It all started one day as I was heading into work. I got a phone call from the facility and it was Joseph, there had been an incident. Joseph was on the phone making little sense of the situation. Joseph had said somehow he had gotten ahold of broken glass and in a moment of rage and frustration cut his wrists. Now he did not cut deep enough to require immediate medical attention but he said to me in a very serious and desperate plea " Mom I need help, I can't control myself." I spoke with the family teacher at the house telling him I felt Joseph needed to go to his psychiatrist for crisis evaluation. The family teacher understood my concerns and called the administrators. To my horror I received a call back 5 minutes later telling me the administrator stated " If he is calm now there is no need to take him for evaluation." I made the decision for my sons well being at the moment to leave work and drive 2 hours and pick him up to take him in myself.
We got to the hospital and Joseph was clam throughout the situation. His psychiatrist made an emergency appointment for him that friday for evaluation. I was to say the least upset at the way I was treated by the crisis staff and ER, I am certainly not ill informed when it comes to the care of my son and I was talked to like I had an IQ of 50. But that is neither here nor there I guess. I took Joseph back to our home and breathed a sigh of relief that his psychiatrist would be seeing him soon. The following day I felt Joey on edge, what was going on in his little mind was a mystery but soon it would all boil over.
That evening I told Joseph he needed to shower. He said to me he wouldn't until I had come in from outside. I walked into the house and simply said "ok I'm inside time to shower." That is when it all fell apart. It all happened so quickly I couldn't even tell you specifically what happened. He came around the kitchen counter and started pushing me, screaming and grunting. I tried to calm him but I could see he was already gone. He reached for things and began throwing items. I shielded max from the onslaught of items. I knew I wasn't going to be able to get control of thee situation so as I shuffled max into our bedroom and closed the door to keep him away from danger I called 911. Flashbacks of memories long since buried I tried to remain calm and explain the situation. Joseph got a hold of a sharp tweezer like object and ran at me. I was able to avoid injury but he was in full meltdown mode. Luckily Wayne was there and was able to get Joseph on the ground. The police arrived a moment later and as they walked in the home and wayne let go of Joey he took a swing at Wayne. The police handcuffed him and he began to calm down. Max had escaped from the bedroom at this point and ran up to where Joey was saying " ok? Joey, Joey ok?" It was depressing. I tried to the best of my ability to explain the complicated situation with Joseph and was very lucky to have an understanding officer. They transported Joseph to the hospital for evaluation and again life began complicated. With so many people involved, Marsh had to be notified and refused at that time to have him come home if he was discharged, CSB had to be called and because it was late we only get an on call caseworker and not the person we have worked with for almost 2 years, and of course the hospital and psychiatrists. What a mess but after several hours Joseph was admitted to the hospital. I couldn't believe we were back in the hospital! I knew it was the right choice but really at this point in treatment.
Four days he stayed and no changes to medication or word from the psychiatrist. He did however seem to be better for whatever thats worth. I thought its been several months since a big incident thats ok. We know things won't be smooth always but its over now and we can move forward. Of course this brought Joseph back in front of the courts again and the case will be held open again for monitoring but the worst had passed or at least I thought.
The next home visit was uneventful and all appeared to be returning to normal. It was going to be an exciting time for the family, Christian was home for the summer and everyone could finally be together. I thought all would be well but I should have known the circumstances that we put everyone together in was not going to turn out well and it didn't.
I was at work again at the end of my shift. My father had Joseph, Christian and max at his house, the first time Christian and Joey had seen each other in almost a year. I was getting ready to give report when I get a call. The first words I hear are " the police are here." My father proceeds to put the police officer on who tells me there is significant property damage and Joseph had pushed the 2 year old against the wall. I shut off... the officer kept talking but nothing was registering as I told the on coming nurse I had to go. After much time there were several variations of what happened but to the best of our ability here is as close as we will get to the truth. Joseph and Christian were walking back from the park together and Joseph had told Christian he liked his shoes and how it must be nice to get new stuff all the time. Christian responded by saying " I have been away from my family for 2 years and it's all your fault mother fucker." Probably not the best response but truthful in Christians mind. Well this very statement set forth a series of events that would change the course of treatment for Joseph. Joseph went into a rage, broke Christians headphones and mp3 player. My dad heard Christian screaming from the front of the house to come out and see Joseph in throws of storm that couldn't be stopped. Joseph screamed at max, took away his sippy cup and pushed him into the wall. Destroyed several items in the home. Christian was able to get max upstairs and into a room where he locked the door till all was safe. When I got to the house it looked as though a crazed person had torn the place apart. The officer on scene was the same we had dealt with the time before. Joseph was already in the police car and the trouble with so many involved was already becoming apparent. Joseph went to the hospital again only this time his psychiatrist didn't admit him. He went back to the facility that night. Again this put a chain of events into motion that left my head spinning.
The facility stated they were discharging him on the 25th of June regardless but there was obvious concern for safety given the last episode. Our options were to place him in another facility. After long meetings and much discussion I didn't feel this was what we should do. Our neurologist made it pretty clear that Joey's psych issues were secondary to his neurological disorder. Taking that in I don't feel that another psych facility was really going to do him any good and if anything it would simply cause more harm. I am very blessed to have the case worker and CASA that we have for our family who are on our side and agree. With that being said they have fought to extend Joey at Marsh for a brief time and are working to get him a respite worker for when he returns home.
I know that despite concerns I have I want Joseph back with us. I want to be able to take of him and continue to advocate. I am thinking we look into him seeing a psychiatrist at cincinnati childrens to coordinate care with his neurologist. I know that again I see him deteriorating cognitively. I think his decline became even more apparent to me after my mom came out. Seeing him through the eyes of someone who hasn't seen him in a year made my heart break all over. Our neurologist said in his last email that
" At this point the 3 main possibilities are
1. there is a progressive, degenerative condition that explains his problems
2. he started out with an undiagnosed genetic problem that is not progressive/degenerative but which makes him more like to have psychiatric symptoms over time AND more vulnerable as well to side effects from medications
3. he developed a problem in early childhood, which is as of yet undiagnosed, which caused some regression and then subsequently this makes him more like to have psychiatric symptoms over time AND more vulnerable as well to side effects from medications."
I know at this point all we can do is wait. Our CASA is looking into other options for treatment as well. I know I just want him home.
So sorry friend :( Have you asked your neuro about whole genome sequencing? I can only imagine how heart breaking these events are for you. Thanks for the update. I think of you often. XOXO
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