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! 

A Private Tour of Holland?

Divorce in the U.S. is said to be something like 50%. While this is sort of true, when you break it down it doesn't quite average out to 50%. The rate depends upon age when one gets married, educational status, income brackets, and so on. They say every 10 - 13 seconds someone gets divorced, and with 318 million people in the U.S., we can say with some accuracy that roughly the divorce rate sits at about 50%, but it really is just a guess.

If your marriage produced special needs children though, your divorce rate jumps to 80% - 90%. The longer you're married though, the better chance you have to come through it. Still, with a divorce rate that high, it's no wonder a majority of autism moms I meet are single. In fact, now that I think of it, the ladies whom I hang out with most, happen to be just a few of us who are still married. Our counterparts though, clearly outnumber us 3 to 1!

So, divorce...it's a HARD word to say. It's a hard word to contemplate, even when you desperately want it. For a neurotypical family, the logistics take a lot of work, compromise and planning to get laid out for both parties to meet in the middle. In a special needs family, the complications though, are astronomical. The Holland friendly parent who is going through this, has to muster every ounce of energy and strength she has, and with many of us up all night with sleep-allergic children, that can be a HUGE undertaking!

When you begin looking into it, what you need to do beforehand, what it will require, it's surreal.

It's not that you necessarily feel bad for the partner who initially refused to get off the plane, by this point, it's just for the first time you can see a future where there isn't constantly fighting every day. Where the future you thought you knew of former Holland traveling companion and a child of Holland coming to blows, doesn't happen. You've set both your traveling companion and your child free. In the process, the freedom your soul feels....it's almost palpable.

I'm not sad that it's come to this, although it is surreal. It's just that now you're making lists about how to divvy up things, photos, beds....You're now setting aside funds for a future that isn't quite there yet but, in a few months will be. You read everything you can get your hands on about what to expect for your children, and how to co-parent perfectly, etc. Except your children are from Holland. No one in Holland ever responds the way you think they will, or the way others think they should.

So you begin to prepare your life for the big word: Divorce. You don't get to just decide as a parent that it's done. It doesn't work like that. For typical parents, they may have a bit more leeway and in truth, if my children were both neurotypical, it might've been that way for me. I'd have left ages ago, with a few packed bags and probably all of $40 in my pocket.

You though, you have children that are from Holland.

Holland's children need structure, security, and you to be STRONG and stable, no matter how much you feel like falling apart, or how stressed you become. You don't have the luxury that other parents have. You don't get to stop, pause, take six minutes to breathe, or two minutes to cry. I mean let's face it, at this point you're lucky to either go to the bathroom alone, or have five minutes to yourself without hearing about Minecraft or Terraria mods.

So for the children of Holland, you plan and prepare. You start by walking your former traveling partner back to the plane where he can watch another in flight movie, snack on peanuts and drink a beer. You give him the warm washcloth and blanket and tuck him in for the long flight back to the "real world".

You? Well you hold tight to the little hands that hold yours, you walk off the plane, and for the first time in a long time, you don't turn back. You know the roads in Holland are crazy steep, really meant for off road vehicles, and there are sudden sharp turns, and you've nothing but a skateboard to travel with. This time though, you get to go on, eyes open and take on Holland at your pace. You can stop and admire the tulips, learn the language, eventually purchase one of their famous bikes to traverse across Holland and admire the windmills!

These next several months in Holland are going to be different, your partner still on the plane, blissfully enjoying the small talk from the stewardess, and enjoying the same movie, over and over and over again. You heading back into Holland to check on the cost of a bicycle, map the route that will take you by the most tulips and windmills, and book appointments with Dutch tutors to learn the language.

It's not going to be easy and nothing may really go according to your itinerary, as is typical in Holland but, it's okay. Your tour guide, has taught you about improvising, that you really are tougher than you think you are, and that no matter what insane road you're on, you ALWAYS stop and admire the tulips. Your tour guide, who really began your life, is worth it all.

Your Tour in Holland with baggage

I started writing in my blog ages ago. Like everyone else out there, I had something to say, and this was the place for it.

And just like everyone else, sometimes life gets in the way. Things change, children grow, and then you sometimes find that you have something new to say. Only, you may not want to "say" it per say, but you need to get it out. So, just like that, I'm taking up coming back here to post things I need to get off of my chest.

It's work being married, we all know that. Some of us go in blind, thinking happily ever after will always just be there. Likewise, some of us go in knowing that it will be work; that your partner and you, will grow. Maybe grow apart and you'll have to work to grow back together. Either way you look at it, you're still not prepared for the curveball that life, fate, God, etc, can throw at you...

You wake up one day, a parent. Which in and of itself is hard but, nothing so traumatic that you just wake up one day and decide you can't do it anymore. Except, some of us wake up as parents - in Holland.

If you're a special needs parent, you've probably been handed that poem. It's a pretty accurate description of life as a special needs parent too.  If you're married though, and a special needs parent, Holland is only one of your perspectives. One spouse is grabbing the tourist guides, train schedules, and maps. While the other one is fully refusing to step off of the plane.

That's okay too. I mean we all deal with things in our own ways, so the fact that your spouse is still eating the peanuts and rewatching the inflight movie, while annoying, isn't such a shock. We, as the accepting/learning spouse look up a week later, and they're just now getting off of the plane but, haven't left the airport. While you could do the donkey thing, lasso them, slap a bridle or something similar on and then try to drag them to water, and most of us will at some point, in the end you learn it will do no good. They have to come to terms on their own.

At some point, if you're still with your spouse, you will find that you've explored the entire country and he's just now grabbing maps, written in latin. You're on one end of the country and he's on the other side. At this point, it is so very easy to be beyond aggravated and loose it with them. If you went into your marriage with open eyes though, you will realize that at this point -after you've lost your mind- he's off the dang plane!! He's not completely blind anymore, he knows where he is and he's attempting to follow his ridiculous latin map to where you are.

The problem at this point though is that we don't see that. We don't want to go all the way back to the airport to show him how to take the bus, the train, or taxi. We know that it's so much easier to just keep going with your angel of a tour guide. We can no longer be bothered to catch up our partners. It's the first mistake WE make in a partnership/marriage. This is our part of the problem in the relationship. We have to acknowledge this and accept it.

If we're really strong, and have any ounce of energy, some of us will backtrack. We'll take our tour guide and hike back over some steep hills, crazy roads, and sleep in tents on the side of the road - because we've now run out of currency waiting and waiting for them to catch up. As frustrated, and exhausted as we may be, we do it and we make it and we literally hold their hand to cross the first street. It's enough to give you faith that maybe you'll get to the other side of the country before your time there is over.

So, you hold their hand through the second intersection, teach them how to hail a cab, and order food. The promise of a great stay so close in hand.

Then it starts...

He doesn't want to eat what they have to offer at chez Holland, and will only eat American burgers. He can no longer be bothered to check the map to see the destination. He refuses to stay in the tents hat you've made on the journey and books a 5-star hotel room for himself every night, hoping you won't notice. To the people along your journey, he smiles, talks the talk and will pretend to walk the walk but, when it's just you, he can't be bothered because it's too hard. Or he doesn't understand while he has to meet your tour guide in the middle to make any leeway on the trip.

This is where the constant fighting begins, fighting that in the beginning you do because you LOVE your family, you want to keep it together, and you want everyone to be on the same page. Which eventually will turn into resentment, for all the things he will not even attempt, for being such a spoiled brat and needing everything to be about him, or for all the hotels he booked only for himself, and the meals he's ruined by refusing to sit at the table because it's not American food.
Which eventually turns to no longer arguing for those things, not even caring about them. You simply argue now, because he disagrees with your tour guide at every avenue. He thinks the tour guide is too slow, too fast, missed something, took a wrong turn, etc., and you realize that not one single day has gone buy where you've not argued over your tour guide and how wrong your partner thinks the tour guide is.  Eventually he just stops pretending, stops showing up at the local restaurants, he stops participating in some cultural tours, he's dragging his feet along the way, slowing you all down, way down

At one point he just stops pretending even, and the things that he will say or do, are mind boggling. Until one day, they're just not.. Until one day, you wake up in the tent you and your child(ren) have painstaking put together time after time, after time. The tents that allow you to see Holland from different perspectives, to see sights that no quick tourist gets to see, you get to see Holland for the beauty it really holds, and you don't want to meet your partner at the hotel parking lot, you no longer want to attempt eating with him at the restaurants. You do what you've already been doing for ages now, you plan and go on without them. It sounds cold but, it's already happened. He didn't notice or care and your tour guide? Well, your tour guide vaguely registers him anymore. If he's there when the tour guide is, that's great but, when he's not the tour guide still thinks it's great. It's no big loss to them and in fact they prefer being with only now.

This is the beginning of the end, and the only one who doesn't notice, is your partner.