Monthly Archives: June 2013

I May Be Oversharing about My Special Needs Child, and That’s Okay

autismscrabbleI write about my children — in particular, my autistic child — on the Internet. I write about them and share my own experiences in raising them — for complete strangers to read. My joys, mistakes, successes, grief, guilt, self-doubt, and even those dark, middle-of-the-night moments of all-encompassing fear. I write about it all. That’s me. I’m a special needs parent blogger.

And there are some folks out there who take issue with it.

There are those who question the wisdom of sharing my child and my life with the whole world. On the surface, my actions seem unwise. Why would I “overshare” with the world? Why not just find real-life friends and support? Why do I put myself “out there”?

Well, just as the world isn’t an easy place to be for those with special needs, it often isn’t much kinder to their parents. A hundred years ago, parents of special needs children were likely to have larger families — sisters and brothers who helped with the daily needs of the family and home. Because people started their families earlier, there were often multiple generations able to help out. More aunts, uncles, cousins, and grandparents to call upon.

Yet, special needs families today aren’t usually so fortunate. Many of us are spread across the county — far from family. Many, due to the extended start of childbearing, no longer have the wisdom and comfort of our mothers, aunts, grandmothers, and other mothers who’ve made this journey before. We don’t all have the support of a church family or neighborhoods where we all know each others’ names.

So, special needs parents (and all parents really) find themselves adrift in a society in which, “How are you?” has no more meaning than “Hello.” We are isolated, with no one to tell us that we are doing it right, that we might try this, or that it isn’t our fault. Special needs parenting is a lonely journey for so many of us.

The Internet has changed that somewhat. In the last two years, I have interacted with thousands of other special needs parents. Those who are like me — just starting out and wondering if they are going to make it. Those a few years in — who share resources of what helped them not so long ago. Those whose children are grown — who reach out with a gentle pat and say, “Honey, you’re doing just fine. What you are feeling is normal. It’s gonna be okay.” All of them — all of them — sustain me and others like me. They are the community we need and cannot always find locally. They connect us and remind us of a basic human need — to know that we are not alone.

There are some who question the loyalty of a parent who would “violate her child’s trust” by exposing his needs and differences to the world. Why would I choose to share that which Continued at WhatToExpect.com…

A Most Extraordinary and Unexpected Gift

dear donor familyA most extraordinary and unexpected gift arrived in the mail today. Two letters from recipients of my dad’s donated tissues. Two people whose lives were enriched by increased mobility and a return to their normal lives from debilitating pain — one an RN who will soon return to her job.

Tissue donation doesn’t get the glamour treatment that organ donation does. But, for many, it returns them to having QUALITY of life. (Or vision, or healing from severe burns, etc.) Please consider it as a gift that you can give another one day. As Daddy put it, “Well, I won’t be needing them, so I might as well.” He would be pleased. I know I am.  🙂

There are several places you can register your wishes online.  I have included one below.  It is most important, however, to let your family know your wishes.  When in doubt, most hospitals will not override their wishes.  So this talk should be had now.  Also, know that you have the right to specify an organ/tissue recipient be offered your gift FIRST.  Here’s a great candidate in desperate need now:  Sarah Murnaghan. 

To give the gift of organ or tissue donation:    DonateLife.net