NOAH AOC

The Albinism Online Community
Welcome to NOAH AOC Sign in | Join | Help
in Search

NOAH's Parents Blog

February 2008 - Posts

  • Bowling for 'Binos :)


    Yesterday my daughter Trisha and I bowled as part of Team New Hampshire’s 2008 Bowlathon.  It is always fun to make new friends and catch up with old ones (even if the little girl you met when she was four is now a freshman in high school!) We had 17 people from 5 families at our gathering. I want to thank the two Tricias (Tricia Thomas and Tricia Roy) for all their efforts putting the event together. Late last fall, I was entertaining the idea of hosting a Wii bowling event;  I even have a half written blog post outlining the necessary elements, but then life got in the way.  I provide administrative support for my Trisha’s brownie troop which among other things means being Cookie Mom.  This weekend designated as cookie delivery weekend and I knew that having 1200 + boxes of cookies stacked in my living room would make hosting a bowling party a little challenging. So, we went to Windham, New Hampshire to bowl in person instead of virtually.

    I grew up with 10 pin bowling, but here in New England, they favor candle pin bowling (straight skinny pins, and smaller balls without finger holes).  It doesn’t matter which version I play,  I stink at both.  Today, we played glo-bowling (dim lights, lots of black lights).  At first, I though the dim lights might make bowling easier. but the pins were lit by bulbs that were continuously changing color.  Easier? eh, not so much. 

    Those who know me know I am not known for my grace and style.  Today was no exception.  I slipped at least 3 times and yes, once landed on my keester.  Not being able to see clearly at a distance means you can’t see how hard people are laughing at you. As I struggled to put the ball where I wanted it, I had to wonder who’s brilliant idea it was to send the legally blind people BOWLING? That said, we did have fun, and it wasn’t really about the bowling, it was about getting together in NOAH’s name to have some fun and raise some money and today, we did of both.  

     I have photos, and as soon as I figure out how to post them, I will :)

  • Siblings of a Child with Albinism


    Lately I’ve been thinking about or maybe even a little concerned about my older two children who don't have albinism,  Dominick and Rebekah. At the same time, I’ve been thinking about or feeling like lately I’ve been spending an enormous amount of my time focused on Lyra’s needs and neglecting the needs of Dominick and Rebekah. Have they noticed? I’m sure they have. A couple of friends and family members even questioned me about the time I’ve been spending on Lyra compared to my other two. How has it affected them? I have no clue, at least right at this moment. Apparently I’ve been too busy to notice, and that’s a problem. How does having a child with albinism affect the lives of his/her siblings both in positive ways and in negative ways?

    Earlier this week, an interesting post popped up in my blog reader from a blog I recently subscribed to, Parenting Special Needs on About.com. The post was entitled: What Siblings Would Like Parents to Know. I think it was exactly what I needed to read and exactly when I needed to read it. A couple of things I read in it really jumped out at me.
    The first, was that siblings of a child with special needs will be in the life of that child
    longer than anyone else. Dominick and Rebekah will have a relationship with their sister long after I’m gone. What kind of relationship do I want that to be? Of course I want it to be a positive relationship. I want them all to be close, and to love and care for each other. The last thing I want to do is cause Dominick or Rebekah to feel resentment. What if I’ve already started to do that?

    The other point in the article that jumped out at me was this: “One child’s special needs should not overshadow another’s achievements and milestones.” This made me think back to a couple of weeks ago. Dominick turned 6 on January 31st and we had a birthday party for him the following weekend. However, because I didn’t bother to send out the invitations until a week before the party, only 1 of his friends showed up at the party. He didn’t seem to mind, and he had a blast with his one friend, but I’m sure at some point he thought about it and was a little sad. It was MY fault, but who would Dominick blame…me…or Lyra?

    I know this is just one experience/situation and ONE experience doesn’t make or break a relationship. I may be reading more into it, but at the very least, it’s been a wake-up call. I need to pay better attention to how I’m spending time with my children and how equally. I need to remind myself that I as I raise my children, I am laying the foundation for their evolving relationship as siblings and ask myself if I want that relationship to be positive or negative.

    Here are a couple of resources I found related to the subject of siblings of children with special needs:

    The Sibling Support Project


    Children with Disabilities: Understanding Sibling Issues



     

Add our Google Gadget to your iGoogle page
Add to Google
Powered by Community Server (Commercial Edition), by Telligent Systems