Wednesday, August 21, 2013

3 on the 21st - Down Syndrome blog hop

For the second time I'm going to link up with the Down Syndrome Blogs "3 on the 21st" blog hop.  We are supposed to share one truth, one tip, and one photo.  So here goes:
Truth: Parenting a child with Down Syndrome can be tough and discouraging.  On the medical front and on the educational front, if you aren't pushy and aggressive, your child may very well suffer.  The odds of the world are stacked in favor of extroverts.  Those of us who are introverts will never be able to feel confident that we have done everything we're supposed to do for our kids.  Sometimes things that are standard procedure/ basic human rights for everybody else will be seen as unnecessary luxuries for an individual with a cognitive disability.  It's not fair, and it will force us out of our comfort zones... but if we don't advocate for our kids, we can't count on anyone else doing it.  This was brought home for me in a personal way this week when I saw this news story about a woman with Down syndrome getting long-needed foot surgery so that she can dance again.  That story got me thinking about Tertia's feet, which slowly started becoming deformed with bunions sometime in that range from age 3-8, when I was super busy with baby Quarta and school and life in general, and totally burned out on doing anything beyond the basics.  Now she has orthotic inserts in her shoes, and I'm not sure if she will eventually need a similar surgery someday.  But whenever I look at her bare feet I feel a surge of wrenching mommy-guilt.  I really need to move on, but it's hard.
Tip: Make getting good medical care for your child a priority, even when you are shy or hesitant to do so.  A good pediatrician may not be able to answer every question that you have, but will be able to point you in the direction of the experts who can.  When I finally called Tertia's foot issues to her doctor's attention, we got set up with a foot and bone joint specialist, x-rays, and eventually specialized orthotic fittings pretty quickly.  Every new specialist is a little like another piece in the jigsaw puzzle, or learning a new word in a foreign language (I should know about that!) It's not nearly as intimidating as it might sound at first.  If it helps, take notes and make a detailed list of all the tasks you need to do and the questions you need to ask.  And let go of the guilt for not doing it earlier, because it doesn't help anyone.  I should know about that, too!
Playing in the waves of the Pacific Ocean in the sparkling late afternoon.  She is full of joy and loves to dance, and nothing is going to change that!


Walkersvillemom said...

Boy, can I relate to this post! Very well said. As a fellow introvert, it was one of the hardest and most important lessons I had to learn - how much we NEED specialists, and how hard it would be (in an HMO world) to get them sometimes.

I was lucky to find a good one early on - Dr. George Capone at Kennedy Krieger in Baltimore (I wrote about how he changed my attitude toward specialists here:

Funny how our kids help us to grow in ways we never expect.

garnet said...

Your children are very fortunate to have you as their parents.