Medical Care Woes…

As a child of three children, one of the most important thing to me is their overall health. Emotional, physical, mental and spiritual strength is something I have spent years trying to maintain and develop. Not only in myself, but also in my minions. Also being a mom of a child with Autism, I feel the issue of physical health has been one of the most stressful aspects of having a child on the spectrum….and believe it or not, it is NOT because of my child’s needs or issues in general. Although challenging for sure, the poop journals, dietary tracking, medical fighting for tests, symptoms themselves etc…the most challenging aspect for me has always been (and still is) FINDING medical professionals who are not only well trained in the field of special needs, including Autism, but who actually care enough to dig past the symptoms to a root cause. For those of you unaware, an autism diagnosis is simply a diagnosis of a set of common symptoms. Many kids have various issues in addition to it. Not every medical issue is autism related so this is why I think it is so important for medical professionals to take more of an overall unified healthcare approach to medical care. Right now, my biggest referral service is Facebook, but I decided to branch out and try again with RIPIN this month. lol

This morning I reflected on my own childhood and remember the days when my doctor actually made home visits to my house. I know…I know…how old ARE you!? I’m younger than 41 and I will leave it at that…hahaha But, yes. I grew up during a time when my pediatrician was not only my doctor but also more like family. He could tell if I was losing a little too much weight just by looking at me that is how close patients were to their doctors back then (or least it was in my case). Even though I do not expect the home visits anymore, because in our day and age that would be kind of, well, creepy…I do still expect that level of care and concern. (I actually remember crying when I found out I was too old to continue with my beloved doctor because I was turning 17 and I trusted him so much.)

Before you peg me as a whining Autism parent though I, like any loving new mom, read all of the “What to expect when expecting” books, followed all the medical “recommendations,” and stayed on their vaccine schedules as I was told to do. However, after being in and out of the hospital in the first 2 years of my son’s life with multiple “bug” diagnoses and random fever reducer medicines given for chronic high fevers after vaccines, and several misdiagnoses & illnesses, the damage of the “specialist” approach to medical care hurt my son in the end and left me protecting my other two children from medical downfalls like a mother lioness in the wilderness…all while endlessly researching and studying online. I have researched so much on google, that I should probably work there in their analytical research department. 

My point? Not sure there is one. This is not one of my comedic posts. But, I guess my message is simply this. As great as it is that medical professionals now study their “specialties” like the heart, the kidney, neurology etc. in depth, I also think that it is important for medical professionals to understand and remember that although the human body is made up of many parts, it functions as a whole unit, and so should our medical care management. Fighting several different “specialists” when your life is on the line does nothing to maintain good health.

My journey with medicine and Autism has been LONG (14 years to be exact) and maybe one day I will share it, but right now, I just hope and pray that one day it is easier for parents of Autistic children to find well trained, AFFORDABLE, primary care physicians and specialists for our minions. This does not mean no medical professionals like this exist. There just isn’t a really good comprehensive way to get that information for where I live. I found a dentist recently with that said knowledge and did not even need to sedate my son for care, and trust me, that was a shocker! The weight that lifted off our lives is hard to explain (at least for his dental care) and I would like to see more of that in medical care for our children, teens and adults on the spectrum.

Perhaps if more doctors functioned like my said dentist (especially in Rhode Island), kids on the spectrum (as well as all of our kids for that matter) will have less misdiagnosed illnesses and overall better health. Especially against those illnesses or issues simply found from “persistent momma bears” like myself who go to five different doctors just for simple, curable situations. That happened to me actually where my son’s impacted colon was dismissed as “incurable autistic ‘stimming’, urge fighting, and simple constipation” for YEARS until a simple x-ray I asked for was finally done and an intense flush out required. I still shudder at the thought of how long he must have been uncomfortable with me shoving fiber into him. Not sure how it is in other states, but since I live in RI (happily so), my dream is to one day not have to travel to other states like MA or CT for medical care. It’s just a dream….but sometimes I have good ones. Besides, with God, all things are possible, right?


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