Thursday, December 24, 2009

Love Is...

...the Christmas ornament Samantha made in school. I'm not sure what part of it she was involved in (it certainly wasn't writing her name!), but who cares? I LOVE it. She proudly removes it from the tree and brings it to me now, then takes it back and carefully tries to put it back on (sometimes successfully). This is something I will treasure forever and box very carefully when this season of comfort, family and tradition ends.

Tuesday, December 15, 2009

Local Support (and a Hug From Santa)

This past Saturday was the Down Syndrome Association of Northern Virginia's annual holiday party. The support system in this area is pretty massive--there are, I believe, upwards of 600 members (not all active participants, but they're generally still in this area) and including parents and siblings, there had to be about 300+ people at the party. One of the most wonderful things about these community gatherings is the chance to see so many BEAUTIFUL, chromosomally-enhanced faces. I remember my trepidation attending my first event (Actually, it was the holiday party when Samantha was 6 months old). Steve, Samantha and I sat pretty much by ourselves, just taking it all in. But I remember being somewhat comforted by what we saw, beautiful people interacting and enjoying themselves. We knew we'd be okay. I'm one of the DSANV's Parent to Parent volunteers, which means that I occasionally speak to new parents of babies with Ds, offering them an ear to bend, a reference source for questions, and a safe haven to voice their stories, their fears and their feelings. I love knowing that I may be able to make a difference to them, and it's so gratifying to see some of these families at the gatherings throughout the year, getting to meet them and their children face-to-face. I'm always so heartened by the sight of them looking relaxed and well-adjusted, talking to other parents and making new friends. This is how it all begins, and how the community is built and grows...and grows...and grows...

But back to Saturday's event, the thing I was looking forward to the most this year was for Samantha to get to see Santa. Every year she does extremely well sitting with Santa and having her photo taken, but this year she's far more aware of who Santa is, and we've been building up the idea of Christmas with her. I was a little bit worried that some latent shyness would kick in when she was confronted by the jolly man in red, but lo and behold, she ran up to him and gave him the biggest, most genuine hug (see photo above)! After having her picture taken, she was reluctant to leave him, and continued trying to go to him afterwards, even when he had another child on his lap. Christmas is not a religious holiday for us. It's about family and tradition, and that warm feeling you get from making other people happy. Samantha's at an age now where tradition will begin to be remembered, and I want to be sure to make those indelible, happy childhood memories for her. I think we're off to a good start.

Monday, December 7, 2009

The Concept of Pain

Introducing the concept of pain or hurt to a young child is a difficult one. I can’t help wondering how many babies and children have something as simple as a headache or a sore throat and are unable to tell us. And we wonder why they’re crying. Having a child with a developmental delay compounds things a bit more. Two-way communication with the child takes much longer than for a typically developing child. Whereas a typical child can tell you what they’re doing or feeling or what they see when they’re two, a child with a delay can sometimes take twice as long, if not more. And to make matters worse, our kids with Down syndrome often have a higher tolerance for pain, which always worries me. Will she be able to recognize something crucial as important to tell mommy and daddy? To what extend do our children have a higher tolerance? While we don’t want our children to feel pain, we do want to know when there’s a potential problem so we can fix it.

This was all driven home for me several weeks back, after Samantha’s accident. I think I had mentioned already how we had a bit of a giggle (along with some frustration) when the doctors and nurses kept asking Samantha what hurts. I just kept picturing her jumping up, pointing to her elbow and saying, “Well, doc, I have this big bruise here, and my arthritis is acting up, and, well, it hurts when I inhale…” I’ve been talking to her more about her boo boos and about how they hurt, and I think she now gets it. She’s very sensitive about boo boos and will cry if she has a Band Aid (just knowing there’s a boo boo under it upsets her). When the Band Aid comes off, she says, “All done Band Aid” and is very relieved to be done with the whole mess, real or imagined. The other day while she was lying with her head on my chest while we watched cartoons, my stomach grumbled (rather loudly, I might add). She sat up, touched my stomach, and said, “tummy hurt!” She did that again, every time it made noise. Also, we’ve been trying to get her constipation under control (it’s gotten particularly bad after her visit to the hospital that day—we think she may have been particularly constipated because of all the drama and fear surrounding that day, but then she may have just become afraid to go as a result), and gave her some extra Miralax and some prune juice yesterday. I think it may have caused some cramping, because a couple of times she said “tummy hurt,” but not in reference to my rather boisterous hunger pangs this time. When I asked her, “Does your tummy hurt?” she responded yes. She then proceeded to make full use of our plumbing facilities, if you know what I mean (Sorry, I was determined not to have a poo post here).

This idea that she can tell us when something hurts is quite exciting to me. Not that I want anything to hurt, but at least I can know how best to help her when she needs it. As it is absolutely not a certainty that she truly understands this, I’d love to hear how some of you have taught your children how to identify and communicate their discomfort. By the way, one of these days I'll learn how to write shorter, more to-the-point posts, rather than rambling on and on like this. I guess that's what I get when I post less than once a week.