Today we have the good fortune to be getting out of dodge for a few days. Just The Guy I Live With and myself. Luckily for us, when I have a global nuclear meltdown, I have family who jumps in to help. Willingly. Of course, I have to bribe them with gold, jewels and women, but that’s not important right now.
I cannot tell you how much we need this weekend. We need some respite, rest and quiet. Just a few days to collect our thoughts, reconnect and rest. And do stuff we can’t do with the kids around. AHEM. *wink,wink,nudge,nudge*
What? We are going to an amusement park and shopping! What WERE you thinking? Pervs. The lot of you.
Anywho, let’s hope my back stays at no more than a thirty degree angle and that I don’t get any worse. I am determined to enjoy myself, even of it means being in a wheelchair the whole time. I mean, I am happy with staying in bed for four days. Or the hot tub. Or the steam shower (there you go again. Pervs. Sheesh.).
See you on the other side. If you need me, I’ll be eating ridiculous amounts of potatoes.
So I got this bright idea last night I’d make a video. It originally was just gonna be a general post with nothing autism-related but then I was interrupted.
View for yourself:
And the aftermath:
I apologize for the sh*tty camera work. HAHAAHAHA!!! I said “sh*tty!” GET IT?
If there’s one thing I needed in my life twelve years ago, it was an attitude adjustment (TWELVE YEARS? ACK!).
I was flying high, not a care in the world. I was impatient, impulsive, immature. I complained about first world problems, didn’t appreciate what I had in my life and saw the glass half empty more often than half full. If there’s one thing I learned over the past twelve years it is patience. Be careful what you wish for, by the way. I always prayed for patience. I knew I needed to learn it. AND BOY HOWDY, LESSON LEARNED.
I’m type-A all the way, yo. Energy, emotion? I gots it. Bug Boy is a carbon copy of me. Heart on his sleeve (well, you know, except for when you need to know something important) and an external processor. Bugaboo is more like his father: quiet, laid-back, introspective.
One of the biggest learning curves? Besides the PATIENCE? Learning to appreciate the little things in life. Silver linings. Blessings. Glass is full. Whatever you wanna call it. I learned it.
I used to look at my life and I was sad because of the things that were missing. I didn’t look at the big picture. I didn’t realize how full my life was and I certainly didn’t think everyday ordinary things were anything to celebrate.
Let’s just say my perspective has changed a wee bit.
No, my life isn’t easy. I don’t get everything I want, for sure. I do, however, have what I need. My family is happy (though we have our share of speed bumps). My boys are thriving and growing and progressing every single day. They are healthy. They are loved. They don’t totally hate me (yet). I have a roof over my head. I have two goofy dogs. A fabulous, supportive family. Good educations for my children. A wonderful neighborhood. Seriously, I have it good.
Yes, we struggle. I don’t get adequate sleep. But I have a big, comfy bed to sleep in. My house is messy and things are broken. But my husband is magical and knows how to fix sh*t. And he fixes a lot of sh*t. My kid may not talk, but he has things to say. And he’s learning to communicate.
See, I realized a long time ago it ain’t the big things in life that make you happy. Money is nice but it only goes so far. A decent car is good but it doesn’t wrap its arms around you when you are sad. I’d looooooove new floors but what we have now works. For now.
It’s the little things, people. Bug Boy has grown and matured so much. He is not the same boy he was five years ago when he began school. He is confident, happy and full of love for learning. He is inquisitve. He is thoughtful. He has compassion. He wants to take care of me, of his brother and Dad, of his pets. I couldn’t be a prouder Momma. But this puberty…having trouble APPRECIATING it. See.
Bugaboo is doing much better than he was three years ago. And even though we had a recent rough patch (WHOA) we made it through. We’re starting to see improvements every single day. He is happy again. Smiling. Starting to do the things he loves again. SLEEPING. Every ounce of it I celebrate. Every little step. Every little thing he does. Like this:
That kid is pure joy, I tells ya. How could you be angry and bitter after seeing that?
Our journeys are different. Your mileage may vary. Me? I choose joy. Life is to short to be angry and sad and bitter. And while I feel those things once in a while (Ok, more often than that, I AM human, after all), my boys deserve a Momma who is happy. They deserve a family who can get through the tough stuff and still find joy. It isn’t easy. It’s just what I chose to do a long time ago.
Yep, things suck sometimes.
But the joy in the small things? That’s what gets me through the tough times.
One of the most awesomesauce part of autism? Finding a community of amazing (A. MAY. ZING) parents, autistics and specialists for support. The Internet can be a lousy resource (Paging Dr. Google) but it can also be Wonderfully Helpful. Which is why I am in the midst of updating my Special Needs Resource page. See it up there? Next to “People I stalk” (Sorry about that, by the way)? I am trying to get all my homies listed up there. My posse. My Autism Peeps. So if I’ve forgotten you? PLEASE TO GIVE LINKY. KTHXBAI.
Also! It’s Friday. This can only mean one thing. RYAN GOSLING.
couldn't resist
Extreme Makeover Ryan Edition
Mmmm...Momma like.
And last but not least…
Isn’t this fun?
See, this other awesomesauce Autism Mom (Sunday Stillwell at Extreme Parenthood) does this Hella Fun spin on that ole Ryan Gosling Meme. I mean, who doesn’t like Ryan Gosling? (BE QUIET. WHO ASKED YOU? Oh, I did? My bad).
Anywho, gotta go click the linky and go click other linky thingies and see more funny Ryan Gosling stuff. Because he’s hot. And saves people from taxis. And builds nice houses. And dammit, that scene in the rain…
But this is the thing I was talking about. Community. Being a part of a large community. People who care for one another. People who help one another. I have IRL peeps and Internet StalkersPeeps and it’s awesome when you can find people to go on this journey with you. People who can tell it like it is. Who keep it real. Who pick you up when you are down. Who give you suggestions to help with your kids. You know, takes a village and whatnot.
So we survived spring break by the skin of our teeth.
Both boys had only ten days off (I say only because friends and relatives had TWO WHOLE WEEKS) so we got through. I kept them on their schedule for the most part and did some fun stuff. Like go to IKEA. But another IKEA, as in a different one.
Bugaboo was not amused.
While he is improving a teensy bit each day, he’s still somewhat reclusive and isn’t terribly interested in doing anything he used to love doing two months ago. Like shower ten times a day. Or stim on sugar, salt, bleach and toilet cleaner. This would prolly be a good thing in a different household. For us, if Bugaboo isn’t getting into EVERYTHING and breaking at least one thing a day something is terribly amiss.
But then yesterday they went back to school. Thing seemed to be magically falling into place. Bugaboo had a great day at school, Bug Boy had a great day at school, our doctor’s appointment went quite well and they went to bed a bit too easily.
And naturally, neither of them wanted to wake up today.
Bugaboo is still waking a bit at night but thankfully the majority of the shrieking/screaming/meltdowns are going away. He is sleeping better than he was two months ago, for sure. I’ll take it, yo. Two hours of sleep is better than no sleep. Some nights he is up giggling and wanting to play Slingo on his iPad (don’t ask) and when he finally dozes off I can’t fall asleep and when I finally doze off it’s time to wake up for the day.
Oh, the IRONY!
Fortunately, the boys are back at school. Which means NAPS FOR MEEEE!!!! I’m the luckiest girl in the world!
So I’m glad his med change is going well, it was clearly the right thing to do. I’m still frustrated with what to do at night, since he seems to be still asleep, almost like it’s a walking nightmare (the screaming and shrieking). I’m thrilled he is starting to be more and more like himself, like last night at the doctor’s when he was giggling, smiling, doing his gymnastics on the couch and launching himself around the room. Back to his old self for a few! I’m still sad, however, that he hasn’t gone outside much (though he did at school yesterday! PROGRESS!).
Basically, it’s still a work in progress.
But I’m sooooo happy things are finally improving. It’s been a dark couple of months.
SHAMELESS VOTE WHORING: I’ve been nominated for Babble top Autism Blogs. Do you love me? Then clicky, yo. Even if you don’t love me. Because everytime you don’t vote for me, a unicorn dies. Won’t you please think of the unicorns? Also, I’m a delicate flower and stuff and my sense of self-worth revolves around getting clicky thingies on the internets by strangers. Thank you.
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.
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.
