Sunday, April 26, 2015

One Diagnosis, Two Diagnoses, Three Diagnoses, FOUR!

There is a point when you are sitting in a doctor's office, listening to them go over test results that makes you think that you what is afflicting your child is a amoeba of sorts. One diagnosis turns into two, then three and then four.. and it just keeps on going. Then finally the doctor will have to write down the list of things that need attention. I came to this realization when I was sitting at my son's IEP meeting last month and it hit me, as soon as they had changed his IEP from Autism to Multiple diagnoses. Seeing it there printed, floored me.

As most of us parents in the Autism Community know, there are several things that are put on the table when we get the Autism diagnosis. Things like Global Delay, Expressive and Receptive Speech Delay, Low muscle tone.. I could go on but you all understand what I am talking about. And with all of those comes the amount of services this person will need to help them along. Special Educations, OT,PT, Speech and Language and ABA. A lot of these are just within the Autism spectrum. Which makes Autism look like an amoeba of a diagnosis. So much to remember. So what happens when splits into more little amoebas? You have entered the realm of multiple diagnoses.

Our experiences are with a genetic disorder, while others might not be. Currently, it is a maze just to navigate through the different specialists that need to be seen. Not to mention the individual testing that each of those specialists want to do. Now the game just seems more complex. More ducks that need to lined up for things to happen. I often go back to when it was just simpler with just the Pediatric Developmental, ABA therapist and the Speech therapist. Now that our team has grown, I am somewhat lost without my whiteboard flow chart of doctors and specialists. How to see when and where to at what time. At the beginning of all this, I will admit that I was lost. Lost like the Land of the Lost, with the sleestaks and everything. But in the past couple of months, things started to come together, slowly, but they are getting there.

I am finding though, that multiple diagnoses throw our insurance for the same loop we first got thrown into. The current frustration is referrals. And for the insurance to try and keep up with amount of Doctors ordering things is like watching a toddler trying to do a 100 piece puzzle.  Trying to put what where and  what authorization code goes to who. As a parent, who just wants things to get done, so we can move on, it is extremely frustrating when people don't want to do the job they are supposed to do. I wasn't the one that took the course in insurance codes and accounting. I am just the person who has a loved one that needs medical care and attention. I can't tell you how many times I have been asked, "Well which diagnosis does he fall under?" Um.. Well.. All of them. I guess he won the lottery. But this isn't a pick one out of the hat kind of deal. This is a person. A breathing, functional person that requires just a little bit more attention than your average person. A person who just happens to have multiple things going on within in them.

To say that living with someone that has multiple things going on is easy would be a lie. Its a challenge and that is the truth. While my son is still young, trying to get him as much help as we possibly can, is our goal. We want him to be able to function as best he can when he hits adulthood, as he will be an adult with multiple diagnoses. An adult with multiple disabilities.

So even though it seems daunting right now when they are children, in the long run, what you are setting now, will benefit them when they are grown up. A system that will help them navigate through their multiple diagnoses.