Dear Medical Professionals: Pardon me while I offer up some advice
By Alicia Harper
Next, this post is exceptionally appropriate considering I have spent more of my last two weeks sitting on hold on the phone with various resources, doctor's offices, insurance companies, etc. while playing Farmville on Facebook. Not exactly what I'd like to call a very productive way to spend a few hours...but that's been the jest of it!
In the midst of this, I have found my self increasingly frustrated with the negative optimism that is tied to my son's diagnosis of hydranencephaly... not to mention the millions of other rare conditions that exist in the world, some without even a name! Needless to say, I happened to stumble upon the following list online... and have offered up my own words in parenthesis after each point noted!
Dear Professionals: What Parents Want to Tell You
By Muriel Hykes, March 1999
1. Never predict the outcome for a specific case. You can give general advice, but caution that nobody can predict how this child will turn out.
(I am pretty certain that this definitely should be the very first and foremost. Am I, as a parent who has experienced the trauma of being told to take my child home and wait for him to die, the only person that realizes that this does not always happen as planned? Indeed I'm not... that's why so many believe in miracles, because they happen just despite what the "professionals" say! You can make the big bucks doc, but I'll continue to live the optimistic truth by realizing that every child is different and the textbooks don't describe every case.)
2. Do not write off a complaint as, "Goes with the syndrome." Just because a child has one diagnosis, does not mean that all his other problems are due to that.
(The words, "Considering his condition, that is to be expected," has surprisingly not quite yet become the trigger to turn me in to a homicidal maniac, but it's close! I am not in denial that my son has hydranencephaly, I know what it is and what it means for him.... probably more so than you, despite your formal medical license. However, I also know that his head cold and cough can be treated promptly... just as if he were any "typical" child... so I expect it to be, thank you very much!!)
3. Refer the parents to a parent-support group. This will save you a lot of questions as well.
(Not only does this save you a lot of questions, but it prevents frustrated parents such as myself, from thinking you are a complete moron... let us network with the ones that know the story best, other parents on the same or similar journey as ourselves.)
4. Be open. Realize that the parents are going to be looking for a cure and will pursue all avenues. Respect that. The parents are supposed to be the cheer-leaders.
(BE OPEN. If I ask about alternative treatments, or adding supplements to the diet to improve this, that, or something else... don't give me the impression that you think it is pointless. It is never pointless, and it is an alternative treatment because it has worked for some one out there, so who's to say that my 'lil man cannot join that group of someones that it works for?)
5. When the parents are depressed and in shock, you be the cheerleader. Find something good to say about the patient's development. Praise the parents.
(There is always something worth being grateful for. I know that I appreciate even the smallest little baby steps in development, as a giant leap compared to others... however, I feel that most parents with little ones who have extra special medical necessities would agree. Give us the truth, but point out something positive in the process... I know there has got to be SOMETHING there!)
6. Do not promote a therapy mindset. They should take time to enjoy the child as a child. And constant therapy appointments are no fun for the child either. Child first.
(This is exactly why I love Early Intervention services in the home, where I am taught to help my son myself... and not to fully rely upon therapists to do so. If you don't have early intervention involved, and you have a birth-3 year old... seek your local program out. Every state has one. I get to enjoy my little man, as much as I can... while helping him to reach his full potential, whatever that may be!)
7. Promote a team approach to the child's rehabilitation; practice "family-centered" care. Do not be surprised if other doctors have told the parents conflicting information or failed to tell them something. Coordinate care with all other team members.
(Please allow me to offer your contact information to everyone else, I would LOVE for you all to be on the same page as myself! Do not act as a single party in the treatment plan, but help to grow as a group of care providers in offering every opportunity imaginable.)
8. Understand that most parents are new to this... all the medical terms, conditions and stuff. So please go slow and be patient with us. But on the other hand, recognize that some of us are very well versed on our kids situation, and you need to address us as your peer in the treatment of our child.
(Nothing I despise more, than being withheld from information regarding my son under the misconception that I will not understand. If I don't understand, rest assured that I will very soon... just as soon as you explain it to me, that is why you're making the big bucks. On most occasions, I may know something you haven't learned... let me help you to help me, and to help others. I may not have that formal education, but I've got more life experiences than you could even begin to read about and take a test over!)
9. Most importantly, remember that your patients are little human beings who feel and hear, and do things just like other people. It just takes them a longer to achieve those goals. Be careful how you talk about them in front of them. Self-esteem, confidence, and acceptance major needs for everyone. Imagine what the child can become. Dream big.
(...YES! Don't assume, in my case, that since my son is missing a large portion of his cerebral cortex... the part of the brain that is deemed of most importance... that he just won't understand how you feel about him. No, he won't cooperate and interact with you if you don't interact with him, not because he can't but only because he doesn't want to. He is still a little person, he has a personality (contrary to popular belief). Be his friend, as well as his caregiver, and you will witness what I see everyday... the real picture of his condition.)