Mommy

When you're autism child is non-verbal, or at the very least a very slow to start talker, you wait ages to hear certain words.

If you're very lucky, like myself, your child does begin talking but, that still doesn't negate the pain in your heart when talking to mothers whose child is still nonverbal. It still hurts your heart to hear them tell you how they long for the words your child can say.

Anyway, I waited for "mommy". lol Of course I did, right? Who doesn't?!tongue emoticon 

When my youngest was 4 he finally began to talk, and still I waited for that word. I wasn't holding out for "love you", I just wanted mommy. lol

Anyway, one day when he was almost 6 he finally said "mom". I remember just freezing, not being able to breathe, and yes, falling to the floor in a big old puddle. It was seriously attractive! 

I loved "mom", but I never got to hear mommy. He always called me mom and then his father is always just "dad". Which is fine and now that he's 7 1/2 it's age appropriate, but a part of me, the greedy part, always wanted to hear "mommy". 

Today, he's standing next to me trying to get his father's attention again, to ask him something or other. You know that: mommy, momma, mom, mom. mom, momma, mommy thing everyone jokes about? Well, he can't get his dad to pay attention to him, so he starts saying dad, dad, dad,etc., and then "daddy". I froze. It was so sudden, I think I scared him. lol

It wasn't my "mommy" but, it close, so close, I had to hug him. He asked me why and I told him it's just a word he's never said, just like mommy and I was just excited and shocked to hear him say it. So, he grabs my face, leans his cheek on my nose and said "mommy".

Yep, once again, I became a puddle on the floor, but a VERY happy puddle!

The Movie with the boys...and You

I know that this isn't the life you had envisioned when you said "I do" all those years ago.

I know that things were simpler then, and there were no expectations of children or thought of what lie this far ahead. 

I know that if there was ever a moment that you thought about children, ADHD, Tourette Syndrome, clinical OCD and/or even Autism never crossed your mind. 

I know that if it had even crossed your mind, even for the briefest moment, you never thought it would've been so hard, or that it would even be hard times two!

I know all of this, I do. I know because - I live it! This is MY life too, the boys' lives. 

I don't think that you have ever realized this - or that you ever will.

I've tried over the years to talk to you, to have you listen - really listen to us, to me. 

Tonight, you were home. You weren't hiding in another room for two hours watching movies on your phone. I was taking the boys to a sensory friendly movie. So, we invited you. You're always complaining that you don't know what's going on; what activities we do. So, in a last ditch effort to include you, we invited you. . I had the two youngest pack their electronic entertainment, and my oldest pack his myriad of critters, got everything together, with the help of the boys. 

You rushed everyone, yelled, and were generally nasty to everyone. 

We got there, and I wrangled the kids and the management, because once again they'd forgotten to schedule a theater to hold the sensory movie. You fidgeted and grumbled when I asked you to help hold some things. I let the boys go over the cardboard displays of the upcoming movies, like they always do. You started yelling and getting cranky at me for it. You forget that the boys and I do this all the time - alone, without you. This is our routine, and how they keep themselves out of trouble. They like to look at every inch of the display, every character, shadow, etc. Then as we wait in line for water, or pop, or popcorn, we discuss the displays, the upcoming movies, what they would like to see, or which ones they think will be their favorites. 

As we all grabbed our snacks, drinks and whatever else the boys had brought, my purse, etc. You grabbed only your things, as did your oldest son. Our youngest, helped mommy and grabbed as much as he could, grabbed his drink and made his way to the usual top row of seats. Our oldest, grabbed all his things (2 bags of comfort items and electronics) but, could barely make it five feet. So, I grabbed his largest bag, his pillow, my purse, my popcorn, drink and our youngest's popcorn and gloves for his costume he needed to wear, and the flyers I had with me. The two of us standing at the foot of these steep stairs, looking up at the three of you....

Him and myself trying to juggle around things in our hands to make getting to the top easier. Our youngest, seeing the distress and juggling, made his way rapidly down the stairs to help the two of us. While your oldest and yourself, didn't. I had to holler up at him for help and even then, he took his cue from you, glancing your way first and then retorting something back to me. He begrudgingly came but, you...you did not. 

When the movie was over, I asked the boys to get their things together, while I went to the restroom. You of course, weren't happy and made it known. 

As I gather the boys together and spread the load amongst the three of them and myself, you without missing a beat, kept walking. Clearly beating us to the car without a second glance back. 

On the way home, you said nothing. While the boys happily chatted in the back. I asked them if they had fun, which part was their favorite, and so on. You griped at the cars in front of us. I turn and calmly start to ask if you could just end the night on a positive note, and I never get to finish my sentence before you're yelling at another person in front of us and then glaring at me for interrupting your rant. 

I'm tired. I don't want to do this. So, I turn to look out the window for the rest of the ride home, while I listen to their happy chatter in the back, used to our silence, and fighting by now. Upon arriving at home, you leave the boys and I in the dust. You come in the house and disappear. The boys getting their nighttime routine on, getting ready for bed. You're nowhere, like always. Always nowhere to be found. 

You don't understand how we got here, why we're headed down the courtroom aisle. I watched you, have relived every minute in my head, wondering if it's just me. I snuggled with our boys as they drifted off to sleep, and we talked about the day. They never mentioned you one time, one fun thing with you, a funny incident, or even a fond moment. They talk of each other, the movie, their favorite game, how funny mommy is and even how much they want the dog to play something with them. They never mention you....because like always, you're here, but you're never here. 

I'm sorry that we lost you somewhere, not sorry enough to want to stay anymore but, sorry that you've missed out on their smiles, laughter, silliness, their antics, and just them being themselves. Even if it wasn't what you signed up for, and you can't take it. You even miss the best parts too

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.