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.