Monday, November 23, 2009

Halloween

"How long until we go trick-or-treating?" Emma wants to know. "Seven more hours," says Mommy. And Ryan steps onto the front porch, shuts the front door, and rings the doorbell. "Trick or Treat," he says and holds out his cloth pumpkin bag.

I couldn't stay to see them all dressed up for the big night, but I did get a preview at school the previous day as they marched around the school grounds in their costumes. Some of the kids were hopping around, sharing giggles and staying in character; one small firefighter was squirting imaginary water at everyone. Emma was in the more serious category, and looked warily at the crowd as the walked by in the procession.

During Em's parade, Ry and I were sitting on a picnic table about thirty feet away, and he was not interested in getting any closer to the crowd. I wondered what he was thinking, as I often do.

Sometimes I get a surprise glimpse of his thoughts, but it's more like poetry than fact, usually more about feelings than about thoughts. That's where we connect -- in the land of feelings and spontaneous play.

He was dressed up as a rooster this year, and sure was cute in it, but he didn't appear to be wondering what anyone else thought. I hope he had fun.

Tuesday, November 3, 2009

Mother-in-Law

When my son was first born it was a struggle to hold onto my sense of self while my mother and my husband's mother passed lots of information to me. I didn't feel grateful for the sharing; their advice stirred my secret suspicions that I was not a good mother, and I felt resentful.

Clearly, my daughter-in-law is her own person, and I can't assume that she is plagued with the same insecurities that I felt. But I sense a subtle, cautious distance between us that prods me to look back to my own history for help in understanding how to be an asset rather than a liability.

I made plenty of mistakes as a mother, so looking back isn't very comfortable. I stumbled along and learned through trial and error. The main thing I learned is this: I don't know much that's worth passing along. My so-called knowledge applies to conditions that no longer exist.

I have no answers for my son and daughter-in-law and they don't need my answers. In my opinion, they are fabulous parents. Down Syndrome puts plenty of extra work on their plates, and they go above and beyond what needs to be done, which makes it easy for me to enjoy being a grandmother.

Despite my shaky parenting, my son grew wise and he chose a mate that is pretty close to perfect. (If I had arranged a marriage for him, she's the one I would have chosen.)

I'd like to change one thing about her: I wish she could read my mind so she'd know how much I appreciate her. My goals are to be a loving grandmother, a respectful and appreciative mother, and a supportive and non-interfering mother-in-law. And to love them all without holding back.

Wednesday, October 21, 2009

Emma and I Work Things Out

Emma, almost five years old, and I have had to work things out between us. She has turned my vision of "grandma" on its head! My plan was to be a doting grandma, always fun and giving and being the best friend Emma and Ryan ever had. As so often happens, my plans were just the jumping off point to a wonderful and unexpected adventure.

Emma came into the world with her own plans, thank you very much. Her mission was and is to learn how to operate LIFE with great expertise. She is an information suction machine: almost nothing gets past her. She knows the location and functionality of every object in the house, how each glass of water should be poured and how to stir the scrambled eggs, who will attend her next birthday party and where it will be held and what they will serve, and she is very good at figuring out how to get people to do what she wants.

I'm one of those people, of course. The challenge has been in the "sizing up of grandma" process! How can she get Grandma to do her bidding? How can she get Grandma's full attention? Will Grandma put her toys away, give her an extra popsicle, take her to her favorite restaurant, or let her jump from the top stair to the bottom in a single leap? I thought I would do whatever Emma wanted, but it soon became obvious that I needed to draw the line. Beyond all else, I needed to establish myself as being in charge so that I would be able to keep her safe.

The old standby tricks that worked on me as a child were of no use with Emma. I wasn't sure they were the right way to go, anyway. I expected a frown to slow down her behavior, for fear of being in disfavor. Not with Emma! And saying no used to invoke a fury of protest. But that seldom happens with us anymore, not since that one day it all changed.

Much to my puzzlement, and happy astonishment, she has never been concerned about what others think of her. She's her own person. Why should she care what I think of her if she gets what she wants? Shaming has never been applied to this child, and for that I thank her parents. It was a standard tool in past generations, and it has stopped with this one. I am not worried that its absence will "spoil" anyone!

But, without the old "child-control tools" in my tool belt, I was at a loss. This little girl, from the time she was born, has displayed a natural tendency to live out loud. Glorious! But not easy for a fairly passive grandma.

When she invented a new game of sliding down the side of the bathtub into her brother's shins, a quiet admonition of "Em, you might hurt yourself or your brother, so please stop," didn't slow her down a bit. I got louder, and still no response. Lifting her out of the bathtub worked well. But would I still be her fun Grandma? Displeasing her was risky and often initiated a tantrum, which made me feel terrible and usually started Ryan's tears, as well.

The shocking turning point for me was something that happened without forethought. The bathtub, again! I had just taken them both out of the tub, dried Ryan off, and was getting ready to put Emma in her pajamas when Ry started splashing the water that had not finished draining out of the tub. "Ryan," I said loudly, "Come over here. I want you to stay dry." I reached over and led him to the other side of the bathroom. Before I had turned back, Emma was leaning into the tub, splashing with both hands. "Emma, stop." No response. Before I could think, I smacked her bare behind. "Grandma, you hit me!" she said, incredulously. "Yes, I did, Emma." And I proceeded to get her dressed.

I don't at all advocate hitting a child, and was very disturbed that it had happened so fast. But I'm not entirely sure I regret it. Something changed that day. We had established a new hierarchy, and she and I have had a wonderful change in our relationship. Half an hour later, she was in my lap laughing and playing and we were giggling together as we'd done before. But ever since that day, she has taken more care to listen to what I say (well, most of the time!). She can rely on me to keep her safe. She is no longer in high command.

It has been a great shift for me, way beyond being "Grandma." I've taken a larger place in my life. My self-respect has increased. I see that being pleasing is not all it's cracked up to be, and that it can be much easier for everyone around me if I let them know my preferences and where I draw the line. I am allowed to be the one that gets what she wants some of the time. And Emma can trust that I will be the adult so that she can be the child.

Perhaps some of the change in her is the result of what her mother and father told her that night, after I had related what happened.  I don't know what, if anything, they said to her. (I had been so afraid that they would ban me from being Grandma!) They explained to me that, although they were occasionally tempted to give her a swat, they have a "no hitting" policy in their home. And I have promised to honor that, of course. But I am not sure that one swat was such a bad thing. It woke us both up, and gave us the freedom to love each other in a new way: she knows I'll draw the line, and I know I can keep her safe.

Sunday, October 18, 2009

Brother and Sister

Emma is four and a HALF (she says with emphasis) and in my opinion, going on 35 or 80. Wise beyond her years, yet still a little girl. She is also claims her place as Ryan's "big sister" although she is three years younger than he. I sometimes worry about her tendency to take care of him and wonder whether Down Syndrome is robbing her of something. I've decided to quietly observe, as though I were on an intergalactic mission on the Starship Enterprise, dutifully resisting the temptation to interfere. Their Mom and Dad have those harder, more complex decisions to make.

My intuition tells me to focus on my self-assigned role: a lumpy and imperfect combination of unconditional love, safety monitor, source of fun and laughter and comfort, repairer of minor toy and body mishaps, impartial referee, and a conscious example of living the best life I know how. And everything I say or do is being observed and absorbed and reflected back or judged aloud (Grandma, you're supposed to add the water FIRST).

I used to suggest to Em that she gets to act like a little girl while I am on board -- that she doesn't need to work so hard at watching over her brother ("Grandma, you forgot his book;" "Grandma, he doesn't like that shirt"), but I've given that up. She seems to keep a good eye on her own needs as well as his.

In addition to the bear hugs and obvious love they share, there is, of course, sibling rivalry! One of my biggest challenges when taking care of them both at once is to be attentive to each of them, without playing favorites.

It's flattering to be so wanted, but not at all easy to share my focus or even my lap with them both! They have two opposite styles of playing most of the time. Emma is interactive and wants to be in the spotlight, and she's constantly pushing at the edges ("Grandma, watch this!" as she twirls perilously close to the lamp). Ri lights up  and squeals with delight when I arrive, gives me a big hug, and invites me to play quietly with him ("Grandma, build house.") He tends to step back when Em wants the limelight, which is most of the time. If I sit with Ry, Em wants to sit right in the middle. If Ry is using a toy or a book, it's suddenly the one she wants.

I've always had a soft spot for the underdog, so I have to remember to be  neutral: she's doing exactly what she's supposed to be doing -- honing her survival skills! She has learned to ask for what she wants, even remembering to say "please," yet there's a certain passiveness in Ry that she counts on, with only an occasional "hey!" of protest from him when he's feeling especially strong. I step in sometimes and remind her that the toy/project/snack she wanted so much just a moment earlier is still hers. And sometimes I just let it go, hoping that he might be learning to be a bit more assertive, and knowing that I will not always be there to soften the world's demands.

The hugs, the wide eyes, the silly giggling, and the cries of frustration and skinned knees - I love my Fridays! I am often bone-weary when I make the two-hour drive home, singing along as my internal radio plays the "Hokey-Pokey" or "Slippery Fish."

Has Down Syndrome made a difference between the two of them and the three of us? Definitely, but so far, I can't create neat columns of what's good and what's bad. It's all part of the mix that binds us together as family. And I get to be Grandma! Slippery fish, slippery fish, swimming in the water...

Friday, October 16, 2009

The Upside of Down Syndrome

This is my first blog entry, and Ryan is sitting across the room on the couch, delighted with the control he has over the DVD he is watching because he has figured out how to use the remote. The Baby MacDonald Puppets are on his favorite DVD; the devilish horse that eats the daisy seems to be his constant delight and is sometimes played more than a dozen times in one sitting.

Ry is seven years old, but what does that mean without the context of "normal"? What is normal, anyway? That's one of the many questions that Down Syndrome has asked of me, and I am grateful to be asked.

He has pneumonia this week, but you'd never know he's ill. He hasn't figured out that illness could garner sympathy and special treatment, so he's simply happy when he's having fun and sad or angry when he doesn't like something. Fortunately, he likes ketchup, so that's what I used to disguise his probiotic supplement today, which helps neutralize the harsh effects of the antibiotics he's taking.

I watch him and his 4-yr-old sister almost every Friday, while Mom and Dad both work. Today, Em is at school and Ry is home recuperating. I love them both, of course, yet my experience of them is different when I have just Em or just Ry, or both together. It's easier and quieter with just Ryan and me. We have special games that we play, which we somehow made up together. He loves to tell me to sleep, which I am happy to pretend to do, including snoring effects, and on command, I wake up and tickle him. That can entertain us both for as long as 15-20 minutes.

So much to say, but not all at once. Ryan is the most authentic and loving person I've ever known. Not a mean inclination in his entire being. Best hugger in the world. And, with very few words, we share a love that is delicious.

Does Down Syndrome really have an up side? It certainly does. I have learned more about love and caring from Ry than I ever knew was possible. He seems like a happy child. And, no doubt, there's much more that I cannot guess.

I am blessed and grateful and a better human being for having him in my life. Talk to you soon.