I have decided to do this post - just so I can vent some of my frustration about this particular subject. So here it goes............
I wish someone would just say out loud .....to me......."Jenn, Joe has cerebral palsy." NO ONE HAS SAID IT TO ME! I mean........I am aware he does and Joe's therapy ladies and I have talked about it. It just annoys me that I take him to the Dr.'s and we do all this CP related treatment stuff, but no one has ever looked at me and said that he has CP. Why?
It's not that I want Joe to be labeled, besides it's not a label it's just a part of who he is. That's not a bad thing - no I'm not like happy he has CP - no one wants that for their child. I am not going to view it negatively though. I refuse too. We, as in our family and Joe, will carry on living a normal and happy life. We will do whatever we need to do for him. He will never be treated any different than anyone else in this family.
I just feel like no one wants to be the one who diagnoses him or tells me he has CP. Maybe they all assume I already know? I just want a Dr. to tell me that Joe has CP and these are the things we are going to do to help him along the way. In fact, Joe's OT is having problems with my health insurance because on the billing he is diagnosed as developmentally delayed. Which is a common diagnoses in the beginning for preemie babies. They need a reason to have therapy in order for insurance to cover the sessions. They are starting to not want to pay because it's like how long is he going to be developmentally delayed?? They want a diagnoses .......... a reason little Joe has therapy! We actually have to call the Dr.'s office and ask them to diagnose him so insurance doesn't have a problem covering the sessions.
I don't want this for Joe, like I said previously. No one would, but it is what it is - so lets own up to it and lets move forward with it. It's going to be fine - this does not define Joe, it's a part of him, but not his definition! It's not his label or our family's label.
So here I am saying it out loud............
Joe has cerebral palsy.
Picture taken by the lovely Janel Johnson at Janel Johnson Photography
Oh, Jennifer. I can feel you here.
ReplyDeleteMy Levi has CP; hemiplegic hypotensive CP to be exact. It's very mild, and the only time it was said out loud to me was by his Neurologist. We didn't have it entered into his formal records at the time. Instead we chose to treat the symptoms. He has other diagnosis as well; PDD, SPD, Global DD, CLD, to name a few.
The diagnosis of developmental Delay due to Prematurity should be enough for your insurance company to approve OT and PT services for him. The bigger fight will be when you switch to school-aged services, as they will look only at those abilities that affect his school performance. At that point you will become an even bigger advocate for your sons needs, as most of us have.
Hon, your son has CP. And that's okay. I admire you for embracing that, and understanding that there are things that will be ongoing, that you will be working to help him achieve his goals for a long time. I know the flipside of that, as my son's father shose to deny the diagnosis and try to pretend that he didn't have it...
Keep up the good work, momma! You are the best advocate for your son's needs!