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.

Prozac, 2Q13 deletions, and other such stuff

With so much constantly going on in our lives it’s hard to even know how to keep up with this. With Joseph life is certainly one day at a time. The most difficult part of it is one day you may be thinking…”ok we got this…it’s going to be fine” and the next day… everything is on fire and you are in a scene from the walking dead and are just trying to make sense of the chaos that is engulfing you. One may say that you just have to live in the good moments but when your world is crashing down and you are the person that needs to hold it all together it is very difficult. In May after an extremely difficult and troubling year for Joseph just when we thought “ok we are through the worst” things got worse. Joseph slipped into such a deep depression we had serious concerns that he may hurt himself and had him admitted to Cincinnati Children’s Hospital for suicidal ideation. All I could think was I cannot believe we are back here. Not that the hospital isn’t amazing and the care he receives is questionable but more or less that we had been moving backward and now we were in dangerous waters that were all too familiar. Were we losing him again? Are we ever going to really have any sense of normalcy? Why can I as a parent just not help my child? It was gut wrenching and he was so angry with me. But what choice did I have? There was the real fear of finding my son dead. So there we were…. Familiar but not. Despite the fact that he has a psychiatrist at Children’s we had a different physician to “educate” about the complexities of my son. Let me tell you how utterly exhausting it is trying to explain Joseph and his “condition” to every new physician who comes into our lives. The doctor sat and listened as we tried to explain. After the very long conversation was over he looked at us and said I think we should try Joseph on Prozac. Ugh, oh my god! I guess I don’t know what I expected we had to do something but on the same token all I could think was… another pill… another med? What was going to make any of this any more successful than any of the other times we went down the path of pharmaceuticals? What’s to say this wouldn’t make things worse? After all the medications usually did. Am I making the right choice? Is this what I should do? But of course when the insurance clock is ticking on an inpatient psychiatric stay you don’t have a whole lot of time to ponder such things and I signed consent to start him on the medication and only prayed that this wouldn’t be a disaster. When the hospital was ready to discharge Joseph a few days later we had a meeting with the team to discuss strategies to help Joseph. I went to the meeting because that is what you have to do but in my mind I thought are you really going to tell any of us anything we don’t already know? Well the answer was yes. The psychiatrist came to the meeting to discuss Joseph and clearly he had been pondering he case while Joseph was there. He began to discuss the results of Joseph’s genetic testing from three years ago. It took me a few minutes to have my brain switch gears while I listened to him talk. Several years ago when Joseph had the testing it was found he had interstitial deletion of 127kb of DNA from the long arm of chromosome 2 (2q13). Ok….we knew this but it was determined at that time that they did not know the clinical significance of such a deletion. But thanks to the advancement in genetic research the psychiatrist found two…yes 2 whole studies done in the last few years that looked at children with a 2q13 deletion. How very fascinating right? No. We have known that Joseph has abnormalities that have not been explained and we know the challenges that they pose. We also know that there is Nothing… I repeat Nothing that can be done about it. We search for answers for what seemed like an eternity for Joseph and we now know that he has an abnormality but we resounded ourselves into knowing that it is what it is and that all we can do is try to help him. Now some may say that the expansion of genetic studies may help in providing information but in the end it doesn’t change anything, there is no cure, no pill, no surgery to fix it. On top of all that the study reports that there has only been 27 identified case of a 2q13 deletion in the world. Fanfreakingtastic! So now they have identified a few other people with this but even the study itself cannot provide any significant information that is meaningful in how to help a person with this abnormality. It is such a small population it doesn’t even have a name… there is no such and such disorder. And if you thought it was difficult explaining an organic brain injury to someone, try explaining a deletion of 127kb of DNA on the long arm of chromosome 2. In the end it doesn’t make much of difference. I know the psychiatrist was being helpful and was truly interested in finding answers but all it did was put me in information overload and not change how we help Joseph. We finished the school year in an ungraceful fashion and tried to focus on the summer. This too had its many ups and downs. Joseph was turning 15 and reality of his level of functioning was hitting me more and more. This really came to a head when we had a weekend with family and saw Joseph interacting with similar aged kids for an extended amount of time. To top it off Joseph’s mood improved on the Prozac but it shifted his impulsivity and hyperactivity into high gear. It was exhausting to spend any length of time with him having the same conversations over and over, not being able to follow his train of thoughts or make heads or tails of what we were talking about most of the time because he couldn’t finish saying one thought before he started talking about another. The fixations on certain things became increasingly worse and as the end of summer approached and school was beginning to start the panic came. Do we leave him on the Prozac which is making the depression better but everything else worse or do we take him off the Prozac and risk the depression returning? Without going too deeply into the details the decision to take him off the Prozac was made today. His inhibitions and lack of impulse control has thrown us into another survival mode situation. This too shall pass and we will be ready for the next challenge. I just fear he is getting older and there is less and less I can do to protect or help him in these situations. We are only a few short years from him being an adult in terms of age and then what will we do? I suppose we will figure it out, we usually do. But for now I must try to quiet my mind of all the worries and look at tomorrow to be another day to try again.

He looks normal

It has been a very long time since I have posted and recently I was flooded with facebook memories to look back on and there they were the beginning of my blog. I realize with so much time having past it would be difficult to catch up on all that has happened. In brief summary Joseph is still at home with us, CSB is no longer involved, and we have made some progress with Joseph. That being said with the progress we have made comes new challenges. Joseph is now almost 15 years old and you can imagine that even "typical" 15 year olds are hard to deal with at times... multiple that by a million and you get a rough estimate of how hard it is to deal with raging hormones in a already compromised brain. This year has been exceptionally difficult. Joseph had transitioned last year to the Junior High in the resource room and all appeared to be going well. Than at the beginning of this year a teacher who has been involved in Joseph's case for years left the district and replaced with someone who to say the least did not even begin or try to understand the nature of Joseph's disability. After much struggling and nearly having the bottom fall out on us we had to move Joseph back to the opportunity school, as we felt that was the better placement for him.... or at least we thought Now I try to give people the benefit of the doubt that Joseph's disability can be hard to understand. He looks normal. There is no outward sign of his disability which makes it hard. To complicate things Joseph's disability affects his frontal lobe which means it affects his behavior, processing,emotional regulation, and executive functioning. There are a lot of disabilities that can cause problems such as these but a lot of those have physical manifestations of one type or another that "help" people "identify" that a person has special needs. Again that is not the case with Joseph. So in short you have a "typical" looking 15 year old kid with behavior problems.... what do people think....he's a punk kid. It is infuriating to sit in meeting after meeting with "professionals" who do not listen to what I or the clinical experts at Cincinnati Children's are saying. He does not have a conduct disorder, he is not a sociopath, he is a kid with a brain injury! By all means this does not mean that we excuse Joseph from bad behavior. No oh no. I above all else continue to hold him accountable for his actions because after YEARS of repetitive intervention he may improve. What this does mean is that there is a way to go about behavior modification with Joseph that would be different than other "typical" kids. Believe me when I say I understand how frustrating and exhausting this can be. But it is what it is and expecting things from him that are not within his ability to do or understand will only lead to more failure and frustration for everyone involved. I often ask myself, If the people who are charged with helping Joseph do not understand or have any desire to understand the nature of his disability how are they truly going to help him. I sat in a meeting today where it was repeatedly said that I need to hold him accountable for his actions and behaviors. All I could think was "right lady because I just let him get away with whatever he wants". I feel as though because Joseph has no physical manifestation of his disability people think I'm making it up or using it as an excuse for his behavior. When in reality I do nothing but say "this is in no way to excuse his behavior". My explanation of his disability is to educate you on how to help him not excuse him. I will say as bad as it sounds Joseph's behavior is also all relative to me. Where Joseph's behavior of being disrespectful or aloof is annoying and frustrating, there is a part of me that thinks well he's not destroying property and the police were not called, gee that is some progress. With the "progress" that we have had I sincerely know that the battle is not over and will most likely continue to get harder as he gets older. For with every passing year he gets older, people expect more maturity and better behavior and the reality of it is he may not be capable. Also with every passing year there are new people to educate and inform about Joseph and his needs. Moral of this story " Do not judge my story by the chapter you walked in on" or " Never judge someone without knowing the whole story. You may think you understand but you don't. I hope to get back to writing. I feel it is much better to have these thoughts on paper than rolling around in my head. Thank you everyone who has took the time to read this and those who have been the ongoing support in our lives..... On to the next battle.