Category Archives: Autism and Stuff

Autism is… Occasionally Frustrating

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We’ve had a pretty good ride with autism up to this point. I mean, sure we have our challenges (LOTS AND LOTS OF CHALLENGES) but I’m one of these “glass half full” annoying people so I’m all SILVER LINING!  LOOK AT THE POSITIVES!

That really pisses people off.

For some reason, most people would rather pity me, feel sorry for me, give me sad looks, talk negatively. My happiness and cheery disposition make them uncomfortable. Why do happy people piss other people off? SHEESH.

And this is why I’m doing this “Autism Is…” series, so folks get the right idea. No sugar coating, just keeping it real. The nekkid truth. The good, bad and the ugly (ENOUGH WITH THE EUPHAMISMS!).

In other words, I’m telling you what it’s really like.

And sometimes I get frustrated. Well, often.

Now, people have frustrations in their lives every single day. I get frustrated my back aches and I have no sacral discs to speak of. I get frustrated I have crappy allergies and it’s spring.  BOO SPRING! I get frustrated when people talk and text while driving. I get frustrated with politics, the environment, my family…you know, everyday stuff.

But autism? Different kind of frustration.

I’m not frustrated because my kids have autism. I’m frustrated because sometimes autism presents us with challenges and throws us curve balls. Like the sleep deprivation thing ( I know, you’re sick of hearing about it. Me too!). The medical issues. The OCD/Bipolar stuff, the behavioral struggles, the non-verbal kid. That stuff.

And if I’m frustrated because I can’t figure out what my kid needs or how he feels, imagine how much frustration he feels. Imagine how Bugaboo must feel when he is feeling crappy and can’t tell me if he has a headache. Or he wants something to eat but we don’t have the right PECS for him to say, “Take me to get a milkshake in Daddy’s car and it has to be that French Fry place I like.” And his sign is limited and his sensory issues are overwhelming him and he can’t say, “I CAN’T SLEEP.”

He’s frustrated.

We’re frustrated.

It’s all a big guessing game sometimes.

To top it off, every time we feel like we are FINALLY getting someplace and FINALLY making progress, it seems as though some issue crops up. Dead parent. Me not being able to walk for two weeks. My pesky colon polyps. Daddy goes to Belgium. Bug Boy’s OCD flares up. Bugaboo’s self-injurious behaviors flare up. Things get broken and ruined.

Believe me, I have my share of angry moments. We have our share of frustration. We have more than our share of hardship and challenges to deal with.

I just choose to deal with them differently than most people.

I have made it my goal to never feel resentment towards my children. Sure, I have the right to get angry when things are broken. I have the right to worry about Bugaboo’s future (and do, often). I have the right to break down and cry when I’m SO DAMN EXHAUSTED I can’t even sleep (irony FTW!). But those feelings? They don’t help me. So I feel them, own them and then look for a solution. And since I’m a MUST FIX NOWNOWNOWNOW person, and so is The Guy I Live With, we are sometimes frustrated if there is no solution. It’s difficult to accept. Very.

But we press on. Can’t change the past, y’all. So we look toward and plan for the future as much as we can. And hope tomorrow is a better day.

Autism is…Sometimes Exhausting

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Sleep issues and autism often go hand in hand. I’m always all YOU ARE TOTALLY PREACHING TO THE CHOIR, MY FRIEND when someone I know says they are tired or didn’t sleep well because, HELLO. My child is Bugaboo. Bugaboo=sleep deprivation for eleven years. (Yes, I know you are tired of hearing me b*tch about my lack of sleep. HA! I SAID TIRED! HAHAHA!)

Not everyone has sleep issues and certainly not every autistic person has them. We are just one of those lucky families where both of our children have autism AND sleep issues. Top that! HA!  Hardship Olympics! NEENER!

Bug Boy did the usual “newborn who wakes every few hours” thingy as a baby and pretty much didn’t sleep through the night until three years old. While he sleeps much better these days, we have struggled with sleep walking, sleep talking, sleep singing (HILARIOUS, BY THE WAY) and all manner of flipping and flopping like a flounder in his bed. I can tell he’s having a restless night by counting how many times a knee, elbow or his head whack the wall (his room is right next to mine). Melatonin is our friend, yo.

But Bugaboo? Takes it to a whole new level.

Bugaboo slept through the night when he came home from the hospital. I kid you not, he was the easiest baby on the planet. Perfectly pleasant, ahead on his motor developmental milestones, smiley, rarely cried. He was happy to be left alone (shoulda been my first clue) and didn’t cry when he was hungry. If he woke up and I had placed him in the crib to sleep while I went to the bathroom or showered, he wouldn’t cry. He just stare at the ceiling fan. And while he didn’t nap at all during the day (not even as an infant. Weeeeird) he slept so awesomely at night I was fine with it. But his brother was still up several times a night at that point. Huh.

And then Bugaboo turned fifteen months.

And he never slept again.

Well, sorta.

Around fifteen months he began hopping out of his crib (we co-slept but he would go in there sometimes). That was the end of that. It was also when the night terrors started. And the up-all-night parties began. Up allllll night. Coincidentally it was about the time we started early intervention. Or not so coincidentally, since I swear he has the most trouble when he is going through developmental changes.

Around two we discovered the seizures and he began medication and he did sleep a little better. Like, six hours a night. And he’d take short naps. But he’d still be awake most of the night. I was a walking zombie. And Bug Boy was still waking at night. And then we discovered his seizures. And we did sleep studies and..

One summer we were in Utah. We drove across the country, stopped and saw neat stuff and got to Utah to see my in-laws and Bugaboo stayed awake. For two weeks straight (we ended up coming home very early from that trip). That’s when we decided melatonin wasn’t cutting it and he began a sleep med. That worked for a while. Until he grew. Then we increased it, he grew, we increased it, he grew, lather, rinse, repeat. Four years later we still have to tweak every few months.

Even on the sleep meds, he rarely sleeps through the night.

Which is why I blog, dog sit and sometimes babysit. Because I can stay home and do it, make a teensy bit of money and catch up on sleep in the afternoons. Because I’m a walking zombie and can’t put two coherent thoughts together.

But you know that, because you read this blog.

Autism is…Never Boring. EVER.

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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.

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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…a Roller Coaster. Sometimes.

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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

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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

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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.