Saturday, May 06, 2006

Down Syndrome Overload

This past week, I attended the Down Syndrome Assoc. of LA's spring luncheon, attended my MOMs support group, and we are heading to the Special Olympics mini meet tomorrow, and part of me feels like it's Down Syndrome, all the time. I know it's just been a busy week, but I feel as if all I have been doing is talking about Down Syndrome and I feel as if I need to go away for a little while from it, and just be a family, with no talk of abilities, or disabilities, therapy, education, milestones, etc. Sometimes I just want to not talk about it, and instead dwell on the normalcy of my child and his life. But it's hard not to, especially when people ask me about him, or comment on him...

I brought him in to work the other day because I needed to check some e-mail, and he enjoyed it so much. He loves to run down the halls and laugh. Everybody thought he was so cute, and my boss was entertaining him so much that he didn't want to leave. Then the next day when I went into work, everybody comments on how well he seems to be doing, and how much he's grown, and I wonder, do people comment like this on other kids who come in? Other 'typical' kids? I mean, I guess it's flattering that they all seem to be so enamored of him, especially since he is such a charmer, but sometimes I just get tired of the questions, and having to explain the therapies he is in, and where he is at in comparison to a typical child his age.

Anyway, I met some really great parents on Tuesday at the DSALA luncheon, and in some weird way, it feels good to be a part of something. I mean, I didn't ask to be involved with this group, but nevertheless, we are a part of it, and somehow I feel that by being a part of it we will be enriching Owen's life in ways that we can't begin to fathom right now.

On Wednesday, we had our MOMs support group, and it was so great. I never laughed so hard, and yet, our conversations got really tough and really gritty about some of the issues our children will face, including health issues. But, as moms, we never lose sight of the fact that there is a lot of hope for our kids, especially given that we are one of the first generations utilizing the early intervention, which is helping our kids advance much more than DS kids in the past. Plus, I feel that as a group, we are carving out our specialty in Down Syndrome so that we can educate other people. As I said before, though, sometimes it gets to be a chore educating people, especially when I find so much ignorance out there. But overall, I am excited about the possiblities that lie ahead.

As for Owen, he is sick again, and I just don't understand how he can have so many colds in such a short time. Then people tell me that the more sick he is now the less sick he will be when he starts school. Hmmm... I'm not sure I'm buying that one, because he is barely in school as it is. So where does he keep getting these colds from? And, of course, Tess is congested as well. But for some reason, I feel like she is a stronger, healthier kid, and I'm not so worried about her. Owen's breathing is so labored at night when he has a cold, that I wonder if he can even breathe. Sometimes I hear him hold his breath, and then I wait for him to start breathing again. It scares me, and the other thing is that it keeps me awake all night. Meanwhile, the newborn who is supposed to be keeping me up all night is actually sleeping through the night until 6 or 7 in the morning. I truly think she is the only one who gets a good night's sleep.

The funny thing I have realized is that Owen has now started to wake up in the middle of the night, and come into my room, because he (drum roll please) is potty-training himself at night! I couldn't figure out why he was waking up, until I realized it's because he has to go to the bathroom and doesn't want to go in his diaper, because he is potty-trained during the day. So what I thought would be a long time before we potty-trained him at night, is actually happening now, and he is self-training. Can you believe it? My superstar child is actually waking up to go to the bathroom. The problem is that he has a hard time falling asleep again. But I can't ask him not to wake up since we have trained him to tell us when he has to go during the day. I'm sure we'll get through it, as I walk through my days sleep deprived, but also cheering my son on for the amazing job he's done at something other parents of typical kids have had a nightmare time with.

Besides, before I know it my children will be grown and I will be saying, "Remember when?"


Anonymous Anonymous said...

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2:34 PM  

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