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.    

   

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.

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.

A Look Behind the Autism Curtain...

Like it or not, diagnosis isn't the end of the world per say. It's the beginning of another.

Each day bringing new surprises, the good and the bad. Bringing new discoveries, new practices, new experiences...each day is just that new.

Today, my day was bad....really B.A.D.!

I'm sharing what a real day is like with two Autism/Sensory kiddos (and then some) because most people don't have a clue what we really go through. I've carried my oldest son out of one too many stores to ignore the glares, the shocked looks of horror and the condescending sneers, not to know this.

So, today this was my day....

I took my oldest to his PT (physical therapy) appointment. My youngest and I went to an indoor playplace at our usual spot. He refused to play though, because it was too quiet....have I mentioned he hates noise and covers his ears quite frequently and screams?!

Pick up my oldest son and head out to get lunch before the next appointment. Mind you, I didn't schedule the appointments this way, they rescheduled and my oldest son, truly needs these appointments. So, the boys don't want to go to the usual place, they want to go someplace "new". New in my head is codeword for MELTDOWN! I shudder in fear and try to talk them out of it. They insist - I should say, my oldest insists that they're fine and can handle it. My youngest only understands "new playplace", he's all for it.

We get there and oh my goodness, the noise was unbearable to me!!! My boys were so excited that they didn't care though. My oldest son disengaged several million times from play and from his brother, never once did he engage another kiddo. And when someone pushed him from behind, the interrogator came out. Every kid that went down the slide after, was drilled about whether they pushed him and where they were when he was pushed. I was a tad on red alert at this point, but the other half of me thought: Aha, socialization!

Not even ten minutes later, bring on the reign of bullies. The same three boys, over and over and over again, began to take over his spot. Literally shoving him out of the way. Now he knows that though these guys tower over him, they are his age (he's very small for his age though). So, at first he tries to reason with them. One of them calls him a baby or something to that effect and then they ignore him. Needless to say, my hackles went up and they were separated. This happened several other times and I decided it was time to go, very much to my oldest's dismay. He attempted to regulate himself before we left by sitting on this spinning thing in the toddler section and spin repeatedly.
Now mind you, my youngest while verbal, doesn't do receptive language. Meaning you can talk to him, he may agree, even say yes or no, but chances are, he doesn't have a clue what you're saying. So, while it's clear when he's with other kids that he doesn't "fit in", they always sort of accept him and welcome him in. They never do this for my oldest and it's hard on him, because sometimes he notices and other times, he wants to play with his brother and notices that brother isn't around.

Anyway, long story short, we get to their OT (occupational therapy) session. My oldest begs them to go first because he's "had a bad day". They go check, but have scheduled testing for my youngest, who always does OT first anyway, so he has to wait. This sets my oldest off, just for a few. I wouldn't be mom, if I couldn't reign in mini meltdowns. :)  This should've been my warning right there, but I didn't listen.

Two hours later, when it's time for him to go, he's wasted too much time and lost his free time at the end of the session. Which is not to his learned schedule. So, of course, he meltsdown. At one point, he sees something out of place and NEEDS to replace it. We tell him that they can do it, because he's already yelling loudly. This panics him and he's yelling and screaming much louder, and backed himself into another room. By this point, I'm trying to retrieve him because the OTs, all three of them, have another kid there waiting and my son is scaring the grandmother to no end, the boy is starting to look upset and he's scaring my youngest as well. I get him out of the corner and then he becomes hysterical. As I'm trying to reach down and get him off the ground and out of the building, my youngest son, who is now freaking out because his big brother is so loud, has clutched not only my leg in a death grip, but he has my arm as well. So, I can't get a hold of my oldest son.
I finally get a hold of him, and let me tell you, with an autistic child, that is not easy feat in and of itself! As I'm making my way out of the door with this kicking, screaming child, my sweet little 5 year old knows the drill enough that he picks up big brother's lovies on the way out of the office. As I struggle to keep hold of my son, his little brother gently and lovingly places his big bother's lovies next to his car seat, climbs in and sits in his carseat like an angel!
In the meantime I'm no longer able to keep hold of my son and have him sort of pinned to the parking lot outside the opened door to his seat. This sounds bad, but he's trying to bolt back inside and fix the object still and he's screaming bloody murder. I somehow manage to get him in the backseat and this is how ingenious they can be in a meltdown when compelled to finish a compulsion, he wedges himself completely under the passenger seat, from the back! Now, I can't pull him out with the back seat, jammed in his back and I am unable to reach under to get him to bend his legs.
Little brother though, knows the drill. He sees his brother look at the open car door on his side and he immediately jumps up to shut it. I could've kissed him, had I been able to let go of my oldest. Now the only open door is behind me. So, I hold onto my son as best I can, rocking him, sweating, crying, assuring him that he will be ok, that I understand what he feels he needs to do, but that he'll be ok. After almost 20 minutes, I'm able to stand up and let go of him. He's still yelling, crying and huffing a little, but he's no longer ready to bolt. Which is good because my back and knees are broke and my arms feel like they weigh fifty pounds.

After several more minutes of me calmly talking to him, he agrees to get back up in his seat. And just like that, it's over for now. All this over the need to stay on schedule and to put something away where it belongs!

To anyone outside it looked like a spoiled child, or that he might've been reacting to me holding onto him, but this is our life. This is what we do. We deal with this every single day. And this is only one thing, one page, one instance. There are those of us who have it much worse, those of us, like myself that have two autistic kids in the house. There are those like my sons that have not only Autism, but multiple other comorbid conditions. Our life isn't always pretty, it's not always bad either, but what we really need more than anything - good or bad days, is a little less judgement from the average joe.

The next time you see that mom struggling in the store with a screaming kid, do me and the rest of us a favor, don't judge, don't glare, just don't! Take a moment to notice that we might be struggling, that our child may not be loosing it over a toy, that we may have two with special needs. Take a moment to tell us that we're doing ok, that you aren't there to weigh us down with more baggage we don't need.

Be humane to us, be compassionate, be kind. We will ALWAYS return the favor, whether to you, another stranger or another comrade in arms. We never take the things for granted that the rest of the world does. Please remember us, the next time you want to sneer at a screaming child and do what is RIGHT!

Autism...Hear Me Roar!

It's been a heck of a month. It really has. As September quietly, beautifully slips away today and October sneaks up, I can't believe that another year has gone by. I can't believe that I've lived through this last month. I can't believe all the changes that have happened in just 4 short weeks.

My youngest, who is on the spectrum, is finally in speech therapy again, after being on a wait list for 6 months. I was told, it will be intensive and require a lot of "drilling" at home. Sounds fun, doesn't it? My oldest, who has Tourette Syndrome, Intermittent Explosive Behavior Disorder, ADHD, ODD, OCD, etc. is now being tested for ASD as well tomorrow. 

My youngest who despite his diagnosis, was always pretty easy to handle, has become increasingly agitated where his communication gap is concerned. My oldest, has melted down repeatedly every day to epic proportions. And while I know the word "epic" is used so passively now, I assure you this is the only world that does what happened with him justice. In one day, I carried him out of 3 different grocery stores as onlookers stared, gave disapproving looks, and pulled their children away from - even though they were easily several hundred feet away. I suppose to some degree it was my fault, after the 1st meltdown I should've packed it in, but I had to get that stuff done that day.

My youngest, was put on medication to help his attention, which is suppose to help him with his communication in the long run. And while I tried for two years to NOT put him on meds, after going to the bathroom for seriously only 60 seconds, I came out to find him dang near on top of my fridge. Mind you, my fridge stands alone in my kitchen, no counters are anyway near it. So, I agreed to give him a small dose of medication. It's not a lot and he's still all over the place, but at least now I can go to the bathroom without worrying he's going to set the house on fire or get himself killed!

My oldest, I fought for 3 years to keep off of a certain medication. After 6 months of violent meltdowns, and most of them in public, I finally gave in and tried him on it. He's been on it all of 2 weeks now and while he now has minor meltdowns 2 - 3 times a week, they're manageable. Granted I had to chase him down at my mother's apartment when he bolted out the door because I was going to wash his dirty face, but that was mild. Though, I'm sure her neighbors loved watching me get my son in the grass, wrap my legs around his, bear hug him with one hand and wash his face with the other! I suppose though, at a retirement village, that would be exciting entertainment!

I started taking a chance as well. I began to not only take part and end up heading my state's Dyspraxia Foundation chapter, I decided to start taking part in the local Autism Society. I was worried, because my oldest son is verbal, he's ahead for his age actually. My youngest son has great expressive language, for the most part and he struggles with the receptive language, but he's verbal as well. So, I thought that because neither boy was so far down on the spectrum, that we'd not be welcomed or fit in anywhere. 

So, I dipped a baby toe in. I began participating in their online support group for moms. Then I signed my oldest son up for soccer. A special needs soccer team, filled with every kind of special needs, not just Autism. Which has opened so many doors for the boys and for me. 

I've always been the kind of mom who gives herself to everything she does and most especially her children. Which those of you out there who actually read this know, that is not the smartest thing to do really. It's like the flight attendant who tells the parents to put the mask over their own face before their child's. I never agreed with that before, but now I can see why and most importantly, I agree!

As I've learned more and volunteered more, put ourselves out there more and connected with other mothers close to us, I've realized how much we all have in common and it's amazingly freeing. I was speaking to one of the heads of the local Autism Society and I was suddenly saddened to hear her describe the reason many mothers or families didn't participate in many of the activities. It's the same reason I never participated prior to now...I felt that because my kids weren't verbal we'd not fit in, so to speak. She tells me that the moms of kids who are non-verbal feel the same, that because there are so many of us with verbal kids they feel like that don't fit either. It breaks my heart to hear this. I wish so many more of us would get out there, share our stories and whether or not we're from verbal or non-verbal families, realize that in the grand scheme of things, we're all one big family! We all need to stand up together and educate, push for better legislation, better insurance coverage, better IEPs. We need to stand up and ROAR! Not be sitting on our own side of the respective fences and be afraid to put ourselves out there. We all know the behaviors, we all know that no child is the same and it's truly sad that we're not willing to come forward more and be apart of something special. If you know someone who is afraid to come to a local autism event because either they're child(ren), are verbal or because they're non verbal, please encourage them to just get up and out and participate! I can't tell you how essential our mental health is as the caregivers to our kiddos. Please take a minute and support yourself, or if you are the caregiver reading this, please stop and do something for yourself today. Most importantly, connect with other people in your local community, you need that support. Lets all roar together!