New friends

Freddy and Blue Toad joined the family... Henry the engine just likes hanging out with them and wanted his picture taken :).

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Robotnik the Big Blue Engine

All Aboard the Robotnik Train

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Larry the GWR Engine

Here is Larry the Koopaling as a Train from TTTE It's the Koopalings Hype Train

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Talking clock train

Talking clock train with Thomas.

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A Mad Crush

We were at the store buying school supplies when Bitty found a little blue ball.

Dh and I were busy looking for the items on the list so we didn't notice the ball at first, until I heard Bitty tell one of the store employees who was walking by,

"This soccer ball has a mad crush on me and keeps following me around!!!"

He carried that little ball around the whole store and kept holding it up telling us (and anyone else who would listen) that the ball had a "mad crush" on him. We asked him where he heard that phrase (figured it wasn't Thomas) and he said, "Garfield, volume 15." He said it was like Garfield's ball of yarn.

Curious, I went looking through his Garfield book (Fat Cat 3-pack, volume 15) and sure enough:

LOL

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Special Needs Ryan Gosling - Week 1

Coming out of blog-hiatus at least for now to join in on Special Needs Ryan Gosling with Sunday at Adventures in Extreme Parenting. I found this meme last summer, right about the time she stopped doing it for a while (of course! lol) so I never had a chance to participate and thought it looked like fun.

And now she's brought it back, yay! :D

There was a time that we couldn't seem to go anywhere without making a scene. Sure, it may feel like people are staring because you're wrestling your child to keep him from running out into the parking lot, or chasing him down the aisles of the store way faster than you should attempt running because you're afraid to let him out of your line of sight, or dropping to the ground mid-stride in a vain attempt to catch him before he licks the sidewalk *again*. I mean, I can see why you might *think* that's why people are staring. But maybe, just maybe, Ryan is onto something and it's really because we're such hot mamas ;). It's possible, right?

In other news, a few words of encouragement: This stuff HAS eventually gotten better. The chasing, the wrestling, the public meltdowns and screamfests... it didn't happen overnight (not by a long shot) and it took establishing a familiar routine for pretty much everything and everywhere, and sometimes we still attract unwanted attention... but you know what? Even if the kids are loud they're *usually* not screaming. They may be flapping and jumping but they're not *entirely* pinging off the walls. One still likes to roll around on the floor (and yes, I make him get up), but he's *not* licking the floor anymore. They either hold my hand (the 8 y/o) or actually stop when I remind them to stop and watch for cars before walking to the parking lot (the 12 y/o's). I still feel that familiar wave of relief whenever we are back in the car or house (translation: safely contained) but generally the exhaustion level of taking everyone out is so. much. better.

Check out more SN Ryan Gosling here.

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On hiatus...

I guess it's pretty obvious since I've posted all of one time in the last six months, but I'm making it official (if anyone's still reading at this point).

It's not that nothing is happening, actually we've been busy as usual.

Part of it is that after YEARS of sleep-deprivation-turned-insomnia, I am finally able to sleep. Maybe my body is trying to make up for all those years, but I find that I no longer have the energy for the late-night writing that produced a lot of my prior posts.

Part of it is that this was kinda-sorta supposed to be an autism blog, and at the moment I don't really have much to say about autism. I mean, it's always there and it influences so much of what we do and how we interact as a family, but it's there in the way that oxygen is always there and I don't always notice it anymore. Maybe that's because all of our children are autistic so it's all we know. Developmentally, we seem to have reached a plateau of sorts, so we are still dealing with a lot of the same stuff we've been dealing with, and I don't have much to say about it that I haven't already said.

Part of it is that as my twins get older (they just turned 12 if you can believe that, they were not quite 7 when I started the blog!), I feel like it's not just my story to tell anymore. I mean, thinking ahead 5 or 10 years, it's one thing for them to find stories I have written for the world to see about when they were little, but I'm not sure how they'll feel about me continuing to write about them as they approach adolescence (I can't believe I just used that word in reference to my babies, ack). There's some stuff I still feel comfortable sharing, but not as much as when they were younger (and not as much as I still feel I can share about Bitty).

I'm taking lots of pictures but I haven't had time to post many of them yet (and after enough time passes it seems weird to go back and post them but I may eventually do it anyway). It might have something to do with the fact that my computer has been all but taken over by a certain Little Bitty who loves to play Roblox and take pictures of Thomas faces (on the computer) with my phone. When I do manage to get some computer time, it is usually spent uploading and cropping these for him:




I'm not ready to give up on the blog just yet - I still like having a place to journal, to share and connect with others, and I enjoy writing even if I'm in a bit of a writing funk right now. So I'm just going to call it a hiatus and take a break.

In the meantime, I'll still be around and reading although if I'm on my phone I may not comment (sorry, typing on the phone makes me batty sometimes).

You can also find me at the links below and I'd love to connect there as well (although, full disclosure I'm rarely on Twitter or Pinterest, they get a little overwhelming!).

Everyday Adventures FB Page
Facebook
Instagram
Pinterest
Twitter


...and in case I'm not back for a while I want to say that I'm grateful for the friends that I've "met" through blogging. Ya'll are awesome and it means the world to know we're not alone in this journey. xoxo

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So aware, we're UNaware

Have you ever seen the movie, "The Three Amigos"? It's a *really* cheesy movie from back in the 80's, and there's a scene where the amigos say something along the lines of "he's SO famous, he's IN-famous!" (if my mom is reading this, and she may be the only one still checking my much-neglected blog, she's cracking up right now because she totally remembers that quote)

That's kind of how I'm feeling about autism awareness at the moment. We've been living it for almost 12 years (although we've only known it for almost 9). We're 3 for 3 when it comes to children on the spectrum, so it's all we know. We're SO aware, we've become UNaware. And by that I mean, autism is so deeply woven into every aspect of life that it is hard to distinguish unless you're looking for it. We know it's there, we just don't notice it that much anymore.

It's in the choices we make as a family - where we go, where we don't go. What we do, and what we avoid doing.

It's in our home. The furnishings we never accumulated because our boys need open space and minimal hard corners, the furniture we no longer have because it crumbled under the strain of three very exuberant boys using it for a playground, a canvas, a railroad, a trampoline, etc. The ongoing home repairs (thankfully dh is good at that kind of stuff) because things it never would have occurred to me could get broken, do indeed get broken. Like the towel rack over the sink that was ripped out of the wall when someone climbed up there and STOOD on it.

It's in our interactions, because it's an integral part of how my sons perceive the world and communicate with those around them. It's in the way my older boys often talk to us in numbered lists ("I have three things to tell you, number one is..."), how they prefer to quantify things ("I'm 82% done with my homework") and offer detailed dissertations to eventually say what technically could have been summed up in 2-3 words (ironic considering the time and effort involved in trying to get them to use words at all when they were younger). It's in the way my youngest has developed his own unique brand of "pretend play" in which he pulls everyone into his world whether they want to be or not (lol, certain big brothers who have never really enjoyed pretend play and are very literal thinkers protest their little brother's forays into fantasy every step of the way).

All of these little fingerprints of autism are a part of what makes my family, MY family. It doesn't define us, but it is a part of who we are. My precious boys, our quirky conversations, the eardrum-defying noise level that signifies that everyone is home and accounted for (and awake). I wouldn't change any of it.

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This is what autism looks like at our house... pretty darn handsome if you ask me :).

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Special Olympics ~ Basketball

Little Bitty's class gets to participate in various Special Olympics events during the year... a couple of weeks ago was the first one of the school year - basketball :).

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1 in 8 babies is born to soon...

Today is Prematurity Awareness Day.

To learn more, visit the March of Dimes.

Click here to read our NICU story (Cuddlebug and Bearhug were born 6 1/2 weeks early due to severe pre-eclampsia).

Here's a repost of my earlier prematurity awareness post (slightly edited):

~~~~~~~~~~~~~~~

Did you know that 1 in 8 babies is born prematurely in the U.S.? In approximately 40% of cases, the cause of premature labor is unknown, and it can happen to anyone. I have shared our story before about Cuddlebug and Bearhug's premature birth, but I think it's worth examining what a difference it makes when a baby is able to be born full term. In contrast with his brothers being born 6 1/2 weeks early, Little Bitty was born 1 1/2 weeks late. Being pregnant with him a full 8 weeks longer felt like FOREVER in comparison, lol, but of course it was well worth every minute because I knew he was where he needed to be (and unlike the situation with CB and BH, it was safe for him to remain in the womb).

What a difference those 8 weeks made! Here is a comparison of their footprints:


I scanned them all together so they would be proportionally accurate. Every time I look at these I'm just amazed at how tiny Cuddlebug's foot was compared with Little Bitty's. The size disparity between Cuddlebug and Bearhug was due to TTTS.

In addition to their sizes, here are some other differences we experienced between our twins' premature birth and the full-term delivery of our youngest. I only have my own experience to draw from, so this may not be applicable to everyone, but I'm sharing it to highlight some of the benefits of full-term delivery and why prematurity awareness is so important.

1. Being able to hold your baby right away. We had to wait 8 days before we could hold Bearhug for the first time, and 2 days before we could hold Cuddlebug. I was able to hold Little Bitty within the first few minutes after he was born. It was an amazing experience!

2. Being able to bring your baby home with you. Cuddlebug and Bearhug spent 22 days in the NICU before we were able to bring them home. Some premature babies stay much longer, depending on how early they are born and their health. Some preemies have medical challenges ranging from mild to severe, while others just need a little extra time to grow.

3. Getting a little more sleep at night. Like most newborns, Little Bitty woke up to eat about every 3 hours when he first came home. Because of their small size, Bearhug and Cuddlebug couldn't hold enough food in their stomachs to last 3 hours and needed to eat about every 1 1/2 hours. Add to that the fact that the effort they had to put into eating often wore them out before they were full, and sometimes we didn't even make a whole hour before they needed to eat again. That's a recipe for exhaustion for mom and dad (although well worth it of course!).

4. Less susceptible to illness. Cuddlebug and Bearhug needed 6 months of RSV shots as a precaution since they'd had respiratory distress early on. We had to be very careful about taking them out and having visitors. We were cautious with Little Bitty also, but the risk level for full-term babies is generally not as high.


The March of Dimes has more on why getting at least 39 weeks is best for babies if at all possible. Did you know the March of Dimes is responsible for leading the call to develop Neonatal Intensive Care Units (NICU)? They also funded the research that led to the use of surfactant to treat respiratory distress syndrome (RDS). They have had many other successes as well, but for those two reasons especially, I will be eternally grateful to them!





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