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BellaOnline's Children with Special Needs Editor

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Asking More from Medical Professionals


It is often difficult to find a good local pediatrician or clinic for a child with a disability, chronic health condition, or other special needs.

Parents of newly diagnosed babies may be asking about the implications of their child's specific diagnosis from a doctor who heard only a few minutes mention of it during medical school and has had less actual experience with patients.

Even the strongest advocate-parent may not realize the importance of finding credible resources to share with their doctor so that a well trained physician can become an actual expert on the topic.

For parents whose children have a condition or health problem that is new to the family, it may be helpful to seek out an adult with the same diagnosis to learn more about their children's healthcare needs.

Knowing what health care procedures to avoid as well as what to seek can sometimes make all the difference. Another serious consideration is how comfortably staff and doctors relate to the child during medical visits, exams and discussions.

When we take our children in to their medical appointments, we are teaching them how to be lifelong advocates for themselves. Staff who do not treat babies and children with respect, consideration and kindness teach them to expect very little from alternate caregivers.

Like other adults who will meet and get to know your children, medical professionals can take cues from a parent. It's often helpful if you take the time to explain what is going on, apologize or use gentle humor to ease or distract them from the stressful part of the examination, and include them when you are talking with their doctor.

Only one in ten doctors graduate in the top ten percent of their class. It could be that it is easier and of greater benefit to your child to establish a relationship with a good doctor and provide them with up to date information about your child's condition than to trust in a medical professional who seems to have the reputation of having 'many patients' with your child's condition.

A doctor who knows your child as an individual is much more likely to attribute uncharacteristic behaviors or other symptoms to an additional developing medical condition. Families of children who do have or will develop a dual diagnosis need medical professionals who will listen to their concerns and observations. That in itself can save a child's life.

Following all the recommendations that healthcare advocates advise for mainstream patients works well for children with disabilities. Any 'red flag' that they mention can be doubly important to notice in medical staff for a child with special needs.

It's well worth the trouble to find a great doctor or clinic so that our children get adequate care from the start and medical staff can build a relationship with each child that will lead to greater health benefits as they grow up.

Browse at your local bookstore or library, or online retailers for books about how to talk to your child's doctor; how to prepare children for medical procedures; and preparing them for dental visits.
Doctors' Ignorance Stands In The Way Of Care For The Disabled
http://www.npr.org/blogs/health/2014/05/17/313015089/doctors-ignorance-stands-in-the-way-of-care-for-the-disabled

Breaking Up With Doctor Normal
http://starinhereye.wordpress.com/2014/01/05/breaking-up-with-doctor-normal/

The Steps to Changing Pediatricians - Julia Roberts
http://supportforspecialneeds.com/2012/04/04/the-steps-to-changing-pediatricians/

A.A.P. Emergency Info Form PDF - Children with Special Health Care Needs
http://bit.ly/9sBU5D

Disability and Discrimination at the Doctorís Office
http://well.blogs.nytimes.com/2013/05/23/disability-and-discrimination-at-the-doctors-office/

Patient Advocacy for Children in Hospitals
http://www.bellaonline.com/articles/art66329.asp

Pain Relief for Childhood Blood Draws, Injections or IV Lines
http://www.bellaonline.com/articles/art51944.asp

Pain Management for Children
http://www.bellaonline.com/articles/art51895.asp

Type One Diabetes - Juvenile Diabetes, Childhood Onset T1D
http://www.bellaonline.com/articles/art32541.asp

Disability Advocacy and Awareness
http://www.bellaonline.com/articles/art9507.asp

Who is the Expert about Your Disability/Condition?
http://www.bbc.co.uk/blogs/ouch/200803/being_the_expert_of_your_disab.html

A still-grieving sister explains how her brother with Down syndrome was betrayed by the medical community - Daily Mail
http://tinyurl.com/4hfdyz

Jokes, Jesus, and Being Afraid
http://www.bbc.co.uk/blogs/ouch/200709/jokes_jesus_and_being_afraid.shtml

Teens with Disabilities - Transition to Adulthood

Also see:
Father's First Steps: 25 Things Every New Dad Should Know, Mental Wellness in Teens and Adults with Down Syndrome - A Guide to Emotional and Behavioral Strengths and Challenges

Diabetes Care in the Hospital: It Ainít Pretty
http://www.diabetesmine.com/2013/06/diabetes-care-in-the-hospital-it-aint-pretty.html

Down Wit Dat - Medical Appointments, A Sleep Study: What a Long Strange Trip It's Been
http://downwitdat.blogspot.com/2012/05/what-long-strange-trip-its-been.html

Rick Santorum's Babies and "Obamacare"
http://roanandlula.blogspot.com/2012/03/rick-santorums-babies.html

What happens when an OB/GYN snarks a patient on Facebook
http://www.xojane.com/issues/ob-gyn-snarks-about-patient-on-facebook

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Patient Advocacy for Children in Hospitals
Welcoming Babies with Down Syndrome
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Content copyright © 2014 by Pamela Wilson. All rights reserved.
This content was written by Pamela Wilson. If you wish to use this content in any manner, you need written permission. Contact Pamela Wilson for details.

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