Thursday, December 11, 2008

I guess it's official

   JT's doctors have been using all of the words that mean Cerebral Palsy to me.  Every time I ask them straight out they dance around the subject saying things like, "Well, we put a lot of kids in that group.  Kids with all sorts of problems/abilities yadda yadda yadda..."  I am sure you guys can fill in the rest, but they NEVER answer me.  This has been going on for almost 2 months and through 5 doctors and therapists.  Finally we went to a new doctor at our new rehab.  I love her.  Anyway, I said something about CP and she said,  "Has someone told you he has CP?"  I looked all sheepish and admitted that no one had but no one would tell me either way.  She looked me straight in the eye and said, "Do you want to know?"  Well of course I do.  "Yes.  He most definitely does.  Are you okay with that?"  Yes.  I think I am...well, right at this moment I think I am.  Not that it changes anything.  It's a word, a diagnoses.  We are not changing our course of action, nothing about our ideas of his future really change...but it does SOUND scarier.  
  It really bothers me when doctors or therapists don't trust me to not freak out when they tell me things.  This last month it has happened a few times.  We met a new speech therapist who did his little tests and figured out where JT is in language.  He kept saying things like, "I would be crushed to find out my son was so far behind.  Are you sure you're okay?"  I was just thinking, "This isn't new news,  the other therapist told us he was at 12 months, you tell me he's at 10 1/2, it's not that different.  He is still my JT."  
   Maybe I am just not reacting yet.  Maybe they are right and I SHOULD be crushed and people SHOULD worry about telling me exactly what is going on because I will break under the pressure...but it doesn't feel like it.  Once a month, for a few days, I go nuts.  I am mad at everyone else for having "normal" kids with "normal" problems.  Those few days I am depressed and only think of myself and JT.  Then I figure out how to pull out of it and I only have a smattering of bad days for the rest of the month.  Normal?  I don't know.  But not telling a person that something is wrong with their child is certainly not helpful. 


Lori said...

I can totally understand your frustration. We didn't know about Jaylee's CP until she was almost 4. We knew she had balance issues and strength problems in her legs... but just figured that was part of the package with prematurity. Very nonchalantly our Pediatrician said one day something like "because of Jaylee's CP..." and I stopped her and said "uhh... no one ever told me that."

I agree, it's just a diagnosis. It doesn't change the type of therapy or the fact that your child is wonderful and the struggles are the same. But, it is very frustrating when you don't feel like you're getting the whole picture. Actually, since then, I've requested copies of the test scores, medical notes, etc taken at any of the NFP clinics, specialists offices and our Pediatricians office. At least there aren't any suprises and I'm on the same page as everyone else.

Good luck with everything!

Happy in Holland said...

I've been where you are. I think I am still there sometimes. I think, "yeah..I'm okay with everything. I least I think I am." Then I definately have those days where I get down because my child isn't like all the other kids around. But....he is still my child, and I still love him jus the same as I did before, probably even more. I'm sorry the doctors have all been so unhelpful. I'm glad you've got someone now that you can trust to not leave you in the dark about things. Keep up the good attitude but know that it is okay to have those "mad at the world" days. We all have them.

Anita Nap said...

I want to know too and I think doctors need to be straight with you. I know how frustrating it is. Marshall does not have CP but his Pediatrician is leaning towards thinking he has ADHD and some form of Autistic Spectrum Disorder.

I think you're normal for now freaking out. For me, just to have someone say, "Yes, you are right about those problems", it's a relief. For once I don't feel like I'm crazy. My family still thinks I'm wrong but they don't know Marshall the way I do. I know I have days when I wonder why I don't have a "normal" kid but then I look at my life and decide I'm happy with how it turned out anyway.
I'm rambling. I hope this makes sense. We're still trying to get a real answer from a doctor. I'm so sick of hearing, "He has sensory issues." THAT doesn't really get my anywhere.

Nancy Brown said...

I kept asking our Pediatrican ( who was also his neonatologist and we LOVED) her. He was still little and was still meeting his milestones. Until we moved to Arizona there was no talk of anything. I also got the brush off. His therapist keep telling me " you know he has CP right." No one would tell me ( the one who had the right degree) in fact no one has told us "what kind" we just know he has it.

One thing that we usually laugh about is that we don't like the word and the fact that it brings such conitations with it that we use a different name.

All in all as we still go on I never got mad about it. I think we are more aware of their shortcoming than others realize. Sometimes ( in my case) I can be even more critical then others.

Don't forget, we are all here for ya...

tiptoe mama said...

it's like the proverbial saying: "A rose by any other name is still a rose" (or whatever the saying is - you know what I mean)
We had a neuroligist tell us that MK might have CP. notice the lack of commitment to the diagnosis? We took it as a diagnosis though, and found that CP is really just a blanket term anyway.
cerebral meaning brain and palsy meaning movement. Any movement issues caused by the brain fall into that category. Anywhere from a normal seeming person who is just a bit clumsy all the way to the severe cases of those slumped over in wheelchairs with stiff hands who can't do anything, and everything in between. It's so broad a spectrum, the diagnosis doesn't seem to mean much. I wonder if that's why docs seem to shy away from saying out loud. weird though isn't it?
We've also had docs call it a 'movement disorder', which I like the sound of better, but we usually tell people CP because they've heard it before. When kids ask "What's wrong with her?" I just tell them she has CP. That means that she's smart. She knows what's going on, and she can understand you. She just can't move the way she wants to. Her muscles don't work right. --actually I usually explain it to adults that way too. like you say, she's still just my MK. She's the same little girl I love, and I will love her the same no matter what they call her issues.
I'd be ticked off though if I felt like the docs weren't being straight up with me.

Melissa said...

I am so sorry you have had such a rough time! I think that the cruelest thing you can do to a parent of a child with problems is to NOT be honest with them. Because it doesn't help anyone to not know what you are dealing with. Not that getting news like that is OK, but an informed parent is always better off. It's hard when you have to fight the system so much and go from place to place. But I am glad you are finally getting there with little JT and I hope you are doing alright as well!