Autism is…Never Boring. EVER.


bore

verb (used with object)

1.

to weary by dullness, tedious repetition, unwelcome attentions, etc.: The long speech bored me.

I often joke that my life may be hectic and chaotic and sleep-deprived and hella stressful but at least I’m never bored, right?

I mean, I’d pay money to be bored. I do pay money to be bored, two weekends a year. When my sibs take over for 72 hours and give us a break. Then we go someplace kinda boring and sleep and eat and sleep and eat and then sleep some more. And then there’s some WINK, WINK, NUDGE, NUDGE. But you get the picture.

I’m rarely, if ever, bored. I can’t think of the last time I was bored. I mean, I can’t even go into the bathroom and be bored, I have to leave the door open to make sure it doesn’t get a Sh*t Ton more exciting while I’m in there, yo.

Let’s examine the definition of boring (bore):

dullness, tedious repetition

Nope. And Nope.

Never dull. Dull would be like NOT EXCITING. And it’s exciting around here alright. I mean, eight or so ER visits in one year, stacks of paperwork, constant house repairs, dogs and kids up to my eyeballs, cleaning poo and pee from carpets and furniture and walls, hyper vigilance, elopement…never a dull moment.

Sounds like a party, eh?

I mean, where else could you watch Thomas all night long or spend 35 minutes scrubbing motor oil off of your child’s skin? NOWHERE ELSE. It’s like Disney! Without the scary stuffed costumed people and light parade and…ok, it’s nothing like Disney.

But I’m absosmurfly never bored.

And I’d pay money to become so.

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


Disclaimer, for purposes of raising awareness and acceptance, I give you permission to share, cut and paste (with attribution and linky, please) or do whatever you need to do. Please include the following reprint permission language:

“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.

Autism is…Well, I’m Giving You a House Tour


I went back and forth about whether or not I should post this. I mean, I want to keep it real, yo. But this is a long-ass video and I babble incessantly, per usual, because I have ADHD. Also! It’s super long and stuff. And I didn’t want people to be all OMFSM SHE LIVES IN A PIG STY.

But I also want you to know what our lives are like.

Our house is in disrepair. We’re working on it. But I wanted you to see it.

Why? Well, because I wanted folks to see what Bugaboo (and Bug Boy) can do to a house. I want to show you the bruises on his arms (and mine) from the biting and pinching. I’ve recorded screaming fits and meltdowns, too( I don’t know if I’ll post those, though). Why did I record it? Well, because when folks tell me I have no right to be happy and that my kid’s version of autism is better than theirs (because, you know, there’s a HARDSHIP OLYMPICS) they can see that we have our struggles in our version of autism, too.

And we’re still happy.

We’re tired, oh so very tired, and sometimes we’re frustrated. But dammit, we’re happy and we’re gonna have hope.
(Oh, and turn the sound up, because I’m mumbling and I had a headache that day)

Anyways. My house. Enjoy:

 

Autism is…a Roller Coaster. Sometimes.


Just like everything else in life, autism can have its ups and downs. You know I don’t like to sugar coat things. Life ain’t all tea and cakes, yo. No one’s life is. And if you believe that someone can live that mythical perfect life I’ve got a fabulous business transaction from Nigeria for you.

Now, some people think autism families have more downs than up but LEMMEE TELL YA SOMETHIN’. BEYONCE IS THE GREATEST ARTIST OF ALL TIME. OF. ALL. TIME.

OF. ALL. TIME.

Ahem. I mean. That is…errr.

So we have our ups and downs but to me? The downs make the ups better.You know, kinda like without darkness there would be no light?  It kinda gives us perspective? Sure, there’s plenty we struggle with. Like holes in the walls, having to rip up floors, bleach stains on carpet, running away, biting, medical issues…I could go on and on. But when there’s an ‘”up?”

Life couldn’t be sweeter.

It’s no secret. The last few weeks…well, the last few months have been one Aitch-EE-double-hockey-sticks of a roller coaster. It seems as though there have been more challenges than triumphs. I’m still recovering from the sudden/not-so-sudden death of my father and juggling everything left in its wake. Bugaboo has had major personality changes and hasn’t moved in weeks, let alone sleep. Bug Boy has been struggling more with OCD this year than I’ve ever seen and his anxiety is through the roof. There are many nights I feel as though I’m a total failure as a parent and when I finally  get them to sleep (if they sleep) I am reduced to tears. There are some days I’m all, “Husband who? Oh right! I need to pay attention to him!” And the dogs. And the house… I’m weary, y’all. Weary. It’s the only word I can find that comes close to describing the exhaustion and sadness I have been feeling. And it’s not just S.A.D. I’m actually doing well handling that. For once.

I was riding in the car the other day with the boys and Bugaboo was singing to himself. It’s the first time in weeks I heard his sweet voice, other than shrieking and screaming. He hums his favorite music (Star Wars, Magic Flute, Hot Cross Buns) over and over. Or did, anyway. But that day…he hummed. I haven’t heard it in weeks. Then he babbled. He’ll “talk” to himself in his own little language and then snicker. It’s adorable. And he did it that day.

And tears welled up in my eyes. I was so happy to hear it. And to think, sometimes I shush him when he makes too much noise!  BAD MOMMY!  BAAAAAAD!

Then yesterday I got him out shopping for the first time in weeks. Now, Bugaboo LOVED to shop. He loves the big red bullseye store. He LOVES home improvement stores and Swedish Furniture Stores.

But not lately.

Yesterday? He was happy as a clam to see that red-dominant store. I pushed it, though, when I tried to return to get a prescription and he wouldn’t get out of the car. But! He went in the first time. AND ventured outside onto the patio for a few minutes that afternoon. AND has been eating. Not just eating strings and paper!  FOOD!  He’s  sleeping  better, too. I realized the boys have been slooooowly improving since we visited our new specialist and tweaked their meds. The med tweaking will take a few weeks, since you can’t just say, “NO MORE FOR YOU!” and then let them go from zero to sixty in twenty seconds or less. Because that would be bad, yo. Anyways, I realized we were making progress for the first time in weeks. Although he still hovers by the couch, Bugaboo has been sleeping and sleeping in his own bed! That’s progress! And taking showers and going upstairs without prompting! The old Bugaboo is on his way back.  I missed my happy, smiling, carefree boys.

Then this morning? Bugaboo smiled. And this kid has a million dollar smile, y’all. I missed his smile so much. And it warmed my heart so.

See? Golden Smile. How can you not love it?

That smile reminds me that I have a good life. Sure, we have our ups and downs. We’ll face many more challenges and there are going to be some days that will downright suck. But that smile right there? That’s what keeps me going. It recharges my batteries. It erases the pain of the bad days. And it fills me with hope. And dammit, I’m going to hope. Through the sh*ttiest of sh*tty days I’m going to have hope for a good future for my kids.

So there.

 

 

Autism is…World Autism Day


Today, April 2, is World Autism Day. Many people are posting statistics, personal stories, triumph and heartaches. Me? I decided pictures are worth a thousand words. So I decided to resurrect a video I made last year (two years ago?) because it is powerful to me.

Basically? My kids are the face of autism. There are many faces. There are many stories. There are many versions of autism.

These are just two of them.

Autism Awareness Month: Keeping it Real


I never set out to be an “Autism Blogger” and I certainly never considered myself one. I didn’t want my every moment consumed by autism because honestly, there’s more to our lives than that. The truth is, autism is a very big part of our lives. While it doesn’t solely define who we are, it is very much at the core of our family.

Everyday in our house is Autism Awareness Day.

I’m not lighting it up blue, or doing marches, or raising money for big groups. I prefer to make a difference at the local level, doing what I can for Bugaboo’s school (they need all the help they can get), his non-profit music therapy group or the small local foundation that helped us pay for Bugaboo’s car harness. Grassroots and stuff. Change at the local level. That’s me!

And while I resist it at all costs, I really am an autism blogger. Autism is part of my life. I’m automatically one of them. Even if I don’t think I’m a great shining example of an autism parent and have unpopular opinions. And boy howdy, there are many lines drawn in the sand right now in autism. Parents against autistics, older parents versus younger parents. Cure versus no cure. Neurodiverse or not. Biomed versus ABA. It’s enough to make a person’s head spin. Politics as usual, no? (Pssst, this is an excellent time to point out that everyone is entitled to their opinion. THEIR OWN. And I respect that, even if I disagree, or point out why I feel a certain way. Doesn’t mean that your version is wrong, just different than mine. Can we agree to disagree now? Please? I can haz peaceful blawg now? Kthxbai!)

What I’ve decided to do is to devote this month to showing people what OUR version of autism looks like. Our version is different from other families’ version. In fact, while nearly identical development the first two years, my boys are vastly different. What works for my children may not work for yours. What works for yours child may not work for mine. No two snowflakes are alike. Our kids have many, different layers (I have layers. onions have layers. QUICK! Ten points to Hufflepuff for the name of that movie!). That’s why it is up to each individual family to learn what they can from a variety of sources and make decisions based on what will work best for their family.

If you’ve been reading for a while you know about the pee, the poo, the floors, the holes in the walls. You know about the padlocks and alarms. The sleepless nights and the shortened vacations. But the new people? Hope you like roller coasters. You are in for one heck of a wild ride.

I want parents of newly-diagnosed kids to know it ain’t all sunshine and roses but that our kids are inherently beautiful and amazing. I want them to know the sadness and the pain, while understanding the unconditional love. I want them to see how much we struggle but not feel pity because we are proud of who we are. I want them to see how hard we work just to make it through one day. I want them to see how vulnerable I am but that I can still keep my head up high. But most of all, I want them to learn to respect autistics as individuals with thoughts and feelings and understand that awareness is not enough. Because not being able to speak is NOT the same as not having anything to say.

My happy Bugaboo.

I’m absosmurfly going to keep it real. Very real. In all its raw, unedited glory.

So hang onto your hats.

Autism Has a Face


April is Autism Awareness Month (and Sexual Health Awareness month, Child Abuse Prevention month and foot health awareness month). In my house, we’re aware of Autism 24/7/365.

There’s been a bit of hubbub the past few days with these things called numbers. And statistics. And you know what they say. There’s lies, damn lies and statistics.

Now, I’m not here to dispute that the numbers have changed or why or what it means. I’m not here to talk about whether or not I believe it’s an epidemic or a disease or a disorder. I’m also not elaborating on what causes it.

I’m here because my kids aren’t just numbers. There’s a child behind every single one of those 1 out of 88 or 1 out of 54 boys or whatever it is. Or 2 out of 5o something, in my case.

There’s a face behind those numbers.

Here’s mine:

Cutest butt ever.

Ok, so you can't see his face. Just pretend.

Stay Classy, Bugaboo

SUPA STAH!

So before you tell me how tragic my life is and what an epidemic and how badly I should feel, please know that THEY are my motivation.  And believe me when I tell you we have many, many challenges. But we’re gonna be ok.

Just sayin’.