Tuesday, March 04, 2008

The ups and downs of Down syndrome

Erin asks...

I have often wondered a parent's opinion on both the best things about raising a child with Down Syndrome and the worst things about raising a child with Down Syndrome. What's your opinion?

What a great question! Thank you for asking.

I really love and treat Maeve and Cecelia alike, and don't attempt to create different feelings for the girls separately. So initially I couldn't answer your question very well. But I've been thinking about it for the last couple days, and here's what I've come up with.

The rollar coast ride is the best part. I have always believed life was a rollar coaster, with lots of ups and downs. She has opened my world to a much larger, more exciting rollar coaster. One where we revel in the triumphs of everyday life, and reach new heights, then plunge to lows when we have struggles and setbacks. I honestly had very little interaction with people of disabilities my whole life. I projected my life expectations and values on everyone else, believing we essentially lived day to day the same way. I live in a much broader, more satisfying life now. It is so great when Maeve succeeds at tasks and skills that we work on. For example, lately she has been a super great eater with utensils. We have worked long and hard on this, and now she has become quite skilled with the spoon and fork. These are the best types of moments with a child with Down syndrome.

The tough times on our rollar coaster ride have been few so far. My heart aches when I see younger children (like Cecelia) pass Maeve in some of her skills and abilities. We work so hard to get Maeve to verbalize, solve puzzles, and play, and take great joy when she succeeds, but some of these tasks Cecelia and other typical kids grasp so easily, and naturally, we are sometimes surprised.

Take tonight, for example, and puzzles. I will sit with Maeve, and encourage her to put knob handled puzzle pieces in the correct spot, which she can often do. Cecelia does it with such ease though, and will come by when I'm working with Maeve, and "help" her. I so badly want Maeve to do it herself, and if Maeve gets frustrated, she will try to quit, and move on, Cecelia finishing the puzzle for her.

Thank you Erin for checking in with us... I hope that answer answered your question. If anyone else has a question about Down Syndrome, feel free to leave it in the comments, or email me at linkert@yahoo.com.

I have been working on post about the suicide bombers in Iraq last month, who were initially reported to have Down syndrome. But I have been struggling with it, I may never publish it. Just thought I would explain why I haven't published anything lately...

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