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. 

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 Popsicle...best 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. 

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. 

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 doubt...to 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

Gratitude

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.