When There's Autism, We Don't Sleep!

I often post on my personal Facebook page, in an autism group, or Tourette Syndrome group the funny details of my life. I tend to be very descriptive, well because my boys inspire so much vividness and imagination in me. So, many times I get told I should write a book. What about, I've no idea. No one is really interested in the life of a homeschooling, stay-at-home-mom of two special needs boys. Who talks to herself way too much, even in public - more often than not, alone too!

That being said, sometimes my posts are a bit too long and involved for any Facebook post really. So, why not post those stories here? If you ever read this blog, I hope you can find some laughter in the lumps, because without laughter, we'd all just cry! lol

My giggle for the week:
So, my youngest son, I call him Evil Genius. Why? Well, you really have to know him. He's too cute for his own good, and somehow ends up doing the craziest things and getting away with them. Or saying the perfect thing in the heat of the moment that will crack even the grumpiest of parent, right up. The only truly evil thing about Evil Genius, is that he does not sleep...like ever. It's part of his world domination plans, to see how long adults can go without actual 6 - 8 hours of sleep. This is why he never slows down during the day too, to keep the sleep deprived adult at attention at all times....it's genius in a way I suppose, if it wasn't being tested on me. 

Anyway, I can't tell you how many times a month, a week, a day, I hear someone ask me why he doesn't sleep! 

--Which is THE most infuriating thing to be asked ever!!--

Can I just tell you all this?! If I knew why he wasn't sleeping, don't you think I'd have figured out a solution by now?! lol Anyway, apparently - well, no I KNOW that somewhere in my reply to the countless people that ask is: some kids with autism just don't sleep. Which isn't really my response, it's his doctor's response. lol 

So, last night, DW didn't go to bed until 2 a.m.! He tried bless his heart but, it just wasn't working, and while I trust him to be up while I'm sleeping, I'm still a mom, so I don't really sleep. I end up sitting up for most of the time with him. Anyway, I finally convince him to try crawling into bed with me. 

Sleeping with a Tourette Syndrome kid at the peak of his jerking, isn't easy but, I figured it would definitely help him feel a bit more relaxed.

So, I wake up at around 3:30 to no hard jerking, and am prematurely congratulating myself on clever I am. I carry him to bed and hop back in my bed, thinking I can ride this out until the sun peeks it's head. 

4:22 a.m. on the dot.....rapid footsteps into my room, stop in my doorway. Gentle nudges at the foot of my bed to give the dog some love, pitter pat of feet as they try to quietly and hurriedly, get to my phone, which at this hour means only one of two things. He needs a flashlight, or he is after a game on the phone because he's played his iPad to death. Then I peak through a very small opening in my eyelids, and see nothing. Begin to think I've imagined the whole thing, except my cell phone is gone. LOL
Wait ten minutes, decide that maybe I should get up and check, but hear the rapid beat of running feet into my room. So, I do what every good mother does, I play dead. tongue emoticon 

He puts the phone back and then runs into his room again. I wait another ten, and hear nothing. I tip toe out into the kitchen, lean into his room, don't see or hear a thing. Make my way stealthily to the bathroom, when I hear rapid moose-like running past the bathroom, and then silence.

As I leave the bathroom to go back to bed, here is Evil Genius, all chipper looking, on the couch. His smiling face illuminated by the glow of his eye pad! 

So, later that afternoon....er I guess it was morning, felt like late afternoon, I was speaking with my mom - I think. I start to tell her how late DW was awake and Evil Genius proudly hollers out: It's his autism. When there's autism we don't sleep! 

I think he's heard me say something similar way too often! 

Distracted

Life with children is....hard. Not in a bad way, nor a poor pitiful me way. It's just hard to balance it; to get it right. They don't come with instructions, there is no one there really to fix what you break, or erase your mistakes. It is just is what it is and having two special needs children, in my most likely jaded opinion, is truly hard.

My youngest son fell asleep tonight, after his meds kicked in, well before his brothers. As he laid there in my arms and I sang our song to him and kissed his soft, sweet, little forehead, I thought of everything I miss with him. All the things I let slide between the cracks, while I coax my oldest into trying something new (i.e. doing what's "normal"). I watched him breathe and thought of all those times I've taken him for granted while I worked on calming my oldest son down. I held his little hand and thought of how many moments I've missed because I was focused on how to adjust my teaching style to adapt to how my oldest son learns. I held him and felt his heartbeat and realized how blessed I was to have him.

Despite his communication faux pas, his frustration when the lines of communications break down or his struggle to make sense of things, he's still such a great boy. He's always happy for the most part. He's the first one to offer a cuddle - granted it's ad nauseam some days, but at least he voluntarily hugs me. Lets me kiss his soft cheeks, and hugs his small little body back. He laughs at butterfly kisses, give me regular mohawks with whatever pretend thing he has on hand and wants to fix everything all the time. Even if it's not broken!

I think life with two children is like this anyway. No matter if you have special needs children or not. Inevitably you feel like you're failing one, neglecting one, getting...distracted. Before you know it, time has somehow just flittered by and the child before you is no longer a baby; a toddler.

I've sat here for hours now wondering how I can keep him involved, engaged. There are just no easy answers. When my oldest son meltsdown, my youngest needs to latch on to me. Only, he can't because I must get my oldest out of the room for everyone's sake. Or if my oldest meltsdown minorly (by our standards of course), but loudly, my youngest covers his ears and either disengages from all of us, or simply leaves and goes off on his own. Usually not wanting to be disturbed.

I hear the statistics too, you know? How this generation of "neurotypical" children will live with their parents until well into their 30s. How special needs children don't even graduate highschool until on average they're 21. So, in reality, I'm sure I will have plenty of time to make it up to him, to both of them. It's just tonight, laying with him snuggled next to me, out like a light, brushing his soft hair to the side, I felt bad.

I'm sure, since they are so young right now, I will work it out in time. Tonight, listening to him hum in his sleep though, I wished I'd had this figured out now. All I could do, was bend down and whisper in his little ear, that I loved him always and no matter what. I kissed his small, warm cheek and carried his limp, sleeping body to bed and tucked him in. Hoping that somewhere in there, that just this once language doesn't get jumbled up and that my heartfelt words made it to where they needed to go. I hope he heard me, I hope he knows and always remembers.