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Contributed by Laura
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by Laura Hershey
© 1997 All rights reserved. Used by Permission.

Yesterday, the kids had the day off from school for Veterans' Day. I was home alone with Alyssa for about an hour and a half while Robin took Kevin to a badly-needed therapy appointment. We were getting along fabulously -- playing computer games together, talking, and she wrote another poem which she proudly showed me. Then, about 10 minutes until noon, Alyssa said, "I'm hungry. Can I have a snack?" I answered, "Kathy will be here in 10 minutes; and Robin and Kevin will be home soon too. Then we'll all have lunch. Can you wait until then?" Well, patience is not Lyssa's strong suit. She started whining a little, so I said, "OK, let's go in the kitchen and see what we can do." I kept advocating for fruit -- grapes or apples or oranges, all of which were within easy reach, and healthy to boot! But she wouldn't hear of it, the stubborn little thing! First she wanted a cheese stick; but the deli drawer in the refrigerator was too hard for her to open. I saw a box of crackers on the counter, and suggested she have a few of those. She pulled the box over, but found that the bag inside was still sealed, and she wasn't able to tear it open. By this time, it was literally 5 minutes before my friend would be here to fix lunch. I suggested a banana, or a piece of bread. No way. I said, "Lyssa, why don't we just wait and have lunch in a few minutes?" A dark scowl overtook her face, and her small hands balled into fists. "Oohhh!" she yelled in frustration. "I'm not going to eat anything!" Then she added angrily, "I wish you could move your hands!" Then she and her walker clattered off to her bedroom, where she dramatically slammed her door shut.

I let her go, and went back to working on my computer. Soon Kathy showed up. Alyssa came out of her bedroom to greet her, but at first she wasn't talking much to either of us. I said, "Lyssa's a little bit mad at me, aren't you?" Alyssa narrowed her eyes at me. I added, "But I think she's almost over it, aren't you?" She smiled a little, and we went on with our day.

Being with these children is really teaching me the importance of recognizing, expressing, and acknowledging feelings -- especially anger, which they have a lot of, and which can be really destructive if it's not openly expressed. I was proud of my own reaction to her outburst: I didn't get mad, defensive, or hurt by it. (In fact, I really had to admire it. I really love how this kid expresses herself and then lets it go. I wish more adults could learn to do that!) Two months ago, if I had imagined this scenario, it would have elicited feelings of guilt and inadequacy -- like, how can I possibly parent, when I can't even fix a snack? But when she confronted me like that, I found that I felt fine about it. It's just reality: Neither one of us was able to get certain items, but I had carefully planned the day and arranged for assistance (even though my regular afternoon attendant was out sick) so that we would have timely meals. And Alyssa wouldn't starve in the meantime, with all that fruit available! It was her choice to hold out for something different, and to get pissed off when I couldn't get it for her. And that was fine with me -- I also get unreasonably stubborn and pissed off sometimes. Don't we all?

I think that time and experience are the reasons that my feelings about this have changed so much. With all the needs these children have, both Robin and I have taken on extraordinary amounts of responsibility. Robin is able to meet some of their needs that I can't; I'm able to meet some that she can't; and we hire attendants for everything else. And of course, hiring/scheduling/supervising attendants is, in itself, a huge responsibility, which is mostly my arena. Given that I spend such a large portion of each day doing things for the kids -- whether it's taking them to medical appointments, making appointments on the phone, advocating for transportation to school, strategizing and carrying out disciplinary measures, helping them with homework, reinforcing good behavior, confronting bad behavior, reminding them to brush their teeth, talking to them, paying attention to them, planning and taking them out for fun, etc. etc. etc. etc. ETC. -- with all that, it's no longer possible to think of myself as incapable of being a parent. I'm certainly not saying I'm perfect at it! -- or even really good at it. I do think I have reasonably good instincts, but I still have a lot to learn about kids. However, that's true of every first-time parent-type person -- and I'm a little older and smarter than most of those! But I no longer fear -- as I must admit I once did on some level -- that my disability is a major barrier to this. I am committed to them; I have accepted and am fulfilling a large responsibility toward them; I am taking care of them. That's something they haven't gotten much of in their troubled lives. I hope even to make a difference for them!

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