When I've got some time, I'm going to write about the conference at which I spoke yesterday, which was an amazing and eye-opening experience, for Julie and me both but particularly for Schuyler.
Until then, however, I wanted to share something exceptional that I read this morning, a post on Jennifer Groneberg's blog. It seemed especially appropriate, given recent sobering events in the special needs community.
Among other things, it addresses fear, and does so in an unblinking way that really resonated with me. I am always happy to have the discussion about gentle terminology and inclusive language (which has come up again, not surprisingly), but this is a good example of exactly why I prefer direct language. Sometimes the monster is just plain scary, and calling it something besides a monster just doesn't do the job.
Thanks, Jennifer, for posting this.
10 comments:
Thanks for the link to this incredible post, Rob. What an amazing analogy -- looking directly at the sun! Yes, indeed. Those moments when I wonder where my 6 year old son would be now if his deafness had been diagnosed before age 2, if his hearing was "effortless," (which it never will be), if his spoken communication wasn't compromised and difficult to understand. And then that quick follow-up of emotion that reminds me that I would rather have my "broken" 6 year old than any other substitute because he is unique and wonderful, despite any disability or challenges, and he is, of course, mine.
Thanks for the post, Rob. Thanks too. . .in a round about way, this answers the request in my email last week. . .for some links to other blogs. Jennifer's has a whole list on hers. . . It looks like I have my reading cut out for me.
You're welcome! And it is a universal truth, isn't it...I thought J. did an excellent job articulating it.
That's an amazing letter. It also reminds me of how isolating it is to be the parent of a special needs child.
Thanks for the link to Jennifer's eloquent post. She describes so well that feeling of grief that lingers just under the surface 365/24/7 for those of us who have kids with disabilities. How easily that surface can be scratched or lacerated by hurtful remarks, missed milestones, heartbreaking regressions, medical crises. And from my experience I can say that a person's grief is not necessarily in proportion to the severity of the child's disabilty. Nor are adoptive parents who made a conscious choice to adopt a child with special needs immune from this experience of grief. It is bond we all share, but we all have our own private anguish.
That really hit home for me. Tuesday was a 1% day for us; my daughter had an injury that could have been a manifestation of a serious problem, and even though it ended well, it was hard to shrug off the reminder of danger that's always right around the corner for her. Everyone else around me feels like, well, it was all fine - but I'm still shaken. Still in 1% land.
For those of us not in the loop: You mention "recent events in the special needs community" and Jennifer indicates in a comment on her post that there was some significance to the day it was posted (something to the effect of "I had originally planned to post this today; I decided to continue with the plan anyway because it's appropriate"). Any links/info as to what that's about?
Any links/info as to what that's about?
Check my previous post.
Yeah, I saw that, but the days didn't match up (as far as Jennifer's comment about the significance of the 29th) so I thought it must have been something else (or more). I did eventually dig some more and finally discovered that the 29th was the day of Evan's service, which explains it.
Rob, your post and Jennifer's reminded me of an essay I wrote many years ago on my Geocities page, regarding grief in special needs adoption. I thought it might be of interest, especially given your feelings about "gentle language," so I've reposted it to my blog.
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