Tuesday, January 22, 2008

Why some things are just really hard

This morning I took Hannah and Isabelle to music class for the second time. The instructor is very low-key and friendly, and it's a casual environment with a small group of moms and kids in a big studio space about a mile's walk from our house. I really like that we've found something so convenient that is a safe and nurturing place for me to take the girls because as I've mentioned before, it isn't easy for me to try new things with them; the logistics are always hard for any mom of more than one kid, especially when one isn't walking, and especially in the winter.

But even in this safe place, it is still really hard because with each new thing we do, it's another reminder of how difficult certain things are for Hannah that other kids can do with such ease.

Different aspects of this class are a challenge for Hannah. In general, in a new environment she is more tentative and unsure of her body and she has a harder time with things like balancing in a sitting position. She is also more prone to being startled by unexpected or fast-moving visual stimuli (like kids running around her with musical instruments in their hands). This class is also very movement-oriented, so much of the time the kids are up and dancing, banging on instruments, running around with scarves, moving in different ways to music. When it's time to get up and move, I always struggle with whether or not to hold Hannah's hands so she can move herself or hold her in my arms. I try to ask her, over the din of the music, whether she wants to dance by herself or have Mommy hold her (she's usually pretty good about expressing her preferences). I don't want to deprive her of the experience of moving around herself but she seems to enjoy when I hold her. Then there's Isabelle, who wants to hold both of my hands and dance around with me. Today I put Hannah on the floor while Isabelle and I did a jig and it felt so effortless and light and freeing. And then I looked over at Hannah and saw that she was struggling to keep herself sitting upright and I immediately felt so sad that I wanted to cry.

I fought the urge to cry several times throughout the class, as so many of the activities were impossible for her to do without my help. But Hannah didn't seem sad, just tired and content to sit.

Then when we got home and after she had a hit of some milk and crackers, she was crawling all over the floor, pulling up at the cabinets and kneeling in front of her toys, chattering up a storm.

It's so hard. At home, Hannah is a vivacious, energetic, social, fun-loving kid who can move around pretty well with some minimal help. At home, we know the parameters of her disability and we are well-versed in what she can do well and what she can't. When we go out to different kiddie activities, Hannah gets quiet, easily tired, and much more affected by her motor difficulties. She isn't clingy or anxious, just much more tentative and content to observe.

Some days I can deal with this and some days it just breaks my heart. Today, maybe because of the gray skies and cold weather and lack of sleep, today was a heartbreaker.


Melissa said...

I am in awe of you for even attending the class by yourself with both girls! I have often thought of trying something like that with the boys, but with neither of them walking yet, I have no idea how I could do it on my own.
Isabelle and Hannah are both so lucky to have you as their mom! I'm so sorry you had a rough day, and I completely understand.

Anonymous said...

Well, first I'd like to comment about the sleep thing. I have two girls 8 and 5. Yes, I know where you're coming from. Yes, I dream about torturing them when they're teenagers and going into their rooms with a set of drums at 6 o'clock in the morning. But..it does get better. Your girls are still very young. They nap, they're little so they tire more easily, etc etc. Don't despair. There will come a time, and you probably won't even notice when they will sleep at a reasonable time and wake up at a reasonable time. My mistake sometimes still is that i put them to bed thinking they'll sleep in more. NAHHH BAD mistake. Not only do they get cranky when it gets past 8 pm, they also wake up the same time the next morning. In fact, the earlier they go to bed the better (and more) they sleep. Go figure.

I'd like to also comment about the music class. I can't even imagine how hard it must be for you..for any mom really, but especially for you with the disabilities the girls have to not feel the way you do. I read in Billies blog one day about an article that was written about children with disabilities and how there's really no reason to feel sorry or even bad for these children, because they don't feel sorry for themselves. They have accepted their limitations and in fact are just as 'happy' and fulfilled with life as anyone else. In other words, you may have felt bad at your daughter's limitations, but she in fact was probably having the time of her life. I'm not dismissing your feelings, because as a mother I know exactly where you're coming from. I only hope to lessen the burden of guilt you feel. We as mothers (and we all do it) blame ourselves for everything under the sun. I'll try to find the article for you and I'll post again if I do. In the meantime, have fun with the girls and enjoy every minute, because I can guarantee you that THEY are!!