Wednesday, January 29, 2014


K's birthday came and went. She was excited for double digits, although sad she would no longer be nine. Each year she cries a little, missing the age she was before. The epitome of not liking change. At least 10 is special. She had a fabulous (and I mean, fabulous) birthday party, complete with a man who brought all her favorite animals, a My Little Pony cake, and a sleepover with a couple friends. Her first real sleepover. Something she's seen on TV, and something she desperately wanted. Make-up. Nail polish. Snacks. Hanging out in our playroom, sans annoying parents. I am pretty sure there was a My Little Pony episode she used to plan the event (not kidding.)

K thought the day was perfect. The sleepover, perfect. I chose girls who are nice to K, and ones I knew wouldn't cause tween drama. Sure, there were times K was off doing her own thing, but there were also times she was totally engaged with her friends, as they slathered on pounds of make-up, or watched TV. The next morning she happily sat and did Shrinky Dinks with one of them. K declared it her best birthday, ever, and it was. She was happy, like really happy, which is something I don't often see.

Of course, I had a more difficult time with her turning double digits. Eight years until 18, kept going through my head. Where are we? Where are we going? How will we get there?

She's still young, people tell me. She is, but these past 10 years have flown by, and we are still gasping for air at times.

She's doing so well, people tell me. Except, they don't see when she's not doing well, and I am not one to overshare.

We have 8 short years until she's 18. We have puberty. We have the hardest years of a kid's life ahead of us, and it scares me. I know I'm supposed to be positive all the time, but the older K gets, the easier it is to let doubt take hold. There are so many things K wants out of life, things she wants, but the way she is wired makes her path so hard. It just does. I know there are some who don't want to hear that, but it's the truth.

We recently had some new testing done, and it makes me sad. Let's just say, being treated a certain way, and basically traumatized by certain people (you can guess where this all happened), have killed any ability she has to cope. She has so much potential, but reaching it? Not easy. Finding good school placements? Not easy. Having faith it will all be OK? Not easy.

I know these tests don't define K. I know they aren't always accurate. What the psychologist saw was a true representation of K, though, beyond academic skills, which can wax and wane. Beyond any box she checked off, or circle she filled in. She saw K as a person, as we see her, and that part is the most important. It's what gives us the most accurate information.

Her doctor said K was one of the hardest kids she's tested. Heck, they didn't even finish all the tests. So, she's a kid you might look at and say is high functioning, but she doesn't function highly at all.

I shouldn't be sad, but I am. I can't help it. I'm a mom, it's what we do. I desperately want K to be accepted and loved and given a chance. I will always fight for that. Unfortunately, we don't live in a perfect world ready to love and accept and give kids like K a chance. We don't live in a world where it's easy to be different.

I do need to live in a world where my my kid is happy and fulfilled, though, and even that, right
now, is hard to imagine.

I wish everyday could be like her birthday. Where she was excited and happy and unconditionally loved by everyone around her. I wish I looked at 10 the same, innocent way, she does. The one thing that gets me through is reading blogs by those who are young and autistic (Autism Speaks debate, aside.) Yes, we only have 8 years, but we also have 8 whole years. There's hope, and I just need to focus on that.

10 is magical to my girl. I hope I can see the magic, too. For now, I'll just sit here and relive that perfect day.



Friday, January 24, 2014

What We Need to See

There was a blog post that made the rounds yesterday. I saw it several times on Facebook, but I didn't read it until this morning. The first few lines of the post showed up whenever the blog was shared, and I almost shrugged it off because I saw the word "apraxic". In my ignorance, I decided the post wouldn't apply to our lives, since apraxia is not a diagnosis either child carries. (Apraxia is a separate disorder from autism, and is what makes a person "non-verbal". You don't need to be autistic to be apraxic, and you don't need to be apraxic to be autistic.)

You can go read the post HERE.

As I began to read, it hit me. Hard. This blog post was so much of K's life. No, K isn't non-verbal, but she also isn't able to fully tell people when she needs something. Really needs something. Things like a break, quiet, or people to just stop throwing words at her when she isn't able to process it all.

It reminded me of a dance class last fall. K was struggling. Just having a really hard time. Because K is a verbal kid, and because there are a lot of things she can do, even I sometimes expect too much. In the middle of class, K stopped wanting to participate, started to cry, and tried to leave the studio. At the same time, her classmates were cheering her on, chanting her name, and trying to get her to join with them.

I stood there feeling aggravated. Why wouldn't she just go to them? They were cheering for her! They wanted her to join their circle! This was all positive, right? So why was she standing there, on the verge of a meltdown?

I just didn't get it. I was looking at it through my own eyes. My own, non-autistic eyes. A group of people cheering someone on? How could that be a bad thing?! I was angry. I just couldn't understand. I allowed my own feelings of embarrassment get the best of me.

It wasn't about me, it was about K. How she was feeling. How everything sounded and felt to her. How she needed someone to just get, in that moment, that she wasn't being a bad kid.

She was already overwhelmed, standing inside an echoey dance studio, bombarded by words. The loud demands of others. To K, their voices must have equaled a thunderous roar. One that upped her anxiety, and made the tears come faster.

Maybe their cheers made her feel worse about needing a break. Maybe she felt embarrassed that all eyes were on her, when she just needed some time alone. Maybe the whole situation, as positive as it looked from the outside, made her feel even more different, in a place where her differences shouldn't have mattered.

What she needed was to be told it was OK to get away for a while. For me to take her somewhere quiet, and not make it seem like a bad thing.

I didn't look at the situation through K's eyes. I didn't respect my own child. Yes, she's verbal, but in those moments, words fail. I didn't realize until reading that blog post just how much I had failed that day, as well.

I thought I couldn't learn from someone whose experience seemed so different than ours, but I was wrong. Our kids are more alike than we know, and trying so hard to separate "levels" of autism means we are probably missing out on a whole lot of information our kids need us to hear.

Lesson learned.

Tuesday, January 21, 2014

The Perfect School

Today K and I made a list of things she'd want (or not want) in her perfect school. Though we love the school she is in now, it isn't long term (which we always knew.) She needs to be challenged more academically, and definitely needs more social opportunities (right now she is 1 or 2 students in her class.) This school has done a lot for her, mental-health-wise, and for that we are eternally grateful, but at some point we'll have to find a new placement.

So, today, while we were getting in some afternoon snuggles, we decided to make this list. Actually, I asked her if she wanted to make a list of wants and don't wants, and she agreed. We make so many decisions for our kids, I wanted to make sure K is represented in whatever we choose to do down the road. Some of her answers I prompted, knowing what she loves about her current school/misses about her old school. Some of her answers she gave without any prompting at all. I think the most important answer was no restraints. This was 100% her, no prompting needed.

So, here is K's list. Short, sweet, and oh-so important:


A class pet
Nice teachers
Good food
Culinary arts
closer to home

Don't wants:

Homework (she hasn't had that in her previous two placements, anyway.)

One of the things K loves most about her current placement is the culinary arts program, so I am really hoping we're able to find another school that offers that. She loves using the iPad for all her schoolwork, too. The fact that physically writing is such a challenge for her, and can get in the way of her overall performance, an iPad, or laptop, is definitely something we need to make happen.

The class pet? This might trump everything else on the list, but is probably the hardest thing to find. Especially as she gets older. We toured a few different schools, and class parts are few and far between. I'm sure K could convince a teacher it's something absolutely necessary, though ;)

And girls. Well, we are realistic about this one. If we could find a school with even one other girl K's age, we'd consider it a win!

Nice teachers, good food (in the cafeteria), and art class are all things that will hopefully be easier to find. As far as distance from home? Well, we live in the boonies, so nothing is going to be close. One can always hope, though!

As soon as we started making the list, K said something she wanted was "no restraints". Actually, what she said was she didn't want "that thing at the other school", and I immediately knew to what she was referring. It's sad that has to be on the list at all. That in this day and age educators can't come up with a better way, or have enough respect for our kids that restraints and seclusion aren't even on the table.

But, alas...

A school's policy on restraints/seclusion is something that will be immensely important moving forward, though.

As for homework? Most of the programs don't have homework, but that isn't a given. Being that we needed a tutor specifically for homework when K was mainstreamed, I wouldn't mind no homework either. It caused a lot of unneeded anxiety and behaviors in our house, and I personally don't think homework is necessary, for any kid. Reading at home should be the only homework a kid gets.

K considers anyone she doesn't get along with a "bully", so this is a hard one ;)

I am hoping that K's next placement is the school she will be in for the long haul. It would be amazing if we could find a program that could get her through high school, even, though I know that's a tall order. I just don't want her changing programs every couple years. Hopefully we can take some of her wants (and don't wants!) and find a program that will work for her. There is no perfect school, but I want to make sure that K has a voice in whatever we choose.

Monday, January 20, 2014

Don't Die. Or, It's Time to Take Care of Ourselves.

After the whole, I think I'm dying, incident, it really hit home how important it is that I, you know, make doctors appointments for myself, and get my stress level under control. First stop was the GI doctor. I mostly made the appointment because, since I don't chew my food like an adult, I swallowed a piece of crusty bread that basically cut it's way down my esophagus, into my stomach. After a week of pain, I decided that I should consult with an actual physician, since images of said crusty bread turning into a giant, festering, wound, danced in my head.

Turns out, I wasn't so far off.

After speaking to the doctor, she recommended I get an endoscopy. I have a history of reflux, and other fabulous stomach issues, especially since having kid #2. I'm not a fan of anything medical, especially when I have to be sedated/put under, but I put on my big girl panties and kept the appointment. I am OK with making appointments, it's the keeping them part at which I do not excel.

So, long story short (sidebar: waking up during an endoscopy is horrible and painful and next time I will make sure they know to drug me up good), it was discovered that I have "multiple stomach ulcers".

I guess all those jokes I made last year, about our fight with the school slowly killing me, were not all wrong. That and other things have left me with, I believe, 3 beautiful ulcers. Three. Not one. Not two.


I was instructed to basically never take ibuprofen again, and up my Prilosec to twice a day. I actually didn't remember about the Prilosec until yesterday, because they give you this information while you are still mostly drugged up, not thinking it important to maybe send you home with any written instructions.

I have a follow up with GI, but not until the end of February. It was an appointment I made before the endoscopy, but I am sure if they want me in sooner, they will let me know. There's really not much to be done for ulcers, besides avoiding certain meds, and probably easing up on the Franks Red Hot. I just have to take my Prilosec and hope things heal.

Of course, now I am basically afraid of all food. Every since the bread incident, I've had pain every time I eat (and sometimes when I'm not eating), and now that I know there is actually something wrong, well, all food seems like the enemy. I am guessing maybe the bread attack angered the ulcers, as I never had pain before that, or else it's all just a big coincidence. Who knows. The whole situation just stinks, basically.

Oh, did I mention that on the way to my endoscopy, probably two whole minutes (or less) from the hospital, we were rear-ended? Yep. As though my nerves weren't already shot, some college kid decided braking wasn't a mandatory thing, and slammed into us as we were stopped so the person in front of us could turn. SO, the same bumper we just had replaced last August because of a similar accident, now has to be fixed again.

Anyhow, moral of the story? Take care of yourself. Making sure you are healthy needs to be a priority. I'm not telling you to take a vacation, or go get a pedicure, because, I get it, there's not always time (or money) for those types of luxuries. I'm telling you make sure you are around for your kids for as long as possible. That's what's important.

So, join me on the year of actually going to the doctor. Don't let your one stomach ulcer become three.

Sunday, January 19, 2014

Sad Face

July 31st and Aug 19th are two dates that are burned into my memory forever. They are the the dates of B's first seizure, and of his last. Well, his last so far, as much as I hate to qualify it like that. The last one before he was admitted and given giant doses of Depakote, after experiencing 3 Grand Mal seizures over the course of 5 hours. 

July 31st is also the last morning he woke up in his own room. Excessive Googling, and finding out there is something called SUDEP, which is basically SIDS for people with Epilepsy, brought him into our bed, and won't allow him to leave. 

I won't allow him to leave. 

Last night, as my husband, B, and I were vying for room in our bed (alongside our 65 lb dog), B started crying and told us he just wanted to sleep in his own room. He said it a few times, frustrated and teary-eyed, and only one word escaped my mouth. 


When my kids sleep in our bed, I wake up at the slightest movement. It's a good thing when you want to know if your kid starts seizing beside you, and a bad thing if you ever want to feel well rested. I just can't bring myself to let B sleep in his own room again, alone, because what if...

What if? 

There are (expensive) seizure monitors on the market, and I honestly thought we'd have one by now. Mostly because my husband isn't a fan of sharing bed space with a child who rarely stops moving all night. But, it's a lot of money, and easier to just keep B in our bed. Even with a monitor, I don't trust anything as much as I trust myself. I wouldn't feel comfortable without B beside me at night. I like having him close, within my reach.  

But, he's 7, and the novelty of sleeping in our bed has worn off for him. It's been a long time since he's spent a night in his own room, and he's always been a kid who preferred his own bed over sharing one with us. Even as an infant, when I wanted to co-sleep, he preferred his crib. We actually moved his crib into our room so he would still be with us, even though he didn't share our bed (yes, we were those crazy AP parents.) 

But moving his bed into our room now just isn't an option, and, yes, would be over the top. I just don't know how to let go, or ever feel comfortable letting him sleep alone. Even if we did have a $600 seizure monitor hooked up to his bed, it's not the same as having him with me. I know he can't sleep with us forever, but, well, I want him to sleep with us forever. 

I am not sure what to do. I hate that B is so upset over having to stay in our room. I know how much he loves his own bedroom, and I know he doesn't understand why I'm scared to let him sleep alone (nor do I want to share my reasons, because he doesn't need to worry about such things.) 

I know B hasn't had a visible seizure since August 19th, but that means nothing to a worried mother. Nothing. It also doesn't mean he won't ever have one again, especially if he has a growth spurt, or gets sick, or anything else happens that makes his medication a bit less effective. It also doesn't mean he can't have a random breakthrough event. Epilepsy is a mystery. We have no idea why B started having seizures, and not having a cause just makes it a lot scarier. For me, at least. 

Seeing your child have a Grand Mal seizure is not something I would wish on my worst enemy. Those scenes are with me forever, as is the feeling I had the first time, when I honestly thought B was dying. It's nothing like you see on TV. It's 1000 times worse. It's not comforting when the doctors tell you they can't pinpoint where the seizures are starting, and that they seem to be coming from everywhere. It's not comforting to know your child's medication might soon be changing, because of how it's affecting his organs. I can barely send B to school without a panic attack, so imagine how difficult it is for me to even think about letting him sleep alone. 

I know B deserves a normal life. I know he should be able to sleep in his own bed. I don't want him to be sad, or feel different, and I wish my anxieties didn't get the best of me. It's just a scary thing, letting go. I need to find a way to do it so that we are both happy, or else I'll just end up sleeping in his tiny, Ikea bed with him, and that's not ideal, either. 

Saturday, January 18, 2014

The Middle

I don't believe vaccines cause autism, but I also don't consider autism a gift. I fall somewhere in the middle. A place where killing your autistic child is always, without excuse, WRONG, and a place where trying to force all parents to believe that autism is just a difference in neurology is also wrong. I sit in this middle chunk of belief, where hate doesn't exist, because these are our kids, and it just can't, but where the struggles are real. For both parent and child (I know, I know, parents don't matter, except they do.)

Sometimes I find myself skating the thin line between two extremes. Mostly because I have friends on both sides. People I love and admire, even if we don't always agree. Sometimes when I speak up about my own beliefs, I end up feeling guilty, because I truly never want to offend anyone. I hate thinking people are angry with me, to a fault.

However, because I try to avoid taking a side on some things, or immediately try to soothe someone I offend, I lose my own voice in the process. I've realized that as much as I try to appease those around me, this action isn't always reciprocal. If someone doesn't care about losing me as a friend, why should I bend over backwards keeping them happy? Because, honestly, when you're the only one trying to keep the peace, well, jokes on you, right?

Of course, there are things from which I don't back down, even now. Murder. Restraints/Seclusion. Abusive therapies. I just need to learn how not to back down on everything I believe. If I lose friends, I lose friends, but hopefully I'll gain respect, too. And confidence in myself.

Wednesday, January 15, 2014

Not Sorry

I've been blogging since K was a baby. At first, I was just a typical mommy blogger. I chronicled our daily trips to Target, playdates, and other inane things. I had no "cause" at the time, and so it served as a way to keep family updated when we lived in another state. After K was diagnosed, it slowly turned into an autism blog. I discovered Twitter, met a lot of other parents, and started blogging about life with an autistic child.

It was rough in the beginning. I wanted any other life but the one I'd been handed. I wanted a cure. I wanted my dreams back. I can't say I'm proud of the blogs I wrote those first few years, but I don't really regret them. They were my truth at the time. My blog connected me to a lot of fabulous people, with whom I developed good friendships even though we never physically met.

I won't lie. It was nice to commiserate with other parents about my daily struggles. To know I wasn't alone. To have a support system, when I felt like I was falling into the deep, dark pit. I was desperately trying to find my footing in this new, unexpected life, and social media helped.

From the beginning, I befriended other parents who weren't exactly like me. Who tried autism therapies and treatments that I did not. There was a time we were thisclose to going down the chelation road, but I read about a child dying from it, and quickly crossed it off our list. I knew there was a whole world of "stuff" out there, when it came to autism, and unless someone was downright abusing their kid, someone having a different path than us never bothered me.

We never did GFCF, but I had many friends who did. We never saw a DAN doctor, mostly because of the cost, and me wanting a "for sure" cure before going broke. But I knew people who said these types of treatments really helped their kids, and who was I to discount that (and because of B's medical issues, biomedical treatments are something I have thought about recently. Who doesn't want to ease their child's physical symptoms, related to autism or not?)

I knew people who did ABA and Floortime. Those who homeschooled, public schooled, and private schooled. I knew people who saw autism as a gift, and those who saw it as a curse. But I also saw parents as more than that. More than just their autism treatment plan. As people who listened, who cared, who were good friends. Their particular belief system didn't have to match up with mine in order for us to have a relationship.

For me, however, there are some things I just can't abide. There is a line I draw that separates parents trying to do right by their kids, and parents harming their kids. Certain treatments that can only be viewed as abusive, at least in my own mind. I think we all have that invisible line, that point where we shift in our seats and get uncomfortable. When we hear about a treatment where the risks seem to outweigh any benefit. Things tried by desperate parents, who will believe any snake oil salesman that comes along.

I get the desperation. I was there once, myself. But, I can't get behind blindly following someone who claims they can cure your child, without doing any actual research, or stopping to think if death is a side effect you can accept. And, obviously, murder is something for which I will never make an excuse. But I've made that clear on this blog before.

So there's a line, but up until that line I don't really care what you do. As long as you aren't harming your child, based on my personal opinion of harm, we can be friends. Unfortunately, this isn't true for everyone. I learned this lesson recently when I came up on the receiving end of the "blocked" function on Facebook.

Honestly, I am surprised I am not blocked more often. I don't mind giving my opinions on social media, or this blog, and that means there is always someone who might get offended. Someone who doesn't agree with me on a particular issue, and not being able to move past it hits the block button without a second thought.

But, even I don't block people, because if I blocked everyone I don't agree with (due to religious views, political views, or autism views), I would have very few, if any, friends. I always joke about how controversy is never ending on my personal Facebook page, but that's only because I have a diverse group of friends...who like to fight with one another. But what's life without diversity, right?

But, getting back to my point, there are some who unfortunately cannot handle when someone disagrees with them. I think that when you post something on Twitter or Facebook, or write a blog, you need to understand there will be those with different opinions. Being active on the internet means having a thick skin, especially if you are trying to parlay your internet presence into a career (I am not, and there are times my skin is very thin, but then blogging isn't my life/job, so it's not a big deal.)

I guess it just shocks me when someone decides they can only surround themselves with those who believe exactly as they do...about anything. Some of my closest friends differ in their opinions on autism (and many other things), but that's OK, because I see them for who they are...good people who have impacted my life in a positive way. Whose children I cheer for when they succeed. Whose shoulders I cry on when life gets rough. Whose friendships I value, even though we aren't the same person.

Life is too short and too precious. We are never going to agree on everything, no special needs community ever will, but we must be there for one another. Sure, we all have that line in the sand, but I think it's important to examine where that line rests. The last thing we need is another reason to fight.

So, am I sorry I got blocked? No. My true friends accept me for me, and understand we can be friends without being on the exact same page. For them, I am truly grateful.

Thursday, January 9, 2014

Target, Ambulance, Anxiety, OH MY!

So, last weekend was...interesting.

I'm just getting around to blogging because it has taken me this long to finally feel like myself. And to believe that, OK, I'm probably not at death's door.

Saturday started out normally. K was going to sleep over my mom's house, so B and I planned a special night together. By special I mean we went to Pizza Hut, after I convinced him that, yes, Pizza Hut pizza and Target cafe pizza are one in the same. He had a Book It! award to use, though I had to promise that we would immediately go to Target if, in fact, the pizza was not the same.

I don't love Pizza Hut, but when asked to choose any restaurant he wants for dinner, B will answer one of two things: McDonald's or Target. Forget eating real food, he will only be happy at these two places. So off we went.

Dinner was fine. The place was pretty empty since no one actually dines in at the Hut. Ben was very happy to find his meal of bread sticks and pizza were as expected, and I was having a good time hanging with my kid, and listening to his stories. We had plans to actually hit up Target after dinner, so he could return a Christmas gift and choose something new (let's just say Transformers Construct-a-Bots are not as fun as they look.)

On the way to Target my stomach started bothering me, but, you know Pizza Hut, so I really wasn't concerned. We returned the Transformers, looked through the Dollar Spot (where B chose 2 "grabbers"), and headed to the toy section. After a few minutes there, I started to feel weird. I can't really describe the feeling. At first I thought I was just tired, but then I got really hot and felt like I was going to throw up and/or pass out.

Passing out in public is not an option for me, so I told B there was an emergency and we had to go to the restroom. Thankfully he put down the toy he was looking at, and didn't argue. I figured I'd sit down for a few minutes and feel better. I had probably gotten overheated, and a little dehydrated, and just needed to rest.

Unfortunately, I didn't feel better. We abandoned our cart (B was very concerned about this), and headed to the car. As soon as we got there, I started feeling really bad. My heart was racing, I felt incredibly lightheaded, and my upper back started to hurt. I called the husband and asked him to please come pick me up, because I didn't feel safe driving home. I wasn't sure what was wrong, but thought maybe the dreaded Norovirus was upon me, since I heard that can hit you pretty hard just 8 hours after you're exposed.

After about 10 minutes I started getting scared. My back was killing me, and I was convinced I was having a heart attack. I've felt faint before, but never like this. I felt like I was slipping away. That if I closed my eyes, I'd never wake up. Like I was dying. Obviously, I've never died, so I can't say what dying feels like, but I imagine pretty close to this. I called my husband back and told him to hurry, and that I was thinking about calling 911. Then a few minutes later I called back to tell him I was calling 911.

I was scared to death I was going to die right then and there, with  my 7 year old in the car, in the parking lot of Target. My whole body started to feel numb, and I thought my heart would beat right out of my chest. I sat there taking deep breaths, willing myself to stay awake. Finally my husband arrived, and what seemed like years later, so did the paramedics.

The paramedics...well, they needed some sensitivity training. I understand I am 36, and not morbidly obese, so maybe I don't look like someone who would have anything serious wrong with her, but I sure felt like I did. Not wanting to take me to the hospital when I am thisclose to passing out, my heart rate is 140,  I have squeezing back and chest pain, and can't breathe, is not OK. They seriously just wanted to sit in the parking lot and decide if I really needed to go. I told them the hospital I wanted to be taken to, and they acted surprised, as though I was going to just hop out of the ambulance, totally fine, if we just sat there a few minutes.

Now, maybe that happens. I don't know. But I was scared, and in pain. It took forever to get to the ER, as they didn't use their lights. It's awesome feeling like you're knocking on heaven's door, while the paramedics look at you like you're a headcase. At one point the guy in the back with me suggested that maybe I just pulled a back muscle. I immediately regretted calling 911, and wished I had stuck to my plan of just having my husband drive me to the ER. We would have gotten there faster, anyway.

But, whatever, I guess being compassionate was above their pay grade.

Long story short, after several hours in the ER, I didn't really get any answers, except maybe a kidney stone they found on the CT scan somehow triggered this whole reaction. I told them I doubted it, as I have kidney stones a lot, and the pain I was having wasn't in that area (plus the stone was really low.) They did a chest X-ray, and a lot of blood tests, which thankfully came back fine. Of course, not before the doctor came in and asked me if I'd ever heard of a bunch of different diseases, and mentioned sometimes if you have cancer, the tumor can throw a clot and cause you to feel similar to how I was feeling. So, that was awesome. I kept getting waves of dizziness and nausea, as well as a heart rate that refused to drop below 135, but the doctor decided I was fine to leave with some Ativan and a prescription to help move the kidney stone along.

I've never taken Ativan, or any anti-anxiety drug, and it wasn't what I imagined. I still felt anxious, but my body couldn't physically react to it. They gave me a dose in the ER before I went home, and at least my heart rate went down to 112, I guess. Good enough for a discharge.

I really have no clue what happened that night. It took me a few days to feel better, with today being the first day I felt like myself. I think I might have gotten really dehydrated (brown urine, anyone?), which triggered me feeling lightheaded and sick, and then maybe the anxiety kicked it all up a notch. Who knows. At least I know I'm not dying of (insert random diseases ER doctor threw out), and I didn't have a real cardiac event. I just know I never want to feel that way again.

I am taking it as a sign that my body needs a break, though, and that I need to take care of myself better. It's too easy to get caught up in the kids, and your spouse, and everyday life, that you forget to check if you're running on empty. Feeling like you're dying (even when you're not) is scary as hell. I realized I need to be healthy for my kids. Taking care of myself is probably one of the best things I can do for K and B, and Saturday night really drove that point home.

I don't do resolutions, but 2014 has to be the year I really start taking care of myself. Making that doctor's appointment. Eating better. Managing my own anxiety. My kids need me, and I want to be there to see them grow up. Even if I am the headcase the paramedics seemed to think I was, I'm the only headcase my kid's have.

Thursday, January 2, 2014

It's OK to Have a Bad Day

Lately, I've been trying really hard to find the silver lining in everything. I tend to be a glass half empty person, just by nature, and so I work hard to see the positive side of things. A lot of the time it's easy. A lot of the time, since I don't allow myself to be felled by something not going the way I imagined, I am able to find the good in our Plan B. Or just letting go of all expectations and finding something that makes my girl happy. I was able to do that Monday when we took a trip to the aquarium, and K literally lasted 2 minutes. We are talking she walked in the door, and then back out. I left B with the husband and my sister-in-law, and K and I trekked over to a nearby (almost deserted) carousel, where she could ride to her heart's content, and come back from the brink.

Was the plan to spend some family time at the aquarium? Yep. Did I care that K and I had to make a quick escape? Nope!

That time away allowed us to return to the aquarium (which had thankfully gotten LESS crowded after our carousel trip and snack stop), and K had no issues.

                                                It's fun to try and open all the touchscreen things at once!
 Eskimo kissing a baby seal on the screen. Almost too much cute.

She was having fun, and was happy. B was having fun, and was happy. All that matters!

We even all went back to the carousel after, for a couple more rides.

But then Tuesday happened.

K had been asking to go ice skating for a while, so we decided to go New Years Eve day. Now, I am not a skater. My feet hurt almost immediately upon putting them in skates, and I am not known to be the most coordinated person. Still, the kids were excited, so we all went.

At first things were OK. K was having a bit of a difficult time, and falling a lot, but was handling it well.

When things were still OK. 

B was a speed demon with his crate.
A speed demon who didn't exactly look where he was going ;)
When K was done, she was D-O-N-E. She wanted to leave the rink, but I told her she had to wait a second so I could tell daddy we were leaving the area. That request didn't go over well. To make a long story short, there was some scary bolting, some of me running outside wearing only socks, and a massive meltdown (K on the outside, me on the inside.)

I was pretty mortified. I know we're supposed to take it all in stride, and not let "the staring" get to us. I know we are supposed to be OK when things downhill, because our kids are autistic, and they aren't doing anything on purpose (K has told me through tears, before, that she can't control her body".) I know I should have stayed perfectly calm while trying to tear off my rental skates to chase after my kid, and I know I shouldn't have allowed myself to get angry as she stood there screaming at me.

I mean, that's what perfect parents do, right? At least that's what I'm told.

Well, I'm not perfect, so there was panic, and embarrassment, and anger, and me gathering our things to wait in the car until the rest of our party was done skating. There was me telling K I couldn't talk to her right then because I needed to cool off. There was me not being able to find any silver lining, and just wanting to go home and hide under the covers.

And of course I felt guilty. I did pretty much everything "wrong". I know there are some who wouldn't hold back on their attacks towards me because of the choices I made in the moment. I'm sure there's even one or two who would say I did some deep seated damage to my child's psyche. Trust me, those things don't even come close to plain old mama guilt.

It was just a bad day.


We're allowed bad days. They happen. Whether your have a child with special needs or not. Sometimes there just isn't a silver lining, and no way to salvage what happened. Sometimes everything goes wrong, and the day just sucks.

It doesn't make us bad parents. Not in the least. We love our kids. We are great parents to our kids. We are also human. Having an autistic child doesn't give you superpowers. Sorry.

So, there it is. The honest truth. Sometimes you just have to pack it in and remember tomorrow is another day. And that's OK.