Reflecting & Hoping

 It has been one hell of a year.

I realized I haven't taken a single moment in all this time to really reflect on what I've been through. I just dealt with it.
   We had a meeting with a new school, we talked about putting Cole and Chloe back in public school. Aiden will start next year too. I left hopeful, that the kids could return to school, Cole could be in a regular classroom (with supports, of course) and Aiden could start his kindergarten year with his friends.

We might actually be able to return to some semblance of "normal."

  For some reason that realization just opened the flood gates. I felt overjoyed, drained, and emotional. I came home from that meeting exhausted. A giant weight had been lifted, but the fatigue of carrying it for so long hit me hard. I laid down and slept. I slept for fourteen hours.

  Almost a year ago Cole was inpatient at a psychiatric facility for children. He spent fifteen days being evaluated by doctors, therapists, and social workers. I was told he was acutely psychotic and likely Schizophrenic. They don't typically diagnose children with Schizophrenia so we got an even more ambiguous label: Psychosis-NOS (not otherwise specified). The psychiatrist overseeing Cole's case said he was unusual, complex, and  unlike any patient he'd seen. He wasn't solid on anything, there didn't seem to be a name for what was attacking my son's mind.

 I worried about Aiden and Chloe. Could Cole be dangerous? I worried about my unborn baby, I didn't know what kind of home life she would be brought into. Chloe and Aiden still needed me, I wanted to be there for them and so I couldn't spend every moment at the hospital. I felt torn. Part of me felt glad that Chloe and Aiden would get a taste of "normal family life." The other part of me felt terrible for feeling that way.

  We got reports everyday that he was paranoid, agitated, and experiencing auditory hallucinations. Every time we gave the go ahead to increase the powerful anti-psychotics they were giving him. I felt like I was killing him. I felt like it was a choice between poisoning his body or letting him lose his mind. I am not unfamiliar with the devastation Schizophrenia can cause. To leave it unchecked would be a death sentence.

 Then he developed EPS as a side effect of the medications they were giving him.  They told me when I came to visit him that I could not see him because of the state he was in. There was no way in hell my child was going to go through that without his mother. I demanded to see him and they nurse eventually led me to his room.
  There I saw him, his head and face pulled to one side and his body seemed rigid. He was crying, in the dark, alone. The nurse informed me that they had given him sedatives but he was "fighting them" and "wouldn't calm down." I sat with him and stroked his hair and sang to him. When he drifted off into a fitful sleep, I cried. The pain of seeing him like that, knowing that this could be what he was facing for the rest of his life was too much. I felt hopeless.

 When he was released he didn't seem to have improved very much. The medication had taken the "edge off" but even the day of his release he was described as being "extremely anxious." Insurance was done paying so they were done treating. We took him home.

 Two weeks later he had a follow-up with a new psychiatrist. I had really become jaded when it came to the mental health profession, so I wasn't expecting much. The doctor seemed very straight forward if not a bit detached. He asked a lot of questions and typed vigorously on his computer as we answered. I was annoyed, I felt like he wasn't really paying attention. As we were wrapping up he said in his very even, matter of fact, tone "Mrs. Patterson, I do not believe your son is psychotic. I know I have only met him once so I am reserving my judgement for now, but I believe your son has Obsessive Compulsive Disorder."

"Yeah, right." was all I could think. I have OCD and I felt like I would recognize it in my own child. I am not one to ever dismiss anything and so I started to research OCD in children. Some of it fit, he was extreme, but it did fit. There might be hope after all.

 Now, let me get this straight, no parent wishes any illness on their child but if you were told your child had a progressive tumor in their brain you would be devastated, you would hope it was treatable. Being told your child has Schizophrenia is like being told your child has an inoperable tumor, the prognosis is guarded and there isn't much doctors can do but medicate. Being told Cole had OCD was like being told this tumor is operable, it's treatable and there's hope for recovery.

 He ended up being hospitalized again, for another fifteen days before finally receiving a definitive diagnosis of OCD. That hospitalization was the worst for me emotionally. The hospital was a state hospital two hours away and it embodied everything people fear and associate with a 1950's asylum. I wanted him out and taken to another hospital in Charlotte. They refused and a battle ensued. I got a lawyer, filed complaints about the inappropriate conduct of the staff and the terrible conditions at the hospital (the A/C was broken in the middle of June). I was terrified I had somehow lost my son to the system. It was like a horror movie. I was stripped of my right to make medical decisions for my own child. Cole was kept past the 24 hour observation period allowed by the state and they have yet to produce the required affidavits to show the need to keep him longer. They saw two types of insurance and payment in-full for every day they kept my son. They saw dollar signs. It's a battle I am still fighting. To make sure his continued stay wouldn't benefit them monetarily, I retracted the documents I signed granting them permission to bill insurance. Without the ability to bill my insurance, the bill was left for me to pay. I told them I would never pay it. They'd have to transfer him or provide the services for free. They chose the latter. I spent every single day of those fifteen days wrought with anxiety. I still had two children to care for, so I shoved it aside. Stealing quiet moments when the kids were at school to fall apart.

The only good thing that came out of the debacle was a much less devastating diagnosis of OCD and no more terrifyingly strong medications. I had a place to start, something I could do. Cognitive Behavioral Therapy. Intensively.

The months that followed were trying. There were frequent meltdowns, Cole couldn't function well at school and the principal didn't feel they could provide enough support for him at her school. He was transferred to a school and put in a class where he was threatened and assaulted. Meanwhile, Chloe's teacher couldn't wrap her head around the concept of ADD (repeatedly sending "concerned emails" about Chloe being distracted) and even had the audacity to ask "Is something going on at home?" I just had to shake my head. It was like they expected me to somehow prevent this upheaval going on at home from affecting Chloe's school performance. They stopped short of actually providing HER with extra supports or free school based therapy, though.

Then it culminated in the decision to homeschool. Literally days after giving birth I was faced with having to find a curriculum and teach third grade. It was that or risk my son's safety while I battled the school district. I was so tired of fighting.

 So I homeschooled and worked on doing exposures and CBT therapy every day. Cole went through several therapists before he got the one he is with now. She is truly a god send. With her help he slowly started to progress. Chloe started to progress too, she focused on learning the skills to deal with her ADD. I felt like a round the clock therapist. Everyday felt like climbing a mountain, and I longed for the "normal" mom duties, like baking cookies or attending PTO meetings. I felt awful sending Aiden to school while I poured so much effort into Cole and Chloe. I tried to bounce back and forth between teaching and caring for Autumn. I felt bitter about not having the first few weeks to spend just cuddling my newborn. It just wasn't supposed to be this way.

 It was a lot of pressure. It was like spending a year in a pressure cooker.

 Today Cole still has OCD and it creeps up sometimes, but he handles it. He is the strongest kid I know. Even at the hospital the staff told me they loved Cole. His therapist says she wants to try so hard for him because he really gives it his all. He wants to fight, improve, and live a happy life. Despite the extraordinary difficulty he has been through he is not the least bit bitter. He takes it all in stride. He has incredible insight and intelligence.

 What means the most to me though, is that I see him smile and joke a lot more now. I see him planning on swimming this summer (something he wouldn't do last summer because his OCD left him terrified he might make others sick by getting in the water with them.) I see him getting stronger than the illness. I see that he is ready to make steps towards a future that a year ago I was told he didn't have.

Starting back to school is a step in this direction.

Chloe and Aiden get to make a step too, they get a chance to live outside the shadow of their brother's struggles. I have a lot of work to do to make up for the time they were cheated out of because of OCD.
 Autumn might get the chance to sit on my knee and wave "bye, bye" as her brother's and sisters board the bus for school and then be mommy's baby for a little while. It seems so simple, but it would be so wonderful.

 I am cautiously optimistic that things are going to be ok. That we won't be held hostage by severe mental illness any longer. Maybe, just maybe, we have won.