This is from a post that I put up on the iVillage DS forum that I frequent. I'm hoping to get some input from all you moms of designer gene kiddos that might pop in here too.
Yesterday I took Braska to our pediatrician for her 12-month visit (at 14 months...due to my avoiding a bad nursing situation..the new nurse is great!). Whenever we go for these well-child visits, we get a little packet in an envelope that says "6 months" or "12 months" etc. It has a few pages of Milestones: What Your Child Should Be Doing with lists of things that Braska is, of course, *not* doing. It also has a few safety tips and such, but it's largely the milestones.
This isn't the first time I've received one, obviously, but each time before I wasn't sure what to say about what I was thinking about it. I kept thinking that it seemed flippant and almost insensitive to hand a sheet of milestones of development to a parent of a kid labeled as developmentally delayed. So this time, knowing it would happen, I'd been pondering what to say so as not to sound defensive and grouchy, but still needing to convey that for some parents, especially those who are still brand new to this life we now know, it might be just another layer of "guess what, your kid's behind."
I'm very aware of where she stands, as most of us are, probably even more so than many parents of "typical" kids. We have therapists and specialists and EI coordinators all keeping us abreast of how they're doing, what their strengths are and where they need work. I'm not heartbroken by looking at a list of 12-month milestones when I know she's not even close...that's good, as not so long ago I would have been. It's just that it seems like they would have some way to note a chart so that they wouldn't give the same cookie-cutter packet to us when so much of it doesn't really apply.
So I mentioned it to the doctor, he listened well and receptively, and said he appreciated it. He's in a hard spot because he's pretty new in this area and is still having staff issues, so it's hard to institute new things without staff support in a single physician practice. I understand that aspect because I'm a medical practice management consultant, and I work closely with others in this medical group as clients. I simply said I'd like them to discuss ways that they might be a bit more thoughtful about it, and he agreed and used the word "insensitive" in reference to handing the basic packet over. We see the DS clinic at St.Louis Children's regularly, so that's where we get our "real" DS info...the pediatrician is the only doc we keep locally, in case we need something right away. He pretty much defers all our care beyond the basic to the specialist team we have anyway.
Here's my question for you guys.... am I looking at this differently than you would? I'm wondering if you've had similar situations, and if maybe my background in patient care, medical office management and such things are making me more cognizant of this particular thing. He has asked me to help by submitting some ideas of what they could include, or if they should even skip all the milestone stuff and just discuss what's going on with the individual child specifically. What does your pediatrician give you for regular well-child visits? What would you want to receive or NOT want to receive?
Thanks for the help! When ya need to know, go to the moms!
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4 months ago