Autism is…Not an Excuse to Hurt or Kill Your Kids. UPDATED.

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“Autism is…Not an Excuse to Hurt or Kill your Kids” was originally published on April 4, 2012 by The Domestic Goddess (thedgoddess.com). Reprinted with permission by Marj Hatzell, author of The Domestic Goddess. All rights reserved.

The past few years it seems as though there has been a rash of autism-related murders. The media is quick to pick up on a story of a stressed-out parent who “can’t take any more” and martyrs themself and kills their child to “put them out of their misery.” Then recognition on the Internets, then massive dialogues, and then comments from people saying, “I feel so badly for the mother/father/caretaker” or “It’s sooooo hard, I understand.” Guess what? It IS hard sometimes. Very difficult, in fact. And often, it downright sucks. The sleepless nights, the poo/pee all over my house, the constant cleaning, the sleep deprivation, the house in various states of disrepair, the appointments, the lack of support, the lack of funds, cancelled vacations, no vacations, public meltdowns…all so very, very stressful.

It’s still wrong.

If any other parent murdered their child there would be vigils for the child, stuffed animals piled and candles lit. Schools would hold little memorial services. Churches would have special services to allow neighbors to grieve together.

Would people be angry and upset if a parent killed their blind, deaf, Down syndrome, wheelchair-bound child?

You betcha.

So why aren’t they angry about autism? Why aren’t vigils and protests held for them?

Maybe because the parents of autistic kids tend to kill themselves when they murder their child. Or at least attempt it. They make it into an act of desperation, a final cry for help. They “snap.” And neighbors always say, “S/he was so stressed out. They needed help. They said they couldn’t do it anymore.” Because the autistics were so difficult to deal with.

And then you get comments like this.

Guess what?

IT’S STILL WRONG.

We can dissect this as much as we want, point fingers of blame, blame lack of social services, blame budget cuts, blame lack of resources…it’s still wrong.

And the fact remains that people continue to murder their disabled children. And others condone it, excuse it, support the stressed-out parents. And no one feels badly for these poor souls, these children and adults,murdered at the hands of the very people who have pledged to love them unconditionally, through their lives. I’ll be honest. I don’t give a rat’s ass about their parents once they’ve made that decision and crossed that line. They don’t get to choose whether their child lives or dies. This is about a lack of respect and acceptance of the disabled. It’s about considering disabled members of society lesser-than their “normal” counterparts. You can tell a lot about a society by the way they treat their most vulnerable members – their disabled, their children, their elderly. And I’m sickened and saddened for ours.

I’m doing this for George, Katie, Rylan, Benjamin,William, Zain and Faryaal, Jordan, Daniel and sadly more…

So go ahead and call me smug and superior. Call me judgmental. Accuse me of vilifying others or casting stones. I just happen to think that killing your child because they are autistic is wrong. And I’m entitled to my own opinion. This, my friends, is why awareness is NOT enough. We must have acceptance. This is why negative campaigns by huge, corporate charities are dangerous. This is why ditzy blonde ex-playboy bunnies are causing issues. Because people are afraid of autism. They hate it. And hate causes murder.

ETA: I wanted to add some resources for people who may need help. If you are at the end of your rope, please, please, PLEASE call someone. A friend, family member, clergy person. Dnt have those? Call 1-800-4A-CHILD (child abuse hotline), contact Your local Autism Society of America group or even contact Someone through Autism Speaks. Someone can help.

The Sometimes Ugly Truth

I find I’ve been censoring myself lately, to a certain extent. I don’t say what I really want to say because I work so hard to show people that you can live a life like mine, with challenges and Adversity, and still be happy and content with your life.

And I don’t want to lie, because I’m a painfully truthful person. You can blame Big Harve.

But I also want to keep it real, Autism style. I want to be truthful and not make people think that we are to be pitied or vilified. Or make them hate autism. Or make them hate my child. Does that make sense?

So in the interest of keeping it real, I’m spilling the current ugly truth.

The truth is the past six months or so I haven’t felt like posting much. My emotions get in the way and I stare at the screen and I want to be funny because making people laugh is FUN. But I can’t. I don’t feel funny.

I’m mourning the loss of my father. My child’s life is in chaos. My other child is hanging on by a thread. My husband The Guy I Live With is frustrated because he likes to fix things and help people and he doesn’t know how to fix it or help them. And I’m just plain ole exhausted. To the nth degree. Times infinity.

Bug Boy’s OCD is very difficult to manage at the moment. He’s socially withdrawn and is having trouble sleeping. He cries A LOT. And Bugaboo’s behaviors have increased one hundred fold. Literally. The self-injurious behaviors are at an all-time high. He has started aggressing again, and that is not common for him. He’s angry. He’s having mood swings. We’re walking on egg shells. We’re worn out. And we don’t know how to help him.

I’ve noticed a pattern. This happens EVERY SINGLE MARCH. Every one. I’ve looked back over the past few years (see? There IS a good reason to blog!) and there’s a pattern. It’s a sh*tty month for him. And us. And Bug Boy. There’s something difficult about this time of year. Vernal Equinox? Daylight Savings? Full Moons?  All of it. Allergies, too. It’s just his absolute worse time. And we have it in the fall, too, but at a lesser extent. This is the time of year we scramble, see multiple specialists and therapists, adjust his behavior plan at school. This is the time last year that I called my sister in tears and asked for a magical weekend away.

So yesterday I contacted my sister and brother and asked for another magical weekend away. Ahem.

We have no idea where we are going but we have a weekend picked out in three weeks and I’m salivating just thinking about it because SLEEP. AND NO ONE TOUCHING ME WHEN I SLEEP (Well, I might let The GUY I LIVE WITH). And also? Food. And someone else cooking. And maybe some spa pampering. Anything. Heck, I’d go to the hotel at the airport and order takeout, I’m that desperate. The airport is five minutes away. I’m hoping to go a LEETLE farther away, however.

The good news is I am confident that with this break (THANK YOU FAMILY THANKYOUTHANKYOUTHANKYOU) and the boys’ new therapist/psych, we should be having an upswing soon. We are also tweaking diet and meds. Turns out one of the meds they are on? Is making their symptoms worse, or at least can. So don’t let the door hit you in the ass, medicine. We’re going with a tried-and-true one they’ve been on before but didn’t seem to need anymore. I’m looking forward to sleeping more soon. So is The Guy I Live With. And the dogs, I’m sure. And the kids? Well, it goes without saying they’ll be happier if they sleep. It’s an interesting phenomenon that they tend to get WORSE with LESS SLEEP. More hyper on less sleep? OMGWTFBBZGORILLAZ.

So the countdown is on. Three weeks. Until our weekend.  I think I can, I think I can, I think I can…

Two Funerals

Dad and Uncle Bill.

Back to back they faced each other, drew their swords and shot each other. Two deaf policemen heard the noise and came to kill those two dead boys.

One night, during the day, I was all alone with ten men, in an empty truck full of bricks and I ran over a dead cat and killed it.

Last weekend, as my husband prepared to go out of town for the week, I got word my Dad’s brother passed suddenly on Saturday.

His brother was ten years his junior. He had flaming red hair and a red beard and was a jolly guy. Sure, he was a grumpy pants like my pop sometimes but honestly? The two of them were like giant teddy bears. Big, tough, bearded guy on the outside that intimidated people with their booming voices and wild eyes. Gooey, marshmallowy, sweet, loving men on the inside.

If there’s one thing I can say about my Dad’s family is that they love. And they are loved. They know what true love is. They have it unconditionally. It’s one of the things I like most about my Dad’s family. No matter how long it’s been since I’ve seen my aunts, uncles, cousins it’s like we were never apart when I do see them. We may not be fancy folk but we sure do love one another. Really and truly.

I’m fortunate to have that, I know. Not everyone grows up with an open-door policy and a family that would drop everything in a second to be there for you. I know it is rare. And while it isn’t Ozzy and Harriet and we all have our moments of “fun” and conflict, it’s an amazing group of people.

I last saw my uncle Bill at my Dad’s funeral and at his bedside the day before he died. It had been a few years, I’m ashamed to say. He bolted in the door of the ICU, rushing in from the night shift he was supposed to work, I gathered by the fact that he was in his work shirt. I know he and my Dad had their moments and I think they were in the midst of a “not exactly but sorta-kinda speaking” moment. But they loved one another. And when we contacted everyone and told them my Dad wasn’t expected to make it through the night (and that we were surprised he was still hanging on) they all rushed to be there. And while my Dad passed, his children and siblings and wife and a few sons-in-law and a few sisters-in-law sat by his bedside, kept vigil and refused to leave.

It was a tiny room. There were probably twenty-five of us crammed in there. Uh huh.

I’m glad we had those moments with my Dad. Because we came together as a family, it allowed us to lean on one another and we were able to grieve together. I was able to hug my Uncle Bill and console him when his big, burly face was tear-stained. I was able to hug his wife and thank them for coming.

My Uncle Bill wasn’t fortunate enough to have that.

He wasn’t feeling well Saturday, told his wife he was going back to take a nap and she couldn’t wake him later. It was sudden. Probably a heart attack. We don’t know yet.

He didn’t have children. Well, technically. He and his first wife split and there were no children but then he remarried and his beloved wife had four children when they married. And then grandchildren and recently great grandchildren. And they adopted him as their Pop Pop. And they loved him and cared for him. He told them the same jokes he told us growing up. And he rough-housed and teased just like he did with us. And he dressed as Santa for the babies, just like he did when we were wee ones. At his service the other night I listened as his stepsons, step daughters, step grandchildren all got up to talk about what a tough nut he was to crack. But they were his family. His true family. His children and grandchildren. He loved them dearly.

It was the funnest funeral ever (no, really, it’s a word, look it up). No really. We giggled as we cried as person after person told their stories. and shared memories. They told his jokes(which were my Pop Pop and Nana’s jokes). They shared memories we also shared. They placed  his Santa suit on his coffin, the very same one he wore when we were babes. He was laid out in his trademark plaid flannel shit and suspenders. And had we had a viewing for my Dad, we would have buried him in his trademark plaid flannel shirt and overalls.  They were two peas in a pod, those two. Walking in there and see the casket brought back a flood of memories. It was like seeing my Dad there. I never realized how much they looked alike. I never realized how much they were alike until everyone stood to speak of his gruff teddy bear-ness.

It was really hard to get through.

Two funerals. Two brothers. In such a very short amount of time. And my remaining uncle and two aunts looked weary, sad and tired. So unexpected. So painful.

And here I have sat all week. Missing my husband’s comfort because he’s out of the country, staring blankly at this computer screen wondering what to write. As you can see, the words kinda flowed out finally, disorganized but truthful. I’m a mess (0f course, the massive sleep deprivation isn’t doing me any favors). It’s like living through my Dad’s all over again. Without the cramped, smelly room part. And more food (because we Pikes no how to eat, yo). But the same family, the same pain and sadness in their eyes, clinging to each other to try to heal.

One of my family faves. Uncle Bill snoring away, everyone else gathered around him. Barry Gibb, I mean, Uncle Bob in his finest seventies attire.

 

The Name of This Post is Secret

Every day since last week I have been sitting here, staring at the screen, wondering what to write. I am going through something fit now, not exactly sure what it is. Perhaps since things are sort of in a holding pattern I can finally sit and process everything that has happened on my life the past six months or so.

I have been feeling overwhelmed for months, like I can’t catch my breath and can’t seem to catch a break. I have felt for a few years that I can’t endure another _______ (insert rotten thing that happened here) and then something gets heaped on me and I suck it up and deal and push through it. Onward and upward,right?

This is hard, yo. I know I say it’s just my reality but the truth is it is very hard. The constant sleep deprivation, having to pass up on things that make me happy. It’s hard. It’s the most difficult thing I have ever endured, next to my father’s death. And speaking of that, this week it was three months. Ninety days since I sat and held his hand and said goodbye while his heart and brain and kidneys slowly shut down. Ninety days since I had to watch my mother, my siblings and his siblings say goodbye in the most painful way. It sucks and I hate it.

Perhaps it is spurred by the fact that I am hormonal (thank you, stupid perimenopause!) or because I have been back and forth to that very same hospital a few times in the past few weeks while my mother has undergone testing, appointments and a procedure. Perhaps it is because. Stepped off the elevator onto that same floor in the same hallway and felt it wash over me. The sadness, I thought it was slowly going away. And yet somehow it is just as painful and raw and I feel like I am starting the grieving all over again.

Maybe it’s because I never allowed myself to grieve. I mean, I am trying. But I have a TEENSY bit on my mind and I’m ever-so-slightly busy at the moment, you know? I mean, it’s not like Bugaboo is up all night, having manic episodes and Bug Boy is having difficulty controlling his OCD or anything. And it’s not like I have had to make a gazillion appointments to handle medical stuff with the kids, get on massive waiting lists and pay super-high deductibles or anything. OH WAIT! OPPOSITE DAY! I TOTALLY DO.

I love my kids. I love my husband. I love my dogs and I live my life. I am happy and fortunate and grateful for all that I have. But I need a damn break. And I don’t mean a night out. I need for things to let up just a tiny bit. Is that too much to ask, universe? And then maybe a few days away from it all.

Funny. This is about the time last year that I completely lost it and went away for the weekend with my husband. Hmmmm…

Go Ask Alice When She’s Ten Feet Tall. Again.

You know, having an Upper Respiratory and resulting five week cough wasn’t enough. I needed more on my plate. I needed my whole family to get the flu the week after Christmas when they finally all went back to work or school. Bugaboo didn’t miss enough school from that or Christmas break so he needed to get a stomach virus last week and then he needed to share that virus with me. He also needed to have four day weekends three weeks in a row, and not a full week of school since Thanksgiving.

It’s opposite day. Again.

Look, Universe!  Go pick on someone your own size!  I buy organic, volunteer out the wazoo,donate to many worthy causes, am fairly humble and never say no to people in need. So I have to ask you, Universe: WHISKEY, TANGO, FOXTROT!

Wanna know what’s fun? Your kid puking and having the trots for twelve hours. And changing ten poopy pullups, pure liquid, running down his legs. And he’s nonverbal. And he can’t tell you what’s happening he just stands there with a look on his face. AND!  STRINGS! COMING OUT!  Better out than in, right?  But wait! There’s more!  He woke up in it (puke and poo). From head to toe. And no I’m not kidding.

And it gets better.

He was fine in twelve hours. Me? Three days. And then I got the genius idea to go on a  carousel with him and ride it twice the day I finally got back on my feet. Hello, vertigo! It’s been too long since we’ve met last!

But the icing on the cake? Bugaboo has been having some weeeeeird behavioral symptoms. As in, the sleep thing and the behavior thing is kinda adding up to something I am suspicious we are revisiting. Stuff I don’t want to ever have to see again.

Between the antibiotics, antivirals, vitamins, cough meds and saline I feel like we are running a pharmacy. And that doesn’t include the regular daily so-my-kids-don’t-hurt-themselves medications.

This is where I admit I’m glad we have awesome access to awesome health care and feel super-duper fortunate.

Allowed to Live

Disclaimer: While I normally keep it PG-13ish here at Casa DG, I’ve been processing the following for a few days and I’ve run through a plethora of emotions. Don’t say you haven’t been warned. PC? Against cussing? Don’t read. Just sayin’.

If you are local to Philly or in the Special Needs world, chances are you’ve heard of a little girl named Amelia.  Amelia was born with a genetic disorder called Wolf-Hirschhorn Syndrome.  This disorder carries many medical side-effects, developmental delays, you name it. One of the most daunting that Amelia is facing is a kidney transplant.

Amelia is three. THREE-YEARS-OLD.  She has to go through a transplant, y’all. Do you know anything about transplants? Well, you can only get 2-3 of them in a lifetime and that’s if you don’t go through rejection. The transplant lasts something like 15 – 20 years and again, IF YOU DON’T GO THROUGH REJECTION.  This is not a routine procedure, despite the fact that the doctors and experts have it down to a science. TEEHEE!  No pun intended!  Ok, it totally was…

My Point? Well, according to a Wolf-Hirschhorn blog, Amelia was just rejected by a local hospital near and dear to my heart. They don’t want to list her. They quote quality of life issues, compliance after transplant, mental delays…basically, they don’t want to transplant her. She’s sick. She’ll die without a transplant and live on dialysis for a long, long time (hopefully she’ll survive that long). And if she gets a transplant? We’re talking major, major medical interventions for a long, long time. It’s no walk in the park.

Here’s the deal, yo. The parents feel that their daughter was denied a transplant based on her mental status. And this isn’t the first time I’ve heard of this. I’ve seen other news stories, magazine articles, blogs and the like all detailing something similar. Other sick, desperately ill children. Children with a variety of medical issues. Children with mental/developmental delays, mostly due to their medical issues. And these children are being turned away.

I’m not here to get into a religious discussion or an ethical one. I’m not even talking about morals here. I may not be the biggest special needs advocate(though people think I’d make a great one. Funny, no?) but I have to say something. I have to say something because of my boy. Because he’s “retarded.”  Because he’s “delayed.” Because he’s one of those kids that “isn’t going to contribute to society” and “drains our resources.”

Look, y’all. Put yourself in her family’s shoes for a moment. What if that were YOUR CHILD. And a doctor said, “Sorry, she’s retarded. She doesn’t deserve a kidney. Buh-bye!” And I know there’s more to this story and no doubt varying sides but I don’t give a rat’s ass.

This is about AMELIA.

This is about a little girl who deserves a chance to live, to grow, to play in the green grass, chase butterflies. To swing at the park on a beautiful spring day. To stick her toes in the sand and feel the waves crashing at her feet. She deserves life. Just like anyone else on this planet. So why is it our society suddenly doesn’t give two shits about kids like Amelia? Why is it that kids like mine are getting less and less respect? And don’t tell me it’s our president, it’s our laws, it’s our lack of morals, it’s our turning away from religions, it’s our new health care laws. etc, etc.

Bullshit.

It’s called entitlement and selfishness. It’s all about money and numbers and stats and data and businesses. No one wants to help anyone else anymore.

Or do they?

Because a few days ago, this happened.

And this.

And this.

And today? This.   And this evening? THIS.

And now Amelia isn’t alone in this fight. People are fighting with her family. For Amelia, for their children. For the future.

This is opening up discussion and debate. People are paying attention. People are listening. Some are being asshats. Some are being awesome.

And people are helping, and you can, too. So go there. Read. Help. Pray, vibe, sprinkle fairy dust. Dance around a fire under a full moon. Whatever you can do.

Help Amelia. Because you’ll be helping kids like mine, too.

How to Survive the Plague in Three Easy Steps

You know how sometimes when you need sleep the most you don’t get it for one reason or another? Yeah. That.

I have the plague. Not really, it’s Influenza, but still. I tell some people I am under the weather and they are all OMGAH!!! QUARANTINE!!! And others are all MEH. NOT THA BIG A DEAL! Riiiight. Tell that to Bugaboo.

And naturally because I started feeling like I was in a car wreck two days ago Bugaboo decided he was going to do that “up all night eating” thing I am so very fond of. Last night took the cake, though. I was on the couch immobile for hours and we finally got the Bugaboo settled. I crawled into my bed around 9 and fell into a feverish sleep. By 10 he was up for the first time looking for food and drink. Then at midnight. Then at three Bug boy came into my room complaining of bug bites. Then at 5 Bugaboo got up for good, asking for bacon (that’s my boy!). And in between I had to get up a few times to get drinks, blow my nose or go to the bathroom. And the dogs would stir each time and beg to go out. And because Bugaboo was in bed with us it meant we were kicked in the shin, groin or stomach at least twice. Then there was the head butting.

Best night of sleep ever.

Luckily I can be home today doing pretty much nothing. Which means I am going to sleep. And hopefully get rid of the fever. And eat soup because everyone knows that chicken soup makes it all better.

Now, NO SICK KIDS TODAY. I will scream.