The rhetorical question...

So…. On Friday we headed back down to Cincinnati Children’s for an emergency appointment with Joseph’s psychiatrist. Joseph has decompensated so much again I found myself in familiar but uncomfortable surroundings. We began explaining Joseph’s steady decline which has been followed by a cliff dive off the edge. We go through the events of the past several months, the current situation, followed by our observations on how he is functioning and it all seems pretty bleak. Somewhere in the middle of the emotional vomit I am conveying to the physician I stop. I stop and say to him, “I don’t even know why we are here; I don’t even know what you are really going to be able to do about any of this.” I said that not because I don’t have faith in his abilities as a clinician, because quite frankly he is fantastic, but more or less this isn’t a true psychiatric problem. I wish it were as simple as tweak a few medications and poof he would stabilize but as many of you may know it just doesn’t work that way with Joseph. He is complicated and complex, and honestly doesn’t have a “chemical imbalance” that needs corrected. The poor doctor just looked for a minute and paused before simply saying, “We can work to try and slow some of the symptoms but Joseph will always need strict constant structure because his cognitive problems do not allow him to process through situations and interactions like others.” My ability to stay composed after this was nonexistent. I mean what he said I knew, this is not news to me. But, I guess in even the smallest recesses of my brain I had hoped there would be some level of functioning that will allow him to be independent. There still may be… but the glimmer of hope has shrunk yet again. Without knowing if anything will help we did adjust Joseph’s medications….Hoping that this would even things out. I left the appointment with a sinking feeling in my stomach that we were headed down a path we have already been on. Try this med, oh that’s not working, well let’s add this, increase that… I know I won’t let it get to where we were before but as a parent you are just so desperate to help your child you would do anything at the chance it could help. Only time will tell…. Meanwhile there is the never ending battle with his school. In preparation we had an appointment again at Cincinnati Children’s with the clinical psychologist to do his three year testing. An hour and forty-five minutes in the car to meet with this person. We came prepared as always with a book of information that is the condensed version of his medical and school records. We began the appointment providing information and expressing our needs for testing and concerns. Toward the end of the appointment the clinician looked dumbfounded and she proceeded to say “I think a neuropsychologist would be best equipped to provide the testing to Joseph, I’ll make the referral.” Great. Where I totally agree he would most likely benefit from that particular type of clinician testing him all I could think is… we don’t have time for this! Another referral, another insurance battle, another appointment scheduled months in the future. Luckily, one bit of cosmic intervention occurred and I received a phone call today for Joseph’s referral. We have an appointment tomorrow. To top off that day off splendidness I received a digital download of Joseph’s medical records from Cincinnati. I don’t know what compelled me to think that it would have been a good idea to review them now but nevertheless I did. .. 9/2013: The treatment team concluded Joey's outbursts arise from significant cognitive deficits for affect laden issues requiring a multidisciplinary approach with a specific and individualized plan for Joey. He appears to be of below average intelligence with fair recent and remote memory without ability to recall details. Despite Joey having a biologic predisposition for mental illness based on his family history, his current difficulties are most likely secondary to his neurocognitive/neuropsychological deficits well documented in prior neuropsychological testing. The end result of these deficits are severe behavioral disturbances due to his developmental disabilities which are characterized by severe neuropsychological deficits. From a psychosocial and educational standpoint, Joey would benefit from multiple services to help him navigate daily activities of living successfully. Without interventions developed specifically for Joey's needs, his deficits will continue to disrupt daily life (both at home and outside the home), and his ability to learn. 10/2013: Information regarding Joseph's cognitive functioning suggests he meets DSM-5 diagnostic criteria for an Intellectual Disability, Moderate. Information obtained through chart review reveals Joseph is having significant difficulties with emotional and behavioral functioning that, may in part, be attributed to his Moderate Intellectual Disability 11/2013: In addition, his cognitive limitations per neuropsychological testing limit his ability to navigate daily life as he may often misinterpret cues from others or know how to navigate problems in a successful and sequential pattern leading to outbursts of aggression. Is anyone else seeing a pattern here? I could go on but I am sure you get the point. The worst part of all of it is that all the documentation was/is right here. Unfortunately, just like everything with Joseph we are only able to analyze everything later. We are always too caught up in the moment of what is going on to look at the big picture. We should’ve tried to reclassify his special education classification sooner. But, would that have made a difference? Is there actually anywhere in anything in this world that my son will be able to fit into to actually get the skills and help he needs? How are we going to do this? How are we going to be able to keep him safe and yet allow him to have independence? How is he ever going to be able to function in this world? How will we ever be able to explain to him that he has limitations? Well I guess I take the words of Margaret Thatcher, “You may have to fight a battle more than once to win it.” And fight I will.