I Have a Degree in Special Needs Parenting

Thursday I went to the Maternal-Fetal specialist’s office, so we could get our weekly peek at the Twinkie’s brains.

It was the first time I had this particular ultrasound tech, and as she worked, I watched the ultrasound in progress, asked questions, and made sure that she told me any measurements she was able to get. After a while, she asks me, “so, what do you do–something in health care?” I resisted the urge to laugh and said no and she responded with, “well, you seem to know a lot about things.” Then I explained that my son had special needs and that it’s kind of like getting a crash-course in a wide variety of medical issues.

Later, the doctor came in, and I discussed my anemia with him a little more. It’s a little confusing, but I have two doctors–one for the babies, and one for me. This is the one who didn’t prescribe the iron pills, so when I mentioned that the other doctor had, he began this really long explanation about how my body should recuperate on its own, different types of anemia, and so on. Basically, he was defending why he hadn’t prescribed the pills himself.

I was doing my usual thing: prying, picking apart his answer, and asking for clarification and he finally chuckled and said, “you’re smart.”Β  The nurse immediately launched into it again, talking about how much I knew about the ultrasound and measurements.

I don’t know about you guys, but I think this is the way it is for a special needs parent. Sometime after having Charlie, I found that I couldn’t be satisfied by and article on Web MD. I don’t want to read “prognosis is generally poor.” I want to read the study, I want exact numbers, I want details. So when something was wrong with the Twinkies, I naturally did the exact same thing. I wasn’t satisfied with generalities, but wanted pure, unadulterated research. I even went so far as to download a PowerPoint presentation given to ultrasound students on how the measurement test works and what an appropriate reading is for every week of gestation. Yes, I get that involved.

So maybe I had to drop Botany in college.

And maybe my high school chemistry teacher called me “average.”

But if it’s medical knowledge needed to make good decisions for my family? I got that.

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Comments

  1. Oh yes, I can relate to that indeed!

  2. I think it’s great that you’re so proactive about things and don’t just take what the doctors or techs tell you as truth. I love that.

  3. I was the same way for my MCA Dopplers in my 2nd pregnancy… I once asked the tech why she picked a particular peak to measure the heartrate and not a different one, and she laughed. We got to be pretty friendly with our specialists after a while πŸ˜‰ you are not alone!

  4. Hahahahah! Amen Katy! I am right there, sister! Our epileptologist asked me where I got my medical degree! But we HAVE to be that way, if we are any kind of parents.

    • I’m sure some parents manage without being so freakin nit-picky about everything, but I’m just not capable of being like that.

  5. Sadly, that’s how we should all be about our medical care! But too often, we just settle for “doctor knows best.”

    • Charlie’s birth was a crash course on “Doctor doesn’t always no best.” I don’t think there’s any way I could get past the grand mistake that was his birth and truly trust a doctor again. If anything, I see more and more the holes in doctors and how thy operate.

  6. Can definitely relate.

  7. This happens to me at lot, too. I’m asked if I’m a nurse. Nope. But I always feel like I’m a few credits away from being an OT, PT, SLP, RN, MD, etc πŸ˜‰

    • Yes! I’m totally short some credits–I only know what I have to know to help Charlie–beyond that, I’m as clueless as the next person.

  8. After I delivered my 5th (w/ same Ob/Gyn) and was being discharged from the hospital, my doc waved goodbye and said “You should have been a dermatologist.” I still don’t know whether or not that was a compliment. Why not say “doctor?” Was it his way of saying that pretty women become dermtologists, or that the dumb doctors become dermatologists? LOL

    • It’s probably because you have that gorgeous skin, Claire!

      I do think it’s great that you have a doctor that you’ve trusted through that many children. I feel like I have a knack for not doing a very good job in that area. Even my husband has exclaimed over we seem to get the jackpot of clueless docs.

  9. I can relate. I’ver even considered writing on the paperwork before each appt. “will ask lots of questions” just to prepare the dr./nurse. After having kids like ours, its hard to go back to “dr. knows best”.

    • I don’t neccessarily have a lot of questions–sometimes I just go in knowing what I want and tell them once they’re in there. But since this doc is stuck with me as they work on the scans, I figure I’ll ask as many questions as I like.

    • You should! I do that when meeting with new doctors. If they aren’t cool with it, I don’t want to waste my time with them.

  10. Hellstotheyeah you got it. Great post Katy, as always.

  11. Abso-freaking-lutely. We have to educate ourselves, because we are our children’s advocates.

  12. Miriam McClure says:

    LOL….Yeah, I always have to insist for at least a double time slot and we still usually go over that…..The doctors like it, the appointment schedulers, not so much….HAHAHA πŸ˜›

    Oh yeah, and ER visits are always fun! I usually end up having to tell the nurses and doctors my theory and then they figure it out…. We’re on first names now…. πŸ˜›

    • They’re starting to recognize me at the local emergency room as well. Actually, one of the doctors was excited to see I was pregnant the last time we were there. I don’t always have a theory, but I usually have a gut feeling about whether or not it’s a “big deal” or not and they usually go with me on that.

  13. Here too. High Risk OB looked at me at our first appointment and said, “for someone who’s not in medicine, you know a heck of a lot of medical stuff” I suggested he look back at the chart again, and think about all the doctors I have to carry on intelligent conversations with. :)

    • It’s funny because my last pregnancy sound like a dream on paper. I generally have to explain that we’ve already been down the crazy medical road before.

  14. April Bailey says:

    Hey send me your email – have a cute story my mil sent me!. to long to post here!

    Thanks

    April
    Cabot, AR

  15. Yep, I totally get it.

  16. I once had one of Oia’s nurses ask me if I was a nurse myself. I wish I didn’t have to know so much. And what sucks is, my medical knowledge continues to grow with the next babe…. nothing gives.

    • Mo–I am hoping that something gives for you guys. Hoping that his is a bump in the road and that when baby is here they’ll see that she’s just fantastic. Hugs to you guys–medical land is truly no fun.

  17. Yup! That’s me too

  18. Totally get this! I have had doctors tell me the same thing and nurses mutter “I didn’t know that”.

  19. I can definitely relate! I have a rare genetic disorder myself and have spent the past 13 years researching as much as I can, such that I know more than most doctors. My baby also inherited this disorder from me. It’s really difficult to find a balance in asserting my needs or my son’s needs and not offending the doctor we’re working with. Some of my doctors and one of my son’s specialists appreciate the ability to have in-depth conversations, like your u/s tech did with you, and that’s great! However, there are just as many who seem really bothered by what I know, no matter how politely I try to handle the situation. How do all of you find that balance, when you realize you don’t know everything, you didn’t go to medical school, but you DO know some things and need to clarify or even correct something your child’s doctor has told you (short of finding another doctor, which isn’t always possible)?

    • I would love to know how other people answer this question. At this point, most of Charlie’s doctors are well-aware of my level of craziness and several go so far as to ask me my opinion on things. In your case, I’d probably show up with pertinent studies in hand, with the good stuff highlighted. If there’s one thing I’ve noticed about doctors, it’s that they love to learn and are usually open to medical info from reliable sources.

  20. I was talking with our ped/allergist (he’s board certified in both) about something that happened when we had to go to the ER for an allergic reaction. He told me that most people with an illness / disorder / disability will know more about their issue than most doctors do. The reason is we research and read everything we can get our hands on, we network with others that have gone through the same thing before us. I found that interesting that he was willing to admit that we parents may know more than the doctors when it comes to our children or ourselves.

  21. Oh yes, my husband works at the hospital where my twins (one with CP) were born and has done mountains of research into the studies behind the generalities. It’s amazing when you find what doctors conclude based on a study of nine self-selected people or something like that.

  22. I love reading your blog! It’s funny, I have been asked several times if I am in the healthcare field! NO, never wanted to be but learned a lot about central lines and dressing changes and ear infections and how to help a child put on weight nutritiously and no, I really don’t think it’ strep, here’s why… and how you should give a probiotic when on an antibiotic to avoid a yeast infection and how to research what is out there when you don’t like the “brush off” answers you get and… Guess I’ll stop, you know how it is!

  23. I love your blog! My mom sent a link today to me and I’ve found that my life relates to yours in a lot of ways. My daughter will be turning 2 this month and has lissencephaly which encompasses the tube feeding, seizure disorder, and many other problems. She has a website on caringbridge if you would like to check it out. I put the link on the website space of the post.

    I also have found that I have gained this degree. I always get asked during doctor visits if I’m a nurse. I know I could be without a doubt, but no I’m just a mom that knows all about her special little girl and have become very versed in medical terminology.

    Some people ask how do i do it? Keep on top of everything that she requires and all the changes. I find myself telling them, that I wasn’t aware that I had a choice to do anything but what I have and continue to do for her. I don’t see any other choice in the matter, but sadly I have seen other mother’s who don’t care like we do about our little ones. It breaks my heart to know that all special needs children don’t get the excellent care and love that we give our children.

    Can’t wait to read more of you blog and good luck with the new additions!