Thursday, August 18, 2011

What Is It Really?

We have a sitter and are going to the Visitation set up for tonight. We couldn't manage the funeral because the kids would come home alone and we all know THAT wouldn't turn out well.

On a completely different note, I spoke with Michael's family therapist yesterday and it seems after our meeting last Friday, we are closer to all being on the same page. They were missing key information and I shared some things that made them look at the whole picture. Some of the confusion is that he mostly hallucinates at home. He rarely shares what he is seeing because he thinks they are real, unless they are scary ones. I have learned to read him and ask a lot of questions to figure out what is going on. They thought it must be PTSD flashbacks since it was happening at home. I had to explain that his meds are controlling his hallucinations and that they do reappear when he is under stress. He is stressed at home because home with his siblings trigger stress for him. He is only sharing with me because I ask the right questions. He would never offer it up to anyone unless he was frightened and looking to be reassured he is safe. Flashbacks should be exactly that, a flashback to the traumatic event. He sees things he has never seen, talks to people that say things he has never heard, he thinks things are completely different than other people around him do. He is not in our world sometimes. He has different players than we do. He is shocked and surprised and you can see it on his face. They are not flashbacks.

We also discussed that when you are surrounded by a certain disorder, you tend to see any symptoms familiar with that disorder as that disorder. They are surrounded by RAD and PTSD. They see his behaviors that relate to that more clearly and may miss the others. How could he not have it? He lived through a childhood with numerous foster families, all kinds of abuse, and severe neglect. The psychiatric hospital that sees my son when he is having scary commanding hallucinations because he is psychotic, sees Schizophrenia. Another doctor in the beginning saw PDD-NOS because he made no eye contact, wasn't social or able to read social cues, was delayed developmentally, and didn't play like other kids. Another felt his hypervigilance and lack of attention must mean ADHD. His speech therapist thinks his inability to process his thoughts is a speech disorder.

So who is right? I don't know. I know I see RAD, PTSD, BiPolar, MR, and Schizophrenia. I'm not a doctor. I do know my son. I know he wants so badly to be a good boy. He wants to be "normal". He wants to learn. He wants to feel love. He is terrified of being loved. He is tormented by the people and things he sees. He can't catch up in school and doesn't try because he feels hopeless. He was traumatized in his first family's home and thinks about it often. He sabotages himself. He is depressed and withdrawn because he can't connect with others. He becomes aggressive and violent when he is frustrated. He has a strong family history of mental illness. Does it matter what it is called? Does it matter if it is from trauma or a mental illness?

I go back and forth on that. Truly. Sometimes I need a name for it. I can put off all his difficult behaviors on that. It's not his fault. It makes it easier to accept it all. Other times I feel if we just figure out a way to make it better for him that it doesn't matter what it is is. Ask me tomorrow and I'll feel differently. It changes constantly. The only thing that hasn't changed is his symptoms. He is very disturbed and whether or not I have something to call it, he is miserable and struggling. The professionals can't agree or figure out what the Hell it is so how are we supposed to? He is the one suffering. All I want to do is make him feel better so he can grow up in our family feeling loved because he deserves at least that.


Kelly said...

So frustrating when we can't fix things for our kids. So sorry.

Paula Perry said...

Gosh, what a nightmare. I have to say that naming it might help treat it, but sometimes it's irrelevant what it's call it gets treated the same way. I've had my fair struggle with different illnesses one of which it took years to find out what it was. When they did I though great now I will be better.. Turns out they don't know how to cure it just treat the symptoms. So maybe that's all you can do. It sucks big time for you and for him but maybe maybe they can keep trying and are able to get some of the conditions under some sort of control. I am guessing that you are right in thinking he has multiple things wrong and they need to treat all of them.
Have you ever recorded his episodes on film and shown
it to the people helping him? Or to him?

Kristine said...

Your last paragraph so resonates with me. I am constantly struggling with needing a name for my son's disorder(s) and just trying to focus on what he needs to be happy.

As his mom I'm the only one (besides his dad) that sees the entire child. That makes it so difficult when every professional we deal with has a different idea of what is going on.

Talk to ten different doctors and you'll get 27 different opinions.