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. 

No. 

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. 

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.

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.

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.

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.

But...

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.