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.    

   

Bath Times

There are random times in our lives when we feel at peace. We're lucky to get that moment once in a lifetime, once a month, once or week or even once a day.

Despite the choas that is the boys' and my life, my favorite moment of the day is at and after bathtime.

I don't do the conventional bath with my boys. After all, we are not the conventional house. They HATE water, well my youngest does and my oldest...he's come to terms with water. Just don't get any on his clothes!

So, bath time in our house has to be creative. Yesterday it was a tub full of Transformers. My oldest who's OCD/anxiety meds aren't working up to par just yet, insisted that it had to be "one Transformer of every kind". I'm sure that in his head, he knew the meaning of that, but it was lost all together on me. We still made it work though. Today was glow sticks in the bathtub day. We pulled the shades, shut the lights off and had fun!

I never give them baths at night anymore. There's just too many things going on for them. So, like any unconventional house, we break the rules. They get their baths before lunch!

Yep, that's right, they're thrown in the tub, right before they get the chance to wear more food than they eat!

Why do I do this? I actually get asked that a lot lately. And here's all the reasons why:

1) Because I can.
2) Because at night, they know time is limited and they don't want to stop playing to hop in a tub. They inevitably fight with me and that ramps them up even more before bed.
3) Because there is no rush to their water play before lunch. There is no rush to meet a looming bedtime or medicine time. They can just play until they're all sorts of pruney! (I'm pretty sure that's a word!)
4) Last, but not least, and definitely THE most important reason, because I learn from my kiddos. Especially my oldest who can be more vocal about why he needs things a certain way, or why something works for him today, but not tomorrow.

When I started homeschooling, I thought it would be easy. I'd follow a set curriculum, we'll peter along and it will all just take care of itself. What I didn't count on was how their special needs would change everything about how I learned to teach them in academics and in life.

Bath time before lunch allows them to decompress from the morning. Be it lessons, doctor's appointments, etc. Then we have this quiet, cuddle on the couch session before lunch. We all truly enjoy one another's company and we all in that moment get along. There is no sensory problem that needs to be fixed, no OCD toy issue that is screaming at one or the other from another room. Dishes and laundry become invisible for those brief moments and time sort of stops. I take in every giggle, every smell, every gesture and commit it to memory. In those moments, whether my oldest is ticcing or my youngest can't seem to say what he means, all of their needs, all of the chaos and the outside world disappears. I wish those kinds of moments could last forever.

Confessions of TS mom

I can't complain really. I mean in the grand scheme of things it could be worse - a lot worse. I KNOW this. Down to my toes I know this, but as his mom...it's killing me.

He now says that his hearing in one of his ears is going down sometimes. It's the reason he quit wearing his aids and we fight about him doing so every morning. He blamed his aids for this happening. I knew it was his sniffing and snorting tics. His rapid fire and forceful succession of them, would begin to mess with his ears. I don't know if this will have any long term affects on his already slowly diminishing hearing or not. I can't even decide whether to call his audiologist or not.

He's not beating himself, much like he used to. Slamming his chest with a closed fist until it was purple nor is he punching his head like some horrid wrestler you might see on T.V. He's not crying to hold back the coprolalia, screaming because he says it hurts. So, I can't complain....exactly.

When he was about 4 or so, his Tourette Syndrome was so severe that no one knew if he'd be able to truly function in daily life. Then he was put on Orap and Requip and although he was ultimately removed from them, it's like someone flipped a switch! His tics dropped so dramatically and I was able to see his beautiful blue eyes for the first time in years. And this wonderful perk lasted all these years and I've felt blessed to see his smiling eyes.

So, as the last several months have agonizingly crept by and I've watched OCD slowly creep back into his life, his meltdowns become more and more aggressive, and slowly, but devastatingly, watched his tics began to take control of his life once again, my heart has shattered into a million pieces.

He's unable to feed himself a majority of the time now, he's ticcing too much. He was unable to go to the bathroom at the doctor's office and dang near wet himself, because he had to finish touching the door handle the appropriate amount of times and in the appropriate way, he needs help in the bathroom again because he's unable to stop moving long enough to do it the proper way....I could go on, but I won't.

It's this level of ticcing and OCD and everything else that breaks me. I would take it all from him in a heart beat if I could. Nevermind my pain, frustration or anxiety, I do it just to give him some peace! It's awful being so helpless.

I've called his neuro, whom we've not seen in months and months and the soonest we could get in was the end of this month. Again, I KNOW the wait time could be a lot worse, but it's the helpless waiting and watching that is killing me. I have to continually remind myself, that in his eyes, he knows no different way of life. That while yes, it's all frustrating at one point, this is how he lives and while I'm dying at every little thing, he's such a hero that he doesn't even bat an eye, he even comforts me when he might see me upset (though he never knows why)!

I can only hope to have such bravery and nobility in single moment, not every moment of every day. In this way I KNOW that my children were a gift given to me, to teach me humility, sacrifice, patience, understanding/compassion and above all else unabashed, unbiased acceptance. I hope that I will grow to be worthy of their lessons and that they can understand while in the interim my heart breaks for them daily.

When Tics Attack

Ok, maybe they haven't attacked, but it feels like. It's been quite a few years since DW's tics have been debilitating. It's been quite a few years since anyone's flat out noticed his tics period! He's always ticcing, but with such short bursts and while he's moving, no one seemed to notice. Not even when they were obvious to me.

These last few months though, as his medications that have worked great for all sorts of his behaviors have begun to work less and less. Which has prompted some needed, but dreaded medication changes. It's also brought back the upswing of tics that I've not seen in some years.

Which is neither here nor there for me, but he's at that age now where he wants to be like everyone else, he's in the public more, etc. Which if you're a tic'er can be a hard thing. I don't have TS, but if in the room with someone I don't know who tics a lot and I'm uncomfortable, I find myself ticcing in response, if that makes any sort of sense. The point is that those who don't tic, notice those that do.

So, imagine my dismay over my mother-in-law commenting about how much he was pulling at his collar. Then commenting about how he was going to stretch it out. Then how it was going to wreck his shirt...and on and on.

Follow that by his half-brother, who is here for Christmas vacation, sitting at the table with DW turning to his father and asking his father! Why is he rocking the chair? Why is he touching everything with both hands? Why is he moving his arms like that? Why is he pulling on his shirt? Is that snort still a tic? I mean he's talking about his brother as if he's not even in the room with him! I corrected that and told him he just needs to ask DW and then drop it. DW has no problem saying "it's a tic" or "I have Tourette Syndrome".

As a mom, I fully expect to educate the public on a great many things with my boys, I just don't expect to have to continually refresh the family's memory. It's a tad frustrating. Especially when they can see that certain tics are so frustrating for him and he's bothered enough by them to start a sentence over  and over and over until he can get through it without that tic. Or when he's crying because he's grunted so much he's made himself hoarse and can't actually grunt!

Here's the thing I've taken to saying, if they're not bothering him too much, than they shouldn't bother you. It's not your body, your brain or you throat doing it. So, just assume anything that he's repeatedly doing is a tic and it's a part of him and move on! A bit brash,I know, but some days brash is needed!

I hope everyone has a tic-tacular New Year!

Elopement and NOT the Marrying Kind!

I write in here sporadically now. I do try to keep more time to do this, but at the end of the day...I don't know, I'm exhausted!

It's hard to stay awake when your youngest child (who I swear is bent on world domination) is awake every morning lately at no latter than 4 a.m.!

I don't know if anyone reads this blog or not anymore since I quit writing so frequently, but I decided to share this here in the hopes that it may spare anyone else the scare that I went through last week.

Sensory kiddos and Autism kiddos have a tendency to bolt. While one will run from an offending sensory stimuli, the autism kid my take off for some random reason known only to them and ALSO to avoid the overstimulation that some offending sensory thing has caused them. I experienced the SPD running with DW when he was little. In fact, one time he tried to throw himself off of the moving train at the zoo because of a noise the joints were making!

I'd never really experienced the autism running off, or as it known in Autism circles, elopement, before until last week. I didn't see all that happened with my son, but what was relayed to me dropped me to my knees and took my breath clean out of me.

After his med check at his doctor's office, we were leaving the room and JD squeezed between big brother and I in the hallway and then made a mad dash for the waiting room. I turned for a brief second to acknowledge what his doc had said to me and when I turned back he was out of the hallway. Now, I should mention that JD has gotten ahead of a few times and he simply plays hide and seek in the waiting room. This was not that day though. His brother and I got out into the waiting room and he was nowhere to be found!

I should also mention that his doctor's office is in a hospital. Not a large one really, but it is long (laid out in a ranch style kind of way). It is also, what amounts to maybe a small block away from a major street. I say it's a highway, but it's official designation is "street".  It is used my students going to a large highschool down the street, people going to and from work, etc. It is a pretty busy street.

Anyway, his brother and I take off into the hospital, separating with me going one way and DW going another. At my end, the door we came in, I step outside, call his name and look for him. After a minute or so, I don't see him and don't want DW to panic if he can't find me, so I head back in. Neither of us can find him. We meet back in the middle and let the staff know that we're looking for him. We both head toward the area where we came in, hoping he's just hiding really well there.

A young lady sees my panicked face and tells us that she saw a young child in a black shirt run out of the front doors!! I run out after him, again calling his name and beating myself up for not staying outside the first time. I see an older lady who thankfully has a death grip on him waving at me from the other end of the parking lot! He comes running to me, she's yelling at me, but what she said, I have no idea. The head of the staff comes out to make sure he's found me alright. I'm in tears and he's chipper as anything.

As I go to get him in the car, tears already running down my face. Another mom comes up to me to tell me what happened. Apparently several people where out there trying to get him to come to them. He was so busy looking for something, he wouldn't stop or acknowledge them in any fashion. At one point, the lady who'd gotten a hold of him, was driving a transportation van and almost hit him!!! As if I wasn't crying enough at that point...all I could now picture was my tiny little son and this HUGE van face to face. This mother said, that all the parents in the parking lot were angry with JD's mom up until that point. When the van almost hit him, he laughed and kept running. It was then that they knew he "wasn't right". To make matters worse, all he could tell them was what his name was and not even his last name. Which I KNOW he knows, but welcome to the world of Autism.

It scared me to my core and made me angry at myself. I knew he was a runner, but I'd become so complacent. No more, there are better locks on my doors, I've bought a zipper pull that identifies him as autistic and I've order a tag for his shoes as well, that will hold contact info in case he gets away from me again.


On a side note and a look into his world: When I asked him what he ran outside for, he didn't answer right away. I just kept casually asking him throughout the day. He finally answered: 111. I was perplexed for a while until I realized that he is OBSESSED with numbers and he was looking for our license plate! So, as with all autism mommas, I planned for future elopement moments and I adorned out car with various things that make it stand out for him. Things he loves, things he recognizes and I do so from all angles. So, that no matter what angle he comes at the car, he'll notice it and hopefully stay put next to it.


PLEASE take this message to heart. Pass it on, let everyone know that this happens to ASD kiddos. That we can all do something to help. There are new things coming out all the time, from those smarthpone scanning bracelets, to new GPS ways to track down a child.
We don't have project lifesaver in our county. The next county over does though. Still, if you can afford it there are other GPS things you can do for your child. Even if you can't afford a GPS set up, there are so many things that you can to help keep your kiddos safe. Visit the following sites to get more information:

http://www.autismsafety.org/
http://www.awaare.org/ (The Big Red Safety Box)
http://www.projectlifesaver.org/
http://www.autismriskmanagement.com/

And most importantly, if you see a child out on their own, even if they won't let you come near please do something. So many could be returned home safely if the public would step in and help.