Friday, August 30, 2013

The Peanut Gallery

Before K was officially diagnosed with autism, I had people pulling me aside at every turn, sharing their opinion on "what was wrong". I was never at a loss for a book or article about autism. I had mothers pull me aside at playgroups, pointing out the things they saw, as though I didn't notice myself. The big A was on everyone's tongue.

These days I'm still pulled aside, but now it's people telling me there's no way K is autistic. Maybe she used to be? But not now. She just doesn't fit that classic picture. I should get her retested. 

She can seem so...normal. 

Except for the times she doesn't. 

Except the fact that two major hospitals have diagnosed her on the spectrum. 

Except for the fact that she couldn't handle the mainstream classroom, or even the self-contained one. 

Except for the fact that she perseverates over things to the point where her anxiety turns aggressive. 

Except for the fact that friends are few and far between, she's never had success at any extracurricular activity or sport, and these days she prefers to stay alone in her room, rather than interacting with me, let alone the outside world.

Except for the 1000 other things that point so clearly to a diagnosis on the spectrum. 

But, on her very best days, she can...pass? I guess to those who don't know her well. I always see it, though. Those close to her always see it. Those looking only for a classic, profound picture of autism? They do not.

Saying my child just can't be autistic isn't helpful. It doesn't make me feel better. It makes me feel like a failure as a mom. 

That's what people must think, right? Those who question the diagnosis. 

The thing is, I know a lot of kids like K. They fall at a similar place on the spectrum. Our brand of autism does exist. It's real. It's challenging. It affects my girl every second of every day. It always has. 

Why people care so much? Why they want to disprove the diagnosis so much? I don't know. I'm tired of people questioning me. I'm ready to start handing out the names and phone numbers of our doctors, telling people to direct all comments to them. 

Autism is a spectrum.

Autism in girls can add an extra layer of tricky. 

But it's autism. Trust the person who has been there from birth. Who's seen it all. Who knows. 

Funny enough, no one questions B's diagnosis. But, he's a boy, so I suppose it's more believable? His behaviors aren't "dramatic", they're "autistic". 

But this is our life. Two kids, two autisms, and one mama bear sick of the peanut gallery. I've accepted my children for all they are.

Wonderful children who happen to be autistic. 

Friday, August 23, 2013

In Knots

It's barely 7am and I've already downed Excedrin and Zantac.

It's been a week.

Monday, B had a repeat EEG. Sleep deprived. Because we switched neurology practices, they wanted to do their own testing. I wasn't really excited about the prospect of another late night/early morning, but at least the new practice allowed 5-6 hours of sleep, as opposed to four.

I let B sleep until a little after 5am, after going to bed around midnight. We had already planned ahead of time that he would take a bath when he got up, because he said that helped the last time. He wasn't interested in eating breakfast, so I packed snacks, and we left the house at 6:30.

The hardest part of a sleep deprived EEG is trying to keep your child awake on the way to the hospital, especially when you live an hour away from said hospital, and that is with no traffic. Even leaving our house at 6:30am guarantees at least 30 mins will be added to the commute.

On the way to the first EEG, B stayed awake on his own for about half the ride. On Monday, I had to start yelling, and singing badly, and tickling his leg, before we even left town. He is not a fan of being kept awake, so the yelling went both ways.

Then, about 30 mins into our ride, he became silent. I looked in my rear view mirror, and (insert expletive here), he was having a seizure.

Of course we were on the highway, with no good place to pull over, so I booked it to the next exit. I tried timing the seizure, but my iPhone is nearing the 2 year mark, so it has begun to fail me. The second I hit the clock app, it froze. I contemplated throwing it out the window, but held back. I closed the app, and opened the camera, hoping to video some of the seizure, since timing it wasn't going to work. Thankfully, the camera worked, and I was able to get a bit of the seizure on video before pulling off the highway (I basically just held my phone in his general direction, hoping I actually recorded something useful, since, you know, I had to face forward to actually drive).

After I pulled over, I basically just made sure B was OK. I stroked his head as he seized, whispered comforting words, and waited for it to be over. Please, please, don't let this one be the one that goes beyond 5 minutes. Taking him out of the car and giving him diastat in a random parking lot was not ideal.

Thankfully, he stopped seizing after a few minutes, and immediately fell asleep. I got back in the car and started driving, paging the on call neurologist as I drove. She called back after what seemed like an eternity, and I asked her what I should do. Go to the clinic for the EEG? Go to the ER? B was OK. Sleeping, but OK. She told me to just go get the EEG done. They'd assess him there, and send us to the ER if they thought he needed to be checked.

It felt like forever before we reached the hospital. All the while I was cursing the fact we live in the boonies, too far from civilization, and the fact that not enough people use public transportation to get into the city, clogging up the roads when I'm in a hurry! You know, the rational way you think when under a great deal of stress.

When we pulled into the parking garage, B woke up, and seemed OK. He walked himself into the hospital, and was tired, but acting more like himself. We were told the on call doctor was on her way in (she apparently wasn't actually at the hospital when we paged her), and we started the EEG. It was a breeze. B was so tired, he easily fell asleep, and I sat in chair next to him, trying my hardest to stay awake.

The EEG tech didn't make him blow on a pinwheel like last time, and said she wouldn't bother him with the strobe lights, either. He was exhausted, already had one seizure that morning, and we just wanted to talk to the doctor and go. She took all the leads off, and we were both trying to wake him up enough to go when it happened again.

She and I both noticed at the same time. B's head had turned to the side, and something wasn't right. Just as I looked up to tell her he was seizing again, she was already out the door to find the doctor. I guess we lucked out in a way. The neurologist was there to witness the whole thing. Sure, I had my video from that morning, but it wasn't long at all, and it's always good for them to witness an event themselves.

After the seizure was over, we moved B into a different room to sleep. The doctor went to speak to her attending, because she felt B needed to be admitted. She wanted to give him a big dose of seizure meds, to really raise the level in his system, and make sure he was OK. Of course, we had to wait hours for a bed to be ready, but at least we were in the hospital, just in case.

I called my husband, and asked him to come from work so that I could quickly (as quickly as possible) drive home and get things for us to stay overnight. He offered do it for me, but, well, he's a guy, and I didn't trust him to pack anything we'd actually need. I was also hanging by a thread, and needed control over something. 

Because B hadn't eaten that morning, they wanted to take advantage of his empty stomach and do a sedated MRI. Of course, that wouldn't happen until 6pm, so I felt comfortable running home. I'd be back in time for anything important. My husband showed up to relieve me (I think around lunch, and I only say that because our EEG tech was eating when I left. I really have no idea what time it was), and cursed all the way home, again, that we lived so far away (but at least no traffic this time).

About halfway home I received a text from my husband. B had another seizure on the way to his room.

I was still 30-40 mins from home, and just wanted to turn around and rush back. It took all my strength to keep it together, and not go 100 mph down the highway. Somehow, though, the closer I got to home, the more calm I began to feel. Yes, B had three seizures in one morning, but he was where he needed to be. I didn't need to kill myself getting back to him. I had to relax, gather our things, and keep my wits about me. There was nothing I could do about the fact we live an hour away from the hospital, but I'd be back there soon enough, and B was in good hands.

Of course, really, I was probably just in a state of shock. I had reached the period where you kinda go numb. Where your brain just turns off so you can muddle through. Whatever it was, it was better than the raging anxiety I had been feeling.

I got back to the hospital just in time to meet with every single medical student in the building. It wasn't awkward at all walking into B's room, and seeing him surrounded by a bunch of people, who all turned to stare at the same time (as I haphazardly carried every belonging we own into the room. I might have over packed). I think my husband was relieved to be let off the hook. Let's face it, he's a good dad, but I'm the one with all the answers.

B pretty much slept the day away, waking up a few times to throw up (no one knew why, and it started before they gave him the IV meds, so it's a mystery. Maybe just the stress of having 3 seizures in the matter of a few hours, and no food).

Child life came in, and brought him tons of dinosaur toys, which he loved when he finally woke up a bit. Especially this one remote control dinosaur (that is no longer manufactured, and which Amazon Marketplace wants $600 for. I am hoping I can score it on Ebay at some point, because, seriously, he loved this thing).

Ben finally started to wake up, and get back to his usual hyper self, right before his MRI, where they doped him up again. The MRI took about an hour, so I used the time to finally eat (I had been up since 4am, and had yet to even get a drink of water), and tried to relax. Once it was over, we sat in recovery for a couple hours (watching a doped up kid try to eat a thing ever. Brought some much needed comic relief to the day), then headed back to the room.

By that time B was starving, but of course it was around 8:30pm, and the kitchen was closed. I went to the 24hr cafe, where I attempted to get him a grilled cheese, but even though they had bread and cheese, the guy refused to finagle me a sandwich. So, s'more pop tarts and chocolate milk, it was!

Because B had slept all day, he didn't end up going to bed until around 1am, when I think the nurse took his iPad away and called it a night. I fell asleep well before that, as hard as I tried to stay awake. The next morning he was back to himself, and after another dose of IV meds, and a visit from a friend (thank goodness, because B was so bored he was climbing the walls), we got to go home.

His MRI came back fine, as did his blood work. Nothing glaringly obvious as to what is causing his seizures. We have an appointment with genetics Dec 3rd (which seems far away, but I'm told is actually great. There is a waiting list right now, so getting a date at all is apparently a miracle).

So now we wait. We wait to see if he has more seizures. We wait to see if his meds work. We just wait. We have an appointment with our pediatrician next week, and a follow up with neurology in a month. I hate no knowing why this is happening, but seizures can be such a mystery. For now B will continue to sleep with me, and I somehow have to find a way to be OK with him starting school. Every fiber of my being just wants him home with me, all the time. I just can't trust anyone else, even though I know I have to.

The fact that B has epilepsy is taking it's toll on him, too. Having to wear a life jacket whenever he goes swimming (but it's the shallow end, mom!!!!! Insert giant meltdown here). Having to quit gymnastics until we know things are under control (he might not be able to ever go back, since it's just too dangerous in case he was to seize). The fact that school will be different for him. He'll need to be helicoptered over, at least for a while. Yesterday he got really  upset over something, and said, I wish I never had seizures!!!

It broke my heart.

I wish you never had them, either buddy. It kills me not being able to fix what's wrong. But, maybe I can find him that super cool dinosaur, and make things a little more right in his world.

B, with the coolest dinosaur ever. 

Sunday, August 18, 2013

The Guts to Make a Change

We saw a new neurologist last week. Of course I second guessed myself 1000 times, thinking maybe I was just being "crazy" for wanting a new doctor. Maybe I had expectations that were too great. Maybe people thought we deserved special treatment, instead of waiting like everyone else.

Can you tell I struggle with self-confidence?

In the end, it all worked out wonderfully. We saw a new doctor who listened. Who sat patiently as I asked many, many questions. Who made me feel like I was part of the decision making process for my son. Who understood how scary it was for us. Who didn't make us feel bad about wanting to be seen ASAP (like a sit down less than 3 weeks after the abnormal EEG, and second seizure. Awful to want that, I know). Who didn't downplay what was happening, just because there are those who have it worse (it's not a competition).

He explained the EEG B already had (something the other office had yet to do, even though I pretty much begged for answers), and told us he did in fact have a seizure disorder. Welcome to the world of Epilepsy.

He discussed medication with us, and gave us options. He told us he'd be more conservative with the medication B had been prescribed (the titration period), if we wanted to continue with it, but also supported us changing to something else (we did). He told us they would do blood testing, just to make sure there wasn't a genetic component to the seizures, and to rule out other medical causes. He gave us paperwork for school right then and there. He ordered another EEG so he could compare the two, and decide if B needs a MRI, or other tests.

It was just a totally different experience.

I don't think we're special. I don't think we rule the universe, and how dare a doctor not want to talk to us right away. I just think we are scared parents who deserve a doctor to answer their questions. Something everyone deserves. I am glad I had the guts to switch practices. That I was able to put away the "too nice" part of me, and do what was best for our family, especially B.

I'm hoping this is just the beginning of me feeling more comfortable speaking up, and advocating for our family, in all aspects of life. Sure, not everyone will like it, but I guess all I have to say to that is...too bad.

The little dude is worth it. We all are. 

Tuesday, August 13, 2013

You're Fired!

I am too nice. It might not seem like it, but a lot of the time I avoid confrontation at all costs, and give people the benefit of the a fault. I don't want to be a bother. I don't want to make waves. I hate people being angry with me, even when they are at fault. Not that I don't get upset, I'm just really bad at speaking up. I have such bad anxiety, drama of any kind takes its toll. Of course, holding it all in takes a toll, too, but I just really hate fighting with people.

Today, though, the gloves came off. 

As you are well aware, we are trying to navigate this new world of seizures. We chose the neurology department we did because they are associated with the center B was diagnosed with Aspergers, and it's also the same hospital that's affiliated with his GI. I like to keep things under one roof if I can. 

At first, I thought things were going swimmingly. We got our initial appointment just a few days after his first seizure, and ended up getting his EEG the day after his second (not that there wasn't some drama there, as the doctor made it sound like an emergent situation, until she called back and said there were no openings the next day, so it was fine to wait until the following week. Dear doctors, let me fill you in on something: once you say something is emergent, it stays emergent in a parent's mind. You can't come back and change your mind. Also, thank goodness for cancellations). 

I was promised a call back the same day as the EEG (a Friday), and that we would discuss further testing and the follow up appointment then. 

But the call never came, and I went into "too nice" mode. Ben isn't her only patient. I can't expect answers immediately (even if promised them). It's fine, I'll just wait...

Friends prodded me to page the on-call doctor Saturday, though, to get the results. I did, and was glad I did. I really wanted to know, I was just slipping into my "too nice" ways, and pretending I was fine waiting until Monday. 

Monday came, and the neurologist finally called. I had 1000 questions, but she didn't want to go into depth until we met face to face. The next week or two we'd be able to meet. She'd have them call me the next day to set up an appointment. 

Again, no one called. Twenty minutes before I was to leave to get the kids from camp, I called the clinic myself. After a very long time on hold, I was told we could come in Aug 26th. 

Three weeks away. 

Also, we had planned a much anticipated camping trip, and would be gone the 26th. But that was neither here nor there. The 26th was unacceptable. I was not waiting three weeks to get any answers, a school plan, or talk about further testing (which the neurologist already told me she wasn't planning...?).

Back on hold I went, after the very rude admin lectured me on when Attendings work, and how I wasn't allowed to see the resident without the attending there. Fine, I get that. I'm still not waiting until 2 days before school starts for an appointment, though. 

After another 20 minutes, I'm told the best they can do is the 23rd, with a totally different doctor. By this point, I had already decided I was transferring to another hospital, but I politely (or maybe no so politely) thanked her and hung up the phone. 

Maybe my expectations are too high, but my kid had 2 grand mal seizures in a week, and I want to pinpoint where they are coming from (if possible), why they are happening (if possible), discuss medication choices in detail, and do further testing. A MRI. Extended EEG's. Heck, I even want genetic testing done, because I know our insurance will pay for it, and I want to cover all bases. What I don't want is to float around in limbo until the end of August, or September, even, because "that's just the way it works". 

It would be different if the doctor was willing to tell me anything over the phone, but she's not. I don't know why. I don't know if that's common practice. The fact that I can't get one teeny question answered without a face to face means I better get that face to face ASAP.

What it boils down to is that I'll never be happy with this practice. They don't care about their patients the way they should. They don't care that parents, brand new to the world of seizures, are scared and can't wait almost a month to talk about...anything. 

Thankfully, I have great friends. Great friends who have experience with this, and who call their neurologists to asks what they can do for me. Who explain B's situation, and ask when we can be seen. 

So, now we have a plan. I've already left a detailed message for our pediatrician, who only needs to call the new hospital and say B needs to be seen in the next week or two, and they'll fit us in. Unlike our current practice who won't even go out of their way to feign niceness to a scared mother. 

So, Massachusetts General Hospital (yeah, I'm naming names), you are fired. I will tell friends to look elsewhere when their child needs a specialist. No one deserves to be treated the way we were these past couple of weeks. Maybe seeing another kid with a seizure disorder is no big deal to you, but it's a big deal to that kid and his parents. At least learn to fake concern. 

I'm glad I found the strength to stop being nice. This is my kid we're talking about. I'm done being nice. 

 I’m not ready to make nice
I’m not ready to back down
I’m still mad as hell and
I don’t have time to go round and round and round
It’s too late to make it right
I probably wouldn’t if I could
‘Cause I’m mad as hell
Can’t bring myself to do what it is you think I should

                                                    -Dixie Chicks

Monday, August 12, 2013


These past two weeks have been hard. It might get harder. But what's made everything a little bit better are the friends who have been there for me. Friendship isn't measured by material things, but by kind words, advice, and patience. These things have overflowed from people I know in real life, and in my little cyber-village. I cannot find words to express how grateful I am to have people who truly care. Who have spent their own, valuable time helping me through. Who leave comments, and send messages, and let me know we're not alone in this. Who offer to hang out and just talk. Who've put aside their own worries to make sure we're OK.

Sometimes, I get stuck in the "why me" of it all. What did I do so wrong that it sometimes seems we live Murphy's Law? But, really, I must have done something right to have such a great support system. Such positive, loving people in my life.

So, thank you. You've taught me about true friendship these past couple of weeks. I am forever grateful.

Sunday, August 11, 2013

Dizzy With Worry

I paged the on-call neurologist yesterday. I didn't want to wait until Monday to hear B's EEG results, and I had a great friend (see her blog here) give me the push I needed to make the call (sometimes I'm way too nice, and I really have to change that, in all aspects of my life).

The results of the EEG? Abnormal, with seizure activity. Not surprising, I suppose, but I was holding on to that last shred of hope that this was all some giant fluke. The neurologist apologized profusely for no one getting back to me Friday, and told me he would make sure our actual doctor called me first thing Monday (if she doesn't, she's getting a page).

So, what does this all mean? Well, first and foremost it means I can't leave Ben alone. He had two big seizures in a week, and now I feel like we're just waiting for number three. The medication he is on won't work right away, and the dosage he is on is so low, I doubt it's useful at this point. It takes two months to reach the full dosage, so from now until then, I'll be sitting on pins and needles just waiting. He pretty much has to be with someone at all times, which he hates, but is necessary.

This week B is supposed to go back to camp. He was only there two days last week, because of doctors appointments and seizure #2. He really, really wants to go back, they are fine with having him there, but I am 100% not fine with sending him. Camp is a long day, from 9am-4:45pm. We are in the car at 8:10, and don't get home til around 5:30. My brain is screaming at me that the chances of him having a seizure at camp is too great. While I know they are perfectly capable of handing it, should it happen, I don't want it to happen when I'm 45 minutes away, and he's with people who are not me. I haven't made any final decisions, but it's going to take superhuman strength to let him go...

A big part of me says until we have seizure control, and really know what's going on, it's irresponsible to send B anywhere. I mean, even today, a gorgeous Sunday where we have no plans and could do whatever want, I find myself just staying home because, what if. 

Two seizures in eight days. Abnormal EEG, showing seizure activity, even when he looks fine. What if seizure #3 is just around the corner?

Yes, we are not the first family to deal with this, but it is my first time dealing with it. Things have changed so much since last week, when we thought (hoped) the whole thing was just a one time deal. I feel like I'm armed with very little information, and that doesn't feel great. The sooner we can get another neurology appointment, the better.

This is a big change for our family. It's going to take a while to work through it all, and get to a place where I'm comfortable even going to the bathroom without eyes on B. Where I don't wake up and go to bed scared.

Where I find peace with our new, new normal.

Saturday, August 10, 2013

Two in Eight Days

I was just about to let B sleep in his own bed. He was over sleeping with mommy, and my husband was over sleeping with the dog. I was finally starting to relax a teeny tiny bit.

Then Thursday morning happened.

We were on our way out the door to camp. K had a "camp out" that night (kids 7 and above get to sleep over), so the kids ran ahead to get in the car, while I gathered all her stuff, and made my way downstairs.

Suddenly I heard a someone banging on the sliding door at our deck. I assumed one of the kids forgot something, or fell and needed a band-aid (because usually when I tell them to go get in the car, they take it to mean run around the yard). I then heard my husband start running, right as I exited the basement and walked into the garage, where I saw Ben, laying on the driveway, next to my husband's truck.

At first I thought he had just fallen down, but then I saw him convulsing. Exactly the same as the Wednesday before. Another grand mal seizure.

I was better this time, knowing what was happening. I kept my wits about me. I made sure he was safe, and spoke soothingly to him. I told my husband it was pointless for us all to go to the ER, and for him to drive K to camp, and I'd take B. I told him to reassure K, who had been witness to the seizure this time (and who apparently listened when I drilled into her head 1000 times to tell us if Ben started acting weird).

We went to a different ER this time. One affiliated with our pediatrician's practice. I talked to Ben the whole way there, asked him to squeeze my hand, and called my husband, reminding him to please, please reassure K. I was worried about her, too, but knew camp was the right place for her (it's a camp for kids with special needs, 1:1 ratio, they would also help her process what happened. She wouldn't have to sit in the ER for hours. It was the right decision, and she had a great couple days there).

The ER doctor ended up calling our neurologist to let them know B had a recurrence. They took blood to make sure his glucose levels were OK (a seizure can make your blood sugar drop, but the two pieces of Nutella toast B had for breakfast weren't  letting that happen). They watched him to make sure he didn't have another seizure right away. Made sure he came out of it. Same as before.

After several hours we were allowed to leave. B was back to himself, remembering nothing. He asked to immediately go to the store to get the new toy I promised (he has been incredibly spoiled this past week, and I'm completely unapologetic). I slowly started to realize the gravity of two seizures in eight days. What it meant. That we were really in it, now. We weren't lucky enough to be in the "one and never again" club.

The neurologist's office was able to get him in for a sleep-deprived EEG Friday morning, and the doctor called me Thursday night to tell me they'd be starting B on medication. We'd discuss further testing after the EEG was complete. Our pediatrician called me yesterday to go over everything that happened. She was in shock B had another seizure.

Aren't we all.

So, that's where we are. Right now I am just waiting for the EEG results. I had hoped the neurologist would call yesterday, but she didn't. I sent her an email this morning (she'll regret ever giving me that!). I know we aren't her only patient, and I know test results don't come immediately, so I won't page her and demand an answer. There's nothing we can do over the weekend, anyway, and we already have medications and instructions, in case anything else happens. I'll page her Monday morning, if it comes to that.

The medication B was prescribed takes six weeks to reach full dosage, so I'll be on pins and needles waiting for another seizure. Plus, I know these meds don't work immediately, anyway. School starts August 28th, and I'll probably take over transportation to and from school. I don't want B on the bus, and I am not even sure I want him on a special education van, just because we only live about three minutes from the school, and he could end up on the van for 30 mins or more, having to pick up/drop off other students. I want him home with me as much as possible.

We meet with the school nurse before school begins, too. I told the neurologist to provide a detailed seizure protocol, and I'm sure we'll have to add accommodations to make sure B is never left alone. He will have a 1:2 aide, anyway, but he can't be walking around the school alone, or be allowed to play on the playground equipment without being watched. I am hopeful the school goes along everything, and I can send B to school feeling as comfortable as possible (which, admittedly, won't be very comfortable at all).

Not exactly how I wanted to spend our summer vacation, but that's life. Always unpredictable. I'm just hoping this upcoming week is very, very, very boring.

Wednesday, August 7, 2013

My Truth

I've been working really hard lately to focus on the silver linings. Always looking ahead. Letting go of grudges.

But, sometimes, it's hard.

Here on the blog (well, blogs, since this isn't my first rodeo. See thee "about" page), I've always been really open with our lives. I've always been honest that I have two, "high-functioning" kids, and honest about how that means nothing in the midst of a rage-fueled meltdown, the lack of friends, or the myriad of other things that come along with autism.

But, our autism, heck, the two different "autisms" we deal with in this house, are just that. Our "autisms". I don't know what profoundly affected folk go through. I don't know what it's like to see autism as only a gift. I've made that clear many, many times. I speak for us, hope some people get something from my writing, but know we all walk different paths.

I also try really hared to remember other people have their own stories. Everything is relative. What's awesome or horrible to you, could be the total opposite to someone else.

But, sometimes, I feel bitter. Probably a bit jealous. I read blogs/status updates/Twitter feeds where someones worst day would be a welcome change here. I think to myself, if that is the hardest thing this person/family goes through, they should consider themselves lucky.

The thing is, I don't know the inner workings of people's lives. A lot of the time, what is shared is only part of the picture. Some people don't want to reveal the really bad days, because that might make people uncomfortable, or they deem it too private. On the flip side, there are those who don't want to share the really good days, because that might make them look like they don't belong in the "club".

Some people just want to appeal to the masses, so they mold their stories so that as many people as possible can relate. When it comes down to it, how often do we meet the person on the other side of the computer in real life? We are in complete control of how people view us, and our children, when they log on. Some might manipulate what they write to draw you in, because page likes, or followers, are the end game.

For me, well, I want to be me so much, I've gotten into heaps of trouble staying true to myself, and our story (remember that "about" page?).

So here I am...a middle-class, stay-at-home mom. We aren't rich, we aren't poor, but we are lucky to have the means (most of the time) to fight for our kids. We live in a big house, bought before any diagnosis, and before most of our disposable income went towards all things "autism". Our house is large, yet in dire need of updating, new carpets, and a good power wash. All our belongings are still a mish-mash of what my husband and I brought to our relationship, which sometimes makes me feel less like adult, and more like I'm living in a dorm. My marriage isn't perfect, I can't cook to save my life, and I am proud the one day of the week my house is actually clean. Sometimes I yell at my kids, and sometimes I can be a crappy friend/wife/insert anything else here. I'm a nervous nellie, and loathe confrontation to a fault.

But, I love my family, would do anything you ask of me, and try really hard to be worthy of the oxygen I breathe.

I am constantly pursuing happiness, and trying desperately to shed my "Yankee" negativity (a term from my college days). In my younger years, I went through some hard times, homelessness, helplessness, and the fear of that happening again drives me now. I'm probably not exactly like you, and might be the polar opposite of you, but I appreciate everyone in my life, real, and virtual. Those relationships get me through.

I guess I just wanted, no needed, you to know that I'm just a regular person, trying to connect through my little blog. I'm not trying to make money, write a book, or get free swag. My goal has always been just sharing our lives, our journey, hoping that even just one person feels better knowing someone out there "gets it". I've always wanted connect with my readers on a more personal level (which, yes, has become more difficult this past year, with all the school-blog issues, but let's me honest, most of you probably know who I am). Because of this, I've made great in-real-life friends. Heck, I've made great cyber friends! (READ THIS. That awesome gymnastics Dora...found for me by someone I know only online, and shipped across the country for me. See...that's what I'm talking about). 

So, thanks for reading. It means more to me than you'll ever know.

(P.S. Let me know if I can ever find you a cool gymnastics Dora, too)

Tuesday, August 6, 2013

The Worrier (not Warrior) Mom.

I don't want to be that person. That person who acts like she's the first mother whose child has ever had a seizure. Like the (super annoying) women who act like no one has ever been pregnant before them? Yeah, that's not me. B having a grand mal seizure was, is, a big deal to me, but I know there are people who deal with this kind of thing every day. Who deal with worse. I am big on putting stuff in perspective, so I just wanted to get that out there.

Of course, this is my blog, and in my tiny corner of the universe, I'm scared. Scared that B's seizure wasn't just a fluke. Scared that his sleep deprived EEG will show something. Scared that his life will be limited in some way because of epilepsy. I'm his mom, it's almost like the worry is out of my control.

We met with a neurologist yesterday, who asked the same questions as the ER doctors and pediatrician. Who really wanted there to be a trigger. Sleep deprivation? Dehydration? Illness.

And so badly I wanted to tell them there was. A simple explanation for why my son's brain suddenly went haywire. The, some kids just have one seizure, never to have one again, loses a bit of weight when the look on the doctor's face doesn't match her words.

It was two hours of a lot of talking, and a little neurological testing (jumping on one foot, checking reflexes, etc).

The doctor told me that eventually I will relax, allowing B to sleep alone in his own bed. I'm sure she's right, although last night was not that night. Maybe when the image of him on the floor begins to fade, or not to hurt so badly, although more likely I will just force myself to let go. He likes his own space, his own room. My husband would like to come back to bed.

I am sure there are many parents who would deal with this better. I'm sure there are those who sit in judgement of me for being such a worrier. People sit in judgement of everything, these days. I am sure there are those who think my new found hermit-ness is ridiculous, too. But, it is what it is. We all deal with things differently. That's just reality.

Today, though, I shall focus on the fact that B gets to finally start camp. A camp I am 100% confident in, when it comes to caring for my child. He'll get to have fun, without helicopter mom watching his every move. Will I be tied up in knots the every day when he's gone? Maybe. But I'm his mom...that's just what moms do.

Sunday, August 4, 2013

I Shall Not Admit Defeat!

It's been a week. Or, really, a week and a half. Forget waiting for the other shoe to drop. I think sometime this week I looked up and 757 shoes came raining down.

But, as K's therapist's would say, that's glass half empty thinking, and that won't do.

It all began when I got into a fender bender the week before last. Apparently a red light doesn't mean the same thing to all people, and the woman behind me figured she'd use my car to stop, as opposed to her brakes. She looked at my broken bumper and told me to just get some glue. She didn't want to hear the person in the car with me had whiplash, and decided the best thing to do was jump into her vehicle and drive away. From an accident. Because, you know, why not?

One 911 call later, I filed a police report, called the husband, and had my poor car towed. Thankfully, I now have it back, so I can ring in 200,000 miles as planned. I mean, I am a little over 198,000. I was not happy thinking I might not get to reach the next milestone. It's the little things.

We are not a one car family, but someone, who shall remain nameless, thought he'd save a few bucks and not add rental car insurance to our policy. Let's just say, it's being added now. I always had this idea in my head that we could ditch a car, and just share one to save money. A lot of people do that. We...are not these people.

So, we're cruising along last week, and then Wednesday happened. Let me start by saying I am very thankful my husband decided to work from home that day. I am not thankful I put off taking a shower...

After getting K off to school, my husband, B, and I slept in. It was the one day that week I had nothing to do. We got up around 9:30 (yes, 9:30...I know some of you are murdering me in your heads), I made B breakfast, and while he ate I checked my email (and, OK, probably Facebook and Twitter) in the other room.

One second I hear B talking to our dog, and the next I hear gurgling. Gurgling that I thought was caused by him making a mess with his chocolate milk.

Don't I wish.

I walked into the kitchen and found him on the floor. Drooling. Convulsing. Not responsive in the least. I called (screamed) for my husband, and dialed 911 (two 911 calls in a week is not my idea of a good time).

My kid was having a seizure.

Seizures are not something we've ever dealt with. Quite frankly, I thought we had dodged that little autism bullet (if it is at all related to autism). It was the scariest morning of my life. I literally thought my kid was dying. It took him a long time to snap out of it. He even lost speech for a while. Thankfully he remembers nothing, thinks it's cool he got to ride in an ambulance, and thought the ER was fun...they had saltines and ginger ale. Party down.

I really don't think paranoia begins to describe how I've felt since. I don't want to leave him along for 2 seconds, and have forced him to sleep with me all this week, thereby forcing my poor husband to the couch (but he has a dog to snuggle, so don't feel too bad for him).

I've tried not to Google grand mal seizure. I've tried convincing myself that B might be one of those kids who randomly has one seizure, then never again. We thankfully got in with a neurologist tomorrow afternoon, and I am anxious to just get on with it...whatever "it" might be. I am sure there will be EEG's and tests...protocols for school and camp...I just want all our ducks in a row. I want to know what to expect. I want to know more than I know now.

And I never want to see my child like that again.

Some other, personal stuff went on this weekend that I'm not at liberty to share, but all in all, I've had a lot on my mind, and am ready to hibernate for the winter. I am thankful for some friends and family who understand that I am currently half-human, and who are giving me the time to live in my own little world. Pretty much all I can muster is being a "mom" right now (so, I guess I'm thankful for an understanding hubby, too).

The one light in all of this is that last week we secured a permanent school placement for Katie, which is huge, and wonderful, and takes a giant weight off my shoulders. Not that the universe needed to replace that weight, but that's life. I'm glad K will remain somewhere she is happy, and thriving. One hurdle down, a zillion to go.

But, these past couple weeks have put a lot into perspective. Life is short. Anything can happen. I'm in control of pretty much nothing. So, the things I can control, I will. I need to make sure my family is happy. I need to make sure I am happy. I need to be selective with those I let into our lives, and not live in that glass half empty way. In the end, we are all responsible for ourselves, our actions, our decisions. How we choose to live. What is important, what isn't. What stress is necessary, and what can be left behind.

(Blah, blah, blah, etc, etc, etc, please stop waxing philosophical, says the audience, eyes rolling).


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