new parents.

About a month after I started taking Ellie out of the house, we went to a playgroup for kids with Down syndrome. It was held in the gym of what's now Ellie's school. The bigger kids ran around and played with the equipment, while the parents and babies clustered on the mats at one end of the room.

There was a 2-year-old named Phoebe (not really; I was just watching Charmed) at the playgroup that first time we went. At this point, while I loved my daughter deeply and passionately, I was still dealing with a little bit of discomfort about Down syndrome as a large, monolithic, scary thing (was?!).

And Phoebe horrified me. She looked really disabled. And she acted, oh, she acted so horribly. She was sitting with the mamas and babies, but she was in no way careful of the babies around her. When she was frustrated or bored, she'd throw herself down and kick with abandon. And those heavy, leather shoes-over-orthotics seemed monstrously huge to me. When she was thirsty, she'd grab another child's sippy cup and drink. When she wanted a toy - even one of Ellie's specially clean ones that we'd brought from home - she'd grab that toy right out of another child's hands.

And her mother did very little about all this. Mainly, mom seemed to really enjoy relaxing and chatting with the other parents. In retrospect, this isn't so horrific for me, but at the time I was stunned. I didn't go back to that playgroup for a long, long time. It seemed to me that this mom had given up on her daughter ever learning discipline and appropriate behavior and was using her disability as an excuse not to try to teach her.

But now I understand that it was probably a relief for this mom to be in a place where her child wasn't expected to be normal. It was probably a rare occasion for her to get to sit down and talk to other moms who get it.

But at the time, I was scared to death of that child. I didn't want her scary, rough, germy self anywhere near my child, and I didn't want my child to be anything like her.

Of course, as these things go, some others are bound to see Phoebe when they look at Eleanor.

Several months later, we were at a party with friends. One family brought their little girl, who was about 5 months old at the time. Like most babies, Ellie was (and still is!) fascinated by other babies. We had been working on "gentle touch" and she knew better than to hit, bite, or scratch a little baby.

She just wanted to look at this lovely little creature on the floor next to her, and I was keeping a close eye out to make sure that Ellie didn't actually touch the little girl.

But her mama whisked that baby away from Ellie anyway, just as though Ellie were Phoebe.

Ouch.