Special Needs Parenting

And so after 15 minutes of trying to set up a blog, I forgot what I wanted to blog about. Why? Maybe I'm motivated by Mommy Wants Vodka. Maybe it's time to laugh at myself. But today, today I'm struggling. It's been a hard two weeks.

I just want to be held and feel that everything will be okay. Good reason to start a blog, I guess - it's going to have to work. Is a blog like an online journal? Can I really type whatever I am thinking?  

That is a scary thought!

Another scary thought: my oldest daughter walked out the front door - not sure I should follow. She just started college classes again - I'm so proud. She is a National Merit scholar, but she's had some anxiety about the real-life situations.

We talked today about finding her a job, any job. It's time for her to overcome some of her anxiety. I'm so proud of her for starting school yesterday, but I want her to take more initiative to help with gas and learn to find her way in the world.

My baby, who's 14, has been asleep after a full day of school - first time he's been in school since first grade. He's now on a great IEP and is back after is third open heart surgery. I'm so thankful for all involved.

He's exhausted from human growth hormone shots and low vitamin D - hopefully that's why he's so tired. His color was good, he was curled up in his little ball asleep.

He didn't make it the whole day yesterday because he was having cramps. My ex didn't order his medication properly, so he was off for five days. Shit kicker? I got a email from the father, subject "FYI, your son missed part of school."

REALLY!?! I sucked it up and did not reply.

My senior is sleeping - thank goodness. Got notice that she won't graduate on time because she's failing. Earlier, today we talked about summer school options and made an appointment with the the appointment

My husband lost his job. He is loyal to a fault on occasion and gets take advantage of in his career field. I've been applying to head hunting agencies for him all day long, in between laundry, making lunches, and scheduling the kids' doctor's appointments. Easy day, right? (wrong)

We've been fighting tonight.

We went the casino and I lost $60 within the first half-hour. I was upset, and went to the car to listen to music and cried for a moment. I didn't want to talk to him, but he insisted, after he'd taken my keys.

The husband is snoring - glad his sleep is never interrupted, that would suck.

Sent happy thought text messages to everyone who I love that might need a "go get 'em!"

Oh FUCK, am I tired.

Trying my hardest to stay positive.

I'm posting my happy words of wisdom on Facebook, but every other moment the phone rings with something. So many tragedies. I really just need a flipping hug myself.

I'd love an actual break, a clean house, to purge. But really, I want to know that all of this is going to be okay, that my daughters will understand life, grab hold and take control. To know that my son will live a full life of happiness, that my husband can figure out the keys to his happiness and success without selling short of his potential.

I just am tired of having to do and be for everyone and not getting a hug at the end of the day.

I will give until the last of me is gone, but it's running out fast.

On August 20, 2001, my first son Benjamin rocketed into the world. As he drew his first breath at 2:50 PM and wailed at the indignity of being expelled from my uterus, I wonder if, hundreds of miles away, a college student named Dave felt something stirring within him. I can't be sure. School was just starting for him; parenthood was probably the last thing on his mind.

But on that day, Dave became a parent. He just didn't know it yet.

Two years later, in January of 2003, his first child, Benjamin, a nearly-mute 2-year old reached up his arms and allowed Dave to pick him up. It was a rarity for Ben to allow someone he'd just met minutes beforehand to hold him. Even more rare was that he bonded with him instantly. Two hours later, safely in my car, he spoke his fourth sentence. "Aw...bye, Dave." Over and over, he repeated that, sighing sadly after every repetition.

Like this:

"Aw, BYE DAVE....*sighs*"

(pause)

"Awwwww....BYE DAVE.....*sighs*"

(pause)

On September 10, 2005, my son Benjamin walked me down the aisle. At the alter, Dave spoke his vows first to our son, then to me. The child who is not related--by blood, at least--to my husband, he is the one who is most like The Daver. Always has been.

March 30, 2007, Benjamin Maxwell became a big brother to Alexander Joseph. Dave slumbered on through my labor thanks to a migraine, but was there by my side to watch as his second son came into the world. Angrier than a wet cat, Alex met his father by peeing on him. I found it apt, considering I would have dragged my numb ass over to kick DAVE'S sleeping ass, had I been able to.

Alex was, as he always is, on my side.

On January 28, 2009, our last child came into the world surrounded by chaos. The girl with curls like a halo (who kicks ass), Amelia Grace, she cast her big brown eyes upon us and nothing has been the same.

Today, April 15, 2010, at 1:45 PM we said goodbye to that part of our lives. No more will we welcome more children into the world, but we will help our children grow and learn about this crazy, mixed-up, wonderful world that we live in.

I'd be lying if I said that I wasn't a little heartbroken to see Dave's vas deferens sitting in those jars, sadly separated from his body. Not because I want any more children, or because I'm unhappy with the decision that we made. It was time to put that part of our lives to bed.

So I'm going to take a quote from my then-two-year old because I don't know how else to end this bittersweet day.

Aw, bye, vas deferens.

It's Christmas Day; I remember how I used to love watching my children's genuine delight in opening their gifts and stocking stuffers. I loved making the huge dinner, supervising and organizing the entire family. The meal would be spectacular and the children would play together without fighting, then..

THHHWACK!

My abusive mother would pick on my abusive husband.

Immediately, the atmosphere changed. Conversations became muted whispers and then, my drunk older brother would say something rude or outrageous and cap it off.

Now, my children are grown and have excellent educations. The narcissist I raised (as opposed to the one who raised me or the one I married), has a prestigious job in DC. She was more than a handful to raise.

I didn't know I'd been fighting narcissistic personality disorder my whole life. I just knew something was "off" within these three people; I fought them to within an inch of my brain with alcoholism/addiction, anxiety, fear, cajoling, religion, codependency, divorce, and finally, recovery.

Thank God for recovery and a plan. Gotta have a plan or I can't navigate my life. Other people have always given me the plan - I just waited for it and then reacted to each person the way I thought they wanted. That never seemed to work. Matter of fact, it seemed to complicate things; somehow making it worse. I always paid the price. Not to whine - I was punished without knowing that I was a victim.

The best way to ferret out a narcissist is they clearly identify the problem at hand. They don't know this is a compulsion and a major "tell" they can't seem to control. I learned early and hard that the people who think everybody else is lying is, in fact, the liar.

Or, the people who believe everyone cheats (at least some of the time), are in fact, CHEATERS. These people clearly identify themselves in personal or workplace relationships. Narcissists are rapacious and merciless; they will suck us dry; stepping over the dried husk of our souls onto their next chosen victim.

I've lived it, I married it, and I raised it, narcissism. I'm recovering in my narcissistic (with Munchausen Syndrome) psychopathic mother's home until I can get my shit together to "go back where I came from," she reminds me thousands of times each day.

So back to the title of this post: Christmas Day.

You'd think, given her preoccupation with convincing her fellow church members, doctors, sons, my children, various random people that cross her malignant path, that she is the Mother Teresa of this town, that Christmas would be a special time of year.

She took great delight in singing in her church's choir in an ecumenical service. She bragged about it all over the neighborhood while complaining loud and long that she's the only one who can read music; she has to "carry the tenor section."

While she's saying this, I'm thinking, "Shit, I wouldn't tell anyone that I'm "carrying the tenors." I'm female!"

I've finally figured out that my mother loves, LOVES, weird and perverted attention. That's her narcissistic supply. Her personal favorite is to be outrageously socially incorrect at the store.

In the family, she'll stand with her back toward your face and bend over at the waist. Most of the time, she's naked underneath her house dress, so you get an up close and personal view.

Outrageously sexually abusive.

When I was 14 or 15, she'd "drop" me into potentially sexually destructive situations. I was clueless and terrified why grown men were treating me like I was coming onto them. She was always close enough to see the action and NOT RESCUE me. I was so shocked; scared by the adult males behavior, it never occurred to me she didn't do a thing.

When I'd tell her later, she always laughed and said, "Oh that's just the way he is, don't let it bother you." I'm still bothered by it.

When I finally figured out what she was doing to me, it enraged and empowered me. She was punishing me for being slender and blond with blue-green eyes. At 15, I didn't know or understand the implications of a parent who deliberately placed her child in sexual danger to get her kicks. She enjoyed it. Every time I brought it up? She enjoyed it all over again.

Christmas is almost over.

I am estranged from my children, cut off from my friends - my five adult brothers don't talk to me.

I've never been happier. I've finally pinpointed the reason my life has been a sharp turn and it wasn't me. I've been a victim of my narcissistic mother. How could I know? There is no shame in not knowing, not understanding why my life was like that.

Today is the day we celebrate the gift God sent us in the form of a baby, The Christ, Jesus. I don't care what your religion is or even if you've got one.

This is the best Christmas I've had in a long time, because I found this website.

I thank God for you, The Band.

Here at The Band, we believe in kicking stigmas to the curb, flinging glitter, and shining a light into the dark. And now?

Your bandmate needs a sounding board.

It's time to Ask The Band!

I've been lurking around here long enough - it's time to actually share something.

I have my own issues, but those are for another day and time. Today is about my brother.

Technically, he's my step-brother, but I typically don't think of him as such. He's 12 and an awesome kid.

He is also Autistic. 

He was diagnosed late, and initially the (school assigned) psychologist said he was high functioning Asperger's. The diagnosis was accepted. My step-mom and dad have dealt.

However, it hasn't been easy, especially when it comes to school. His school, quite frankly, did not give two shits about him. Yes, they had the IEP and all that, but the goals were only there on paper. Rarely was anything other than meeting with the special education teacher implemented. If he didn't understand something and had a meltdown in class, the teacher let him. He would run, he would sleep, have fits. They didn't care. Teachers locked him out of class. One tried pulling him away from a table and when he resisted, she let go and he fell. 

My step-mom has fought with them endlessly. Several doctors have recommended he have an aide/TSS with him in class. The school has refused. My step-mom and dad pulled him out of school (after having to fight with the school to get him out) and started cyber-school. Has he improved? By leaps and bounds. Where he was failing classes before, he is now a B average student with A's in the subjects he loves. He even did well enough to get into GIFTED science. Clearly he's not a problem child. He just needs help.

After all this, they had him tested again. That initial eval of Asperger's? Way off. Autism, borderline of non-functional. More doctors recommending he have an aide if he goes back to school.

My step-mom wants him in a physical school. He misses being around other kids; having him home all the time and having to do school work at night takes away time from my other brother. He is nearly ten years old and incredibly bright, but acts out to get attention.

My brother is literally just about the only thing my dad and step-mom argue about. She thinks he's too hard on him. He thinks she lets him get away with more than he should. It's hard to watch.

They have found a public special needs school in their area. The school he previously attended would pay to have him bused there. He loved it when they took a tour. She had another IEP meeting. They still refuse to let him have an aide, even with three doctors saying he should. Granted, the ratio for this school is about 10:1, with a paraprofessional in the classroom, but he has a horrendous time staying on task and needs constant prompting. He needs help in a classroom setting. She now has less than two weeks to file an appeal and can barely get help to find out HOW she has to do so.

I am just so sick of getting these updates from her on how the school system has failed my brother yet again. They care more about testing numbers than his actual education. I went to an IEP meeting with her and my step-mom brought up cyber-school and the one teacher IMMEDIATELY brought up "Would he still be part of my testing scores?" My fiance was there, too. His degree is in special education. He almost lost it.

I just wish I could help more. I've joined the newly-formed Autism Speaks U club on my campus. But I'm in Pennsylvania; my brother is in Tennessee. I can't help the school system work better when they don't care. I just want other people to see my brother for who he really is, and he is smart. But too many of these people see just another "bad kid"; they don't take the time to learn what Autism REALLY is.

Band, what can I do to help people understand and care?

Since my six-year-old son Jack was diagnosed with Leukemia in January, there have been both sweeping changes and little changes in our life. Some are harder to describe than others - some more subtle while others are glaring. Sometimes aspects of his personality that were there before might come out in a more noticeable way, or they might be more hidden, protected. Jack is still himself, of course, but the version of him we are living with now isn’t as steady or balanced. I often wonder how much of him is changing permanently because of this experience.

I’m not sure I can still describe him as a “happy-go-lucky” kid, for instance, which would have aptly described him last year.

Now his mood can change on a dime, and he is VERY sensitive. He is quick to cry, quick to anger, and quick to feel defeated. No amount of good-natured teasing is allowed. A simple behavior correction or disagreeing statement will send him running to his bedroom with a shout of, “I’m going away from you now!” If he gets angry, he’ll growl and even hit himself in the head.

After months of isolation from other kids, Jack is great at interacting with adults. Often it seems he prefers it; after all, adults behave less erratically than kids and are actually more likely to give him what he wants. Other kids require more negotiation, more effort to communicate, and a jumble of emotions, including frustration. What began as a preventative measure against illness has led to Jack avoiding socializing with kids if he can help it. It even takes cajoling to get him to attend a birthday party.

With that said, it can be difficult to interact with Jack due to his lack of attention span. He has so little focus. Questions must be repeated several times, and he needs constant reminders – within seconds of each other! – to get him to do anything at all. He is distractable, flighty, and more forgetful than ever.

He is still a prolific little artist and those abilities have not suffered, but any math he knew from Kindergarten has eroded (although we’re hoping this can be regained fairly quickly). Most 'processes' are difficult for him. His interest in reading has lessened, as well, likely due to headaches and side effects from chemotherapy. Since he is easily frustrated, he typically doesn’t stick with new things long enough to improve at them.

He’s been a fairly thin kid since he reached the toddler stage, but now he has ZERO muscle definition. He is skinny as can be – the baby fat is gone, too. His eyes are a little sunken with shadows, and his skin is so, so dry all the time. Despite continuing to go on hiking adventures with his dad, he is quickly winded with any activity – he no longer runs everywhere or challenges us to race to the door.

Not surprisingly, he eats like a bird (since the steroids were left behind) and his diet is limited. The full array of things he will eat includes: carrots, cherry tomatoes, cheese, salami, rice, grapes, apples, edamame, chocolate, waffles, pretzels, seaweed and milk - and he rarely finishes anything. No more chicken. No more fish. No more peanut butter and jelly. Definitely no yogurt! He’s even less likely than he was before to try new things, too.

It’s not all bad, and things could definitely be worse. Sure, everyday things take longer, are more frustrating or have more serious or worrisome implications, but our life is not exactly lacking. Nevertheless, there is no part of Jack's life - our family's life - that has not been affected by all that cancer has brought in the last nine months.

I'm enormously grateful that Jack is HERE. I'm thankful that he can still smile. He’s growing, he’s learning, he’s still a spectacular kid. I can hold him and we can laugh and giggle together.

No matter the battle that is raging in the background and diverting his attention away, he is still my sweet, Scooby-Doo-loving, alien-impersonating, imaginative and fierce little boy. Cancer can't take away his spirit.