Riding in Cars with Boys Again

It set him off.  He said, “And now there’s going to be people we don’t know traipsing all over our house again, judging us.  And there you were, making all of these decisions without me.”

Yesterday, Xan and I attended an evaluation for our son, Beast, for entrance into a special preschool for children with special needs.  Our son was diagnosed with Pervasive Development Disorder – Not Otherwise Specified in June 2011 while he was receiving Early Intervention Services.  For more information, visit the original post, “Riding in Cars with Boys”.

Needless to say, the evaluation didn’t go well.  They never really do.

I was furious.  I retorted, “I have to make these decisions, because you don’t.  You haven’t been there up until now.”

“I want to wait and think on this.  It’s happening too fast.  I can’t process it.  I don’t think we should start to seek services until November at the earliest.”

I went through the roof.  I threatened, “If you stand between me, our son, and getting him help, I promise you that I will leave you.  He needs these, and I will do anything to get him there.  It’s been too long already.”

“Fine.  Then leave,” he said shortly.

I stated, “I don’t want too, but –“

He interrupted, “No, I don’t want to hear it.  You leave then.  I’m done here.”

There was a long period of silence, where I felt the schism and then the great void opened up.  Something ensnared me, and pulled me by the ankle faster and faster toward the Great Below.  I clawed and scraped, desperately trying to hold on.  But, it was no use. I gave up.  I was dragged into The Hollow, where everything went black around the edges, and the rest of me was numb inside.

It’s as if I were suddenly disembodied, sitting in the back of the car with my son, watching the whole thing play out.  He went on about how this was such a danger to us, and I blankly told him that I didn’t care.  I was beyond caring.  I had a mission, and it no longer involved any real part of me.  It required my participation, in the very least.  Only a presence, just a husk of a woman as a placeholder for what was and what might have been.

“You said we needed a social worker.  I agreed.  Now we have one,” I argued flatly.

“No, this isn’t right,” he angrily disagreed, “I don’t need someone in my own house judging my parenting.  Judging us, wondering exactly how fit of parents we are to raise him.”

I struggled, “And what do you think is going to happen if we don’t get him services?”

“I don’t know, but it has to be better than this.”

I finally found my gusto and returned to myself for a flicker of a second to drive it in, “I’m not going to stand by and let my son turn into a dangerous retard, and end up in a special school, because someone was too afraid and disengaged to get him help!”

“What, like how you stood by when you were going through whatever you were going through?”

It hit me like a wrecking ball, shattering every bone in my body, every bit of what little cohesive world I had remaining.  I couldn’t say anything in return.  The knife had to be sturdily wedged between my ribs, and my life’s blood gurgled and oozed out.  The life drained from me, and I was once again driven backward, ears ringing violently with silence.

And then there was this great nothingness that emanated from within and saturated the air around us.  Instead of choking, I breathed it in eagerly, letting the numbness wash over me.  I was already far over the Precipice, eyes wide open, watching the ground come at me at the speed of sound.  I would end it all in one tiny little snip of an already fraying thread.

We sped over the hills and the valleys of our hometown, and I gazed out the window to stare at the autumn-colored trees as they passed.  I’m in the autumn of my existence, a voice narrated, echoing the caverns of my empty mind.  I watched from outside myself as he glanced over at me.  I never met his eyes.  I just continued to stare, the whole world muted into something unintelligible.

I could hardly make it out, “I’m sorry.  I’m just so scared about what this means for him.  Today, when I saw him being evaluated, I see an entirely different boy from the little boy I see to be my son.”

“I understand,” I murmured almost robotically.  In truth, I did.  He went on to explain his position, but the world remained too washed out.  The sound was distorted by static.  He went on to describe our son’s awful behavior during our session, and all I could manage was a whisper.  “Now you know how I felt when I did this alone.”

He had finally come to understand my position.  He was finally seeing the seriousness of the situation, and the dire need to get our son the help that he requires for his special needs.  “I’ve seen this significant backslide in the last few months.  He was doing so well.”  But, I was too exhausted and disconnected to explain it again when he asked.  I provided minimal answers.

The apology came too little too late.  If only there was an answering service for when I checked out completely.

It was completely unfair to him.  It was unjust to let him continue to sit in the dark while he was obviously trying to come back into the light, where truth and hope awaited him.  But, I couldn’t return when the threat still existed.  I had been knifed into oblivion, my soul spilling out onto the jagged rocks beneath me.  If I came back too soon, the voices would emerge and tell me lies.  Sweet, angry little lies, and play me like the fiddle that I am.

I slipped a Lamictal into my mouth and took a big swig of the strange vitamin water I picked up at the convenience store.  My soul is already partially deadened.  I might as well keep going.

It’s the only way.  It’s the only way to cope and deal with what I have at hand.  I may have lost my ability to remember, but maybe it is better this way.  Maybe, I have to forget the pain and the fear in order to switch tracks.  Maybe, I have to forget myself completely to surrender myself to the others.  Either way, I know what I have to do, even if I don’t know how to go about doing it.

Couples fight.  Even the best of couples.  We don’t see eye to eye, and we’re often to proud to admit to the other when we’re scared and vulnerable.  I’ve learned that over the last year.  We’re not supposed to be perfect, because we are imperfect beings.  Our marriage is perfect because it is imperfect.  And I know that we’ll get through this together.

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The Friday Confessional – Carry on My Wayward Son

My son, Beast.  He’s . . . spirited.  I’d love to leave it at that, but this is The Friday Confessional.

I love my boy to pieces.  But, I knew he was going to be a handful long before he was even born into this world.  I had a rather difficult pregnancy.  And he hilariously went silent and still whenever anyone tried to “feel the baby kicking”.  While he was on the inside place, he managed to kick himself to a position where he was constantly ramming his head into my cervix.  He accidentally got his foot stuck in between one of my ribs and struggled wildly to get free.  Once he was free, he did it again for what I can only consider as fun.  People don’t seem to think that fetuses can have emotions or fun.  I know differently from my son.

My son was born with this particular temperament.  He was a lazy and impatient nurser, who refused to nurse and preferred the bottle.  That’s my son.  Obstinate beyond all logic.  When that boy puts his foot down on something, that is the word.  And we clash at every point.

It’s not entirely his fault.  In June 2011, he was diagnosed with Pervasive Development Disorder – Not Otherwise Specified.  In short, that puts him on the higher functioning end of the Autism Spectrum.  I wrote:

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.

That was over a year ago.

In truth, I’m in denial.

The battle wounds are still fresh from my youth.In those days, I found I was the most comfortable in the tiniest of places, completely unlike today, where confined spaces are cause for the air being vacuumed from my lungs, and my brain to catch fire.  Those were only places I recall being safe; wedged between the sink and the wall, tucked in the back of a closet, curled up in a cabinet under the sink.  Those places were quiet and dark.  The only places I could find serenity and safety.

I remember instances where my hulking brother would hunt me down. Those were my go-to places.  As long as I took refuge when the violent fits started, I had a chance of being safe.  He may have tried hard to swipe at me, but I had the advantage.  I was a small girl who could ball up and disappear from this world.  In those places, I could be safe from brutal, unprovoked attacks.

Out of sight is out of mind.

And out of mind it out of sight.

The injustice perpetrated on me went far beyond that.  That was considered excusable behavior due to my brother’s condition.  I was told things like, “He can’t help himself, but you can.”  I never did anything to purposefully antagonize him.  I feared him.  And when my parents would practically reward his behavior by conceding to his every desire, I hated him.  Even to this day, I still hate him for all of the gifts and attention he siphoned off from me.  I was a model child with straight A’s and glowing reviews from teachers.  He was a terrorizing monster.

When my son was diagnosed in the same spectrum, I was crushed.  Some parents can say they were blindsided by the diagnosis, but I certainly was not.  I saw the signs long before a doctor had to confirm them.  I was just hoping that there was some alternative explanation.  I don’t love him any less.  But, in truth, I see him differently.  Maybe differently than a parent should.

I remember being pregnant.  And I remember having serious talks with the sky boss.  I pleaded, “Please, God.  Please don’t let my son have autism.  I can’t handle that.  I wanted to deny it.  I would tell people how high functioning he is, and how his developmental deficits were not that of a child with autism or aspergers.  When he was denied entry into a regular preschool because they aren’t equipped to handle him, I was crushed again.  My hopes that he was developmentally appropriated were dashed.

The truth is, my son is disabled.  And he needs my help, now.

And here’s the worst part of my confession.  I have a certain amount of resentment for his condition.  I find it difficult to interact with him appropriately.  When he acts out aggressively, I meet him with a certain amount of aggression of my own.  I refuse to be terrorized by my own son, a huge, strong little four year old.  It makes me feel small and scared every day of my life.

There is rare gratification.  Most parents have children that will play with them.  My son tries, but he can’t seem to make it happen.  I watch him struggle with basic things.  I feel like a failure of a parent, because he’s not potty trained and mostly refuses to wear clothing.  I resent him when I am cleaning up bodily fluids he carelessly threw everywhere, like a little animal.  And I hate myself when I liken him to a puppy in my mind.

But, there a moments where he looks me dead in the eye and says things like, “Look Mommy, out the window.  Look, the trees!”  Or, the day that we were outside and he scraped his leg.  He straddled me and we held each other, rocking for awhile.  Then, he grabbed me by my shoulders, held me away to look at me and sang, “I yuv you.  You yuv me!”

There are those rare moments of hope that I hold to.  Even in my darkest hours.

Up For Some Blog Tag?

I don’t know about some of you guys, but I’ve been coming up short in the writing arena lately.  Not because I don’t have anything to complain about (I don’t), but the Abilify is making my head unusually empty.  So, I’d like to toss around a game of tag!  Enjoy!

Da Rules:

Write ten facts about yourself, all true, and then pass it on to ten people.

Da Facts:

  1. I don’t like red meat.  I really don’t.  I am not a big fan of meat in general.  Except cheeseburgers.  I love cheeseburgers.  They are my downfall every time I attempt vegetarianism.
  2. I sleep in my contacts.  I’m so vain.  No, just kidding.  I just really love waking up and not fishing for a pair of glasses.  There’s something beautiful about waking up and being able to see the world without some plastic foreign object on your face.
  3. I live in Pittsburgh.  For those of you that might not know, I live in the City of Champions.  Most livable city in the US.  Six Superbowl Rings.  Four Stanley Cups (that I know of).  Jaywalking is a birthright.  The most disgusting rivers you will ever see, all three of them.  So bad that Bruce Willis said he will never, ever go in them again.  Most cloudy days of any major US city.  And more sets of stairs than San Francisco, believe that or not.  This city is the best.
  4. I was not born in Pittsburgh.  Unlike the rest of the natives, I was not born at Magee Women’s Hospital.  I wasn’t even born in this city.  I was actually born in a little town outside of Atlanta, GA.  I was raised there for several years and then hauled to Pittsburgh.
  5. I occasionally have a southern accent.  If I am drunk enough, surrounded by southerners, or actually in the south, I will slip into a southern accent.  The more time I spend in the south, the harder it is for me to get rid of.  I went down for a week for my honeymoon, and couldn’t get rid of it for three weeks, much to my husband’s disgust.  He’s one to talk; he has a mix of a Pittsburgh accent and a Brooklyn accent.
  6. I speak three languages.  Good English.  Bad English.  And Pittsburghese.  Look it up, it’s a real thing.
  7. I play more than one instruments.  I play most instruments in the woodwind family, and some in the percussion family.  I do not play any strings or brass.  It’s just not in me.
  8. My hair is naturally blonde.  Just not as blonde as I dye it!
  9. My son has Autism Spectrum Disorder.  I know I don’t talk about it often, but my son was diagnosed with Pervasive Development Disorder – Not Otherwise Specified in May 2011.  My brother has classical autism, so it was a hard diagnosis to take in.  I couldn’t help but think to myself, “Not again, God, I can’t handle this my whole life.”  The good news is that he’s coming along just fine, though he’s still delayed.
  10. I am on five psychiatric medications.  Lamictal, Abilify, Xanax, Wellbutrin, and Temazepam.  I hear that’s actually pretty tame in comparison.

Now, here’s the tagging.  If you come upon this, then TAG, YOU’RE IT!  I mean, if you really want.  I’m just not going out of my way to tag others today.

Sensory Integration Dysfunction and Psychiatric Disorders

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?

Riding in Cars with Boys

(Originally written July 11, 2011)

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.  Xan. 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 Beast.) 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 Xan 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 Beast’s evaluation, addressed: To the parents of Beast, Pittsburgh, blah, blah.  I told Xan 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. Xan 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 Beast’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 Beast’s 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 Beast, 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 Beast 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 Beast.  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 Beast 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 Beast 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 Beast 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?