Sensory Integration Dysfunction and Mental Disorder

Most of my research in the past has been centered around affective disorders, theories surrounding the causation of dysfunction, and the cognition / behaviors that sustain it. I am broadening my horizons to include many mental health disorders and developmental disorder, particularly autism.

I have had a theory for awhile that hinged almost completely on curious connections I’ve made between bipolar disorder and autism spectrum disorder. Doctors ruminated on the potential for my father and bipolar disorder. By the way my parents describe his mother, it didn’t seem surprising.

We’ve always assumed that my “affective disorder” (assumed Major Depressive Disorder in my teens) was a result of my father. Assumptions are changing around parents house in light of serious mental health symptoms popping up on my mother’s side of the family. My grandmother has “dementia”, politely termed to describe her psychosis. And my aunt who cares for her has developed paranoid delusions. She has isolated herself, because she is sure that the family is “against” her and consorting with one another behind her back.

These things don’t come out of nowhere. They become present after certain events happen, whether they are biochemical or a result of external stressors.

So, why is it that two parents with suspected “affective” disorders bear one child with moderately severe classical autism and another with bipolar disorder? Another generation passes. Two parents, one with an affective disorder and another with a mental health disorder, both with psychotic features, bear a child with mild Autism Spectrum Disorder : Pervasive Development Disorder – Not Otherwise Specified?

I’m not at liberty to speak in detail about my husband’s disorder. I have determined that it is up to him; it is his own business, and it is best for his mental health to know that I am only vaguely referring to it as a “disorder”. I will leave it at that.

We have actually been speaking now, sometimes at great length concerning symptoms, dysfunction, and identifying with one another. Many of these symptoms seem to revolve around sensory disturbances. For me, I’ve gone to great length to describe times of sensory overload caused by a removal of a “sensory filter”. It’s a chicken and the egg conundrum. Does the emotional disturbance make me more susceptible to the sensory integration and processing dysfunction or vice versa?

Unfortunately, there isn’t a great deal of literature on sensory integration dysfunction and mental health disorders. However, there is a wealth of it, as it is considered a component of Autism Spectrum Disorders.

It is thought that the main feature, besides pervasive behaviors, is sensory integration dysfunction / disorder. It is observed that children with ASD fall into categories of sensory “seekers” or “avoiders”. Seekers are thought to have dampeners on sensory imput. Avoiders are opposite and have a sensory overload. But, in most cases, there is usually a combination of the two. Some seeking and some avoidance. Unfortunately, avoidance is considered the most recognized behavior, as it is considered the most dysfunctional.

I can only speak for me. In episodes of hypomania, I become a seeker. One would think there should be an avoidance, but in hypomania, I cannot get enough. My brain eats it at hyperspeed and processes it just as fast.

However, mania is a different story. Often, sensory stimuli overloads an overly active mind. It makes manic symptoms worse. Sometimes, the racing thoughts become fragmented and my thinking becomes disordered. My speech becomes disrupted and incoherent, because the intergation of external stimuli cannot be effectively integrated. And an overload occurs.

In psychotic states, the sensory stimuli becomes confused and distorted. Places and people may become foreign and strange. Hallucinations can occur, distorting sensory stimuli even further. And delusions are fed by misinterpreted stimuli.

Mixed states are the worst. As everyone knows, a mixed state is probably the most unstable a person with bipolar disorder can get. Sensory stimuli is integrated, but poorly. The cognitive associations are often misinterpreted and can spark even worse symptoms.

A sensory overload is common in this state. The internal struggle is enough to shy away from anything stimulating, because of the cognitive inability to process it properly.

I’m still working on interpreting mixed states, the dysfunction, and how I experience it. The problem I face is that many new symptoms I did not expect surfaced at the same time.

Moving to depressive states. I find that I am often very easily overstimulated, though my mental state is dulled. My mind suffers a certain retardation of congitive and physical function. The problem the occurs is the foggy state makes the processing of stimuli difficult. It deepens emotional distress when presented with too much. I simply do not have the processing speed.

So, there are several functions that cause the dysfunction. There are a few facts that remain. I am an auditory avoider when I am unable to process external stimuli due to aggitated or foggy states. I am a tactile seeker in these states, with the explicit exception of psychosis. In (hypo)manic states, I am a motion seeker, as it calms. In depressive states, I am a motion avoider, but a visual seeker. Contrastingly, I am a visual avoider in (hypo)manic and psychotic states.

I could go on from there, but I won’t. I am more inclined to seek input from others. Examine your behaviors of seeking and avoidance. What do you find?

Why Self-injuious Behavior?

A response to carlanee’s post about self-destructive behavior. It expands upon the basic concepts noted in the reply.

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Most of the time, in the clinical world, it’s referred to as “self-injurious behavior”. That includes all kinds of harmful behaviors directed toward oneself across all diagnoses.

It’s fact that SIB (self-injurious behavior) is often a behavioral expression for emotions that have no other outlet. Many children with autism spectrum disorder engage in SIB. Most often, it is because they are developmentally delayed in the social and language domains. However, many times it does have the function of attention seeking behavior – but not in the way that some perceive it. It does not carry sole intentions of “acting out” in the role of negative reinforcement. It is a way of communicating, “I’m hurting. Please attend to the situation.”

But, SIB has many different functions in other diagnoses. SIB is absolutely complex in development, function, and reinforcement. Some people engage in the behavior as an outward expression of inward suffering, others do it for the adrenaline that it releases. But, most people who engage in SIB are never aware of the root cause that sparks the behavior, nor are they aware of the function.

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Reader beware: The following section may be disturbing and trigger inducing. Discretion is advised.

I have been engaging in SIB since the onset of symptoms in my early teens. Nowadays, SIB is a widely covered social issue through media outlets. So, it is pretty easy for children and teens to get some ideas and tips. However, when I was young, SIB was very hush-hush. I did not get the idea from anywhere in particular. It just occurred to me.

It became a regular and highly ritualized behavior. Dark room, so it would look like I was sleeping. Music in the background, nothing in particular. Just some background noise not to raise suspicions. My knife and me. Because, it was easier to get a hold of a kitchen knife than it was to obtain a razor. Besides, that didn’t occur to me until later on.

I will refrain from detailing it any further. The development is obvious, and needs little explanation. However, I will explain the function and reinforcement. I have had well over a decade to study it and witness it in for myself, through myself.

SIB has multiple functions for me. First, for me alone, it is a physical manifestation of the pain I experience. Sometimes, there are no words to pair with it. There are no words in the world to make the feeling go away, and the behavior has become an impulse, rather than a carefully planned, ritualistic behavior.

Second, it is a form of self-punishment. This is the behavioral response to emotional neglect and abuse as a child. I had no confidants. There were no adults that existed in my life that I could relate this awful depression to. And when I attempted to do so with my own parents, it was dismissed. PMS, a phase, attention seeking behavior, imaginary, excuses. I’ve heard all of the rationalizations there are for depressive symptoms.

As a form of self-punishment, much like those of the clergy in the old church, it represented all of the punishment I deserved for being a bad person. A failure. For being insignificant and terrible enough to be unworthy of love. All that a despicable person like myself deserves is wounds. Terrible wounds that will bleed, and scab, and scar so that I might be reminded every time I look upon them.

SIB also serves as a mechanism for control. I have always noticed a pattern about the stimuli that prompts this behavioral reaction. I get to a point where I am overwhelmed, and my life is spinning out of control. I feel helpless and hopeless. The only thing I have control over is my own body, even when I cannot temper my emotions. This mechanism is dangerous, because it is the gateway to an abundance of other methods of SIB.

It is also a small part of the lingering, highly romanticized desire for death. Suicide is something else entirely, so I will leave that at that for the moment. In a way, it is like blood letting of the barbaric medicine practiced in medieval times. When a person was afflicted, blood letting was a common practice. It was though to purge toxins and evil from the body and mind.

And lastly, and most importantly is the addictive component. The act of SIB releases endorphins in the body. It allows the mind to focus on the most immediate pain it perceives, distracting from emotional suffering. Instead of being trapped with those emotions, the mind can be set free from that cage. It focuses on the real pain and the real injury. These endorphins, once the climax of the pain has been reached, take over. For a moment, a brief moment in time, the mind is empty. Everything is numb, with the exception of the radiating pain from the wound. It is similar to taking a drug to escape.

SIB is really a dangerous behavior for all of those reasons, and many more in the realm of somatic damage. I have incredible amounts of scar tissue, some still visible more than ten years later. Other bloggers have related worse to me. Nerve damage, lasting pain, etc. For those that engage in other types of SIB, the risk becomes even greater. Especially with ED and promiscuous behaviors. I am typically a very faithful person, remaining monogamous. (I am completely monogamous in my marriage. Don’t get the wrong idea. That was then, and this is now.) And I still ended up with HPV, causing me to have cervical cancer and two surgeries. The more partners, the higher the risk.

In summation, SIB has an seriously addictive component, and is not a substance, so it makes it harder to control. With a substance, a person can refrain from the substance itself. SIB is a little different because devices of self-harm exist everywhere, and can be carried out in a variety of ways. SIB can be most effectively treated with ABA techniques, mostly behavioral replacement with positive reinforcement. It is a long and difficult process, but it can be accomplished.

Mommy Cries Too

Warning: This post has controversial and potentially disturbing content surrounding suicide, psychic trauma, and child abuse. Reader’s discretion is strongly advised.

It started as a whimpering, jaw tight with a lip curled over. Soft, pattering, high pitched little noises, not much to even notice over the ambient noise. The realities of what played out in front of these oceanic colored eyes, glistening with anticipating tears, struck hard, and relentlessly roared inward and outward. The sheer force gusted forth a sharp wail, the same violently held hostage in the same dusty box of voices moments earlier.

Thoughts, voices, dialogues, monologues, scenes, words, swamped and overwhelmed this consciousness. Bits swarming together and fashioning a patchwork quilt for the minds eye to finally behold. Nowhere to turn, the newly formed blanket enveloped every last portion. Inescapable, imprisoned in truths, half-truths, past, present, and future. Sobs and tears erupted like a furious geyser, spattered with guttural words.

Why?

I can’t make you happy.

Please, stop crying.

Mommy cries too.

. . . dissolving nearly as soon as they came into reality.

The tiny voice murmured indistinguishable speech, only heard through the hitches. His presence shifted, but only once removing himself to procure a gift. Eyes squeezed shut, tears slithering though hands to fall where they may. Again, he joined the wailing, wolves howling in the night. He fashioned himself as a koala, and held tight.

– – –

Curled on the bed in sullen agony, with lead curling in tendrils up and down each limb. The tiny voice said, “Juice?” A raw, numb voice replied, “Go get your cup.” “My cup, my cup,” he repeated for a scant few moments.

A frustrated cry, and a strike on the back. Another. Laying there, absorbing the blows in hopes they would soon cease for good. Another, then a few in succession. A pause. A warm circle in the direct center of the back, a scrape of teeth.

A memory flashed, and I shot right up. Without thought, I slapped him on his right cheek, but in a nanosecond held back, but couldn’t entirely stop the motion. His face pucked, tears welled and spilled from his eyes, and he screamed. I pounced.

“We do not bite! We do not bite! We do not bite! We do not bite! No bite! No biting! No! We do not bite!” I belted until I ran out of air.

Stop! Before you hit the X in the corner, and do your mandated reporting, read this. This is an isolated incident. I has never occurred before. I had no malice or ill intention for my child. This was a snap reaction that I am now extremely cognizant of. So please, at least read the rest of it before you contact authorities.

We both were there, staring at one another, gasping for breath. He threw himself into my arms. I enbraced him for a second, only a second, and put him on his bed. I stood and sighed, “We both need a time out.”

I started for the door, and his screams grew wilder. I turned to look, and he was now curled in the bed, hysterical. Poisonous daggers jammed deep into my heart. His pain was mine, but the urgency for me to abandon him was too great. Stay and harm him, or leave and harm him?

I sat down at my desk, and lit a cigarette. As I exhaled, I choked back more tears. Sinking, cigarette smoke swirling around me, all of the menacing thoughts rose to prey on my guilt to intensify my pain.

I am a bad mother.

I am. Another monster in a history of monsters. What was the flash in my mind that drove me to these horrific actions?

He was enraged, tearing through the house, screeching. I became smaller than small, for I already was small. I clutched my plastic cup, hoping I could disappear. I was in the basement, and the elephants trumpeted and stampeded back and forth, trampling throughout the house.

When his feet hit the cement floor, his eyes fixed on me. He made a run for me, and I dashed for the stairs, for the safety of my parents, a room with a lock, anything. And in that stairwell, he lunged on me. He sunk his teeth hard into the center of my back and I let out a blood curdling scream.

I screamed and screamed, tears pouring out. It had been the worst pain I had ever experienced up until that point. My parents were removing him from my back before even addressing me or my wound.

My father helped me to my feet and my mother was nowhere to be found. The pain intensified anytime I moved.

And all he could say was: “It doesn’t hurt that bad.”

 

I made a painful realization. I cannot remember a childhood before eleven for a reason: My parents let my autistic brother brutalize me.

It’s no excuse. None. This is no feasible And as I furiously dragged on that cigarette, I determined that my son, my family, would be better off without me.

It could be done with ease. I would call into work and tell my boss I couldn’t make it in. I’d neglect to tell my parents, and my son could be safe with them. And, I’d empty the Vicodin bottle with the Wellbutrin bottle into my mouth, and wash it down in one big gulp.

Then, I’d prepare my note. I would not want to leave this world without at least a few words to as a testament to my own failures, not anyone else’s.

My sister called, before that train of thought could steam along into action. Sometimes, there is a such thing as divine intervention. She rarely calls that late in the morning. While idly listening, I mustered the courage to face my son. I nervously peeked into his room.

My little boy was sleeping, with the angelic, peaceful look all children have while slumbering. Eased for a moment, but then sinking again. I knew I would not be able to apologize before I left for work.

He may never know how incredibly ashamed, guilty, monstrous, and sorry I feel. He may never know how much I hate myself for seemingly not loving him enough to stop myself. I won’t try to justify it. The only thing I can see is the traumatized look on his face, the tears glistening as they poured down. And all I want to do is to walk to a bridge, any bridge in Pittsburgh will do, and leap from that great height to plunge into water that would guarantee near instantaneous death if the fall didn’t do it first.

This is not a testament. I am miserably, but safely at work. This is my aching, broken heart pouring out. This is my confession.

 

Note: There was a lot of hesitation about posting this once it was written. If you have harsh reprimands, please keep them to yourself. I’m in a very fragile state right now.

The Open Mind Policy : 30 Days of Truth

Day 2: Something you love about yourself.

Following up on the subject of self-love, I embody some admirable qualities.

The Open Mind Policy
“I’ll try anything once.”

Truthfully, that was once my motto.  Except, I found myself in too great of a number of undesirable situations that I would have preferred to not experience.  We live – we learn.

This is the basis of my Open Mind Policy.  It is truth when it is generalized that all humans have certain biases.  That is part of the human condition, and not exactly shameful.  It functioned as a survival mechanism in primal humans.  Hence, we are fearful of unfamiliarity.  Unfortunately, this fear typically turns to hate, and that is one emotion I tend to keep at bay.

Throughout my last year at my job, I have noticed different attitudes in the African American community.  Much of their community is now highly diverse.  These divisions are no longer even regarded as anything.  They’ve helped me understand a world and a culture beyond my own.  And they’ve really opened my mind.

Through my eyes, people are people. Divisions of race, gender, sexual orientation, nationality, religion, political orientation, socioeconomic status, mental and physical health, age, and lifestyle do not matter to me. Those differences have no bearing on how I view a person.

- Eminem

A person is who they are, not how they are labelled.  Humans have a particular penchant for categorizing everything within their world.  While this organization is important for cognitive function and development, it does not function as segregation of people.  It is not meant to emphasize differences among peoples, their behaviors, and their cultures.

In recent years, I have noticed that racial tolerance has become the norm. Tolerance is not acceptance, and is by no means synonymous. Acceptance is when those divisions dissolve into an unrecognizable remnants of past prejudices.  I have learned that by working in a community of people unlike any I have ever been exposed to.  I see children and adults alike regarding people as just another person, another friend.  Despite color, culture, heritage, quirkiness, and what-have-you, we act as if we are in a family system.

I am proud to say that I have rid myself of religious biases. I am personally weary of claiming my own religious affiliation, though very interested in the religions of the world. However foreign, and however devout, I am accepting of others who may not share the same sentiments on spirituality.  I realize that everyone has their own interpretation.  At this point, I refuse to make a statement at this point in time concerning my own spiritual beliefs. There is no better way to lose friends and alienate people.  So, I mostly avoid the subject anyhow.

The same goes politics. In past years, I groaned when a person started in on the opposing side of a subject I felt passionately about.  This created a serious schism in interpersonal relations.  Many friends were lost in the heat of debate.

I’ve learned that it’s not worth it.  I may disagree with where another person stands, but I refuse to judge their character by it. Different lifestyles and socioeconomic standings create different opinions.  I promote unity and balance, without digging my heels in too much.  I’ve never walked a mile in many people’s shoes.  I cannot know their journey and where they are coming from.

As for my own journey, I am not one to set my own choices up as the standard in which everyone strives. My own lifestyle choice is likely not fitting for everyone else. There is no such thing as “one size fits all”.  People are more content when they don’t feel societal pressure to live a certain way.

Therefore, I am not exclusively friends with the population that is married with children.  Marriage and children are not a lifestyle choice for everyone.  As a matter of fact, I applaud those that resist the societal pressure, when they know that is not what they want for themselves.  Many recognize that they have a preference for living solo.  Some have a different sexual orientation, and that’s fine with me.  I’m not homosexual (I can’t say I didn’t try in college).  But attraction and love are beyond anyone’s control.  It’s not up to me to decide.  It’s up to the individual.

Individuals have different biology, right down to the molecular level.  We are unique, atom by atom.  We look uniquely, function uniquely, think uniquely, and behave uniquely.  I have a special place in my heart for those that suffer debilitating physical and mental debilitating disease and disorder.  I find a certain kinship within the group of people with unique mental health concerns.

This is a preference, and I’m now careful to not reverse a discrimination against those who do not carry a diagnosis, or norms, Non-Dx, as I may refer to them.  I sometimes use norm(s) as a derogatory term to refer to people who are especially ignorant to the topic of mental health.  Although I am still outraged, I have come to understand that these people are victims.  They are victims of widespread ignorance and fear.  I cannot wage war when my ultimate goal is to bring education to the general population.

I am also guilty of occasional gender discrimination or man-bashing, as it’s typical referred to in the female community.  In all honesty, I do not mean it.  I am not a feminist man-hater pushing the female agenda.  In fact, quite the opposite.  However, I am aware that it perpetuates a stereotype that others could buy into.

The point is, one bad apple does not ruin the whole bunch.  The gender war has been present since the beginning of time.  Only now, in the 20th and 21st centuries are we progressing toward equality for both genders.  That does not mean that stereotypes and biases are erased from existence, much like that in race.

Everyone has heard about the “crazy bitch” or the “pigheaded jerk”.  Women are moody largely in part of a constant cycle of ever changing body chemistry.  Men think sexually because testosterone is essentially the hormone responsible for sexual impulses.  (It’s also responsible for aggression).  That’s fact.  Again, because of the extreme individuality that humans have through by nature and nurture, this can be more or less prevalent.  Accept the fact that it’s possible.  Learn to live together.

And most of all, socioeconomic status. I share in the plight of the working poor. Although I am an avid Occupy supporter, it’s less about the 1% and more about the abuse of power through corruption. That is about justice.

I’m not saying I don’t judge at all. I am human after all. We all judge. However, I will only judge a person when they have proven to commit heinous acts.

I greatly detest people with hate and malice in their heart.  With those two emotions, people have waged unnecessary wars (what war is necessary?), committed vile acts such as genocide, and perpetuated more hate and malice through organizations such as the KKK.  If these people would stop for one moment, think of The Golden Rule, and open their minds to the possibilities, the world would be a much better place.

A Peach and A Catalyst

This one was inspired by Colonial Punk’s Post.

Stress.

A one syllable word that is so commonplace in everyone’s life. When am I not stressed? I can’t answer that. It really is always something.

It’s more about how stressors are processed that produces the effects and thus, the consequences. I’m probably not a prime example of how stress is interpreted. I have been known to buckle under the weight. I am guilty of allowing my situations to become critical.

How stress manifests for me is a complicated thing. It depends on the particular stressor and the source that it is coming from. In addition, it depends on my particular mood, the emotion, and the intensity of emotion that the stressor produces at the time.
I’ve been running a little high lately. I’m out of the hypomanic episode, thanks to a virus or something. But, if I had to describe the state I’m in right now, I’d call it a 6 or 7 on the mood scale with panic attacks. (In all fairness, this started before the abnormally high stress). Honestly, I’m used to running at about a 4.

I mentioned in Just Got Served, But It Wasn’t Dinner that C.S. is being sued. That was Thursday. That comes with a whole host of problems for both him and me. We finally have the name of an attorney. Any further than that and I’m really not at liberty to publicly detail the rest. Legal problems are at least in the top 5 of my “Worst Things That Could Happen List”. (Medical is number 1. We’re getting there.)

My typically benevolent boss is coming down on me. I understand her concern. My boss has a difficult time delegating and the Winter Concert is in my hands. Her anxiety has to be off the charts. It would be absolutely embarrassing if this project flops.

The electric company has recently determined that we are financially ineligible for services. Now, we’re stuck with a budget amount of $430 a month. That’s up $200 from what we were paying on a “just making ends meet” budget.

T.D.’s Early Intervention services ended October 16th, when he turned three. This is complicated, so try to stay with me. He was supposed to have transitioned into school-aged services at this point, but it didn’t happen.

Adding fuel to the fire, C.S. isn’t sure if he wants to take this promotion on the cusp of some serious financial detriment and before the holidays.

I mentioned problems with T.D.’s pediatrician giving me some serious trouble in The Farris Wheel. I won’t go into the complete story, but I have a ton of things I have to face now with his health and development.

And I have this surgery looming.  My consult is finally scheduled in stone for October 28.  We’ll just have to wait and see.

Blah.

The reactions varied. When I saw the papers for the suit, I sprang into action. It was an insult. I was angry.

When my boss came at me, I flew. It shook the very foundation of my work experience. I’ve always considered work to be a safe zone. I became so anxious that I responded with annoyance, fear, and paranoia.

All of T.D.’s things are overwhelming. I’m treading into unknown territory and I’m not sure how to proceed. It froze me in fear to know that my child has something wrong. And I felt like the worst mother in the world.

I’ve never had a major surgery. There are a lot of unknowns. I’ve been dodging it because I don’t want to walk around blindly. Too many what if’s. How am I going to handle news that something bad has happened?

And as for the bills, what am I going to do? We can handle it, but we’re going to be on a tight budget. We might have to make some heavy sacrifices. I am upset. I can’t stand the idea of living in extreme poverty again. I am almost to the point of tantrums. I still need a couple new staple clothing items (white t-shirts), new contacts, and new glasses. When will these needs be satisfied, if at all? Rawr!

So, as you can see, stress produces a wide variety of responses. But, the end result varies. Either, I crumble into a depressive episode because of the feeling of helplessness and hopelessness. Or, I go manic and power through with serious ferocity. Or, I am frozen with anxiety, and if I approach the situation, I’m overcome and retreat.

Spin the wheel. It’s hard to tell what stress will trigger with bipolar disorder.

Take two, three or four pills and call back in the morning.

The Farris Wheel

Manic Monday recently wrote a post entitled Surgery Date that talked about nasty, unprofessional health care professionals. I spoke to her about their disgrace and the extreme agitation it caused.

I have been through the situation many times. I have a certain amount of animosity toward health care professionals as a result. I have been misdiagnosed. I have been diagnosed and not treated correctly, if at all. I have been treated as a hypochondriac and a liar. One clinic took the wrong course of action and made a condition worse. I had cruel nurses during my delivery and one that popped my hip out. I’ve had overzealous doctors want to pump me full of drugs when unnecessary. Others refused me much needed medications such as antibiotics until I developed a worse condition. And the worst of all was the incompetent doctor that botched my last surgery and left me on the table to fend for myself.

Worse, there are doctors that have mistreated my son. They’ve attempted to withhold antibiotics, and advised me against taking him to the hospital when he had a fever of 105F. But they are eager to pump him full of brand new, live vaccines, which have not been tested in the long term. I am almost convinced they are attempting to kill my child.

Dr. W., T.D.’s psychologist that diagnosed him with PDD-NOS on the ASD, was the worst of them all. At his diagnosis, she essentially handed me a stack of papers and sent me on my way. And still, she failed to include some crucial information.

T.D.’s pediatrician appointment did not start well. Dr. F. had a nasty demeanor. She started a physical exam when C.S. and I mentioned T.D. suffers from chronic diaper rash. She snapped, “Well, why is he still in a diaper.” I answered in a snotty tone, “Because he has Autism Spectrum Disorder.”.

“Oh.”

Yeah, oh. Bitch.

She certainly changed her tone after than. Until, we got to the vaccinations. You see, we started vaccinations until T.D. was a little over a year old. That is when my FIL (father-in-law) was diagnosed with stage 3 lymphoma. He started chemotherapy and it was recommended that T.D. stop the vaccines until my FIL was declared in remission. In that time, C.S. and I decided against them.

Don’t get me started on the vaccination debate. Suffice it to say, I’m not going to change my mind. But, I got those looks like I’m a terrible mother for signing that waiver.

Worse, they uncovered an ear infection in both of his ears. T.D. showed no symptoms and didn’t complain of pain. How was I supposed to know? He’s still largely non-verbal!

She treated me like a terrible parent all around and T.D. like he was retarded. I got crap for him not seeing a dentist. WTF?! Most dentists won’t see patients younger than 3. On top of that he has special needs!!! Do you think he’s going to sit still for an oral exam when I can’t get him to sit for a haircut? I don’t think so.

And here’s the cherry on top of the sundae. His BMI is high. So now, we all have to keep a constant and detailed food journal. Yeah, as if I’m going to be able to get all of his sitters on board with this. But, it has to be. I’m sure the next step is a dietitian and CYF at this point.

And at the end of our visit, she made it pretty clear that she doesn’t believe the diagnosis. Excuse me, are you a child psychologist? NO!. Don’t make judgments you aren’t qualified to make!

I do feel like a failure of a mother. Even when I know a doctor is trying to guilt trip me and fear monger me into doing things her way. I know my son better than any doctor could hope to.

At the very least, I’m pointed in the right direction as to where to get the referral for services. And unlike other pediatricians, she was not hesitant to prescribe medicine. Those are her only redeeming qualities.

I still absolutely detest that woman. I am rescheduling his appointment with another doctor. I never want to see her again.

Just another reason on the pile as to why I despise medical professionals.

Congratulations! He’s a Boy!

As I mentioned in Overdrive Mode and Riding in Cars With Boys, my son, T.D. was recently diagnosed with Pervasive Development Disorder – Not Otherwise Specified. In other words, he has behaviors and developmental delays consistent with Autism Spectrum Disorders but not enough to be diagnosed as such. The diagnosis was a very big deal. I was afraid that we would have a long, uphill battle to catch up. T.D. has a speech delay along with several other minor delays in social development and behavioral management. But then, something almost miraculous happened.

Two weeks ago, he started speaking more, and much better. I thought that it might have been a fluke and that he’d be mostly silent again in the morning. But he woke up jabbering away. Since that day, he hasn’t stopped talking, except to eat and sleep.

He has gained significant momentum. Everyday, the words he already had get clearer. Then, more and more are coming at an astounding rate. He seems to know the word for everything now! He can put them together and have some intelligible speech to express needs and wants.

Then, something wonderful happened yesterday. He asked me a question. “Mommy, what are you doing?” Simple enough, but he had never asked me a question before. And we had a conversation. It was limited, but it had been the first real one ever. I was so proud.

Even better, today he started playing pretend games. He played dress up and pretended to be me and then Grandma (my mom). He wore her shirt and carried her purse around. He pretended to talk on a telephone. It was incredible.

I used to look at him and see a baby. He didn’t speak much or well and he was still in diapers. This was all being 36 inches tall and 40 lbs. I got to keep my baby much longer than most women. But I feel like I lost him all at once.

I couldn’t be happier.

T.D. Is now a little boy.

Riding in Cars with Boys

When I was a little girl, my parents would often fight in the car with both my brother and I in it.  It was always the most distressing experience.  My father would fly off the hook about something, and my mother would beg him to stop screaming in the car and driving like a maniac because we would get into an accident.  My brother has autism, and as a little boy, he would hit whoever was closest to him – hard.  If he hit my dad, he would freak out even more.  If he hit my mom, she would just go silent.  And if he hit me, I would cry, and it would largely go unnoticed because of the bigger problems at hand.

Anyway, it was a disastrous event, every time it occurred.

Eventually, I became old enough to decline invitations to go places and was happy to do so.  My domestic life was dramatic enough without having to take it on the road.  My mother explained to me that my father did this to her on purpose.  Because she was so passive, he would trap her in the car so that she couldn’t avoid the ensuing argument.  Not a bad plan, other than the whole prospect of getting into an accident.  (Which we never did, by the way.  My father, at 61, still has yet to get into an accident that he caused.)

I have found myself in similar situations throughout my years of being a passenger in a car with a significant other.  I had one ex who found the car was the only place he wanted to fight.  He would dodge everything until the key was in the ignition.  And for maximum results, he would take a crowded highway.

I am not my mother’s child.  I am my father’s child in every way, minus most of my physical appearance.  I am not passive, although I can be passive-aggressive.  I have fought to get this far, and I’m not going to lie down anytime soon.  I am highly reactive (probably a product of bipolar), and can take a hint better than most.  I am an empath.  I can feel what’s going on around me, even without words.  So if someone is going to take a stab at me, they better hope they don’t miss.  Because, I’ll be back with chainsaw.  On a non-deep-down-dark-depressive day.

 

Back to the chronological narrative.  After my husband witnessed all of the direct deposits being dumped into the account on Friday, all was well in the world again.  At least his.  I don’t get over things easily.  It’s hard for me to forgive, and I will NEVER forget.  But when he became a little more easy-going and wanted to actually spend time with his family, I started to feel a little better.  We had friends over on both Thursday and Friday after the recent disasters.  C.S. puts on a fantastic show.  It’s like Who’s Afraid of Virginia Wolfe, truly a dinner theater-type show to behold.  I am less inclined to play pretend when I feel it’s too much of a farce.

Saturday morning came and he was springing to life with ambition for family time.  He was intent upon taking our son (I’ll start referring to him as T.D.) to the museum.  Outings are always a to-do and stressful to get out the door.  Yes, with the man who is perpetually late.  When I die, this man will be late to my funeral, if he makes it at all.  His man will be late to getting to the pearly gates before closing time for the day, and he’ll stand there and sweet-talk Saint Peter into at least sneaking him in the backdoor, while also taking some money off of the cover charge.  That is C.S. in all of his glory.  But when it’s something that wants to do, he’ll be flying us out the door.

“Check the mail.”  Always an obsession with the mail.  You know, there is nothing ever in there but junk mail, bills, and boasting / nagging letters from his annoying, pompous bitch aunt.   (There, I said a swear.  She’s a bitch.)  But no matter.  I grabbed the mail and knew by the scrawl on the front that this was the results from T.D.’s evaluation, addressed: To the parents of T.D., Pittsburgh, blah, blah.  I told C.S. what the contents were and was about to throw it inside.  But I knew that it would gnaw at me until I returned to find it there.

“I have to read it now,” I thought.  So I dropped it in my purse and hauled it off to the car with the rest of the 50 pounds of supplies and junk we need to go five feet from our house.  My doing, mostly, I’ll admit.

As we drove through our town, headed for the gas station, I opened the letter.  I scanned through the first few pages, because I had seen them before.  My husband started hounding me for information and I started to give it to him as I was reading it.  When I got to “The mother filled out a questionnaire to assess Autism Spectrum Disorder…” he went off like a firecracker.  “How could you fill those out… I’m his father too… he  act autistic like what you say… you just said those things to make it seem worse… I should have a say… You aren’t allowed to fill out any of those questionnaires again…”

We pulled into the gas station and I fired back, “Is it going to be like this the whole trip?  I will get out of the car right now and walk myself back home.”  He refused to answer.  “I had to fill those questionnaires out.  It’s part of the evaluation.  I’m doing what is right or our son.”  He growled, “We won’t talk about this here.”

I don’t think so!  Absolutely no one on this planet will ever silence me.  I don’t care if that person is the President, or even the Pope.  No one has the right to take away what I want to say and where I want to say it.  Second, you don’t start an argument with me and then attempt to silence me!  If you started it, I will be sure as hell to finish it.  And third, no one, and I mean, NO ONE on this planet, father or not, will tell me what I’m doing with MY son.  I carried that little boy inside of me for a grueling 38 weeks.  I spent 13 and a half hours in agonizing labor (is there really any other kind?) to bring him into this world.  I bear the physical scars of motherhood on my stomach and other lady parts.  And I have spent the majority of his life raising him practically alone.  I believe that I have earned the right, even if it wasn’t given to me the moment I saw that digital pregnancy test light up as “pregnant”, to do what is needed and best for my son’s health and well-being.

We fought for 10.4 miles.  I google mapped it.  It was this awful back and forth.  C.S. insisted that he be present at every evaluations and that an evaluation couldn’t be done without him.  I bitterly asked him what was the sudden change of heart after he failed to be at every other evaluation.  It was my mother and me, his two primary caretakers and the only two people in T.D.’s life that are well-versed in developmental disorder and mental illness.  “What gives you the right now, after all of this time? Out of the 14 awake hours T.D. has, I care for him 6 hours of that solo and another 3 with you lingering around.  The other five belong to mom, who watches him so I can close the hole in our finances.”  He gets on the defense about how that isn’t his choice and how someone has to work.

I wanted to scream at him that is was his choice.  I was working and all of a sudden, he decided after 8 months of being laid off that he wanted to go back at any cost.  And I still worked after that.  The only time I didn’t spend working at least 15 hours a week was during a portion of my pregnancy when I wasn’t doing well enough to work, and then I became to pregnant for anyone to hire me.  And after I had T.D., when I was very sick from what if physically and emotionally took to bring him into this world.  Now, I can’t work more than I do because someone, meaning me, has to be at home to take T.D. back and forth to therapies, special schools, and be at home for in-home services.  I have done nothing but devote nearly every available waking moment to T.D.  He wasn’t interested before, and I had resigned myself to being a single parent inside of a marriage.  (And believe me, there ain’t a lot of outside help to us married gals, even the ones with bipolar who have children with special needs).  Why now?  You know, all of a sudden when someone wanted to slap a label on him.

I went on to tell him about the rest of the contents of the letter.  He was very silent for a moment and all he had to say for himself was, “Oh.  You didn’t say that before.”  {Insert insane cursing here}.  How could I have possibly been able to do so, when the first three lines that came out of my mouth were met with such a colossal storm of rage, berating, (because that’s his favorite), and threats?

I gave him the points that I couldn’t make before.  This diagnosis opens up the doorway to treatments and funding that T.D. would not have otherwise qualified for.  We are both agreed that he needs extra help, and that even if they go overboard, it can’t hurt him.  Labels don’t carry the weight that they did when we were kids.  In fact, when we register T.D. for school, no one will even have to know about this.  Legally, no one has to know.  We don’t have to tell anyone.  Not our friends, not our family.  We don’t even have to tell his pediatrician if we don’t want to.  (And largely, no one does know.  Two close friends, his therapists, and our parents).  There doesn’t have to be a stigma, and there is so much awareness now that there isn’t one.  This diagnosis, this label, does NOT make T.D. any different than he was yesterday or the day before that.

He was relieved and the conflict was resolved.  For now.  I find it disturbing that the only thing my husband seemed to care about was the social stigma that could result from carrying a PDD-NOS / ASD diagnosis.  But then again…

Who’s Afraid of ‘Gina Wolfe, ‘Gina Wolfe, ‘Gina Wolfe?

(NOT I).

Overdrive Mode

For those of you familiar with the Final Fantasy video game series, then you already get the reference.  Otherwise, I will take a moment to explain it to you.

Overdrive mode is the mode that helps fill the overdrive meter, where when the meter is filled, the character has the ability to perform a special move.  Typically, most players have this function set to stoic, where when their character takes damage, it fills the meter.  The more damage they take, the closer you get to filling your meter and having the ability to use a special move that causes the enemy to take significant damage.

Right now, I’m taking the damage throughout these little earthquakes.  And I’m pretty sure I’ve reached maximum overdrive.  (No reference to the movie.)  However, I haven’t figured out my special move yet.  So, I’m stuck with this overfilled meter and waning HP, (or hit points), and nothing to defend myself.  Either, I need a heal or this player is going down.

Away from metaphors, this has been another one in the series of bad weeks.  I wish I could report something back to readers that is inspiring and uplifting.  Perhaps, the fact that I’m still standing, waking up in the morning, caring for my son, and going to work is enough.

Testing the Teacher

I am a music teacher for a local youth program.  And, as many of you are aware, part-time teachers typically get laid off without pay in the summertime.  Thankfully, I was invited back to teach in the summer program.

This was my second week back with about a 50% population of students that I am unfamiliar with.  The other 50% remembers me from the after school program and of that 50%, probably about 10-20% worked with me on the musical production.  That means, only a select number of students interacted with me daily, and know how I operate.

I am not a strict teacher.  I find that loosening up the rules a little allows children to bring out their best creativity.  But, that also means that children who are unfamiliar with me could come to think that I am a push-over.  I am certainly not.  They still had to push me to my limits this week, which incurred the wrath of Ms. Lulu.  My behavioral management consists of a booming voice, followed by quiet time, and if that doesn’t cut it, then there is writing involved.  Nothing like a good old pain in your hand to remind you to keep in line.

It didn’t come without repercussions.  Did I mention that I contracted some kind of virus at the beginning of the month that produced flu-like symptoms?  It also claimed my voice as a victim.  As a music teacher, this is bad news.  I never had it treated because of the giant discouragement to see a doctor.  Every time I have to raise my voice, it goes away again.  Losing my voice is depressing.  I’ve always enjoyed singing.  Now, I can hardly talk.

Worse, I have managed to make at least one kid cry in every class I’ve had this week.  I had to go as far as to walk one of them to the water fountain down the hall so he could get a drink and calm down before he went to his next class.  The poor kid is only five years old.  Whenever children cry, I cry a little inside.  There’s nothing worse than feeling like you hurt a child.

ASD – What it Means to Me

I’ve always said that nothing in life prepares you to be a parent like being a parent.  Truly.  In my youth, I’ve helped to raise so many people’s babies and toddlers, but it was nothing like becoming a mother myself.  Sure, I had the care basics down, but that’s not even scratching the surface.

So therefore, nothing can prepare you for a professional telling you there is something wrong with your child.  Not even if you suspect it yourself.

My son has been in Early Intervention for about four months or so.  I noticed sometime around 18 months that he wasn’t really progressing like other children.  But, the gap became noticeably wide after his second birthday.  There were peculiar behaviors like refusing to participate in activities unless it was on his own terms, lack of eye contact, hyperactivity, intense temper tantrums, and more than occasional unresponsiveness when his name was called.  At his first evaluation, he scored as almost having a total global delay.  It was heartbreaking, but I wasn’t convinced.  His second evaluation was at the Child Development Unit at our local children’s hospital.  And at that time, the doctor suggested Autism Spectrum Disorder, but he was too young to diagnose.  She wanted to see what his progress was in three months of early intervention, and then she’d make a final determination.

I went into this with some denial.  My brother has autism, and my son and my brother are not the same.  My son’s occupational therapist and developmental therapist suggested that he had Sensory Integration Disorder or, as it is sometimes referred to as, Sensory Processing Disorder.  As time passed, I started to see the things that the therapists and psychologists were seeing.  Repetitive motor behaviors, lack of pointing, sensory seeking and self-stimulation, delayed verbal and nonverbal communication, etc.  I suspected it.  His therapists suspected it.  I thought I prepared myself before I walked into that office.  I mean, my son had come so far in three months!

Pervasive Development Disorder Not Otherwise Specified – she said.  Autism Spectrum Disorder – she said.

WHAT DID I DO WRONG?! – my brain screamed at me.  Did I do anything wrong when I was pregnant?  Did I do something wrong when he was a baby?  Is it my fault?  Maybe it’s because I have Bipolar Disorder – he can’t develop normally because I’m so screwed up.  I’m a terrible parent.

Until Death Do Us Part?

I’ve been married for three years and two months now.  Nine months of that was spectacular.  The other 29 months have been generally rocky.  I blame some of that on untreated, and even treated bipolar disorder.  I blame another part of it on the economic collapse in 2008, which caused chronic layoffs and underemployment in our household for 23 of those months.  But the rest?

Don’t get the wrong idea.  Here’s some backstory to his “love” story.  I met my husband nine years ago when an ex-boyfriend introduced us.  Throughout this nine years, we have been best friends.  My husband saw me through four break-ups, two being engagements, two ex-fiances’ domestically abuse me, my party years, my resulting alcoholism, five years of untreated bipolar disorder, and being a roommate twice before we were even in a relationship.  This man watched me destroy my ex’s bedroom in a drunken rage because someone let it slip at a party that my ex had cheated on me while we were together.  And he even covered it up to make it look like I didn’t do it!  So, I can safely say that he has seen me at my very best, and at my deepest, darkest worst.

So, how is it that he couldn’t accept the bipolar diagnosis when it occurred during our marriage and all of the resulting symptoms that surrounded it?

It doesn’t stop there.  He refused to accept our son’s diagnosis too.

The divorce rate when one person in a marriage has bipolar disorder is cited as being as high as 90% in some studies.

The divorce rate when a couple has a special needs child is cited as being as high as 80% in some studies.

Our marriage isn’t on life support yet.  But it hasn’t left it’s sick bed in awhile.  So where the hell does this leave us?  A 170% chance of divorce?

Anytime there is a hiccup in our life, and there are many, we fight.  Fiercely.  Can’t pay the bills?  Go for the throat.  Someone (usually me) is accused of not carrying their weight in their job / domestic duties / parenting / managing finances / etc?  Rip ’em a new one and make it hurt.  I’m not playing the victim here.  I give it back.  If domestic abuse taught me anything is that you don’t deal with that BS.  But if I start a fire, it’s not like I mean to.  However, that’s not the case with my counterpart, who is perfectly happy to pretend like nothing happened after I’m shredded like paper.  And he’s even more befuddled when I’m hiding, curled up in a ball, sobbing my head off.  The best he could do?  Sigh – Why are you crying, again?

You should know why I’m crying.  Again.

On Board or Not – STOP Rocking the Boat!

After the rant my husband went on about how my son’s psychologist is an idiot, how his therapists are idiots (the same people who have made substantial progress with him), and everyone who even remotely thinks that he has PDD-NOS is a ridiculous moron, I told him this.  You may or may not want to accept his diagnosis, but you can’t focus on the label.  It does not change who he is or the way we feel about him.  The services that they’re offering cannot hurt, even if PDD-NOS ends up being misdiagnosed at the end.  We can agree that he has special needs.  So we can agree that he needs services.

This isn’t about how you feel or what you think.  This is about our son.  Either you’re in, or you’re out.

But what I meant to say more than anything is either you’re in or you’re out – for the both of us.