Biggest Cop Out Ever

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14 Responses

  1. mamacravings says:

    I’m not sure if this even counts, but my first thought was, “I wish my son’s pediatrician knew more about breastfeeding.” She never breastfed her 4 children and didn’t receive much professional training on it, even though she specializes in children. She regularly pushed formula on us, instead of respecting that I am a bf mom. I would never push bf on a mom that is ff. I just felt disrespected and jipped. I received a lot of questionable and sometimes even flat wrong advice from her on this topic.

    I know that it is impossible for professionals to know all about all, and I am really blessed with a wonderful lactation consultant. But I know if Eli’s doctor didn’t give off her misinformation as fact, I would probably be more apt to trust her on other “factual” advice.

  2. L Tryg says:

    Never tell a parent who has a child with a unique medical issue (severe overheating due to some atypical type of dysautonomia with many weird neurological symptoms, a condition that appeared to be life threatening from heat stroke with no one being able to tell us how to help our child…) that what they are describing it too implausible to be true so they must be mistaken. (Thank you Major Minasota Clinic neurologist.) If a desperate parent scrapes enough money together to fly across the US for answers, at least listen clearly and respectfully. I was told my child did not overheat, but rather simply had migraines. The vomiting and convulsions at school from severely overheating were not overheating but once again migraines. My son’s bright red face, migraines…At the end of the week they were shocked my child really did not sweat over most of his body and he was in fact overheating. At the end of the week they told me they were amazed I figured it out and they had never heard a parent describe their child so accurately. They had nothing to suggest beyond what we were doing. A doctor who listens carefully and is not afraid to say, “I don’t know” is an amazing resource. My pediatrician recently addressed my son’s school and was not afraid to say, “The way his body works defies logic, one just has to accept that is the way it works for him.” My child is 10 and we are seeing our 13th neurologist. She is very helpful not because she has the answers (Although it would be nice) but because she listens carefully and respectfully and is not afraid to say, “I don’t know.”

    • Heather says:

      L – Thanks for sharing your story. That’s so frustrating and I agree wholeheartedly that parents are experts and the medical community and families need to work together. I’m glad you found a neurologist to work well with. Also, you make a good point about how a diagnosis (or lack thereof) is life-changing and parents can quickly be draining their financial resources. Stay tuned for follow up.

  3. mommasylvia says:

    I have always wished that Doctors and other medical professionals knew more about severe behavior issues as manifested in individuals with autism, TBI, and mental illnesses. Kindness, understanding, being willing to bend the rules a little can go along way in making doctor visits more comfortable for such people. My daughter included!

  4. mommasylvia says:

    Oh, BTW- knock ’em dead, good luck and all that! It’s quite cool that you have been chosen for this task!! I’ll be looking forward to hearing all about it!

    • Heather says:

      Thanks! I really love the opportunity to share our story and make a difference. That’s why I want to have as much input as possible. You’re not the only one who has said it’s important to bend the rules; each child is unique. And you’re right, there is a level of behavioral education that needs to take place. When we went to Boston, we were in the office talking for a looooong time to the doc and Aidan’s chair was powered down. He was wonderful but I knew that had to be frustrating for him. Thanks for sharing this.

  5. Jenn says:

    Hello Heather, my name is Jenn and I am a PT student, I shadowed at SB PT this summer and had the pleasure of speaking with you and working with your son a few times. I have not worked a lot with children who have disabilities but I wanted to share an experience I had that was positive, because so often we only hear the negative. Two years ago I had to have an emergency appendectomy while I was up in Bangor for school (I’m from NY, family is in NY). All I had by my side were my roommates which I was very thankful for, however not having my mom nearby was really tough. The nursing staff/surgical staff were my “mom’s” sent from above. I could not have had a better experience going into and coming out of surgery. They sat on my bed and held me, they asked about my home life, walked me through the entire procedure, held my hand while I went under anesthesia and brought me more blankets than I probably needed when I was done. They really went out of their way to make sure I was as comfortable as I could be. Still to this day, that all meant more to me than they probably knew. This was probably all in a day’s work for them, but I was so thankful to have such a caring bunch of people taking care of me. Sometimes we don’t give credit where credit is due, and this was definitely a moment were they said and did the exact right things when needed.

  6. Beth Woolsey says:

    Wow. What a great question.

    I guess I’d want the medical world to know that it is relentless. All of it. Physically relentless. Emotionally relentless. Spiritually relentless. And so the medical professionals – and teachers – with whom we bond share a couple of traits. a) They give us really excellent information, treating us like full partners who are capable of understanding our kids’ complex challenges and working together as a team. And b) they gift us with hope. Teeny tiny bits of hope, sometimes, but hope. The doctors I’ve loved – and teachers – are the ones who remember to hold out a hand. A “good job, mama,” a “wow – you’re engaged,” a “we are going to take these steps together.”

  7. Michelle says:

    Hi Heather! One thing I would want medical staff to know is that my child is not deaf. Yes, she is autistic, but that doesn’t mean you can’t talk to her. I want medical staff to get to know HER, not just talk to us like she’s not in the room. She’s 13 now and can understand a lot, but even when she was small, I loved it when nurses would ask her questions or just chat with her. I would also want medical staff to ask US as parents what we need…to offer connections to support groups or social work services. We didn’t get any of that; only through talking with other parents did we find out about things like Katie Beckett and all those services. Good luck; Aidan is making a difference with learning situations just like this! 🙂 ~Michelle Koerner

  8. kristin says:

    This is great! Thankfully, we have been blessed with great nurses and dr’s who always have taken their time with Charlie Claire and our family. Good luck, can’t wait to hear about it!

  1. October 2, 2012

    […] Team Aidan Living in the new normal. Skip to content HomeBlog LoveEpilepsyFundraisingTraveling BearsAidan in the NewsAbout Us ← Biggest Cop Out Ever […]

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