Wednesday, January 30, 2008

Hey DS Moms, Milestones question

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.
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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!

13 comments:

  1. This bothered me too... like you, not because I was unaware where my daughter stood developmentally, I am not, nor have I ever been, in denial, but MAN there is NO need to slap that paper in front of us! When we went in for Kennedy's 2 year well child we had just switched peds and the nurse, of course, handed me the packet. I had to fill this out and mark off which milestones she has reached. I ended up putting a HUGE "NO" through the whole page! LOL When the doctor came in and saw it she apologized all over the place and said that should NOT have been given to me! Now she has a Ds growth chart in Kennedy's file and I don't have to fill out anymore "milestone" papers! YAY! I love our ped!

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  2. As a mom of 6, as you know, I don't like the milestone charts even for "normal" kids (what's "normal"?) You and your sibs walked from 9 months to 13 months, talked at different ages, sat up at different ages, etc. Comparisons to other kids is frustrating for many moms and causes a bragging spirit in others, depending on which end of "normal" each child falls into. Braska does what Braska is supposed to do -- she is growing and improving and will continue to do so as long as you work with her and love her like you do. I'm glad you told her doc.
    Now YOU'RE the MOM :o)

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  3. I know I have a different perspective than you are asking for, but I HATED the milestone things as a mom, period. God gives you the mommy sense you need to know when something is "off" - you don't need a paper to accentuate what your child is "not doing"...I remember my first born son was so slow to talk - I was doing that parents as teachers program at the time and the gal made me feel so worried that he didn't have the right number of words in his vocabulary for his developmental age - I finally woke up and just dropped out of the program, it just caused anxiety (well, first I must admit I just lied to her and told her that my son spoke tons :-) Anyway, I guess I am rambling to just let you know that I think you did great - and it sounds like your ideas are making changes for the good, so great job RK! See, I would have just lied so I wouldn't rock the boat - not a good quality to cultivate :-)

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  4. I love the idea of your ped just talking about your specific child and how they are doing compared to the last time they came in. I thought this during the mommy mentoring program I was a part of. The little girl I had did not walk until she was 19 months old. There was nothing wrong with her, she just loved to crawl! But it was frustrating for the mom to hear everyone tell her what her child "should" be doing and her feeling frustrated and very worried about it. You are in a great position with all of the medical field experience that you have to really make a difference here. Good for you!

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  5. We got the 0-3 month charts when Georgia was born at our old pedi--. At the time, I didn't think about it because G was a few days old. Since then, we moved and we have a GREAT pediatrician (sadly we're leaving again). Their office specializes in the special needs community, but they also serve typical kids. We have not seen a single development chart and when they look at the growth charts they use both the DS and typical ones. I agree that getting the milestone charts would just be annoying and is insensitive. We DO know where our kids are...of course!

    I have come to the realization that a lot of what doctors tell you is in case you are among the people who really just DON'T HAVE A CLUE. They have a blanket policy so they don't leave anything out because SOME people really don't know what to do with/for their children. At least, that's the conclusion I've come to in all our hospital stays. It came to the point one time when I suggested to a doctor that he just level with us and tell us the specifics because everything was watered down. (A little off coarse, sorry.)

    Anyway. We get vaccine info and a children's book. The nurse comes in and says, "Does Georgia have this book already?" and we get to add to our library! Cool.

    But really, we don't need anything other than individualized attention. I think it's ok for a doctor, while s/he is talking to you to maybe have a list for his/her own reference, but as he checks off some of the things (s/he doesn't even have to ASK about some, but just OBSERVE) s/he should keep track for the next time you're in to refer back to.

    Sorry to take up so much space!

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  6. Delphine's ped has a son with DS, and I'm sure that plays a big part in how the office is run. We don't receive any packets or lists of developmental milestones when we visit.

    I'm glad that you spoke up to the doc and I hope he considers what you said.

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  7. I remember when Rylie was born always being bombarded w/ milestone charts by doctors visits, the mail(coupons from pampers)and even early intervention gave me milestone papers. Yes it did bother me! The pediatrician we go to now only gives us a paper w/ safety precautions for your childs age ie...don't leave your newborn on the couch unattended and don't let your 5 year old ride a bike without a helmet. Safety info is fine, developemental paperwork is not. If you want to know about milestones you can talk w/ your ped.

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  8. We get nothing but vaccine info if it's a visit with shots. We get safety info sometimes. That's it.

    You're not being unreasonable about this. I thought it highly odd that our EI program gives out a developmental milestone checklist at birth. I tossed it immediately.

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  9. I think you are absolutely right on for saying something. Maybe you are more aware of these things because you are in a related profession...or maybe you are more aware because you are a perceptive person. Whatever. What matters is that you said something, and that might make a difference for other parents, ones who are bothered by it but aren't able to articulate why.

    So, thank you.

    (This reminds me that on my to-do list is to write up for my OB all the things that were mishandled in the hospital when A. was born. The hospital basically caters to people who are having a fantastic time with their baby, and we were such total basket cases, reeling from the surprise diagnosis, they really didn't know how to deal with us. Hey, maybe we should write a handbook.)

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  10. Thanks for all the thoughts and info!! Feel free to talk it up with your other buds and let me know if you come up with anything else to think about when I'm trying to put together some info for the dr's office.

    Also, if you have any kind of chart or guidelines (broad as they may be) for DS milestones, send me a link or let me know where I can get it.

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  11. I know that I should make such a big deal of this but this is how I feel about it.
    I think those milestone papers are just frustrating to every mom and Dr.'s should get rid of them all together. Then if there is one particular thing that your Dr feels they need to talk to you about specifically dealing with your kids, that would be more appropriate. Just addressing your specific needs is best. I mean really, we are not paying them to tell us what someone elses kid can do. Just to tell us what is best for our kid. Seriously how much worse can those check-ups be? You bring your kids in all happy and you leave with a screaming kid (after shots), a sticker:-) and a peice of paper that tells you that you must be some how failing as a mother because you kid doesn't do everything on the list. You're doing great RK, it is time for a change!

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  12. RK- Thanks for such a great post.

    The BEST thing I have received for Ds milestones came as a calendar. We got to say when Tommy did achieve a milestone. I affixed the stickers to the dates that Tommy achieved developmental milestones. The stickers are adorable; "raised a hand with a toy in it", "reached for a toy"... The calendar is Ds specific and beautiful. It came with our 'welcome new baby' package from our local Ds.

    Our ped gives me one milestone packet for Liam at each visit (Tommy's twin that is typical) but not a milestone packet for Tommy. Our ped DOES give us incredible amounts of one-on-one time to discuss the flow chart tasks of 'who to see and when to see them'. Literally, he has a flow chart and we check off each thing: vision at 6 mos and then again at 2 yrs; hearing each 6 mos if failed originally, etc.

    I agree with you (and I think it was your mom's post), those milestone packets aren't the best measures even for typical kiddos.

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  13. It sounds like some of you have super great pediatricians, so be sure to tell them what they're doing right! And I love the calendar idea, Sandi!

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