How to Fight the System

They will tell you that it is your fault and your responsibility.

You conceived and gave birth to your children. You should not have brought them into the world if you could not take care of them.

If you adopted then it may not be your fault but it was still your choice.

You are responsible and no one else.

They leave you with these words while you go home and try to live in a world of crazy instability.



In graduate school we read a research article and said the household with schizophrenic children were more stressful and negative. It went on to imply that this is obviously why these children develop schizophrenia.

This was before my daughter's own scitzoaffective diagnosis. Yet I understood the fatal flaw in their logic. How can you live with crazy day after day and not loose your own mind?

This year I was called out for being a helicopter parent. Then I received an email from the same school administrator telling me that if I was more involved in my daughter's life then my daughter would not be having any problems.

This is my daughter with asperger's. Although asperger's doesn't exist anymore. So she is autistic. Except she cannot be autistic because she is verbal (when she wants to be) and has an IQ of 130 and doesn't belong in the class of other children with behavioral problems.

When I saw my daughter at school she was curled up in a fetal position completely mute. They told me nothing was wrong. When I left the school she screamed that she wanted to come with me. Then she was just putting on a show because I had been there and we were talking about her placement.

At therapy I tell my daughter's therapist, the one with scitzoaffective, that I am not sure how I am suppose to do this anymore. She is 14 and no one else will be alone with her anymore. I tell her therapist I can't do it anymore either but I have to. She tells me I am mom. Yes I am mom but I am also done. There is no solution. There is no help for people her age. I am told to just keep doing what I am doing. Then I go home and my daughter has another fit and I get another bruise.

My son just turned 16. The one with asperger's and ADHD. He had asperger's long before it was no longer real. He is quick to tell everyone that he is now old enough to have a drivers license. He will not get one. I told him he needed to ride a bike first. He won't learn to ride a bike because he is scared. Just the thought that he is old enough to drive is enough to make him an adult in his eyes.

He told me today that he was grown and he can do whatever he wants. He hasn't done his chores in three weeks. He wants to buy a fish tank that is over 25 gallons. He can't even keep his room from being a toxic waste site. I tell him no and he tells me that he is an adult. I tell him that is great at 16 he is old enough to get a job and start paying his own way. I tell him we can sit down and work out his expenses together. He screams at me for another two hours about how he is so big and should get his way. Sometimes he slams his fist into the wall. Sometimes he slams doors. Sometimes he kicks things. At least today it isn't me.

He is failing school. Yet his special education teachers tell me they know and have been working with his teachers. His teachers are using him to tutor other teachers. For months I have been working with him to turn in assignments. I'm working on it. I'm working on it. I'm working on it. And he is still failing out of high school. Yet he is grown and can do whatever he wants.

They want me to resign his IEP to give him a computer to help with his schoolwork. He desperately needs a computer because no one can read his handwriting. He desperately needs a computer because he can not keep track of any paper assignment. He desperately needs a computer so that he may not be failing school. Yet I had to take away his computer from home because he sneaks it into his bedroom and hacks off the parent control software so he can watch porn and people killing each other. He tells me that parental control software is not the solution because he is grown now and can do whatever he wants.

I won't sign the IEP because it says that my son is doing well in school. They tell me that it is from his last renewal and that they will change it when it is time to reevaluate him. I tell them that my daughter is stuck in a classroom with kids who have taught her about porn and cutting and a teacher who doesn't think hell is a cuss word because the district read the line "she seems to be adjusting to middle school well" which was written two weeks after she started middle school. They didn't change it and they denied my daughter a new placement. So I tell him that I will not sign the new IEP until it has been fixed. I am not sure I really want him to have the computer anyway.

I wonder what the researchers would do if they actually had a child with scitzoaffective. I wonder if they would think it was caused by their own parenting techniques after 14 years of the most unbelievable shit happening to them. What would they do when their three year old kept waking up being eaten by spiders. Or when they actually had to take their child off the ceiling, again, because she climbed up the tiny groves in the wall. Would they think it was the parent when they were kicked out of every grocery store because they couldn't enter one without their daughter loosing her mind? Forget finding a babysitter. They quit in under two hours never to be heard from again.

I wonder how long they would last. I have made it 16 years. Last year alone I attended more IEP meetings than my daughter's special education teacher.  I have gone back to school to understand my own children. I have changed jobs so I can get home earlier to be with them. I have been covered from head to toe in bite marks. The damage to our car is identified by not only child but the specific period of meltdowns. We have been kicked out of our home at the same time that my youngest was being restrained in an ER after trashing a YMCA building and assaulting a few police officers.

Tonight I will pray that they will all stay in bed - or at least not bother each other when they inevitably wake up during the night. I will loose myself in a book - someone else's world - and preserve some of my sanity.

Tomorrow I will wake up and we will do it all over again. I will call out the teacher for not giving me an IEP invitation on time and for thinking it is funny to joke about kids getting shot in a classroom. I will hope my 14 year old will not have a meltdown at my work because I no longer have after school care for her. My son will continue to tell me how grown up he is while he refuses to wake up, put on clean clothes, or remember to bring anything that he actually needs to school. All the while I will wonder how I possibly have the strength left to make it through yet another day.

What is Schizoaffective Disorder?

When our new psychologist mentioned schizoaffective disorder I only had a vague recollection of it's existence. My first question was - "Isn't that a personality disorder?" I was met with dissent. The way the doctor explained it to me was that when you have psychosis and bipolar symptoms the diagnosis is bipolar with psychotic features (S's current diagnosis) if the psychosis is dependent on the state of the mood. The diagnosis is schizoaffective disorder if the psychosis is not dependent on the mood fluctuations. Those of you who have been reading my blog for any length of time know that when life throws me a curveball I go to the research. This is what I found on schizoaffective disorder. I hope it helps you. 

Schizoaffective disorder is when an individual presents with both a mood disorder, either unidepression or bipolar, in addition to paranoid schizophrenic symptoms (Harvard Mental Health Letter, 2004). It is characterized by three main components. 1) The individual must have both a mood disorder and schizophrenic symptoms. 2)The delusions and paranoia must consist outside of a manic or depressive episode. 3) Mood symptoms are most always present (Harvard Mental Health Letter, 

2004). Schizoaffective disorder runs the risk of being misdiagnosed because of the overlap of psychosis or mood symptoms during specific periods of a course of either schizophrenia or bipolar (Cascade, Kalali, & Buckley, 2009; Harvard Mental Health Letter, 2004).  However schizoaffective disorder requires a life history of both psychosis and mood symptoms (Harvard Mental Health Letter, 2004).

The actual diagnosis of schizoaffective disorder is controversial and inconsistent. There is a large lack of agreement over the diagnosis of individuals exhibiting both psychotic and mood symptoms (Pagel, Baldessarini, Franklin, & Baethge, 2013). Some studies have found that individuals who meet the requirements of having both a mood disorder and schizophrenia are more appropriately categorized under schizophrenia (Kotev et al., 2013; Pagel, Baldessarini, Franklin, & Baethge, 2013). However, research also indicates that there are distinct difference between individuals diagnosed with schizoaffective disorder as opposed to schizophrenia or bipolar disorder (Pagel, Baldessarini, Franklin, & Baethge, 2013). 

Current research suggest that there is some overlap in genetic predisposition to both schizophrenia and bipolar, but that there are also unique risk between the two disorders (Cardno & Owen, 2014). There is also the suggestiong in the research that there is a unique risk for the development of schizoaffective disorder bipolar subtype (Cardno & Owen, 2014). However to fully understand the relationship more research still needs to be done.

History and Treatment

Schitzoaffective disorder was first identified in the 1930s, however it was not more widely accepted until 1980 (Harvard Mental Health Letter, 2004).  Even now very little is known about how the disorder manifests both mood and schizophrenic symptoms, although brain structure does seem to more closely resemble individuals with schizophrenia (Harvard Mental Health Letter, 2004). Like bipolar disorder, schizoaffective disorder seems to affect women as often, or slightly more often, than men (Cascade, kalali, & Buckley, 2009; Pagel, Baldessarini, Franklin, & Baethge, 2013).

Schizoaffective disorder is treated through medication management. Nearly all individuals with schizoaffective disorder are given an antipsychotic medication, and about half also take an antidepressant or mood disorder treatment (Cascade, Kalali, & Buckley, 2009). 

Childhood

While the research available on adults with schizoaffective disorder is basic, and inconclusive, the research on children with schizoaffective disorder is even more limited. Most of the research has 

focused on the difference between schizophrenia and schizoaffective disorder, or the intellectual and social prognosis. For example, it was found that children who exhibited greater difficulty in adjusting socially were more likely to be diagnosed with schizoaffective disorder as compared with schizophrenia (Tarbox, Brown, & Haas, 2012). However, if the social disturbance did not appear until adolescence individuals were less likely to be diagnosed with schizoaffective disorder (Tarbox et al., 2012). 

Hooper and colleagues (2010) assessed children between the ages of 8 and 19 with either schizoaffective disorder or schizophrenia. They found that both groups had academic and intellectual challenges. However, children with schizoaffective disorder were slightly above their peers in spelling ability (Hooper et al., 2010).  Individuals in both groups who preformed better on the academic and intellectual testing showed increased ability in adaptive behaviors such as daily living skills, social skills, and working memory then their lower performing peers (Hooper et al., 2010) It is interesting that they found that the younger a child was diagnosed with either schizoaffective disorder of schizophrenia the higher their IQ (Hooper et al., 2010). This could be a result of a different course of the illness or perhaps it is related to children getting interventions earlier, which then improves their intellectual capacity. 

The research is really uncertain about whether schizoaffective disorder is even a distinct disorder. Most evidence seems to point that, at least cognitively, individuals with schizoaffective disorder are more similar to individuals with schizophrenia.  However, this could be based on the unspecific diagnostic criteria of the DSM. Either way, no research has adequately explained if schizoaffective disorder is a unique disorder, a subset of schizophrenia, or comorbid mood disorder and schizophrenia. 

References

Cardno, A. G., & Owen, M. J. (2014). Genetic relationships between schizophrenia, bipolar disorder, and schizoaffective disorder. Schizophrenia Bulletin, 40(3), 504-515.

Cascade, E., Kalali, A. H., & Buckley, P. (2009). Treatment of Schizoaffective Disorder. Psychiatry(Edgemont), 6(3), 15-17

Hooper, S. R., Giulianao, A. J., Youngstrom, E. A., Breiger, D., Sikich, L. . .Lieberman, J. A. (2010). Neurocognition in early-onset schizophrenia and schizoaffective disorders. Journal of the American Academy of Child & Adolescent Psychiatry, 49(1), 52-60.

Kotov, R., Leong, S. H., Mojtabai, R., Eckardt Erlanger, A. C., Fochtmann, L., Constantino, E. . .Bromet, E. J. (2013). Boundaries of schizoaffective disorder revisiting Kraepelin. JAMA Psychiatry, 70(12), 1276-1286.

Pagel, T., Baldessarini, R. J., Franklin, J., & Baethge, C. (2013). Characteristics of patients diagnosed with schizoaffective disorder compared with schizophrenia and bipolar disorder. Bipolar Disorders, 15, 229-239

Schizoaffective disorder. (2004). Harvard Mental Health Letter, 20(12), 3-5

Tarbox, S. I., Brown, L. H., & Haas, G. L. (2012). Diagnostic specificity of poor premorbid adjustment: Comparison of schizophrenia, schizoaffective disorder, and mood disorder with psychotic features. Schizophrenia Research, 141, 91-97.