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.

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.

David VS. Goliath

Here's the most frustrating thing about having verbal kids with Autism or Asperger's or high functioning autism (HFA), they LOOK normal.

Most of the time I can deal with the looks, the rude, ignorant comments,even the occasional unwanted attention from a public meltdown.

What I experienced today was above and beyond the normal thing and as an autism mom, it was most disconcerting.

I took my son to an indoor playplace (at a fast food restaurant). He'd had a bad experience previous to today there, with bullies. My goal is to get to him to understand that one bad experience doesn't make the entire place, activity or food a bad thing from now into eternity. Which for an Asperger's kid is a GREAT thing to learn. So, with high hopes after OT and PT, we headed off to this place.

All was well half an hour into the experience and I was pleased. He was going to learn that one bad apple doesn't make the bushel all bad.

Then in walks this little girl, who seems nice enough, but upon arrival everything goes south. A grandparent left, because of the constant screaming, coming from the girl. I'm a fair natured person, so I don't think too much of it. While watching my boys, I note that her father is on his cell phone, and has not glanced at her a single time. During my observations I watch her torment all the children up in this apparatus, blocking the entrance to the slide, not letting them place with this gear/spinning thing, etc. Another 15 minutes go by and I'm about to give warning that it's time to leave. Before I can do so, I hear my oldest son raising his voice, clearly upset.

He's doing everything we've worked so hard on - patience and waiting his turn, manners, not hitting, etc. This girl though is NOT doing anything remotely nice. In fact another little girl had had enough at one point and walked over, slapped the other girl and told her to knock it off! So, I ask my oldest son to come sit down with us and I'll go get his shoes. As I look up to warn my youngest, I see this girl once again physically grab my youngest son and attempt to chuck him backwards!

I am done by this point. My youngest while a verbal ASD kiddo, lacks the ability to advocate for himself. He struggles with receptive language and has no clue how other kids behave. Even if he's seen manners 6 million times, he will still not be able to recall those appropriate actions every time. So, he's just taking what she's doing to him, but I am done. As I holler out "HEY!", my little momma hollers out "HEY GET YOUR HANDS OFF OF HIM!". She immediately lets go and everyone continues to play as they did before. DW, who is sitting across from me, asks for a drink refill. I leave to get it and when I come back in, this girl's father (Who is easily over 6 ft. tall) now out of his seat and standing maybe 2 feet from my 67 year old, 4'11" tall mother yelling at her!

I am completely confused what's happened, everything was fine when I left. Apparently, so busy on his phone, he'd not noticed a dang thing, even though several comments had been made in passive aggressive manner about her, loud enough for him to hear by several people. He's now screaming at my little momma, telling her not to yell at his daughter - which I can understand. So, could she, and she repeatedly tried apologizing and telling him that she was just defending her autistic grandchild. He would get quiet, sit down and then be back up and ranting at her - at the top of his lungs! Each time, she kept apologizing to him and he just would not quit scarring the stuffing out of everyone around us. He kept sitting down and then getting back up and walking toward her!

Long story short, I stepped up to him to get him to stop and my little momma had to go out and get a manager - or two. While both managers just stood there while he began ranting again. I look over and my oldest son looks like he's about to loose it, two women have removed their children from the area. So, I felt like I had to stand up to him again and tell him that she's already apologized numerous times and said she went about it wrongly and he needed to let it go.

At this point, he finally sits down and begins consoling his now crying daughter....It was the craziest thing I've ever, ever seen in my life.

My point of this post is that two things have now happened tonight. This man has now reinforced DW's assertion that this place is bad and he will now probably never go back to the place without a fight. The second thing he's reinforced for me, is that because my children are verbal, have no wheelchairs, crutches, etc. they are always going to have to deal with people like this. If they don't physically see something "wrong" with your child, they don't care and will not be objective.

The thought of how to prepare them is mind boggling at this point. First of all, this guy was obviously off his rocker in general. It's just that I know that battles like these are far from over, that there will be crazies, jerks and people who will try to take advantage...I can barely handle them. How will my boys do, after I'm long gone? How do I teach them to handle bullies? Will they always recognize them?

For now, I will settle for a quiet night at home, where before bed I heard giggles, got lots of deep pressure hugs and kissed foreheads of sleeping, gentle boys and deal with the rest tomorrow.

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!

Thank You Wonder Pets!

Both my boys go to speech at least once a week. My youngest son, he struggles with something called receptive language. Which means that he can talk to you, but he's not quite always able to understand exactly what you're trying to tell him. Often times, when he really wants to convey things to you, he will simply state what would normally be the subject of the sentence and not what he wants you to know about the subject. It's frustrating for everyone involved. His other issue is that everything was "yesterday". It's never 'this morning' or 'a couple of days ago', it's always "yesterday".

So, his SLP gave me what sounds like a simple chore...give him directions in sequential order. Example, first you put the toothpaste on your toothbrush, then you brush your teeth and last you spit. Sounds easy enough when you're given an example, but I'm so not good on the fly. I'm the ridiculous girl in the horror movie that panics and drops her keys, or trips on a log that's clearly visible. Under pressure I loose all momentum, all thoughts and any sense of any kind.

I spent the whole day with him yesterday and couldn't think of a reasonable thing to say to him other than the brushing the teeth thing! How ridiculous am I really? Today between running to my oldest son's orthodontist appointment and then to his orthotist appointment for his feet/ankle braces. I just didn't really have time to think of anything new.

Sitting on the couch at the end of the night, my youngest son asks to watch his newly found, favorite show, Wonder Pets. So, as he sits there fidgeting his bony bum and elbows into my side and I'm trying to figure out where the little minion hid his pants, it dawned on me. No, not where the pants were - I actually had to go get a new pair, my little guy thinks clothes are optional every day! It dawned on me though that his beloved show, whose theme song I used to sing every time my phone rang, was the answer to my prayers! We watched a dinosaur episode tonight and I literally got to say: First they pulled, then they pushed and last they....fill in the blank.... When I asked him to repeat, after about the third repetition, he understand what I was asking him to do and actually complied!

I was so excited and ready to jump up and do the happy dance that mortifies anyone around me, when he dug his elbow into my side to get more comfy. Seriously, how do these kids get so bony?! They're suppose to be all soft, cuddly and not poky.

I digress. My point is that today, I am thankful for silly, overlooked, daily things. Without that show, I'm quite sure I would be into Monday, when his next SLP appointment is and have nothing to report. As the show quite blatantly boasts:

Linny, Tuck and Ming Ming too. We're Wonder Pets and we'll help you!

Thank you Wonder Pets, thank you!

Good Days and Bad

There are moments in life when everything is so far out of whack that you can't find your way out of a paper bag. Then there are those times when things seem to be falling down around you and yet you can clearly see the silver lining, despite it all.

For example, one day your son complete refuses to participate in his occupational therapy session and they call you back from your quick time at an indoor playground with your other son because of it. While there he completely melts down, full on screaming at not one, not two, but three of his occupational therapists! Then melts down in the car on the way home and then does it again once inside the door, all of a whopping three feet. This was just a section of one of those "paper bag" days that I had this week. Did I mention that when he melts down, he often beats the tar out of himself? How he is not black and blue half the time, is beyond me. These are the days I want to go back to bed and pull the covers over my head.


Then there are days when you enter the library and your youngest, screams bloody murder only 30 seconds after stepping through the threshold.

For lunch, you brave the outside world and take them again to their favorite indoor playground. During your visit, you youngest child proceeds to obsess over numbers, writes them over and over and over again, all while making fire engine (siren) sounds and repeating the numbers aloud. During this time, your oldest son has now locked focus on a 1 year old little girl, who has shown attention to his Blue's Clues dolls that go EVERYWHERE with him. While he's just honestly trying to actually engage her in play, he's ticcing like a maniac. I will admit the mother looked way less comfortable than I would've hoped. Funny enough how the mere mention of Asperger's (ASD) and Tourette Syndrome, can seem to empty a place in no time flat!

By the end of the day, I'm mentally exhausted from trying to keep them engaged in whatever activity, assuring them that they would have computer time when we got home, etc. That when OT/PT is over, I just really want to go home, but since we're down a car, we have to pick up their dad from work. So, we go back to aforementioned playground usually. Well, that day my oldest son decided to spill something on his pants. Which for a NT (neuro-typical) child is no big whoop. My son though, we're in the car - in front of his OT/PT/SLP's office and he's stripped NAKED in 30 seconds!!! When I ask him why, he says because his underwear is wet. Being the good sensory mommy that I am, I always have extra clothes on hand for just this kind of thing. I retrieve the extra clothes and much to my dismay there are no underwear in the bag!
So, after a lot of "discussing", I agree to let him go commando....commando! Of all the things I thought I would tell my child to do, this was not one of them!

Still despite this kind of day, despite the mental exhaustion, the stress and the even the physical exhaustion, the day was alright. I found humor in every situation, even while the drama was going on. It was a fine day really.


I do not know why some days are worse than others. I do not know what in me decides that one day the naked meltdown is ok, and on another day that the simple act of screaming can set me so ill at ease. Still, I am along for the ride, I can't complain too much, it could always be worse.

The thing I despise the most though, is the ignorant remarks on how to discipline my child(ren). I sincerely despise that no matter how often I explain what Autism is, or Tourette Syndrome entails, or what Dyspraxia means to motor skills, that still people offer advice they have no business giving. I think it is the on thing I most dislike about being a special needs family. It saddens me; frustrates me that no one truly has any idea what a day entails, the good, the bad and the humorous. The simple joys we experience over small milestones, miracles and sadness we feel when those around us don't understand, when our children are separated from those "neuro-typical" children around them.

Feeling Blessed

Looking back, when my youngest was diagnosed with ASD. I remember being so shocked, I could barely speak. I nodded my head in response to what the doctor was saying, took the handouts and ushered my two wild boys out to the van. Gave them there gadgets to play with and then broke down in tears.

I'm not sure why I cried really. I mean by this point, we'd been told he had ADHD, Apraxia of speech and then there were the myriad of diagnosis that DW had. After a while, you sort of cease going through the denial, grief, acceptance and research phase, you just go on. With the ASD diagnosis though, I was stopped dead in my tracks. I think I cried most of the day.

Looking back, I think hearing "autism", made all my fears for him real. I had and do worry about how he'll be in the future. His receptive language and attention span are not near where "normal" kids' are. I had just voiced to my mother that I wasn't sure he'd ever be able to function alone, as he got older. I think this is why I cried...I think.

Last week, I marched into the Developmental Behavioral Pediatrician's office with both boys yet again in tow, and walked out with what would've amounted to an Asperger's diagnosis (before they changed the DSM) for my oldest son. I didn't shed a tear though. I knew it was coming, I've known it since he was 2 so it came as no shock, when the week prior we were handed the litany of paperwork for family to fill out.

I sit here now, watching by of my ASD boys, so completely different, thankfully both verbal though. Granted JD's verbal skills are a serious stumbling block for him sometimes, but he's verbal. He can say "I love you", he cuddles (sometimes WAY too much), he laughs, smiles and can sometimes seem to show affection even for his brother! DW his verbal acuity is beyond amazing, always has been since he was 1 year old. He is less affectionate though, tells jokes only he really gets, prefers to be on his own most of the time, is very self sufficient, and relentless when he "knows" something can be done.

Both are sensitive to sound, both hate getting wet and both have their rituals that they need just right. Food though, they are again like night and day. DW will only eat soft, HOT foods and eats only 11 different kinds of foods now. JD, he will not eat anything remotely warm, prefers crunchy things and will eat just about anything you put in front of him, except watermelon.

I've been conversing with other autism moms this week, really diving into the community as it were and I keep hearing how so many of them could not do it with two of them...there are days the stress is enough to drive one mad, I won't deny that. Everytime I hear a mom say this though, I think this is nothing. If they were non-verbal and so far down into the autism scale, it might be something else. I am lucky really to have two of them though. To see life through their eyes, to be able to enjoy most things with them and them with me.

I sit here though and watch the two of them, JD playing with his trains and DW with his fastidiousness with the playdough and I wonder why I reacted differently. Why JD's diagnosis was such a shock and a part of me feels bad that I did not mourn for DW in the same way. Maybe it's because I've mourned so many times for him with all of his diagnosis I'm just finally ok? Or because maybe I knew it was there. I'm not sure, but as I go to my first ever lecture tonight on an autism related topic and plan with my oldest his first recreation club this weekend and his last soccer game with TOPSoccer the following weekend, I feel blessed that there is such a great community out there. I feel blessed that my boys are the way that they are. And I wish I'd known more about the autism community prior to now. I hope that everyone out there has a community like this, whether it's for Autism, Dyspraxia, OCD, SPD, etc.

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!

I forgot...

There are times that I honestly don't think about having special needs children. I don't think about how many appointments we have during the week, or what skills we need to work on during the day, or even give a second thought to avoiding family functions, etc.. It's just our life and it's no longer a truly big deal.

Then you get days like today, where after one exhausting episode, you feel the weight of every little slight, every misstep and the whole ball of wax feels like the weight of the world is on your shoulders. You realize everything that you've done wrong and pray for some respite from the chaos.

It's not often I feel this way. Most of the time I have two mottoes that I live by and they keep me in check. One is never sweat the small stuff, remembering of course that unless it's life threatening, then it's all small stuff. Two is remember, it could ALWAYS be worse. Those two phrases have kept me off of the pity pot for the most part and kept my head on straight.

While it's disheartening to know that your child may not be the quarterback of his football team, nor will he win "most popular" at his school, my mottoes have kept me booking and onward to excepting both of their diagnosis and all that they entailed without looking back.

Then you get days like today...

Understanding a Dyspraxic, a child diagnosed with generalized anxiety disorder, OCD, ADHD, SPD, ODD and labeled with "autistic tendencies" is pretty simple to me, but even I get complacent when things are going well and I forget. Today, I forgot. It apparently was such a grievous mistake that now the entire neighborhood knows I forgot!

My husband had the day off and I decided I needed a break, a little me time if you will. We decided that he would take the boys to their OT and PT appointments today and I would relax at home on my own. I forgot to tell my oldest of the change in plans though...

It was a terrible scene and my husband finally got to witness one of his meltdowns in person. He will never complain about what he considered a "meltdown" again. lol It was some horrible scene you'd expect to see if someone was abducting your child! Complete with blood curdling screams, a child grasping at the door frames as he was carried to the car to go to his bi-weekly appointment. He was clawing at the walls, grasping onto me as if he was never going to see me again, all while screaming like someone was going to murder him. It was awful really.

The description, while I'm sure is horrifying to some, isn't even doing what happened justice! Needless to say after 20 minutes of prying him off of doorframes and myself more than once, he'd gotten my youngest so worked up, he was hysterical and scared and just wanted mommy as well.

Knowing that I could not fully explain to my youngest who still struggles with receptive language skills, what was going on and that he and his brother were really ok, my heart broke. I gave in and went. I KNOW I should've stayed home, the ABA and the psychologist would have given me a stern look for caving in and I know it was wrong, but looking at my little one's face, terrified out of his mind, I couldn't say no.

Afterwards, I was so exhausted. I am so exhausted. I'm upset with myself too. My neighbors who've been amazing through the years with the amount of screaming that I know they hear from my house, were even startled today. They know my children are special needs, but today even a few of them came out to see what was going on.

For those of you with neurotypical kiddos, imagine if you saw a mother and husband carrying their 8 yr old child out to the car, kicking, screaming for mommy, as if he was being abducted! I was painfully aware of how it must've looked, even to those who knew my children. It's times like this, I want to crawl back into my room and not come out for a day. Partly out of embarrassment, and yes, even after all these years, I still struggle with accepting those people who look down their noses and not understanding. The other part of me that wants to go in my room is exhausted - mentally and physically. I can't tell you what kind of a toll this can take on a person and it doesn't help that as soon as it's over, all I can think is that he's only 8, how many more years of this can I keep doing? How often is he going to keep doing this? Which we all know better than to do. lol Today though, I did all of those things and it got the better of me.

I've sat in my room now, one kiddo in bed and the other snuggled up under my left arm, passed out for two hours now thinking about my actions and emotions. I've come to realize three things. One, tomorrow is another, brand new, bright, fresh and cheery day. Two, don't sweat the small stuff - this is small stuff and three, it could've been much worse. Fingers crossed tomorrow is another day.

Life since Dyspraxia Diagnosis

I haven't written in so long. Life is so many kinds of crazy now, truly it is. We're starting homeschool with my oldest in less than a week now and I've had to relearn, revamp and reapply every thing I've taught him thus far since learning FINALLY of his correct diagnosis, before the end of the last school year. He was diagnosed with Developmental Dyspraxia.

Then there is learning how to circumnavigate my youngest's form of autism (ASD). He's very verbal, though his receptive language skills are a bit off. He often will say the opposite of what he means, gets confused very easily in a conversation and frustrated when he can't convey what he means. These are just a few of his issues with communication. Don't include the sensory issues, sensory sessions at home, with his OT and even his PT has resorted to doing OT in her session with him, he's in that much of a need for it. I could go on, but you get the gist - CRAZY CRAZY time at my house!

My oldest is finally making progress though! He can tie his shoe now, well he can mostly tie his shoe now. Which is fantastic! So what if I have to retie it sometimes, most of the time or if he can only do it once or twice a day, the point is, he can do it now!!!

He can write pretty well now too. He might be a kindergarten level now, but at least it's legible. Who cares if it's written as big as your head, at least you can read it! Because of being able to kind of write the alphabet better, he has taken to reading a bit more on his own and attempting to write things out by sounding them out, rather than continually asking me how to do it. Which is HUGE! We're working on pencil grip now, in the hopes that this will be kind of the last key in getting him where he needs to be.

Riding a bike....this is a work in progress for sure. He needs to learn balance and them time his right and left legs/feet to go at the same time...it could take a while. Seriously though, he has started to run a bit better now too. Not all squatty and arms out in a defensive position. He can almost pass for normal running though.

Once he's a bit farther ahead, we work on his ASL, which he's avoided doing because obviously, if you haven't guessed it yet, Dyspraxia affects many, many things, including motor skills. So, sign language has been a bit tricky for him, but we finally have hope that he might be able to sign without frustration or much issue one day. Makes both him and myself feel much better.

Now, we work on memory skills...I've no idea how we're going to do this, but I'm game. Since getting the correct diagnosis, he's come so very far and I'm so very proud of him. I can't believe it's only been a few short months of this and he's made such huge strides. It's been so inspiring to say the least.

I Gonna Wear Hearing Aids...

This is what my youngest declared happily to his new audiologist last week. To which she actually said, "You just might buddy."

His daddy, his beloved Papa and older brother wear them as does his half sister, who he's met a few times. She's much older and has her own life so she doesn't get to visit too often. So, aside from myself he is the only one without aids. So, I can see why he'd say it.

There is nothing wrong with that. Absolutely nothing!

He'd just finished his hearing eval though and the news was mixed to say the least. After being told for several years that his hearing was fine, I was just told that it was not. I wasn't upset at this though. I mean I was, obviously I was, how do people get to decide that a bottom of the "normal" range is NORMAL?! And then tell you, your child's hearing is fine.

I find out that his tympanograms show middle ear dysfunction of some kind, especially in one ear. That his last test and current test show a very mild hearing loss until you get to the higher frequencies, where he hears just fine. It sits directly on the border of where the "normal" hearing and "mild loss" line is. So, I guess that it's up for interpretation, but still in a family with a deaf history, don't you think that this was worth mentioning?!

I've been after him for months to pay attention, turn down the TV, turning my back when I talk to him, even walking away when I'm speaking, etc. Now, how awful do I feel?! The audiologist is concerned enough at where it sits to have us come back in another 4 weeks to recheck even.

So, am I upset? HECK YES! Am I upset that he might be aided? No.

Yes, that's right, no I am not upset at this. Is it wrong that part of me is hopeful that he gets his aids? I'm sure as a hearing parent some would say so. I mean we want our children to hear our voices, to hear theirs, right? Being really the only hearing person in this Deaf house though, I realize that it is just as important to HoH/Deaf people to want to have the same camaraderie. The only hearing boy in the house wants to be like his Papa, his daddy and his brother, what's wrong with that? Nothing.

My only concern is that all indications are that there is something in the middle ear not moving and that it might require more tests and possible surgery to fix. Though his loss is on both ears, indications are that one has this middle ear problem but, we won't know for another month!

It's always the waiting that kills me though. I hate waiting. I've never been good at it, you could ask anyone that knows me and while these boys have taught me some bit of patience, where it concerns them, I feel like that kid in the candy store who is told not to touch anything...I'm completely hopeless! lol

A little girl named Mary

It occurs to me that I haven't written anything in a long time.

Life gets in the way sometimes. All the expected things and all the completely unexpected things as well.

Today I need to get some things off of my chest. So many people I know are pregnant, which is great and exciting and a truly wonderful thing. Yet, I feel a little sad by it and frustrated. For many reasons really, not just one thing.

Not because I've been trying to have more kiddos. I physically can't...well, I could but, risk dying of hemorrhaging on the table rise exponentially each kiddo I have. Yes, that means I literally almost died having my first son. And while they were ready for the second time, I was told the scar tissue, etc. was extensive and the risk of bleeding out again would be greater. So, despite the fact that I always imagined 4+ kiddos, I opted to have my tubes tied. There will be no more trying for any new addition for me. While this fills me with a mix of emotions, I've slowly come to terms with it over the years.

So, why am I sad and frustrated?

It's the things that no one talks about when you're pregnant. The things, as a pregnant mother we don't want to talk about or think about. We want the baby born on term, with ten fingers and toes. Babies who can eat formula or breast milk, who doesn't need any surgeries to survive and will never know what a NICU is. We want that and we all have a right to that, to hope for  that.

I know I was that way and I know that one little girl, Mary, was her name, changed my whole life and I was never more grateful that she did too.

I was somewhere between 6 - 8 months pregnant with my oldest son when I met her. I hadn't yet been diagnosed with gestational diabetes, I was rather large for my gestation but, still didn't yet know that there was anything wrong. I was blissfully ignorant and my baby was going to be the prom queen or the football star...

I went to my husband's relative's funeral and there she was. I saw Mary instantly across the parlor. Long dark hair, cut in a straight line. She had bangs too and glasses and smiled at everyone as they passed her. She stuck close to her mother, was probably the most well behaved child I'd even seen really. I did my best to avoid her though just the same. Which was hard because I couldn't stop glancing at her from across the way and when she spied my gigantic belly, her eyes got wide and gleamed with immediate fascination. I made excuses to leave the group Mary and her mother were headed towards several times. Up until I finally could avoid them no longer without it being obvious.

She stood there, looking at my belly, not really saying anything for a long time. Just smiling at me, as if I was a Disney Princess! I tried my best not to look at her though.Until she finally asked to touch my tummy even before she did so, which to be  honest was more polite than most adults really. She asked me if it was a boy or a girl, again very politely. At one point as everyone sat on the chaise lounges or chairs, I sat on the floor as it was much easier to get up and down for me...weird I know but, trust me, it was easier!

Mary, who was still glowing at me with her beautiful smile, asked if she could sit next to me. Which again, more polite than most children. She asked me several times if she could touch my tummy and each time I let her, she began to talk to me here and there. Always polite and always with a cute smile and gleaming delight in her eyes.

Every fear I'd secretly harbored, every worry I'd ever had about the well being of my child, I'd come face to face with in those moments. When I left there, I'd made up my mind, no matter what, it'd all be ok. Mary's innocent heart, her eternal curiosity, her bright eyes and beautiful smile, opened my heart to everything that day. I tear up even now, just thinking of her and that day. She forever changed my world that day.

So weeks later when I found out that something was physically wrong with my son, I thought of Mary and knew it would be ok. Months later when they told me that my son would most likely be cognitively delayed or physically handicapped in some way, I thought of Mary and KNEW it would be ok.

Years later, when I became pregnant again, all the "What ifs" raced through my mind but, I thought of Mary and knew that we'd be alright. And when my oldest son began to feel comfortable socializing, a "friend" of mine at the time expressed her concern that the children of choice for him were the ones with Down Syndrome and only those children. I immediately thought of Mary and told this woman, "we could only be so lucky".