Thursday, September 27, 2012

Blog Call

Dorothea Lange: House Call, 1939
Farm Security Administration camp unit at Merrill, Oregon
The camp nurse introduces doctor to mother of sick baby.


The other day, I got the following comment on the post titled Gertrude Stein, IEPS, conservatorships and books:

Today I am unlurking myself to you. I have read your blog from start to finish over the last few weeks as I just discovered you via Grady Doctor. I am a fourth year medical student currently applying for residency in child neurology. I would LOVE to hear your advice for a new, naive, idealistic, hopefully soon to be resident about what you need from your doctor and how I can provide that to the parents and children I meet. (Next time you don't have anything to write about, a post in my honor?) J/k. Kind of. Anyhow. Thank you for sharing as I feel I have already learned much about Sophie and what must be many other special needs children like her. Children that I will hopefully be honored to meet and care for.
O.K. I don't know this person, but I love her already, and I hope she's reading this right now!

I love you already!

One of my secret wishes has always been to implement a requirement in medical schools and residency programs that the student spend a good two weeks or more with a family dealing with a child with a medical diagnosis and/or disability. I imagine that person sleeping on the couch and getting up in the night to observe the routines of the parents -- whether that is giving meds to a sleeping infant, suctioning a child, entertaining a child who decides to wake and stay awake at 2:00 in the morning, holding a child while she has a seizure and then sitting next to her for hours, making sure that she's still breathing, etc. I imagine the morning coming and the student continuing to observe -- like a fly on the proverbial wall -- as the family goes about their day, dealing with schools and insurance companies and doctors' visits, and siblings and marriage and everything else.  I believe there are programs like this out there - particularly in the area of diabetes and sickle cell anemia, but I wish that it were standardized because I believe it would give the student incomparable experience and truly affect how she deals with her patients and their families. I think it would not only impact "bedside manner" but also how the doctor makes decisions about treatment and care of the child.  But I digress --

I love the person who wrote the above comment even more for considering a residency in child neurology and have already replied that I hope she'll narrow that down to becoming an epileptologist (there's an incredible shortage of pediatric epileptologists). She'd get to deal with kids like Sophie and parents like ME -- lucky, lucky, lucky!

What I'd like to do in today's post is ask any of you parenting a child with a disability -- or not -- to answer her, share what you need from your doctor or what you wished you might have received from your doctor and perhaps some advice for this "new, naive, idealistic, hopefully soon-to-be resident."

Don't be shy! Here's your chance to influence and affect a new generation! I know that those of you who read here regularly have many different perspectives and experiences, so I hope you'll be candid. As a further incentive to answer, I'm going to either do a live strip tease on Skype or send you some virtual chocolate cupcakes. (Just making sure that you're paying attention)




54 comments:

  1. I am parenting a teen with severe Epilepsy and Autism. It has been a journey from.... the word I use depends on the day. I think you are wise and wonderful for even putting yourself out there. Doctors that have worked well with our family have many attributes but the one that really sticks out is humble. They really treat us like we know our daughter the best with their actions, comments and non judging attitude. I know alot of doctors say this that they know their kid the best but their actions don't show it. So really hearing what parents say, giving them ideas and back up plans. So you leave the office and more times than not the first plan didn't work or there were side effects so having back up plan is essential for us that are parenting really chronic kids. I also think that you have really good intuition with familes on how to communicate. My doctor is amazing... he has listened to me so well that when he comes in he has the back up plan already in place. He also acknowledges me and shows me respect. How does he do that? He asks for my ideas, what's worked. I feel we are really the team! I also feel getting to know the family and really understanding what they are going through and giving resources to help them in more ways than just the diagnosis. Like respite, siblings, having a life beyond the diagnosis.
    Also revel in the small successes and really LISTEN. If you listen you can learn no much. This goes for parents too. If we listen we hear alot too. Some great advice and suggestions and others not as much.
    I already love you too.. with just putting yourself out there you have my respect and I would guess you will be great at whatever you do!
    Thanks for asking! It means a lot.
    Jennifer- Mom to meghan 16!

    ReplyDelete
    Replies
    1. Thank you, Jennifer -- your work as an advocate has been so profound --

      Delete
    2. Thank you for sharing, I appreciate your comments, I truly do!

      Delete
  2. With your mind, your words, your truth, you are changing things, Elizabeth. You may not realize it, but you are and you will.

    ReplyDelete
    Replies
    1. Well, thank you, Ms. Moon. I might not realize that, but I sure do hope it!

      Delete
  3. Well, well well, kind Doctor. I applaud your willingness to bravely go where few doctors have gone before. It's a little place we like to call reality. Sorry for the snark, I do applaud you. Really I do. I want doctors who listen and get the fact that when I'm in his/her office with my severely disabled daughter for 25 minutes they do not understand my life or hers. They don't have to find a parking space that can accommodate her wheelchair, find space in a crowded elevator and find an outlet in the waiting room to plug in her suction machine. They don't know that I go home and lift her 80 lbs 20 times a day, change 10 diapers, catheterize and tube feed her and then have to do it all again the next day. They don't know about fighting insurance companies, schools, other services and the time and energy all of it takes. They don't know that I would do 100 times more than this if I were physically able because she is my child and even though it's a ton of work I should not have to justify her existence to anyone. at all. Ever. And especially not doctors. I want doctors to understand that saving a life means saving a LIFE -whatever that life is. I want them to read Elizabeth's blog over and over again until they get it as you seem to have. I want them to stand and cheer for my daughters amazing life, her amazing achievements, her amazing spirit without prompting. I want her to be valued as a human being. I want her to be judged by her character, and not by her disabilities. I want them to know we are all doing the absolute best we can in a very difficult situation and we do it proudly, even if a bit wearily. I want them all to want to reach out as you have. COngratulaitons. You will make an excellent doctor.

    ReplyDelete
    Replies
    1. Thank you, I think that Elizabeth is correct in that we should have some formalized training so that we can get a small glimpse of your "reality" because you are right, the 25 minutes in the office cannot do justice to what you must have to do every moment of every day., or even the ordeals you face in coming to the office. Thank you for your reminders of the work involved, but also the love. I appreciate your candid thoughts and kind works.

      Delete
  4. Hi! My son is four, and he has, among other things, epilepsy, hydrocephalus, a Chiari malformation, and mild developmental delays.

    What I need from my son's doctors is to remember that we don't expect you to fix our child, we just expect you to try. You're a doctor, not a miracle worker. Sometimes you can't just make everything better, and that's ok. We get it. Yeah, as a parent I'll get sad, or upset, or angry, but it's not at you. It's at the fact that my kid just got diagnosed with something new, or that I'm frustrated at not having answers, or that I'm scared because I don't know how we'll cope yet. That's ok. It's normal.
    Also that as a doctor you'll make treatment plans and give us options, but once we go home it's all on a consult basis. Parents are the ones implementing those plans, and doing it every day, and making it happen, and even something as simple as "take this medicine" or "I think your child would benefit from occupational therapy" can mean hours and days and weeks of phone calls, and advocacy, and letter writing, and wait lists. Please ask the parents if what you want them to do is even possible, because sometimes it's not. We want to help our kids, and we want to work with you to do that.
    Finally that... what I want our doctors, and you to know, is that you do this for a living, we do this for life. You're going to have a huge impact on the lives of many, many children, and their parents, and their families. You're going to be a big part of their lives. That's a great thing. Just remember that when it's tough, and things aren't going well that we're all in this together, and even if you feel like you're not able to help, you're helping us just by listening and just by being present.
    We'll be ok, together.

    Love love and best of luck
    Cassandra (Mommy)
    MiniT (4)
    PS. Thank you for your blog, Elizabeth. It's pretty awesome.

    ReplyDelete
    Replies
    1. Thank you so much for your wise words!

      Delete
    2. Thank you Cassandra for reading and replying, I am absorbing these words and I love the final sentiment, "we'll be okay, together", it says so much!

      Delete
  5. Also, I just spread this to my blog www.sfmaggie.blogspot.com. Perhaps a few more parents will weigh in.

    ReplyDelete
    Replies
    1. Going there now, thanks for spreading the word....

      Delete
  6. Dear to-be neurologist,
    I care for my son, now almost 27 years old. At age 12, he was involved in a near drowning and was underwater for 25 minutes. Basically, his basal ganglia were fried; this means non-verbal, non-ambulatory, quite spastic and has multiple contractures; had a g-tube for years. I have an inherent disdain for most doctors especially neurologists.
    I do not need tests,I do not need an explanation of what the basal ganglia do, I do not need to hear what my son cannot do, I never want to hear that he would or should be in a nursing home or residential setting. I do not need you to drug him up, give him medicines or implant devices in him. He is happy the way he is and I want him to be more comfortable in his body. I do not want you to use the words PT, ST, or OT; professions which employ the same arcane practices they used 100 years ago.
    I want you to speak eloquently about brain plasticity, about brain-computer connectivity, about appropriate assistive technology for communication. I want you to know more about cutting edge alternative therapies for spastic bodies than I do. I want you to speak about HBOT, cranial sacral therapy, Advanced Biomechanical Rehabilitation, Feldencrais. etc. I spend hours and days researching and experimenting, I expect you to know more than I do.
    I want you to available when I have a question by phone or by e-mail. I do not want my son in a hospital because that's where people really get sick. I never want you to question me when I have a concern and minimize my concern. If I ask for a treatment or a plan, I expect you to support me through whatever hoops I may need to jump. We need to be partners.
    Listen much, talk little, know more about that which works than I do... and never, never refer my son to an orthopedist...whose only skills are cutting and sewing. Be a real person and never hide behind professional boundaries.

    ReplyDelete
    Replies
    1. Phil, if you didn't scare the doctor first, you certainly educated her. Thank you, as always, for your strength and advocacy and honesty.

      Delete
  7. Yay, Yay, Yay! I love this community. Elizabeth, you are so awesome for this. And to that reader who came to this blog and then had the courage to delurk in the boldest of ways. . . . you are already a winner and I am proud of you.

    E, you are a gem. Jennifer, Maggie, Cassandra--thank you for taking the time to teach. All of you freakin' rock.

    Sincerely,

    Kimberly aka "gradydoctor"

    ReplyDelete
    Replies
    1. Thank YOU! I think I speak for many who wish that all doctors were like you!

      Delete
    2. Thank you Grady Doctor, it was you that led me to Elizabeth's blog! It means so much to be part of such a loving, encouraging and beautiful blog community.

      Delete
  8. Elizabeth, as I was reading this I was struck by how profound this dialogue between parents and curious doctors is. I'm thrilled that this doctor discovered you and I also think the dialogue needs a bigger forum...maybe if you turn it into more of an essay, put it on BlogHer?

    On a related but different note, as the mother of a child with severe behavioral issues, I would have appreciated less "Mother Blame," statements that my son's behaviors were due to his not being "securely attached" to me, and dopey suggestions about sticker charts and time-outs from $200-an-hour outpatient therapists who spent all of 50 minutes once a week walking my kid to Starbucks.

    ReplyDelete
    Replies
    1. Thanks, Pauline! I do so little with BlogHer of late -- took down all the ads and stopped posting there, so I'm not sure it's the place for this wonderful conversation. However, I hope that others will link to it -- I actually work on national healthcare improvement collaboratives and will certainly have my colleagues check out everything that you all are saying!

      Delete
  9. FOr me the biggest issue is communication. My son is severely autistic, non-verbal, with major behaviors issues. I would appreciate phone calls returned in a timely fashion. I would also appreciate having my concerns heard - and then have answers/thoughts explained.


    In all honesty,I am not sure what I want. SOmetimes I just want to feel like someone gets what it is like to never get enough sleep, get hit on a regular basis, work full time while also managing 5-6 therapists for my son, try to create some normalcy for my typical children and so on. I know doctors are busy but I would like to feel like someone else felt the weight of how hard it is to simply get from one day to the next

    ReplyDelete
    Replies
    1. Powerful words, Emma -- thank you for sharing them.

      Delete
  10. Going for the simple & practical: "Most kids with X [may] end up getting/needing/using Y" but most kids aren't MY kid & MY child isn't a goddamn statistic. Also, spend 5 minutes figuring out the language. I don't know why its acceptable to say 'deaf kid' or that a child IS autistic but if you say "Down's kid", I won't be returning to your office. Last, if you have to sneeze leave the room and wash your hands when you come back in. What doctor wouldn't practice basic hygiene, you ask? HA!

    ReplyDelete
    Replies
    1. Yes, it's amazing how even the simple things are disregarded! Thanks for your comment!

      Delete
  11. Wow. How amazing to get this email.

    I would say - to future docs. Be fierce in your search to understand the human body. But be humble inside your own mind and, especially in dealing with patients and families. Be open to alternative therapies. There is brilliance there as well as quackery, like any profession. Stay human. Take care of yourself. And if you can, visit or intern at this hospital. It is one of a kind. http://www.amritapuri.org/activity/healthcare/aims/

    ReplyDelete
    Replies
    1. You know I love this, Theresa -- and the word "fierce" is one of my favorites. Thanks for including the link, too.

      Delete
  12. Your idea is not only valid, it's GENIUS. This is the sort of thing that I wish the Gates Foundation would fund - medical initiatives in THIS country, too.
    Would this student read my book? Shall I offer her a free copy?
    xoxo

    ReplyDelete
    Replies
    1. Oh, YES! I think this kind doctor would love your book! I don't have any contact information for her, so hopefully, if she's reading she can reply to you here or order the book from my sidebar!!

      Delete
    2. I am here, I am reading all of the comments and taking it all in. Such love and caring and I am so honored that you have all posted your advice and experiences. Thank you Elizabeth for making this a post. If you want to contact me personally my email is spiceislandqueen at gmail dot com I can then reply and give you my address. I am always happy to read a book. Just another reason I SO love this blog.
      Thank you everyone and especially Elizabeth! Hugs.
      -spice island queen (aka Regina)

      Delete
  13. To your poster I would just say, stay the person who reached out to a mother and wanted to learn from her. I know my son's doctors, the 20 or so who follow him, may have gone to medical school with your wonderful attitude, but they lost it along the way. As long as you can bear to really care, you will be way ahead of the game. My son has had cancer, and now terrible seizures. So many things. He is only 3. I am wildly desperate to help him; he has suffered terribly. It is hard to want so much from doctors who often seem to want just to look away. The few who care, I am so grateful to them. Sometimes caring is actually all you can do, as I have learned, but the trick is that you can do it every time.

    ReplyDelete
    Replies
    1. Thanks Anne. To care, I hope and pray that I never forget to do that. I do think that many doctors still do and if that is lost along the way then I should no longer be allowed to be a doctor...
      On a more personal note, I hope that you surround yourself with those that do care. I don't have words to express how sorry or sad I am for your son and his so many things, at the tender young age of 3! Thinking of you and your son.

      Delete
  14. My experience is so very different, and nowhere near what many parents go through in caring for their kids, but we have had our own challenges.

    By asking this question, the commenter has shown she doesn't need my advice, which is: Stay current. Read the research. Remain open to other ideas and to the parents' intuitions. As you age, remember: the science changes, and one day (or many days) *it may prove you wrong*. That's okay, you're human. ADMIT and ACCEPT your humanity. Our diagnosis is Sensory Processing Disorder, which is not a recognized disability, and which "many respected neuropsychs DON'T BELIEVE EXISTS IN CHILDREN OVER AGE 7," regardless of the fact that practically every person with Autism has sensory processing challenges. Don't be that doctor who tells me our diagnosis is bullshit, when we live with it every day.

    Do listen. Do care. You obviously already do both...just keep it up. Ask, "How can I support you in x, y, and z?" And this goes for every doctor of every specialty: Know when to say, "I don't know...let's get another opinion."

    ReplyDelete
  15. Thank you dear doctor-to-be for seeking to understand a parent's perspective. To echo similar sentiments above, please try to always maintain that ideology. Do not succumb to the daily pressures of a hectic schedule. Please do not rush us through our appointment because you are overbooked. Many of us have driven a long way just to see you. Resist the urge to see more patients. Take more quality time to listen and work together with the ones you do see. Treat my child as if he were your own, giving him love, dignity and respect. Listen, be available and respect that a parent always knows their child best. Do not be afraid to get to know me and my family, knowing who we are and what we believe is important to designing the best treatment plan for us. And always remember to enjoy what you are doing! If you do it right, you will be inspired by the beautiful familes that you meet. Best of luck to you.

    ReplyDelete
    Replies
    1. The families are beautiful... I am so truly blessed that this will get to be my profession. Thank you!

      Delete
  16. That's all well and good, and the student's ambitions are lofty, but let's face it, s/he will never understand, never get it (hopefully she will never have a child with a disability). She can read our blogs (dare her to read mine), try to empathize, etc., but without living it, it cannot be comprehended. Even those closest to me, who know me and Pearlsky extraordinarily well, don't get a lot of the nuances, the pain, the kick in the gut.

    She asks what we "... need from your doctor and how I can provide that ..." the closest is work on your empathy, you seeing the world from OUR point of view, from our child's point of view.

    Will she EVER understand the conflict in our eyes when our kid is in an ICU? Ever know multiple nights of no sleep holding a seizing child? One's own seizing child?

    Yeah, live with us a while. Hell, come live with Pearlsky for a week (while I go to Saint-Tropez), I dare you. I double dog dare you. All expenses paid.

    And speaking of dares ... not only do I dare you, Elizabeth, I will get you a year's worth of meds ... um ... you know my Skype address ... ;)

    ReplyDelete
    Replies
    1. I see your point. I can "work on my empathy" and seek out opportunities to spend extended periods of time with children like Sophie and Pearlsky (what a beautiful name, btw) but I don't live it every day and so you are right. I can't truly "get it". But I can read your blogs and solicit advice and when I see patients try to be the best doctor possible, the one that SEES the patient for all of herself and just not what she cannot do. That is what I am striving for. Thank you for your candid response. I am happy to read your blog, and I am making my way through it now from the beginning... I'll comment there when I'm done.

      Delete
  17. How wonderful! We have a program through our Children's Hospital that actually does send residents to our house to watch, and learn outside of the hospital. We've had residents to our house 3 times now. And it's a great way for them to see Max when he's not sick, and how we do life in our home, on our terms, when we're in charge. ;)

    For the new doctor, I have just a few comments. In fact, some moms and I were talking about this just last night. We were talking about what we like in a doctor. We decided, we want you to be confident, even if you're wrong. Be confident enough to say you don't know what's going on, but you're going to do everything you can to help us figure it out. As my friend said, "We know that you received the 98% on your biology test, and wanted to know which answer you missed to not get the 100%. We're the ones who got a D in biology class and were happy we PASSED!"

    We want you to listen to us, and understand that we do know our children best. We want to learn about our sons and daughters. We're tired, we're overworked, and don't have enough help. Be gentle with your words, but don't think that means we can't take the bad news.

    Our children are not to be lumped into "all children". I will correct any intern, resident, attending any time they say "kids like this...or kids with this disease", My child is unique. He's the only one, he's not to be compared or lumped into a title of child with epilepsy, child with metabolic disease, child with special needs.

    You can't know what the future will hold. No need to say otherwise. Our kids will surprise you. Never think that a child who doesn't talk, has nothing to say.

    Take a moment to connect with your own community's epilepsy foundation, parent to parent network, regional center, or community center board for the disabled. When you give a diagnoses, be ready to point your patient's parents to a support group of some sort. You will have just given them some of the most devastating news of their lives. And we go home with a newly broken child, that we brought in perfect in our eyes. We need to talk to others who GET IT.

    ReplyDelete
    Replies
    1. Wow. This is good stuff. I just peaked at your blog and saw Max and the first grade segment, it brought tears to my eyes.

      As for the home visit, I will look into the Children's Hospital here to see if they have a similar program or can put me in touch with a willing family.

      And the local resources for parents, I will remember that. Thank you!

      Delete
  18. My advice would be to see my daughter as a feisty, beautiful person who is as deserving of respect as any other person. Treat her epilepsy (and brain tumors, and blindness and deafness), but try to see through those things to the person she is. Respect her (and by extension, me) and she will respect you.

    ReplyDelete
  19. When we walk into your office, (hopefully not three hours after the scheduled appointment time), please look my daughter in the eye, call her by her name and say "hello..". Comment on how nice she looks and include her in the conversation, even though she really can't talk that well. Please, please don't act like she's furniture in the room and that she doesn't know that you are talking about her.

    ReplyDelete
  20. I have a 22 year old son with severe autism. I have had a wonderful experience with his doctors. Things that help are that they don't make us wait in the waiting room, we get taken to a room right away; don't question why I need a letter to get a service and do it right away; ask how I am doing!; remember my other son during an appointment; once a nurse even came out to my van to give my son his flu shot because he was too upset to come inside the building! Little things like this make our lives a tiny bit easier.

    ReplyDelete
  21. Please, pretty please, do not look my child as a medical anomaly when you meet her. Please do not look at her chart and see multiple diagnoses such as: Down syndrome, stroke in utero, rare blood disorder, seizure disorder, leukemia, feeding tube etc and then look at me, a mother at 'advanced maternal age' and think to yourself or utter what has been uttered a few times to my face:" What were you thinking having a child in your forties."

    Please look at this child as a miracle, if you believe in such things. And if you don't believe in miracles at east look at her with wonderment and awe, that she has defied all medical prognoses placed upon her. Please see her has a human being with worth and value and with a plethora of lessons to be taught to those wiling to listen to her. Even though she lacks the words to speak them.

    Please, when you say, 'Mother's know their child best and we are 'partners' in this.", please mean that and know, that although I do not possess a medical degree, I fasted tracked it through the University of Learn Fast or be Lost, and I really do know a thing or two.

    Please realize that although you are probably hands down intellectually smarter then I, this is my child. A child 100% dependent on another human being, usually me, and at the end of the day, I live this 24/7 and it is neither an obligation nor a burden. I am honored to care for my daughter for she has not taken from the life I once envisioned having in my later years but on the contrary, she has gifted me beyond measure. Not just words spoken by a mother who has no choice. I have choices. Lots of them. And had a choice 5 and 1/2 years ago and I chose this life.

    Please know that more often then not, I appreciate what you do and have deep respect for those who lend not only their brilliance to this vocation, but who bring their heart to it as well. I see with crystal clarity, the ones who bring both.

    Please understand that without people like you, I know, that my daughter would not be here today and for all that you do, gratitude does usually accompany that giant chip on my shoulder that I walked into your office or hospital with. Promise.

    ReplyDelete
  22. I love that you took up the challenge, and so did all of these other people. I used to have a lovely internist who, on doing my first annual gynecology exam, told me that as a doctor doing his gyn training in Canada, he was asked by some of his female colleagues to get up on the exam table, put his feet in the stirrups and slide his butt down to the end of the table until he was certain he would fall off. Then he was asked to imagine himself completely naked - exposed. He was one of the most compassionate, funny, gentle docs I ever had. Nothing like that "walking a mile in their shoes" training.

    ReplyDelete
  23. Dear Future Neurologist,
    It sounds like you are going to be an amazing doctor, and your community will be very fortunate to have you. For what it's worth, I will share my wish for the work you will do. Please know that we, parents of patients, are not just moms and dads, but whole people with stories and experiences and fears and strengths and questions. Please remember, as I can tell that you will, that jumping to conclusions about people is not fair. I say this because the first neurologist I went to with my son told me the whole world is divided into only two types of people, types she can identify in everyone within a minute. I should have left before she finished that sentence, which showed me that despite many degrees, honors, and books, I could not trust her, but she had been highly recommended and had a fancy office and I'd already paid my copay, and so I stayed so long that she told me the following: she could "tell" I had breastfeeding issues, that my son only needed a rocking horse to stimulate his brain, that television can cause autism, and that my own history of seizures as a child caused me to worry irrationally about my son. That kind of talk does harm, so I hope you will be a role model for the other docs in your community, because it is clear you have a great many gifts to share. Thank you for all the good work I know that you will do.

    ReplyDelete
  24. Doctor! What a remarkable question. Here's my advice. 1) Whether in private practice, a medical group or a larger hospital setting, make sure your patients have access to an awesome "front of the house" staff. I don't need to wait with a wiggly, mysteriously genetically impaired, autistic 10-year-old to see you. And gee, having someone on staff with a razor sharp knowledge of the insurance biz to help and refer appropriately to specialists would be...well, miraculous. 2) Have a jolly attitude and a bouncer on staff to pin down children who need a shot or some sort. And have some candy around. 3) Don't ask mothers about what tests they had or didn't have during pregnancy, even if it is on the intake form. It makes most mothers irritable, one way or another. The horse, as they say, is out of the barn. 4) Get in the child's face and say HELLO! Years ago I had prominent Ear, Nose and Throat doc HUG my daughter goodbye after an exam! Afterwards I wept in the car with joy at his genuine affection for her. 5)I hope that you are a happy sort. Even the most well-adjusted, economically secure family, has dealt with (and/or are dealing with) pervasive, ongoing problems and fears. Having a positive, can-do, "let's try it" attitude is refreshing. Because well-adjusted, economically secure families with a neurologically challenged child are a rarity... 6) Once a month, make a house call to a regular patient. Don't tell me you can't manage it. You just did a million years of sleep-deprived medical school--you can manage a few hours a month to trek across town and see a child. I guarantee you will be enlightened. 7) Be broad-minded. Because when one is a hammer, everything looks like a nail. 8) Spend some time at a school with a disabled population. Reflect on it. 9) Have a rudimentary understanding of the political scene for the disabled and cast your vote. 10) Have the confidence to say, "I don't know." You are in the most mysterious of specialties and we all know it. Finally, I wish I could convey to you how much I appreciate BEING ASKED. No physician has ever asked me this question. My heartfelt thanks.

    ReplyDelete
  25. please read calvin's story—epilepsy and beyond: A mother's journal of the anguish, grief, joy and triumph shared with her son.

    http://www.calvinsstory.com

    thank you,
    christy shake
    calvin's mom

    ReplyDelete
  26. About 4 years ago I participated in a "Dear Future Physician" letter writing campaign initiated by a first year medical student. As the parent of a medically complex child, I shared my thoughts in my "Dear Future Physician" letter and from that letter I created a program called "Touchstones of Compassionate Care". Touchstones of Compassionate Care has been implemented at Johns Hopkins Children's Center, CHOC and as a teaching tool at several other Children's Hospitals across the country. I encourage you to go to the website, read my letter and listen to my message. Thank you for asking!

    Touchstones of Compassionate Care: www.touchstonesofcc.blogspot.com

    ReplyDelete
  27. I have a 17 year old daughter who began having episodes of status epileptus at 16 weeks of age and though her seizure frequency has inproved since she was a young child, she continues to have them and she also has been diagnosed with severe cognitive impairments and severe Autistic Disorder (meaning she's labeled "low functioning" on that big ole spectrum) .

    I agree with many of the others that open communication and empathy are key - i don't care so much how you treat ME, but treat my DAUGHTER like a person even if she is non-verbal, in a diaper, not making eye contact, drooling profusely and doesn't seem to understand. I have had great doctors and not so great. The not-so-great don't look at me, write notes during our entire session to save time, don't encourage me to communicate, offer no empathic responses. the best doctors explain what they are doing and why, write their reports after i leave not during, and act like human beings. At the end of the day i want someone who has expertise, but i also want someone with a bedside manner :).

    The fact that she is asking these questions means she's already destined to be great! :)

    ReplyDelete
  28. Dear Future Neurologist,

    I am an adult with epilepsy. I am a poet. I am a violinist. I write about being a poet and a violinist but I don't write or talk about the epilepsy much because I have found that when I mention it I am either treated like an invalid (meaning in-valid as well) or like a girl about to be pounced up by Salem witch hunters. My epilepsy is well under control now thanks to Better Living Through Chemistry but I still feel shame about it. I don't know what else to tell you except to keep going forward doing your good work and I wish you all the kindness you can find.

    Rebecca Loudon

    ReplyDelete
  29. I have a very simple request: accept Medicaid.

    ReplyDelete

LinkWithin

Related Posts Plugin for WordPress, Blogger...